65d6273d

X account closed @difficultparent

Mon, 16 Mar 2026 19:02:38 GMT

We have not used the X account @difficultparent since December 2023

Statement regarding the @difficultparent account

For clarity, we want to place the following facts on record.

The X / Twitter account @difficultparent was deactivated by us in December 2023 . After the platform’s standard 30-day deactivation period, the account was permanently deleted .

Because the handle was no longer available, a different account @difficultp21985 was created in August 2024 . The last post from that account was on 8 September 2025 . Since that time we have not used social media .

It has recently come to our attention that the handle @difficultparent has been reused by another account. We want to make this absolutely clear:

Any posts or activity from the account @difficultparent are nothing whatsoever to do with us.

We have no control over that account and have not operated it since it was deactivated in December 2023.

An apology: SEND is nowhere near as bad as NHS-funded Continuing Health Care

Tue, 25 Mar 2025 11:58:59 GMT

We are SHOCKED the NHS is simply throwing away tax-payers money!

How bad is bad?

Agreements mean nothing, words change meaning, threats, bullying and interruptions are all business as usual when we deal with the North Central London Integrated Care Board Continuing Health Care team.

We are pretty much used to the behaviour of Haringey SEND department and have very low expectations around that and have developed strategies to cope with the behaviour.

Twenty years of experience (forty years if you think there are two of us) dealing with the maladministration of Haringey Council was no preparation for this NHS team:

The NHS team ignores emails from the Local Member of Parliament and the Secretary of State for Foreign, Commonwealth and Development Affairs, David Lammy (good luck on the global stage)
Six weeks ago the NHS sent us a care plan for holiday care (15 hours 1-2-1 plus 7 hours 2-12-1 daily
Last night threatened us saying we cannot access these care arrangement because they have 'no planning' for said arrangements.
Although the NHS have commissioned 150 hours of care a week with a Nursing Agency, I checked this morning. with the Director of Nursing at the agency.

The threat the NHS has made is to pull all home care if we do not meet them within a very short time period (less than a working week), but are paying an agency for 150 hours of care a week - how is that Value for Money?

Vindictive bullying when a child dies

Thu, 28 Sep 2023 09:58:14 GMT

About 3 or 4 times a year we get the euphemistic message 'Parents please note we have put a letter in your child's bag' - its a world away from how a child's death was handled in my child's first school

Loss in our close knit school community

My son has a life limiting condition, as do many of his contemporaries at school. This is the reality of being a parent of a child with very severe disabilities and complex health and medical needs. Sadly, each year we loose members of our close knit school community.

The school has become quite adept at handling this loss. They have a well oiled protocol that swings into action and I am grateful for it.

From the outside, this is what it looks like.

The school is informed that a child has died.

We receive a notification on our phone "Parents, there is a letter in your child's bag this evening". So many of our communications now are online, through teams or email or apps that this notification is significant. There is usually a 'heads up' if its about a club or activity or consent is required, but these messages stand out for their lack of additional information.

The letters sets out the loss - I am not going into cold details, but the letter is sensitive and informative and compassionate.

We are told about the grieving arrangements in school. We are asked if would we like our child to take part. I used to say no. My son was so young and fragile and I was so protective of him. I didn't want him ever to pick up on fear or sadness or loss.

Lately, I have changed my mind on this. Remembering the loss of the precious lives of the people in our community is important and he needs to go and to grieve in his way.

A world away from the first loss

What we experience now is a whole world away from the first time I experienced a child in a school community dying.

Our son had not been 7 weeks at his first ever school. He had been put into Class 1 because there was no space in reception class.

I had taken my son into school as I usually did and a parent told me that a child had died in reception class. I was devastated. The reality of the world we now lived in, a small community where the smallest, youngest most fragile members might leave at any time was overwhelming.

We had a multi-discipline meeting for my son that day. Just before we went in I was approached and asked if I wanted my child to go into reception as a space had opened up. I asked "Are you talking about the child who has died". The reply was yes. I said that I would need time to process. The Deputy Head replied "I need to know in the next hour or I will offer the place to some one who wants it". I explained we were just entering an hour long meeting to be followed by another hour long meeting. She replied "OK, 2 hours then".

Bereavement protocols

Schools need bereavement protocols that swing into action when there is a loss in the school community. They need to be prepared for these inevitable events and have clear steps in place that everyone knows about and everyone is clear what is going to happen.

So that no one is left wondering, what happens now and everybody is treated appropriately and with the utmost respect.

I would argue that not having appropriate protocols in place shows a lack of respect and value for the lives of severely disabled children and their families.

10 stages of exponentially increasing incompetence

Wed, 27 Sep 2023 03:25:21 GMT

More of a trial by ordeal than a well organised clearly set out administrative process for moving the care of vulnerable young adults from Haringey's Children's Services to Adult Services. We have been failed at every stage of the process.

Summary

Haringey's Transitions Policy says that the process of a disabled young person's care moving from children's services to adult services is not supposed to be a 'cliff edge' experience and there should be no service gaps. The young person and the family should be fully involved in the transitions process. There is a user-friendly Preparing for Adulthood Pathway Guide with lots of nice pictures in it - and it all seems so fluffy and friendly and smiley and happy.

The experience does not meet with the expectations of either the policy nor the pathway. The process has been more reflective of Dante's Inferno

1. Aged 16 - social care payments stop abruptly

It's October 2021 and my son's direct payments for social care have stopped abruptly. My son is profoundly disabled with multiple complex conditions and he gets support for social care in the form of money. This is because Haringey are unable to provide the services he needs. So the money is instead of the services and we use it for social care support like personal care, home help and social activities. The money has already been spent on his summer play scheme and we are in a panic as to where we are going to find the near enough thousand pounds we need to pay for 10 days of daytime play scheme.

We complain.

We get an email back written jointly by two Haringey Children's Services Assistant Directors, Bev Hendricks and Jackie Difolco.

The payments are reinstated and the Assistant Directors assure us:

"The process of... transition would continue in the background well before the child’s 18th birthday
"... you as the parent would be involved in those discussions.
"There is no suggestion that the funding would cease, and
".we work hard to prevent ‘cliff edge’ experiences for children and their parents once they turn 18 years old."

They two Children's Services Assistant Directors also said that Zack's case would go to transition panel on 2nd November 2021 (between his 16th and 17th birthday)

None of this happens.

2. Aged between 16 and 17 - referral for an adult assessment does not happen

Both Haringey Transition Policy docume nt and the email back written jointly by two Haringey Children's Services Assistant Directors, Bev Hendricks and Jackie Difolco say that Zack should have been referred for adult social care between his 16th and 17th birthdays (specifically on Tuesday 2nd November 2021) and that this would go on quietly in the background.

This does not happen.

3. Aged 17.5 years - a 'Continuing Health Care' assessment does not happen

According to information on the Haringey website, a 'Continuing Health Care' assessment by nurses from Haringey's Clinical Commissioning Group would be undertaken at aged 17.5.

This did not happen.

4. Aged 17 and 3/4 - referral to adult social care finally happens

On 23rd November out of the blue a social worker contacts me and says she needs me to fill in a form and gives me 24 hours to do it. She needs the form back by the end of the following day so she can send it to panel on 29th November 2022.

More than a year later than the two Assistant Directors for Children Services had said it would happen.

5. At 18 years of age - no assessments have been undertaken and the social care payments stop abruptly

This can't be a surprise to anyone, can it?

With everything else messed up at every other step of the process, despite what the Transition policy says and despite the assurances of the two Children's Services assistant directors.

So. we complain again, referring to the previous letter and assurances.

It is agreed that the social care payments will continue but we have to agree to an assessment with less than 2 days notice. This is unreasonable and we are unable to make that data at such short notice.

It then takes another 3 months to arrange the assessment.

Haringey ignore and do not respond to emails from us and then our sons Headteacher

6. May 2023 - "The Adult Social Assessment" - finally now starting when our son is over 18 years of age

Its now May 2023 and our son is over 18 years old.

The Haringey social worker turns up at our son's school an hour late. The school are hosting the assessment and the meeting has already begun with the Educational Psychologist sent by Haringey. The social worker apologizes, and says he had 'other priorities this morning' having had other priorities for the last 3 months as well! So, this assessment is conducted without the Haringey Social Worker ever meeting our son, but he doesn't let that stop him!

Outcome of the meeting

Our son is referred for Continuing Health Care and we are asked to fill in a 2018 copy of the DHSC triage form. A paper copy is sent home and the social worker tells us to supply supporting evidence. The form asks for the sources of the evidence. We discuss with the social worker what evidence he would like included (doctors letters etc)
We have to fill in a consent form, which is sent home in our sons school bag.
The Social Worker tells us that there is only one carers assessment per household and the social worker will progress this without any further input from us (its now September, 4 months after the meeting, and we've heard nothing).

7. The Continuing Health Care triage form is rejected - because there is TOO MUCH EVIDENCE

In order to be eligible 'Continuing Health Care' (nursing care in our home) you need to be deemed as having 'high needs' in 2 out of 11 domains on things like breathing, eating, personal care. Our son has high need in 7 out of the 11 domains.

We supply evidence from Great Ormond Street Hospital, The Royal National Orthopedic Hospital and Whittington Hospital.

We reference everything and along side the Continuing Health Care triage form we send the hospital letters. We get the form and evidence proof read by the Head Teacher of our son's special school.

All this takes time. After about 6 weeks we submit the form via email.

And then the summer holidays come along.

Haringey reject the application because there is too much evidence .

We are told we are being sent a revised copy with the evidence stripped out to sign.

8. August 2023 - some nurses visit - but we have NO IDEA who they are

Having been told by the Educational Psychologist that the Continuing Health Care nurses have rejected our form because there is too much evidence. We are then contacted by someone who tells us they are a nurse and they want to visit.

Great we say, bring round the Continuing Health Care form and we will sign it.

2 nurses come round and we work through another form. After an hour and a half and with the form now completed, ask if we are eligible for the Continuing Health Care. They say they need to go away and triage and make a referral. We ask why?

Despite bringing round a Continuing Health Care triage form, they are not continuing care nurses. They are from another team we have never heard of and have no idea who they are.

We ask them to leave.

We later find out they are from something called the Epilepsy pathway - we have never heard of it! We have asked for more information about this pathway.

This has not happened.

9. While on our summer holidays we get a call from a random mobile.

We get a call from a random mobile while we are on holidays. It could have been anyone. It was Haringey.

We tell the person on the phone we are on our holidays and ask if they can they call when we back, preferably not from a mobile but using the landline so the call is recorded?

They are persistent and ask us do we want Zack to be on the Epilepsy Pathway or not?

We have no idea what that is and ask if they will please call when we get home.

This has not happened. Its been more than a month.

10. No one is THAT incompetent

We are eventually sent a paper copy of the now revised Continuing Health Care form.

Having not only removed all our sources of evidence from the Continuing Health Care form that asks for sources of evidence, the Educational Psychologist has made some diagnoses that I do not recognize and do not know of any sources of evidence that agree with those diagnoses.

Also, they have filled in the Equality Monitoring Form. The form is to monitor equality of access for patients on the basis of protected characteristics.

The person who filled in the form filled it in for their own personal characteristics and not our sons. And then sent them to us. They have presumably consented to themselves breaching GDPR regulations and (un?)lawfully disclosing their personal characteristics to us?!

Pretty sure that should not have happened.

Son's now 18.5 years old. Adult social care is still not in place and I have no idea what is going on. Neither, it seems, do either Haringey Children's nor Adult's Social Care Services

Principles of good transition as written in Haringey's Transitions Policy, available on the Haringey Local Offer website

Haringey Transition Policy docume nt from the Haringey Local Offer, Preparing for Adulthood, Transition page. Haringey's Transitions Policy says that the process of a disabled young person's care moving from children's services to adult services is not supposed to be a 'cliff edge' experience and there should be no service gaps. The young person and the family should be fully involved in the transitions process. There is a user-friendly Preparing for Adulthood Pathway Guide with lots of nice pictures in it - and it all seems so fluffy and friendly and smiley and happy.

Extracts below

Extracts from Haringey's Transitions policy

Extracts from Haringey's Transition's pathways presentation

Active travel does not work if you are paraplegic and Transport for London seem to make the rules up as you (try to) go along...

Sun, 24 Sep 2023 16:57:07 GMT

London bus travel is impossible if you are paraplegic - in one 90 minute 6 mile journey I was refused access because a buggy was in the wheelchair space; refused access on the next bus because a wheelchair was already on the bus but when I finally got on a bus, a pushchair was allowed to join me!

Never EVER get on the bus without a camera running if you need the priority wheelchair space

I have uploaded a video i took on my phone to Youtube about what happened when I tried to get on the bus on a not so busy Sunday afternoon.

The driver saw me at the bus stop. He stops the bus, opens the doors and starts talking to me. He tells me that there is a buggy in the priority wheelchair space and the parents were refusing to fold up the buggy and move out of the priority wheelchair space.

The driver then told me that he had phoned control and I could get on the next bus.

But, dear reader, I could not. There was already a wheelchair user in the priority wheelchair space. So it was not until the third bus came along that we were able to board.

Later in the journey another pushchair was allowed on the bus when we were in the wheelchair space. This is perfectly acceptable and sharing the priority space is allowed, but we were not even given this option by the first driver.

Increasing isolation of severely disabled people and their families

The utter policy disaster that is active travel and it's bastard off-spring the Low Traffic Neighbourhood is making it impossible for my family to lead as full a life as we possibly can with a severely disabled family member.

After more than a year of these heinous 'Low Traffic Neighbourhood' schemes in and around Haringey the only people who seem to be being driven off the road are London Black Cab Taxi Drivers and severely disabled people.

For the second week running we have endured the hell that is trying to use a bus when self-entitled and privileged passive-aggressive people take umbrage at being asked to move from the priority wheelchair space.

This week, after failing again to get a taxi via four apps, we once again tried 'active travel' and used a London red bus to get home.

This time was less umbrage and more like disability discrimination known as ableism.

The whole active travel policy is ableist - as are Low Traffic Neighbourhoods

The whole point of active travel is for 50% of trips in England’s towns and cities to be walked, wheeled or cycled by 2030. By making everyday journeys simple, easy and fun, Active Travel England is working to give people the choice to leave their car at home

But what about people who simply can't 'travel actively'?

Disabled people who have no option but to travel by motorised transport are being living in an increasingly isolating world

If you are in a position that you have no option but to travel by motorised transport on the basis of disability, then like us you too might be facing increasing isolation as a result of these hellish and ableist policies and schemes, you too might be experiencing ineffective mitigations, you too might be fed up of wondering if you can safely get home when you go out because people refuse to move from the priority wheelchair space.

Why are we not using London Black Cab Taxis?

We are finding it increasingly difficult to travel by London Black Cab Taxi due to

Lack of availability of taxis
Taxis simply not on the road
Some drivers refusing us access when they see the wheelchair
Increase cost of taxi travel due to Low Traffic Neighbourhoods

The BIG RED BOOK for London's BIG RED BUSES

" The Big Red Book is unique in that it gathers together in one place exactly what passengers can expect from London’s 28,000 bus drivers" according to Alan Benson on the Transport for All website.

So we should not be experiencing different level of access depending on who the bus driver is

Boarding procedure for wheelchair and mobility scooter users

The Big Red Book says

Wheelchair and mobility scooter users must be given access to the wheelchair priority area even if it is occupied by buggies and other customers. They can only travel safely in the priority area, so you must ask customers to move by using the pre-recorded announcements or making your own PA announcement.

It is important you stay professional and calm as this will help wheelchair and mobility scooter users feel valued and more confident about travelling on London’s buses.

The driver refused access on the basis that there was a buggy in the priority wheelchair space

T he Big Red Boo k says

Ask customers to move or fold their buggy if there is not enough space for an unfolded buggy to share the priority area with a wheelchair or mobility scooter user, or if it will cause an obstruction. Do not move off until they are safely repositioned.

The driver refused to use the pre-recorded announcement

The Big Red Book says

iBus [the pre-recorded intercom messages] can help you communicate with your customers through pre-recorded announcements that, among other things, let them know about stop closures or a change of driver. Also, you can ask customers to move down the bus or out of the wheelchair priority area and, if your bus is busy, you can let them know that seats are available on the upper deck.

If you are fed up of this discrimination then it's time for you to join us in the fight against ableism

LTNs DONT WORK - PROTEST

LTNS DONT WORK PROTEST: FULL COUNCIL MEETING
Thursday 28th September
6:30pm to End
Tottenham Old Town Hall
Town Hall Approach
N15 4RY

This is a public open full council meeting
Nearest Tube Seven Sisters Victoria Line

Move your f-cking buggies from the wheelchair spaces on buses

Sun, 17 Sep 2023 15:31:54 GMT

The reality of using a London Bus in the teeming rain on a Sunday afternoon is no joke when the parents of a paraplegic person in a wheelchair clash with the self-entitled buggy-pushing parents of toddlers.

On a very wet Sunday afternoon in Wood Green

Perfectly able-bodied people in warm offices dreaming up active travel schemes and their blow-hard defenders on social media know nothing of the reality of trying to access a bus's wheelchair space on a wet Sunday afternoon in Wood Green

What does it take to MOVE an entitled buggy-pushers buggy from THE wheelchair space?

As the 41 came to it's halt at Turnpike Lane Station, I pressed the blue wheelchair button, as any reasonable person would. He could see me, Mr Privileged-Entitled , from the comfort of the priority seat, because he looked me squarely in the eye. I asked him, can you move your buggy from the wheelchair space. It was pissing down with rain and I was getting soaked. I'd left Z with the other Difficult Parent under the bus shelter. But I wanted to get him on the bus and in the warm and out of the rain as quickly as I could.

Mr Privileged-Entitled did not move. He did not move the unfolded buggy. He just sat and stared at me. Perhaps hoping that if he wished it hard enough the driver would just drive on and leave the paraplegic young man at the bus stop in the pouring rain, getting soaked to the skin along with his parents.

But that didn't happen.

The back doors close to get the ramp out and the driver gives me a nod. He says don't worry, I'll get them to move. He does this by using the automated announcement over the bus tannoy.

That buggy was still an obstruction - as was the Mr Privileged-Entitled himself!

Eventually, Mr and Mrs Privileged-Entitled fold the buggy and place it in the middle of the bus aisle. The buggy in the middle of the aisle makes it hard for us to get wheelchair into the wheelchair space. Mr Privileged-Entitled then sits in the priority seating opposite the wheelchair space gripping his toddler-sized child for dear life.

Standing over my paraplegic child and dripping water, I ask Mr Privileged-Entitled if he would move so we can sit down. Wordless he gazes at the empty seat next to him. Could both of us sit down?

" Fine ", he says, " But you seem to be very passive-aggressive ".

Why do we have to ask?

The theory versus the reality of active travel is never more real than it is for disabled people confronted by the entitlement of the able-bodied people. And this became the topic of conversation between us two Difficult Parents as the bus trundled along West Green Road. This topic of conversation seemed to upset Mrs Privileged-Entitled who shouted over that she didn't want an argument.

Nor did Mrs Privileged-Entitled want arguments with the people who got on the bus but were unable to get to the back of the bus because the buggy was blocking the aisle. Despite not wanting these arguments, she did not move the buggy out of the way to stop it forming an obstruction.

Mrs Privileged-Entitled jumped off the bus to shout at us!

We arrive at our bus stop and as we get off, Mrs Privileged-Entitled can't help herself and appears at the door at the back of the bus shouting at us "There's no need to be angry at the whole world". (Mrs Privileged-Entitled was more aggressive-aggressive than her passive-aggressive partner Mr Privileged-Entitled.

I shouted back "I am not love, just at the woman that needed to be asked THREE TIMES to move her buggy from the wheelchair space"

Haringey SEND Transport: 17 year old obnoxious diesel fume spewing death trap on wheels - and Haringey knows it

Thu, 22 Jun 2023 11:15:39 GMT

My sons SEND Transport minibus is a 17 year old obnoxious diesel fume spewing death trap on wheels - and Haringey Council know it

The long and the short of it

Haringey SEND Transport are insisting that a 17 year old minibus with no air conditioning is a suitable vehicle to transport my paraplegic son in this heatwave. The appalling conditions inside the minibus inside the bus is something they knew about last summer, yet they have to date done nothing whatsoever provide a suitable minibus this year nor appropriately mitigate the temperatures inside the minibus.

The conditions inside the minibus are so bad that they triggered multiple seizures during the heatwave as my son has epilepsy, which they SEND transport department know about and they also know that they are triggered by heat.

It is not just son who is impacted: there is a risk to health and life of all, but especially vulnerable people in hot weather.

My sons disability

My son has been diagnosed by the world renowned experts at Great Ormond Street Hospital as having a severe medicine resistant epilepsy that is can be triggered by heat, among many other complex health conditions. He is unable to communicate his needs as he cannot talk and has very severe learning difficulties.

This means that in the space of his short life he has been on life support three times and has needed resuscitation three times. On one occasion this was done by his mother. During the summer months he tends to have more and more seizures and we have been told by the safeguarding doctor from Whittington Health Islington that he is at risk of sudden adult death syndrome.

Last year we worried that we would not survive the extreme 40 degree heat and it was at that time, mid-July 2022, that the manager of Haringey SEND Transport wrote to us and told us there was no air-conditioning on our son's SEND Transport bus. He offered to reimburse us the cost of taking our son to school ourselves via taxi. The heat was so severe we decided to keep our son off school and keep the house as cool as possible using air-circulating fans and a paddling pool.

It was awful and both I and my son became unwell. I had heat stroke and my son had a seizure. The magnificent Mrs Leveson got us both cooled down using the bath for our son and putting me in our paddling pool!

This year we have kept the house cool using air-conditioning units bought in January (when they weren't so expensive and there wasn't so much demand for them).

The state of the minibus

For the last few years our son's SEND transport provision has been a 17 year old white VAUXHALL diesel fueled minibus that replaced the new one that was procured in 2019 following our previous SEND Transport palavers. See this blog from May 2019 - https://www.difficultparent.com/the-wheel-s-on-the-bus-don-t-go-round-and-round

At that time, 2019, we asked what the age minibus should been and the reply was no more than 5 years old at the start of the contract and no more than 7 years old throughout the contract. So you have to wonder why on earth our son is on a a bus that isn't complaint in the middle of a Haringey Council declared climate emergency.

Haringey SEND Transport have said to us that this is because this is what is needed to meet our sons disability, yet for the period between the complaint being settled and the Covid-19 lockdown they had managed to procure and provide a suitable modern minibus. Our own vehicle is 16 years old and has air-conditioning.

The SEND transport manager wrote to us again on 12th June 2023 to tell us again that the minibus had no air-conditioning and we were shocked to find at that stage absolutely no attempts to mitigate a know risk to our sons life from the heat inside the minibus had taken place.

4 fans and partially opening windows are inadequate mitigation

An entire year after the SEND Transport department had identified a know risk to life on our son's minibus and after numerous heat health alerts had been issued, they offered us the same mitigation they offered last year, to pay for us to take our son to school in a cab - only this year it would be for 6 weeks on 2 days.

Horrified that they had not properly risk assessed the SEND Transport route, as they are required to do by the Department for Educations home to school transport guidance, I challenged why they had not properly risk assessed the route and put in place appropriate mitigation.

The rock and a hard place choice that we were offered was

to continue with SEND Transport that is so old and inadequate it is essentially a risk to life given the needs of the person being transported
juggle work and caring even more than we already do, a situation that last year had detrimental impacts on the health of all of us - including the aforementioned heat related health conditions and an exacerbation of our own long term health condition.

The reply to the complaint is published in full below.

Reply to complaint - one year on from failing to deliver a safe mode of transport, why has it happened again?

Thank you for giving us an opportunity to investigate your complaint. I am sorry that you are unhappy with the service you received from us.

The transport department were transparent with regards to the vehicle not having air conditioning (please see the second attachment). They pre-emptively contacted you this year with regards to a solution to support ZL’s transport during this hot weather period. You were provided with alternatives to this issue, which was also afforded to you this year (please see first attachment). You requested that the department continued to make arrangements for ZL, and subsequently they have worked with the contractor to mitigate the effect of the high temperatures on ZL’s transport.

In terms of mitigation, the vehicle being used has been retrofitted with 4 air circulating devices (fans right? they mean fans, don't they?) to reduce the temperature on board the vehicle (fans that circulate hot air love, not reduce air temperature). The windows also partially open, allowing air to flow. We have inspected the temperature of the vehicle after a route was conducted to check the temperature on board and it was at a satisfactory level. Staff have been asked to inform the office should temperatures become uncomfortable for the passengers.

We are working with the contractor about upgrading the vehicle for the next academic year so it has full air conditioning and will update you accordingly.

Our main priority is ensuring ZL’s safety on his journey to and from school. The department will be in contact with the school to see if they can provide any additional training with regards to identifying signs as to whether ZL is in discomfort and how to address this.

I hope this addresses your concerns.

My response - in full

Dear Chief Executive,

I am escalating this complaint to yourself as per the Corporate Complaints Stage 2 independent review procedure.

I disagree with the statement that The transport department were transparent with regards to the vehicle not having air conditioning on the basis that both 2022 and 2023 we were informed after heat health alerts had begun:

last year on 13th July 2022 after a month of heat health alerts beginning on 14th June 2022 on the occasion of extremely high temperatures and
this year on 12th June 2023 at 4pm, in the afternoon after the first heat health alert had ended (between 09/06/2023 at 09:00 and 12/06/2023 at 09:00).

I disagree with the statement that They pre-emptively contacted you this year with regards to a solution to support ZL’s transport during this hot weather period on the basis that we were contacted this year on 12th June 2023 at 4pm, in the afternoon after the first heat health alert had ended (between 09/06/2023 at 09:00 and 12/06/2023 at 09:00).

I disagree with the that statement You were provided with alternatives to this issue, which was also afforded to you this year on the basis that the alternatives to the issue were only afforded to us last year after a month of heat health alerts and after extremely high temperatures . This year we appear to be being asked to make alternative provision for our sons school transport arrangements for 6 weeks not two days (as was the case in 2022).

I disagree with the statement You requested that the department continued to make arrangements for ZL , on the basis that my reply stated I would expect you to provide a bus that my son is safe on and that heat and high temperature would form part any risk assessment at the start of this academic year as you have identified this a risk for Zack last year.

With regard to the statement subsequently they [the department] have worked with the contractor to mitigate the effect of the high temperatures on ZL’s transport I do not believe 4 fans and two partially opening windows will do as the Head of SEND has stated and therefore these actions will not mitigate the effect of the high temperatures on ZL’s transport.

I have concerns with the following statements: In terms of mitigations, the vehicle being used has been retrofitted with 4 air circulating devices to reduce the temperature on board the vehicle. The windows also partially open, allowing air to flow. We have inspected the temperature of the vehicle after a route was conducted to check the temperature on board and it was at a satisfactory level. Staff have been asked to inform the office should temperatures become uncomfortable for the passengers. On the basis of Guidance issued by the UK Health Security Agency for providers of children’s social care. Link - Heat-Health Alert action card for providers - GOV.UK (www.gov.uk) .

The department have not acted yet upon the suggested actions once an alert is issued:

• raise awareness of heat illnesses and their prevention among clients and carers

• work with partners and staff on risk reduction awareness using a variety of methods to maximise dissemination

• develop and communicate proactive evidence-based messages aimed at the public, especially to vulnerable groups and underserved populations

• create or operationalise cool rooms or areas (able to be maintained below 26°C)

• ensure staff visiting vulnerable individuals have access to a thermometer or means of measuring temperature and ensure relevant staff know how to check, record, and follow internal procedures if a cause for concern is identified; during hot weather, indoor temperatures should be monitored regularly, and steps taken to keep the home cool

• check thermometers are installed and working where vulnerable individuals spend substantial time and ensure relevant staff know how to check, record, and follow internal procedures if a cause for concern is identified

Nor have they enacted the suggested actions once alert is in effect:

• reaffirm key evidence-based public health messages to clients and staff

• check and record indoor temperatures regularly during the hottest periods for all areas where patients or clients reside and follow internal procedures if a cause for concern is identified; ensure designated cool areas are below 26°C

• assess staffing levels , recognising possible increased care needs of clients during hot weather

• monitor the local and national weather forecast

• assess refrigeration capacity to ensure sufficient cold water and ice are available to minimise risks from dehydration

• review and prioritise individuals most vulnerable to heat-related illnesses; for individuals who cannot be moved to cool areas, or for whom a move might be too disorienting, take actions to cool them down (for example, liquids, cool wipes) and enhance surveillance

• in clinical settings with vulnerable patients or clients , check body temperature, heart and breathing rates, blood pressure and hydration levels ; consider weighing clients regularly to identify dehydration and rescheduling physiotherapy to cooler hours

Knowing that there was a risk to Zack’s life last year caused by the heat, I am dissatisfied that it is only now, a full year later, that the department are working with the contractor about upgrading the vehicle for the next academic year so it has full air conditioning as Zacks vehicle, registration LF06 XFV is a 17-year-old white diesel minibus, first registered in April 2006 and last sold in June 2019, LF06 XFV.

With reference to a previous complaint Your ref: Stage 1 complaint/LBH9110919 - Z Leveson/Transport. What is the permitted age of the vehicle according to the contract?

The standards on the direct purchasing system are as follows:

	Maximum age at commencement of the DPS	Maximum age throughout the service provision
Minicabs / Taxis	5 years	7 years
Standard Minibus	5 years	7 years
Accessible Minibus	5 years	7 years
Coaches	10 years	12 years
Accessible Coaches	10 Years	12 Years

As an 17 year old accessible minibus, this vehicle is over 10 years older that the maximum age through the service provision and was over the age of the maximum age at commencement of the DPS. The lack of air conditioning on this vehicle was identified as an issue a year ago, as per the email from Mr Fisk on 12th June 2023. Why is the minibus only now being upgraded? Our 17 year old car LW55 CJF has air-conditioning, we struggle with the rationale put to us in Mr Fisks email that it was the age of the vehicle that meant it had no air conditioning.

I disagree with the statement that [the departments] main priority is ensuring ZL’s safety on his journey to and from school as they would be communicating plans for hot weather well in advance of heat health alerts and Zack would be on an air conditioned vehicle with an escort provided by the department and not asking us to make this provision after heat health alerts have been issued.

I am dissatisfied with the statement The department will be in contact with the school to see if they can provide any additional training with regards to identifying signs as to whether ZL is in discomfort and how to address this as my concern is the immediate risk to Zacks life and the department have failed to understand the risks they are talking with my child who has severe epilepsy and is unable to communicate his needs and is at risk from sudden adult death, if my concerns are not more robustly addressed than by 4 fans 2 partially opening windows in a 17 year old minibus without air conditioning in the weather hot enough to trigger, thus far, yellow heat health alerts. The risk if the heat health alerts raise to amber or red would be too great to gamble with my child’s life in the way the department have chosen to do so.

Further to that

Further to my complaint to the Chief Executive, with reference to the ‘new’ Haringey post-16 SEND Transport Policy, which was introduced this academic year with the purpose of clarifying the policy including Personal Transport Budget arrangements, and therefore supersedes the arrangements offered to us last year and clarifies what the nature of an offer should comprise of.

6. Haringey’s Travel assistance Offer

Personal travel budget (PTB)- a PTB is a payment designed to help young people/ parents to make any of the travel arrangements needed to facilitate their young person accessing school.

Formula for PTB value: (journey time x Passenger Assistant cost per hour + journey cost) x journeys per day x number of days attending school per week x number of weeks per academic year = PTB value

No offer has been made to us to cover the cost of an escort (described in the formula as a personal assistant), nor would it be feasible for us to arrange the employment of such an escort in the time left available before the end of term – 4 weeks.

school_travel_assistance_policy_post_16.pdf (haringey.gov.uk)

We might have been able to persuade a family to bring escort our son.

This is another way in which I think the SEND Transport department is treating Zack unfairly, in previous correspondence with the department, questioning the decision making of the department has result in them insisting on a formal complaint, banning us from writing to them (in part because we insist on all communications to be in writing – an audit or evidence trail if you like; and in part because we requested his SEND transport risk assessment – this was all before we were told there was no air conditioning on his SEND Transport bus) and threatening to remove his transport provision.

Is this really NECESSARY?

Tue, 03 Jan 2023 10:00:48 GMT

I am simply asking a question - are we all absolutely certain that the road closure / travel restrictions (commonly know as LTNs) placed on some of the most severely disabled people who are wholly reliant on cars are absolutely necessary

Disabled people need permission to travel for every single trip!

Mon, 02 Jan 2023 21:04:00 GMT

Haringey's road closures exemptions policy for disabled people is not fit for purpose, unduly burdensome and intrusive - it's time to stand up against the pro-LTN lycra-clad cycling bullies

Why are we allowing pro-road closure lycra clad cycling bullies to influence decisions that effectively imprison at home the most severely disabled for the public good?

I do understand the impact of climate change and the benefit of what is now called 'active travel' but what people used to call walking or cycling, but in reality means cycling by those pushing the 'active travel' agenda.

If anyone of these fanatics could pause for a breath for a moment and be prepared to listen to what disabled people need and put in place effective exemptions it is quite likely I would be in favour of measures to reduce traffic - because who wouldn't. But none of that is not happening - more traffic, more air pollution and restrictions on travel.

What is frequently is thrown down our throats is the restrictions placed on disabled people are necessary for the common good - and in what isn't a parody of the Vicars Wife in The Simpsons - for the good of children! Won't someone think of the children! Their LUNGS!

Is no one hearing alarm bells at the logic behind these dreadful restrictions on the travel of disabled people? What will be next? I am fearful of what that might be, what might be absolutely essential, in a climate emergency, because its for the public good and in the interest of children to restrict the travel of disabled people.

Pro-road closure lycra-clad bullies don't seem to understand severe disabilities and complex health needs

I am sick of people who know nothing about disability whatsoever telling me that the wide scale road closures known as Low Traffic Neighbourhoods (LTNs) do not impact in any way on access for disabled people because you can still get to your own home or even you don't live in an LTN so what are you crying about because you are lying.

The pro-LTN lycra-clad cycling troll who wrote the tweet at the top of this blog to me is quite notorious for telling disabled people the aren't disabled or they are lying. This is not an untypical exchange from the toxic pro-LTN lycra-clad cycling mob.

It is deeply worrying if this is the mindset of the people who are advising local councils and government.

A policy that most severely impacts on those who were already most excluded and social iscolated

What pro-road closure bullies love to do is find a disabled person who is experiencing an improvement in travel because of the road closures. Good for them. And then tell ALL disabled people that they are ALL better off - because this disable person is. Disability is not on homogeneous group of people.

There is a group of people with severe disabilities or complex health needs who face complex barriers to travel and therefore accessing services and wider society who are now effectively under house arrest and cannot risk going out and getting fined or stuck in traffic because of the wide-spread road closures known as Low Traffic Neighbourhoods (LTNs).

An example might include:

A person with complex health needs one of which is diabetes who ends up pissing themselves because they've sat in traffic on West Green road for 20 minutes - which lets face it if you are going to piss yourself you are probably better off doing it in your own car than on the street or on a bus.
Or a person with complex health needs one of which is diabetes that cannot risk being stuck in traffic because they have to get their medication in the 'fridge.
Or an epileptic who has seizures when they become very distressed because they do not understand sitting in a queue for 2 hours because West Green Road has been close
Or someone who is doubly incontinent and needs a Changing Places toilet with a hoist etc but there are none on West Green Road so they spend 20 minutes sat in their own shit
Or Haringey does not provide appropriate services to meet the needs of a severely disabled person in the ableist concept of the 15 minute city so you end up having to travel far and wide to actually reach services to meet needs
Informal family carers are twice as likely as non-carers to have serious long term health needs and it is not unreasonable that the person with complex health needs is looking after a person with a complex disability.

What was it that pro-LTN lycra-clad cyclist said to me again? Stop crying. Stop Lying. You can get to you house in a car, Just as you did before the LTN.

Now, I don't expect that the person who tweeted that nonsense at me will be in any way swayed by this blog, nor will any of his pro-LTN lycra-clad cycling bullying mates.

But others might. People who are in positions to make decisions who might start being revolted by the arguments being put forward or the revolted by the behaviour of the pro-LTN lycra clad bullies - for who there is no middle ground and no argument in favour of exemptions for disabled people.

A HELL-LTN between two LTNs boundary roads with all of the negative impacts of LTNs with no mitigation.

We live on a road that lies between Phillip Lane and West Green Road the boundary roads of the Bruce Grove LTN and the St Anns LTN.

We are seeing increased traffic from people travelling between Phillip Lane and West Green Road and vice-versa
We are not eligible for automatic exemptions are blue badge holders living on a boundary road, because we don't live on a boundary road
We are seeing increased journey times leading to at least one significant medical emergency and much pain and discomfort
We are seeing increased cost to our taxi journeys to and from hospital (hospitals have limited parking), the most egregious journey cost over £10 for the part of the journey from South Tottenham to West Green Road
London black cab taxis are the only form of public transport that we can use
My child requires 24/7 care - ruling out driving in part because I need to give my full attention to him and in part because we can be travelling to and from hospital appointments which themselves are very stressful

The long and extensive individual circumstances form

Below we have screenshot the pages of the Individual Circumstances Form for Exemptions for Low Traffic Neighbourhoods (LTNs) . In the form you have to state and provide evidence of

Who you are and who needs the exemption
Where are the start and end points of your journey
Which route you intend to take for the journey
Which route you would have taken before the imposition of the wide area road closures known as LTNs
Why you need to take the route through the LTN
Which filters in the LTN you will use (presuming you know what these are and where they are)
When you intend to take the journey
How often you will make this journey

And then and the evidence - get your papers in order

And you also need to upload the evidence of
a. your home address
b. your health condition that demonstrates that you have the health condition to supports the criteria
c. both sides of you Blue Badge

... and you fill it in for every single journey you make

Now remember if you do not live IN an Low Traffic Neighbourhood (LTN) or on a boundary road you have to fill in an application form and get permission for every single journey. So, you won't be filling the this in once or once a year - you need to fill it in to go to say hospital , and then again to go to say the doctors , and then again for a trip to the dentist , and then again to get to a therapist , and then again if you go to a special needs social club - each time hoping you get permission.

Can you imagine any other group of people having to ask for special permission to travel because of their protected characteristic.

A screenshot of the application form is at the end of this blog

IF YOU WANT TO STAND WITH US, FOR DISABLED PEOPLE AND AGAINST THE PRO-LTN LYCRA-CLAD CYCLING BULLIES, JOIN OUR PROTEST ON SATURDAY 7TH JANUARY IN WOOD GREEN

Saving the best for last - now upload your evidence...

STAND UP FOR DISABLED PEOPLE AND AGAINST LTNS AND THEIR LYCRA-CLAD BULLYING SUPPORTERS

2 Wheels GOOD, Blue Badge Holders EVIL?

Sun, 01 Jan 2023 16:26:42 GMT

Is the argument for and against exemptions for disabled people in Low Traffic Neighbourhoods really a case of GOOD versus EVIL?

How on EARTH has this become a GOOD versus EVIL argument?

Many proponents of the wide area road closures know as Low Traffic Neighbourhoods are trying to turn it into a good versus evil argument. Even in our own borough here in Haringey, opponents of the road closures have been described as 'very right wing' non-Labour voters who are homophobic, Islamophobic, sexist, racist and xenophobic. (I observe not Antisemitic though ... just an interesting absence from that list in a Borough than faces an now annual Councillor related Antisemitism scandal. Well for the last 4 or 5 years anyway. But 2023 is a New Year - one day down (almost, there is still time), and no Antisemitism scandal, yet...).

What is the 'common good'?

The intentional impacts of Lower Traffic Neighbourhoods disproportionately impact on disabled people and people with long standing health issues - I fail to understand how inflicting more cost, pain and suffering on disabled people is for the common good.

Increased travel costs for people on limited or fixed incomes in the middle of a cost of living crisis - where is the common good
Further limiting travel options for people who were already unable to access the majority of public transport - where is the common good in that?
Increasing journey times for people who suffer physical or psychological distress - how is that good?
Overly burdensome exemptions policy were people have to get permission to travel for every single trip - how is that healthy for anyone?

Disabled people are not 'bad people'. Disabled people are not privileged 'haves' to have help with travel. Disabled people are not Zombies waiting for a food delivery

Blue Badges are not given out like sweets! They are applied for and awarded to people who prove that they can’t walk more than 50 metres or are registered blind (severely sight impaired) or receive a War Pensioners’ Mobility Supplement or a veteran certified as having a permanent and substantial disability that causes inability to walk or very considerable difficulty in walking or ‘planning and following journeys’ activity / unable to undertake any journey causes you overwhelming psychological distress

https://www.gov.uk/government/publications/blue-badge-can-i-get-one/can-i-get-a-blue-badge

How the HELL has is come to this ...

If you are sickened by this treatment of disabled people and think disabled people should not be prisoners in their own homes or just dislike LTNs join the protest next Saturday..

Should Peray Ahmet resign as Leader of Haringey Council and take her pro-LTN bullies with her?

Sat, 31 Dec 2022 12:21:44 GMT

Letters from Labour Grandees and survey results from Haringey Council show people who opposed LTNs are women, elderly and disabled. Yet Peray Ahmet has described anti-LTN people as homophobic, islamophobic, sexist, racist and xenophobic.

Defaming the vulnerable without basis

Haringey's survey results about Low Traffic Neighbourhoods (LTNs) showed people who were opposed to them tended to be were disabled, elderly and women.

In a tweet on 4th November 2022, 3 days after the introduction of a second LTN on Tottenham that was causing considerable chaos and upset the Leader of the Council demonstrated the type of leader she is and tweeted the above tweet about WHO the people are who are opposed to LTNs: homophobic, Islamophobic, sexist, racist and xenophobic

Peray had clearly not read the results of her consultation surveys. Which is surprising for a person who came into power and stated "My own background has shown me that the way we engage and talk to our residents is a crucial component moving forward. I will be using all my insight and experience of living in Haringey to help make a difference.”

Peray is certainly right about that.

Democracy died at the decorium

Peray's slanderous comments go further, cancelling the 5th December Full Council meeting a month after the introduction of the LTNs. Haringey claim this was done on police advice and that a member of staff was assaulted. These claims were strongly refuted by the protesters and there has been no signs of any further action taken against the protesters, for example police incident reports or arrests.

For our part, leading two of the marches from the front with our son's wheelchair, we saw nothing of it at all. What we did encounter was some very unpleasant security people and police employed by Haringey.

We were part of the deputation for the Scrutiny meeting. Upon arriving at George Meehan House, ahead of the rest of the marchers, we had no idea that there would be hundreds of protesters and crowd control barriers had just been laid (we waited for the truck to leave). We signed a deputation along with 16 other people. Not hundreds. When we asked to cross the barrier, with our paraplegic son, one officer refused to let us move saying 'well you put yourself there'. I said I had no idea this crowd and these barriers were going to be here. Eventually another officer who wasn't so completely horrible and who'd escorted us on the walk us got us through so we could go into the meeting as part of the deputation. The officer who tried to refuse us access got a bit aggressive with me - waving his hands about and shouting, but I just refused to speak to him.

At the Decorium I got split up from my son as I was sent off in a different direction following police instruction. I asked the Haringey security person if I could go to my son as I had his oxygen and rescue medication. She refused. And laughed in my face. Clearly enjoying herself and her tiny little bit of power. I found my son again and we left about 7pm and were home to watch online the meeting the never happened.

To find out that at both meetings protesters became frustrated and noisy is no surprise given the slandering and provocations of Haringey Council.

We have often stated it, but the behaviour of officers in a meeting with the joint partnership board was no better, I found the interrupting of Officers when the co- Chairs were speaking particularly disrespectful. Given Peray's assertion that people who are anti-LTN whould never vote Labour, it's worth noting one of the people who officers talked over is co-chair Sharon Grant, local Labour grandee and widow of the UK's first black MP Bernie Grant; another was a disabled women with a speech impediment.

Who are Peray's anti-LTN homophobes, islamophobes, sexists, racists and xenophobes?

The elderly and disabled vulnerable people who are badly impacted by LTNs deserve better than slanderous name calling, cabinet papers shared for comment at the last minute, and the paucity of the engagement. I have to challenge local 'democracy' reporters to work harder to be more balanced in the version of events they present.

Haringey's Joint Partnership Board co-Chairs Sharon Grant and Helena Kania, who represent users of Haringey's Adult Social Care have written to Mike Hakata "We are writing once again to raise the concerns of Joint Partnership Board members about the way in which the LTN’s are affecting them. In particular, we wish to express our profound concern about the flawed decision making process by which the policy was developed and the failure to observe legally accepted standards for public consultation".

Yep, profound concern about a flawed decision making process expressed by Labour Party grandees - and Peray calls people opposed to LTNS homophobes, islamophobes, sexists, racists and xenophobes... bye-bye, dear, bye-bye

If you agree - join the protest

What lies behind those 'Healthy streets' advocacy fronts?

Fri, 30 Dec 2022 22:13:55 GMT

Are they really about healthy streets for all? Or just another pro-cycling group in disguise, not in favour of inclusion of severely disabled people at all... (Twist added at the end as the claims made appear to be a case of 'recollections varying' for one of our readers)

And then the final twist in the tale comes when it turns out the same person DOES police social media - just the views that don't agree with his!

Better Streets for Enfield would, it seems, rather block people than hear views that are opposed to theirs - in this case it was pro-LTN lycra-clad cyclists need to stop trolling and bullying disabled people

LTNs not you idea of Healthy Streets - come join the protest

No sh*t Sherlock - Responses to Haringey Low Traffic Neighbourhood surveys show they are exclusive by design

Fri, 30 Dec 2022 21:57:00 GMT

Summaries of key demographic information show the bias of the consultation results towards towards young white men who are in favour of the road closure schemes

Bounds Green LTN

The consultation for the Bounds Green LTN ran from 16th August 2021 to 17th September 2021. In total 1,511people responded to the consultation –1,388 via the online portal and 123 via paper surveys. There were also 57 emails received with feedback on the scheme.

Summary of key Demographic information

· There was similar sentiment from residents in both the Bounds Green LTN area in Haringey and the Enfield LTN area, although those in Enfield were slightly more negative. Residents from Haringey but outside the LTN area were more positive about the changes than those within.

· Residents living on boundary roads around the Bounds Green and Enfield LTN area had a similar sentiment towards the changes to those living within the LTN area.

· Respondents with access to a private car were more negative than those without access to a private car.

· Those who currently travel around the area by car were more negative about the changes than overall. Those who travel around the area by cycle were the most positive group when broken down by travel mode.

· Respondents with a physical or mental health condition/illness were more negative about the proposals than those without.

· Disabled respondents and carers in the area gave similar reasons for being negative about the schemes to overall responses. However, many of them linked their concerns to their disability –e.g. longer journeys to health services, the ability of carers to meet appointments, being unable to walk or cycle places due to a disability/health issue.

· For specific schemes, generally older people were less positive about the proposed changes than younger people.

· Women were less positive about the proposed changes than men.

Bruce Grove / West Green Road LTN

Undertaken between 16th August and 17th September 2021, a total 1,223 people responded to the consultation –1,122 via the online portal and 101 via paper surveys

Summary of key Demographic information

· Those living within the LTN area were more positive about reducing vehicle traffic in Bruce Grove West Green than negative, however, when asked about specific LTN schemes they were more negative than positive. Residents from Haringey that live outside the LTN area and boundary roads were the most positive towards the changes.

· Residents living on boundary roads in the LTN area (including Belmont Road and Downhills Way) were more negative towards the changes than those living on minor roads within the LTN area and those living outside the LTN area.

· Respondents without access to a private car were more positive than those with access to a private car.

· Those who currently travel around the area by driving were more negative about the changes than overall. Those who travel around the area by cycling or walking with prams/pushchairs/buggies were the most positive groups when broken down by travel mode.

· Respondents with a physical or mental health condition/illness were more negative about the proposals than those without.

· Those aged 25-34 and 35-44 were the most positive age groups

· Women were less positive about the proposed changes than men.

· The majority of responses were from residents in the Bruce Grove West Green area. Most respondents not in the Bruce Grove West Green LTN area visit friends, family, or businesses in the area.

· While the survey was filled in by a range of respondents, responses are not representative of the population of the area. Consultation results should be understood within this context. Groups that are underrepresented in the survey include: those without access to a private car; those identifying as “Black/African/Caribbean/Black British” and “Asian/British Asian”; men; and those aged under 34. The number of people who said the had a disability and/or a long term illness is roughly in line with national averages.

St Anns LTN

The consultation process ran between August and September 2021 and during this process 1,078 people responded to a questionnaire about two LTN proposals for the St Ann’s Area.

Summary of key Demographic information

· 69% (747) of participants stated they lived in the St Ann’s area. 59 live on one of the boundary roads outlined above. 26% (284) said they visit friends and family in the area, and 25% said they visit businesses in the area. 2% (25) said they owned a business in the area. It is worth noting a further 28 businesses responded to the business perception survey, meaning at least 53 businesses participated in the process in some form.

· When asked to identify their gender, 47% selected “woman”, whilst 44% selected “man”. 8% preferred not to say, and a small number identified as “non-binary” or “other”.

· The most common age group of respondents was 35-44, which was selected by 45% of people who answer the question. Overall, 55% of those who participated in the process were under the age of 45.

· When the figures on age are compared to the wider ward demographics for St Ann’s, there was a slight overrepresentation of those over the age of 65.

· 67% of those who answered this question, identified as “white”, with “prefer not to say” constituting the second most popular answer.

· There is an underrepresentation of Black/African/Caribbean/Black British individual when compared to the ward level data.

· 15% of participants identifies as having a long term physical or mental health condition, which is broadly in line with what is outlined within the St Ann’s ward profile. When asked to identify their condition, the majority (54%) preferred not to identify their condition.

· 88% of respondents stated English was their main language.

Not a privilege young white healthy male cyclist whose in love with LTNs? About time your voice was heard then - join the protest!

Low traffic neighbourhoods are a mass demonstration of Haringey's contempt for disabled people

Fri, 30 Dec 2022 15:27:29 GMT

Haringey must STOP the daemonisation of severely disabled people who have unfair and costly restrictions to health and social care due to road closures.

The stated objectives of the road closures

We know residents want people-friendly neighbourhoods. We will reclaim local streets for the people living there, making them once more safe, welcoming and liveable spaces where people meet, chat, socialise and where children play.

The introduction of measures under our ambitious Haringey Streets for People project will cut road traffic and pollution, as well as improve the walkability and cyclability of the local area, creating active travel corridors between local amenities.

This initiative will be a key driver towards a safer, cleaner, greener, fairer and happier borough.

https://www.haringey.gov.uk/parking-roads-and-travel/roads-and-streets/haringey-streets-people

Haringey's contempt for the view point of disabled people is neither 'people-friendly' nor fair.

Haringey was already in a poor state when it comes to the inclusion of severely disabled people - particularly children. This is an issue we have campaigned on extensively for example inclusion of disabled people in forums. Haringey have not been inclusive.

Meetings are repeatedly held at inaccessible venues - on upper floors or without changing places toilets or inadequate blue badge parking arrangements
Pressure groups, like parks forums and cycling groups are not inclusive of the most severely disabled.
Officers and Councillors demonstrate contempt for severely disabled people in meetings through behaviours like turning up late for meetings and bolting as soon as they end, sharing cabinet papers for comment with less than 24 hours notice, repeatedly interrupting people with speech impediments and the chairs of the local partnerships board of social care users

The 'trolling' and 'daemonisation' of people who aren't happier and find the road closures unfair

The claims made about those of us who are not 'happier' about low traffic neighbourhoods are quite unbelievable. Mainly because they aren't true. I have recently been informed that I am so 'right-wing' that I am closely connected to Nigel Farrage. Of course The Nige (as we call him) popped over for Hannukah (he's so inclusive of all people) and we raised a glass to celebrate the state of post-Brexit UK (total mess).

Some of the unhinged comments, from all sources, are wholly and entirely without evidence.

Being deamonised is something we are used to in this household on the basis that we fight for the rights of our disabled child and we are a Jewish household.

The insane claims come from all sources - current and former Councillors, cycling ambassadors, cycling groups - are all designed to turn people against those of us who aren't happier and find the road closures unfair. Some of the more insidious claims are that we are fighting the 'common good'. This is just a disgusting agrument - with pro-LTN people advocating against exemptions for ambulances and Blue Badge Holders!

Villains with disabilities is a common trope

According to the book Disabilities: Insights from Across Fields and Around the World , disabled students are two to three times more likely to be bullied in comparison to their nondisabled classmates. The disabled villain trope contributes to this phenomenon in overt and subtle ways https://thenoraproject.ngo/nora-notes-blog/the-problem-with-the-disabled-villain-trope

And now the road closures to further exclude already socially isolated severely disabled people

We are really unhappy about the unfair impact of the road closure across Tottenham, Haringey. But the counter-argument is always the dangerous 'common-good' rationale. Warnings from history should be screaming in your ears now about the daemonisation of a group of people who go against a political leaderships perception of a "common good".

No spontaneous travel for the most severely disabled: We can travel though Low Traffic Neighbourhoods under the exceptional individual circumstances policy if we have pre-approval from the local authority for every single trips, paperwork in order and have made a strong enough evidence-based case including doctors letters.
Haringey's streets are not Health streets for us: The streets are not 'healthy' streets for wheelchair users - and there are laughingly insufficient plans to make them so (A budget of £120,000 per annum to address drop kerbs).
Barriers to accessing essential appointments: The increased costs of our trips is becoming a barrier to accessing hospital appointments (of which we have a great many).
Increased cost of travel: A recent trip from back from Islington cost us £48 in taxi fares, £10 of which was from South Tottenham to West Green Road.
Lack of social infrastructure for severely disabled people: There is no, and hasn't been for the lifetime of our child, no appropriate social groups that meet his needs (the nearest is in Islington and costs £120 a day, excluding travel) or therapeutic facilities eg the nearest warmest accessible pool is in Finchley.
The risks generated by longer journeys are life threatening : some immediately so - like 2 hours stuck in the West Green Road Closure led to a seizure; some more medium term - like the increasing spinal curvature; some longer term - like breathing in toxic fumes generate by the stationary traffic on our neighbourhood roads or that are kicked out by the four ancient Haringey SEND transport buses that park next to our kitchen every day, twice a day (we are not just breathing those noxious substances, we are eating them!).
And then, just cycling and 'healthy streets' advocates trolling and being aggressive on social media towards disabled people. Any claims about the need for access for disabled people are attacked by cycliing advocates keen to push a pro-cycling agenda over a pro-inclusion agenda through the daemonisation of car drivers as 'killers' and 'causing disabilities' masking a reluctance to examine how the conduct of cyclists on pavements further excludes disabled people e.g. Risks to more vulnerable users created by illegal cycling and e-scooting on pavements, abandoned dock-less bikes and e-scooters, cyclists using blue badge parking bay posts to lock their bikes on (one of my first EVER tweets!), cyclists jumping through lights at pedestrian crossing, cyclists cycling on pedestrianised areas.

Shame on you all and shame on the leadership that says it will 'co-produce' services - just NOT low traffic neighbourhoods

"We need a council that knows its people, that listens – really listens – and collaborates with them.

“We’re not here to do things to or for people – we’re here to work with them to make things happen. I want to see Haringey become a truly, genuinely collaborative council. It’s how we’ll achieve the kind of change we were elected for. ”

“ I want the lynchpin of my administration to be about co-production and co-design and being a more collaborative counci l".

“I am a working-class woman from an ethnic minority background, so I am used to people who want to talk on my behalf".

“My own background has shown me that the way we engage and talk to our residents is a crucial component moving forward. I will be using all my insight and experience of living in Haringey to help make a difference.”

'New' leader' Peray Ahmet, May 28th 2021

https://www.haringey.gov.uk/news/cllr-peray-ahmet-appointed-new-leader

The costs of protecting our environment cannot be borne on the backs of the most vulnerable - but ONLY IF they are mini-cab drivers who work for Mike Hakata - but severely disabled people in Haringey can....

Once upon a time Mike Hakata wrote a fairy-story in a letter that he said at the time was ensuring that "the costs of protecting our environment cannot be borne on the backs of the most vulnerable" but was really about the business he worked in for decades, the mini-cab trade.

“For many drivers in our wards, these costs will be too much to bear and they will be forced out of their jobs. Other drivers will be thrown into in-work poverty and forced to work even longer hours to get by. As the Labour Party we must be firm that the costs of protecting our environment cannot be borne on the backs of the most vulnerable.”

And yet that is EXACTLY what is happening in Haringey, who have refused to give exceptions for London's fully accessible fleet of 21,000 black cab taxis.

Is Mike Hakata STILL protecting his mates in the mini-cab trade, at the cost of access for disabled people?

Haringey have refused to give exceptions for London's fully accessible fleet of 21,000 black cab taxis because

"Despite stakeholder feedback that exemptions for taxis and other private hire vehicles are important means of transport for some disabled people and other people with access needs, it is not currently feasible or practical for the Council to administer, manage and enforce exemptions where the transport is arranged on an ad hoc basis and the vehicles are subject to regular change and advance notice cannot be provided of the registration details. It is also the case the vehicles exempted would also b making transport journeys at other times with other occupants in the car that do not require an exemption and there is no way to distinguish between journeys. As such, taxis and other private hire vehicles are not included as part of the LTN Haringey Exemptions Criteria and Applications Process.

To be clear, we asked for an automatic exemption for ALL 21,000 London Black Cab Taxis that are fully accessible as they are the only vehicles we can use - but with only 500 non-black cab taxis that are fully accessible it looks to be very much like Mike Hakata is still protecting his mates in the mini-cab trade by not granting exemptions London Black Cab Taxis.

We need exemptions for London Black Cab Taxis

There are very few fully wheelchair accessible vehicles, let alone taxis. We have found it difficult to buy one, with delays of at least 18 months and there are very few that can be hired.

Accessibility features of a London Black Cab Taxi

21,000
All are wheelchair accessible
Ramps
Shields
Most have a variety of aids including intercom / hearing induction loop
Fully wheelchair accessible
Straps and locking points

Accessibility features of mini-cabs

Only 500 are wheelchair accessible
They don't have the other features such as intercom, loops, shields.

Not contemptuous towards disabled people - come join us ...

Clive, I am disappointed you linked the anti-LTN group in Haringey with an incident that has nothing to do with them

Mon, 21 Nov 2022 23:41:18 GMT

Two questions for you: does former Haringey LibDem Councillor Clive Carter link Haringey's anti-LTN group with death threats? Is this a wholly unsubstantiated smear?

Reacted letter from 12th September 2020 sent to an person in Hackney that doesn't mention LTNs - nothing whatsoever to do with the Haringey Anti-LTN protest

Low traffic neighbourhoods were introduced into Haringey in August 2022, 2 whole years after the letter sent to some who at the time was still a Councillor in Hackney but is no longer an elected official, like Clive Carter who is also no longer an elected official.

We know nothing whatsoever about the letter, who sent the letter, if the letter was reported to the Police, the outcome of any investigations nor prosecutions. The reason being, it completely nothing to do with us and the march on Monday 21st November, which Clive for whatever reason has linked it to and attempted to link it to us.

And Clive, I am disappointed you linked the anti-LTN group in Haringey with behaviour that has nothing whatsoever to do with them

I am disappointed at this new low in political discourse in Haringey.

As quickly as was humanly possible we uploaded a statement to the website, but this was not enough for Clive, who continued with his personal and pointed smear campaign against us, ignoring the protests about his views from other people who were on the march. He appeared hyper focused and fixated with us.

Wow, Clive's really starting to hound me now... its quite personal. within the space between these 2 tweets (25 minutes) there are more tweets, hearsay and unsubstantiated strongly disputed allegations.

What came next was more and more allegations not linked to the march that night. It was about other boroughs or was hearsay and Clive produced zero evidence that the people on the march were involved. Bearing in mind he was clear that he was there and witnessed 'conduct' - but there was clearly a great big difference to what he had witnessed and claims he was making, there was an assumed involvement or fraternity that simply does not exist.

What started with claims about the group who protested tonight has turned into a whole load of accusations, smears and allegations which did not involve the group who marched!

Now it goes without saying that no one in the Haringey anti-LTN group we know would issue death threats and it goes without saying that everyone would feel sympathy to anyone who got one, but I wholly disagree with the way Clive Carter has linked the Haringey protest on the evening of Monday 22nd November, with what he claims he 'witnessed' and with incidents from 2020 in another borough

Scenes from outside the Decorium, Wood Green, on Monday 22nd November, described by Clive Carter as a mob instigating 'mob rule' and a group he then tried to link with threats of and actual violence and vandalism.

SHOUTING "ABLEISM"

Sun, 20 Nov 2022 13:33:22 GMT

Its time for the government to take action against ableism, particularly around transport and cycling

Authorities need to use their public sector equality duty to address ableism and address the issue of harassment on social media of people with protected characteristics.

I do not have to justify mine or anyone else's accessibility needs to anyone... Some people do NEED motorised transport. To deny people their access needs is ableism.

FORCING a view on the needs of others about their needs is ableism

Lovely Mik Scarlet... I dont know how he maintains his civility sometimes

With great patience, more than many could muster, advocate and journalist Mik Scarlet explained that whilst a wheelchair bike might work for some, the post was a challenge to people to justify the use of motorised vehicles rather than a question about inclusive design.

The vile ableism continued...

When we first got the diagnosis of severe cerebral palsy we googled everything and everyone to ensure that our family had the best life possible. This included being active and getting out and about. In 2011 Mrs Leveson and a group of gym goers rowed 20km to raise nearly £3,000 for a bike for our child. It worked for a bit, but his tolerance because of muscular skeletal issues got less and less over the years.

More recently, as his hips and spine have deteriorated, we very occasionally pop up to pedal Power in Finsbury Park, maybe once or twice a year, to use a bike very similar to the one shown. But is it not a mode of transport. Maybe if the next tweeter had spent a fraction of a second googling my post from last year he would know that...

https://www.difficultparent.com/pedalpower-the-inclusive-cycle-club-in-north-london

More and more of us defended the access needs of people - but why should we have to? We do this because the government isn't.

Something needs to be done about this. People are being designed out of the transport system by vocal and hostile pro-cycling advocates.

We should not have to spend our free time defending the access needs of people.

Central government, Transport for London and local authorities need to get their acts together on this. Talk to groups about why this is ableism and act as required by their Public Sector Equality Duty

Eliminate unlawful discrimination, harassment and victimisation and other conduct prohibited by the Act.
Advance equality of opportunity between people who share a protected characteristic and those who do not.
Foster good relations between people who share a protected characteristic and those who do not.

https://www.equalityhumanrights.com/en/advice-and-guidance/public-sector-equality-duty

"the costs of protecting our environment cannot be borne on the backs of the most vulnerable"

Sat, 19 Nov 2022 23:26:43 GMT

What changed? Back in April 2019, Cllr Hakata recognised the economic and social impacts of traffic reduction schemes...

Back in 2019, Haringey declared a Climate Emergency... ... and the congestion charge was rolled out to minicab drivers

Back in April 2019 the congestion charge was rolled out to include minicabs , who up until then had been exempt.

At that time, Councillor Hakata, who worked in the minicab business for more than a decade, wrote to Sadiq Khan about the social and economic cost of this .

“For many drivers in our wards, these costs will be too much to bear and they will be forced out of their jobs.

“Other drivers will be thrown into in-work poverty and forced to work even longer hours to get by.

“As the Labour Party we must be firm that the costs of protecting our environment cannot be borne on the backs of the most vulnerable.”

The Councillors who signed this letter included Cllr Julie Davies and Cllr Mike Hakata [at the time of writing both were Councillors for St Ann’s].

Now that Councillor Hakata is no longer in the minicab business he seems less bothered about the social and economic consequences of environmental policies and the extra cost of travel to the most vulnerable in our community.

Why the change of heart? The Low Traffic Neighbourhoods are directly borne on the backs of Haringey's most vulnerable.

With reference to The State of Haringey Report 2022

Mike's LTNs are borne on the backs of more vulnerable living in the more deprived parts of Haringey

Mike's LTNs are borne on the backs of people on universal credit in Haringey

Mike's LTNs are borne by the lung of kids living on the main through roads with the highest pollution onto which he is pushing MORE traffic

Whose lungs? OUR LUNGS

LTN objections need to be sent to Traffic.Orders@haringey.gov.uk

Sat, 19 Nov 2022 14:40:00 GMT

A template letter to be sent to object to the lower traffic neighbourhoods

To whom it may concern:

I wish to object as person who lives or works in Haringey.

This scheme should not be made permanent .

Clean air for all - not the privileged few: I appreciate clean and fresh air as much as anyone. However, the St Ann's LTN has diverted an insane amount of traffic onto Green Lanes and Seven Sisters, which is home to thousands of our less-advantaged residents. Buses now routinely take up to an hour to pass through half-a-dozen stops on Green Lanes. There is gridlock everywhere. Seven Sisters is congested even for buses and cyclists during the evening peak travel times. The emergency services are being hampered by congestion. And I do not believe cyclists' safety has been remotely improved. The air is most definitely poorer as a result.

A disgusting and unjustifiable experiment on the poor and vulnerable. These schemes may be popular with the wealthier, generally white, generally better-educated people who can afford to buy homes in the sidestreets which make up the LTN, but the EFFECTS are felt most by those living and working on main roads like Green Lanes itself. These tend to be more marginalised, and less advantaged people : it is poor, disabled, unpaid carers, less-educated, BAME and elderly residents who are bearing most of the brunt of this LTN. Many have English as a second language. Many are less able or confident to speak out against it. Who speaks for them? Is Haringey operating a policy where those who shout loudest are obeyed? It is so wrong on many levels. Those who are already the wealthiest in our community should not be able to turn their public roads into quasi-private roads by getting them placed within an LTN. Their property prices rise, while the lung health of the poor declines. Shunting traffic and fumes onto the poor isn't right. And it's certainly not green or progressive.

You are adding further restrictive administration and unwarranted intrusion to the barriers to access disabled people already face.

Restrictive admin: Blue Badges are awarded to people with high mobility issues, broadly because you can’t walk more than 50 metres, so why are no Blue Badge holder given an immediate and automatic exemption , adding a further unnecessarily burdensome administration to disabled people who will have already had to go through long and multi-stepped process to get the badge in the first place (Diagnosis, application for certain benefits, application for blue bade, application for blue badge bay, application for designated permit blue badge bay plus the admin related to getting a Motobility Vehicle).
Barriers to movement: We have to tell you about our journeys through more than one Low Traffic Neighbourhoods and apply for permission to move through them. You want to know about the specific start and ends points (full postcode), roads driven through and previously driven through, days, times, frequency, filters, medical conditions, impact on driving, an explanation on why you require access. You MUST exaplin why you health will be adversely impacted. FOR EVERY JOURNEY

West Green Road closure on Thursday 3rd November 2022 highlighted the reality of the issues identified in equality impact assessments. There is no accommodation for the regularly occurring road closures, through traffic accidents or flooding, that mean the main roads become impassable and people cannot get home. This has a significant impact on everyone getting home, but particularly people with complex medical conditions and led to at least one widely reported incident of a disabled child becoming very unwell and requiring ambulance support. [Evidence can be supplied by Brian Leveson difficultparent@gmail.com if required, as it involved his son].

Please register my objections to this scheme being made permanent.

How do you refute a smear campaign? With FACTS...

Sat, 19 Nov 2022 13:26:38 GMT

Road closure skeptics have found themselves the subject of smears and social media abuse. I have been wondering, how can we deal with that?

Caveat

I have no legal training, this is not an advice column, there are my own musings in the public domain as the smears have been made in the public domain.

Are we talking about an orchestrated smear campaign?

I don't know if we are experiencing an orchestrated smear campaign or not. What I have seen and screenshots are people in power in the community - leaders at the council, church leaders, charity patrons and other campaigners - making allegations based on 'fears', things they have 'heard' and seemingly unsubstantiated assumptions of the actions, political beliefs, social prejudices and motives of those of us who are opposed to wider spread road closures known locally as 'low traffic neighbourhoods' or 'LTNs'.

This produces to camps: the pro-LTNers and the anti-LTNers.

What can we do about it?

Firstly, ask for the evidence to support the claim being made. - We have made numerous requests for evidence, none has been forthcoming.
Secondly, the hearsay is of allegations of allegations (not a repetition there), they are frequently already re-stating 'something' that 'somebody' said happen to 'somebody else'. No one should give credence to such a childish game of whispers!
If you need to take actions because of harassment including false allegations you need to get evidence - screenshot, photograph and record.
Follow the appropriate complaints procedure
1. Organisations have Codes of Conduct for members and formal complain procedures . Ask for copies of both, be clear what you think the breach is, provide evidence and follow the complaints process.
2. You might get fobbed off. You need to escalate to the next level of the procedure and keep escalating until all of you concerns are addressed.
Use the social media report functions to report harassment.
Use Cease and Desist letters to tell the people to stop the unwanted behaviour.
Go to the police if you feel you are being subjected to targeted harassment

One final point - this is who we are!

I am the member of a wide range of Haringey based social media groups campaigning against the road closures.

I have never seen any activities or threats of activities or extreme or radical political beliefs suggested by some commentators that someone else fears they might experience.

We are just normal regular law abiding tax paying citizens who aren't used to the political games and in fighting of Haringey.

Please consider this to be a CEASE AND DESISTS open letter to all local Haringey based people who are in favour of road closures.

Could you kindly refrain from smearing people on the grounds that they are, but not limited to

Disabled people concerned about access - in addition you have no right to ask about the specifics of a persons disability
Informal unpaid carers who are caring for a friend or family member for no financial gain but are having to juggle multiple responsibilities at the same time - in addition unpaid carers are twice as likely to suffer ill health and give up work
Paid carers and therapists, people who go to clients homes to deliver health and social care, who are often self employed and do not have a fixed based but have miles to travel across North London to look after their clients
People on low incomes who are struggling with the cost of the extra miles and times spent in traffic in the middle of a cost of living crisis
People who live on roads with the extra traffic on, either through displacement or design. They have a right to be concerned about intentional congestion and its impacts on their health and wellbeing.
People with health conditions who are unable to get to medical appointments without long delays in traffic or whose health conditions are exacerbated by long journeys and who are in real physical pain as a result.
People who are small business owners who see that their businesses are suffering in the middle of a recession suffering further because road closures reducing access to their business.
People who Haringey Council have told them their road is too dangerous to push a wheelchair along.
People who are concerned that disabled people are 5 times more likely to be injured as a pedestrian than an able bodied person and are concerned that there are more cyclists without any actions taken to mitigate poor cyclist behaviour will lead to even more injuries or disabled people too afraid to go out.
People who are appalled that decided to conduct a social experiment to encourage transport modal shift on those most vulnerable residents, in an area of less wealth and higher rates of disability at the time of a cost of living crisis. Why Tottenham and not Crouch End? Why Tottenham and not Highgate? Why Totenham and no Muswell Hill? Why Tottenham and not Alexandra Palace?

This blog isn't about whether I agree of disagree with a person about road closures - its about being clear who were are, because we are not the smears being thrown at us.

I struggle to extrapolate that anti-LTNers are :

A hate mob
Crackpots
Child haters
Bigots
who cheer on vandals, bullies and criminals

What I see is a funny photo of a camera with a box on it and someone else being reminded of the song "The sun has got his hat on. hip hip hip hooray!"

I see no basis for the unsubstantiated smears. But I am not a hater .

Harder to care with road closures

Thu, 17 Nov 2022 21:45:27 GMT

Haringey is making one carers life hell through road closures, denying her family a blue badge and refusing her son a support plan

A quick briefing on informal carers

The Department of Health and Social Care has described an informal/unpaid carer as: “…someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction” , as long as they are not employed to do so. https://commonslibrary.parliament.uk/research-briefings/cbp-7756/#:~:text=someone%20who%20provides%2... .

Delivering that care often comes at a cost to the carer

Increasing hours of care often results in the general health of carers deteriorating incrementally. Unpaid carers who provide high levels of care for sick, or disabled relatives and friends, are more than twice as likely to suffer from poor health - https://www.england.nhs.uk/commissioning/comm-carers/carer-facts/
5 million people in the UK are juggling caring responsibilities with work - that's 1 in 7 of the workforce.
However, the significant demands of caring mean that 600 people give up work every day to care for an older or disabled relative - https://www.carersuk.org/news-and-campaigns/press-releases/facts-and-figures

Informal carers and road closures

"I’m sick to death of Haringey Council" writes one informal family carer fed up of the lack of help from them and now road closures making her life harder as she tried to care for four family members with long-term health conditions and disabilites.

Our carer, 47, looks after her Dad 77, Mum 76, a brother with downs who is 52 and her son with autism is 10 years old.

Recently she had to take her mum and dad for blood tests. "Mum and Dad live on Gloucester Road and normally it would take 6 mins to get them to the Laurels Medical Centre on St Anns Road, but not do anymore! We ended up getting blood tests done in the North Middlesex Hospital, close to 5 miles away".

On top of all that Haringey Council have refused the family a Blue Badge and her son an educational, health and care plan - you just couldn't make it up.

End the injustice of the road closures now!

Road closures and 'at home' therapists

Thu, 17 Nov 2022 07:40:05 GMT

Road closures are impacting on how therapists work - but social services have dumped all the responsibility back on one therapist

Independent lives - Therapy at home

Having therapy in your own home is a service some people need to live full and independent live. But road closures caused by traffic calming schemes can impact on these services.

A therapist has written to us about the impacts on delivering care...

Haringey is putting me in a difficult position as I am self-employed and regularly visit residents with disability as a physical and massage therapist as well as a rehabilitation exercise tutor I find myself also volunteering to bring food and essentials to some of the patients who are housebound.

I mainly support their fitness , and I provide massages. I also have appointments across the borough, providing valuable service for the borough Health and fitness. I cannot afford to be in too much traffic as we have a short limited time to reach each scheduled appointment.

The road closures are denying me the right to work and the right for people to receive my therapeutic services.

The last closure of Bruce Grove will highly affect my journeys between South Tottenham, Wood Green and Crouch End My clientele extends to Enfield and Brent , therefor the new closure of bounce green has already affected my business.

Brent has not pursued the LTN which was in place during the lockdown. As the traffic was low it was not an issue as mainly all roads were clear, In 2020 and 2021 brent asked me to continue looking after my patients even though I live in Waltham Forest.

Social services has been clear that therapists of my class have a responsibility towards my vulnerable clients.

Haringey LTN isn't taking in consideration the delivery of such services decreasing the benefit of health and social care in the borough.

The increasing level of stress and expenses (petrol) caused the scheme is a problem for me doing me from doing my job.

Road closures are a form of lockdown and will highly impact the most vulnerable.

Fed up of this? Join the march - MONDAY 21st November 2022

Tottenham will be marching against the road closures on Monday 21st November 2022 meeting at Downhills Park Cafe at 5:30pm to arrive at Haringey Councils full council meeting at The Decorium at 7pm.

The route will be via West Green Road and the High Road through Wood Green and left onto Station Road.

Ableist abuse on social media

Wed, 16 Nov 2022 22:40:55 GMT

Abuse of disabled people from the cycle lobby and pro-LTN lobby is normal behaviour on Twitter - where is the outcry?

On motorists...

ABLEISM 101: The world wasn’t built with people with disabilities in mind, and because of that, the world we live in is inherently “ableist.”

The world wasn’t built with people with disabilities in mind, and because of that, the world we live in is inherently “ableist.”

https://www.accessliving.org/newsroom/blog/ableism-101/

The social model of disability

There are two models of disability: the medical model and the social model. The medical model treats disability as a health condition. The social model views disability as a concept created by humans.

https://www.medicalnewstoday.com/articles/ableism#disability

And in Haringey, we have adopted the social model of disability. Disability Action Haringey (DAH) was formed in 2020 with the aim of supporting disabled people living in Haringey to maintain their independence and freedom . DAH are committed to the social model of disability and building a society that accepts and accommodates everyone.

DAH doesn’t want any individual to be overlooked, which is why they decided to take action and establish DAH. With Trustees who have both personal and professional experience of disability, they are well-placed to provide the support that can enable the community to be more independent.

DAH are working towards creating a community where every individual feels included, with access to the services they need to live fully and independently

https://www.haringey.gov.uk/children-and-families/local-offer/preparing-adulthood/disability-action-...

Equality Impact Assessments for Low Traffic Neighbourhoods - disablities

Haringey's own plans recognise the needs of people with mobility issues

Older people: Elderly people also have increased GP and hospital appointments and may need to travel by motor vehicle more due to mobility issues
Both disabled and elderly residents: (sometimes overlapping) are more likely to have mobility issues that require motor vehicle transportation.
Unknown impacts: The actual impacts of the scheme on journey times, and by extension, on disabled and elderly residents who require access to motor vehicles, are unknown
https://www.haringey.gov.uk/sites/haringeygovuk/files/st_anns_ltn_equality_impact_assessment.pdf
Many disabled people have mobility impairments, and some are wheelchair users meaning quality of footway surface and presence of obstructions is also key to accessibility
Driven trips that previously relied on minor roads to avoid major roads , disabled people may find journey times vary but this will be dependent ... ... disruptive incidents on main routes which are common in the capital.
https://www.haringey.gov.uk/sites/haringeygovuk/files/bruce_grove_ltn_equality_impact_assessment.pdf

Ableist abuse

Dealing with tweets like the one above is a usual part of my day on twitter fighting the corner for those people who are wholly reliant on motorised vehicles.

Its personal.
its insulting
Its normal

What cause this particular gem...

There was an Evening Standard article about the abuse of cyclists by trolls on twitter - I challenged the Standard to be impartial in their reporting - you can read their article here: London bike riders facing ‘dehumanising’ abuse online, British Cycling say | Evening Standard

And he wasn't the only one who was 'dehumanising'

On more than one occasion we have reported cyclists for their conduct around the wheelchair. I was discussing this on Monday with one of the Police Officers on our march against LTNs in Tottenham, when a cyclist did the very thing I was talking about.

An angry cyclist cut in front of me, not seeing the wheelchair and had to swerve quickly to avoid my son, not that this does not still cause significant upset for my son. The impact of his upset can be very damaging to him - and those who know us and him know just how bad that can be.

ABLEISM: According to analysis of the UK’s National Travel Survey, disabled people are five times more likely to be injured as a pedestrian than non-disabled people

But some times, you are just left speechless - this regarding those abandoned dockless bikes

This person kept bombarding me with questions insults and untruths like

Motorists cause disabilities - "no ifs, no buts"
Motorists exacerbate disabilities - no space there for those of us who are reliant on cars
And I am apparently dishonest, twisted and using my disabled child as a shield
And i don't complain about cars on pavements

After hours and hours of him bombarding me I couldn't be bothered to reply to this

ABLEISM: YOU OWE NO ONE AN EXPLANATION OF A DISABILITY NOR NEED FOR ADJUSTMENTS

Everyone has a right to reply...

But then again, something's aren't ableism - they are just the normal abuse from a pro-cycling troll

To be honest, this was a tweet to far - and I blocked him.

TOTTENHAM MARCHES AGAINST ROAD CLOSURES

Tottenham will be marching against the road closures on Monday 21st November 2022 meeting at Downhills Park Cafe at 5:30pm to arrive at Haringey Councils full council meeting at THE DECORIUM at 7pm.

The route will be via West Green Road and the High Road through Wood Green and left onto Station Road.

MAD, BAD and DANGEROUS TO KNOW

Mon, 24 Oct 2022 11:47:42 GMT

Divide and conquer is the order of the day as yet another person is bad mouthed by having their mental health questioned, I am so out-raged I have to speak out

DIVIDE AND CONQUER

So and so said such and such about me!

When I first got involved in parent carer campaigning I was frequently told a particular parent carer representative was mad, completely mad, bonkers. This came from the officers of the CCG and the SEND services. Divide and conquer.

Moving forward, an officer said that a good friend of mine at the time was also 'mad'. They in turn were then told that I needed to 'be more professional'. I dismissed the bad-mouthing, they believed it. I dropped them. Divide and conquer.

Moving forward again, a Councillor told me that a certain good friend of my family was 'dangerous'. They in turn were then told that I needed to 'calm down'. Divide and conquer.

Trying to get Changing Places into parks, an Officer of the local authority told me there was a certain prominent campaigner I should 'avoid', they too were 'bad' AND 'mad'. Divide and conquer.

Next, I was labeled as responsible for the failure of co-production in Haringey by a now leader of the local parent carer forum. Another leader of the forum wasted no time in telling other parent carers that I was a racist. In the shortest amount of time they had adopted the behaviours of those that had formally wanted to challenge. Divide and conquer.

There has been plenty of cruel and unfounded comments about those of us who are skeptical or have concerns about Low Traffic Neighbourhoods (LTNs) on social media, some by people in the highest of leadership positions who really should know better. Divide and conquer.

I was then recently contacted, again, by another person in distress that they were being bad mouthed and accused of being mad. Divide and conquer.

THIS BEHAVIOUR NEEDS TO STOP.

It is incumbent upon all of us that when another person who challenges the policies of Haringey Council is described as 'mad' 'bad' or 'dangerous to know' we MUST challenge it and simply say that is not an appropriate thing to say about anyone, because the officers and Councillors of Haringey Council are not in a position to diagnose mental health issues or otherwise in the people who challenge them.

If you have not been in this 'game' a long time, you might mistakenly believe that bad mouthing - that yo really are mad or bad or dangerous.

Utter rubbish. Complete and utter rubbish.

But the behaviour needs to stop, starting with those at the very top setting a much better example.

Mental health right now

One in four adults and one in 10 children experience mental illness, and many more of us know and care for people who do.

https://www.england.nhs.uk/mental-health/

This blog is not intended to degenerate mental health, not mental health issues.

If you need help

Speak to your GP
Self refer to 'IAPT' talking therapy: http://www.lets-talk-iapt.nhs.uk/make-a-referral/
Help from MIND in Haringey: https://www.mindinharingey.org.uk/our-services/counselling/

Hell - T - N s

Wed, 19 Oct 2022 22:45:08 GMT

Life 6 weeks into living between two Low Traffic Neighbourhoods.

Life in the middle of an experiment

We have been living for 6 weeks now in Haringey's 'streets for people' traffic experiment and I have little to no confidence in the ability of Haringey to listen to residents and respond appropriately to address concerns about the impact of their experiment on disabled people.

I would have thought that given that one of the fundamental reasons for the experiment has been proven to be wholly incorrect, that being data from the Department of Transport showing a sharp increase traffic was wrong and has now been revised, the right thing to do is not continue with the 'experiment'. But this has not been the case.

The reluctance to revise the experiment and the way the officers and Councillors conducted the consultation and engagement activities makes me strongly questions the integrity and objectivity of our local decision makers.

Summary of the main points

In summary

the data that was used as the basis for the decision making and presumably traffic modelling has been show to be wholly inaccurate and unreliable. This then leads me to question the outputs of the traffic modelling (they did model this experiment - right???). Given that the data input to the model was unreliable, then it is not unreasonable to suggest the outputs of the traffic modelling are utter rubbish.
there has been no mitigation for the displaced traffic which we are told will eventually evaporate , because the model with the dodgy input data says it will ... ... so as we await the evaporation of cars, on our road situated between two LTNs we are experiencing increased traffic flows and poorer air quality
longer journey caused by LTNs cause increased travel times, greater cost, discomfort and can make some people seriously unwell

Dodgy data - London traffic

The Department of Transport (DFT) has revised its estimate for traffic flow on minor roads see this DFT page for more details Minor roads traffic estimate review - technical report . The revision shows that traffic did not increase as much as was originally thought – and for inner London, traffic on minor fell.

Dodgy data - Haringey Traffic

The overall trend over many decades has been a decrease in traffic flow, although it is difficult to take a view on more recent data because of the pandemic. Link to Local authority Haringey Traffic Statistics.

Trapped between two LTNs feeling the impact of displaced traffic

Traffic on Lawrence Road Traffic on Lawrence Road, situated between two LTNs and a ‘link road’ between two LTN boundary roads has seen increased traffic numbers due to displaced traffic. Refer to Haringey My Maps.

Significant increase in morning rush hour traffic

Still from Youtube : This is a 24-vehicle queue on Lawrence Road southbound onto West Green Road at 8am on a Thursday morning. Pre – LTN the 15 minute traffic flows was 24 vehicles for the 15 minutes starting at 07:45hrs and 45 vehicles for the 15 minutes from 08:00hrs. Refer to Haringey My Maps.

· We are not seeing the benefits of LTNS i.e. reduced traffic and better air quality

· Road and housing is nor designed for this level of traffic

· Taller building inhibit air dispersion

· Gardens are not designed with hedges (and Estate regulations restrict planting).

Impact on severely disabled people

Increased journey times of SEND transport: before LTNs were introduced our sons journey times to school were broadly half an hour and he’d be home just before 4pm (school finishes at 3:30pm).

Firstly, LTNs were introduced in Islington and his coming home time drifted to past 4pm, about 4:10pm / 4:15pm.

Since the St Anns LTN has been introduced this has now moved to closed to 4:30pm, as long as there are no incidents and accidents.

Incidents and accidents greatly increase his travel times, and he has been getting home closer to 5pm on some occasions. Of course, there were incidents prior to LTNs, but they seemed to be less frequent and the impact was less as there were roads open into which traffic could disperse. Vehicles are stuck in traffic jams unable to move. Despite public statements to the contrary, the SEND transport department have been dismissive of our concerns saying things happen ‘from time to time’. Those times are more frequent and are having a greater impact.

Before the summer, this meant our child was stuck on a SEND Transport bus with no opening windows and no air conditioning in Amber Weather Alerts. He had multiple seizures on arrival at school, home and in hospital. On four occasions this necessitated emergency intervention and paramedic support.

Since then, we have found out that our child has a severe curvature of the spine that requires a brace. Sitting in his chair, bouncing over road humps is very painful for him. He arrives home and at school unsettled and in need of getting out of his chair and a rest. All worsened by LTNs lengthen journey times.

We monitor his travel times using an app.

Increased journey times to and from hospital appointments: our child has many conditions as he is severely disabled and had many appointments. Because of the number of appointments that we have (a total of about 7 between September and December, but that will probably increase), we take taxis. This is because our child needs 24/7 care; we have limited leave and can’t always both be off; there is limited or no parking at hospitals and public transport is not an option for our child. Last week we had 2 appointments and spent over £200 in taxi fares.

Increased scarcity of taxis : the purpose of LTNs is to drive cars off the road, and this has included taxis. (Currently 19,000 from a pre pandemic 22,000 – see TaxiPoint ). We have found that Taxi Drivers are less likely to pick up ‘ Taxi Card’ requests and the ComCab app automatically add half an hour wait to Taxi Card requests. (Taxi cards offer reduce taxi costs for disabled people).

There has been no consideration of the impact of an increase in the number of cyclists on disabled people. Cycling on pavements, jumping lights and discarded 'dockless bikes' are making pavements and roads a very hostile environment for disabled people.

We've been hassled and alarmed by pavement cyclists
We've had a terrifying near miss on Philip Lane when the cyclist did not see the wheelchair on a crossing.
Dockless bikes are left with alarming frequency next to and around the 6 blue badge bays on our road - and reporting to the companies who provide these bikes is not making any bit of difference.

An illegal, unequal and unfair SEND Transport policy?

Tue, 18 Oct 2022 19:32:26 GMT

A consultation charter not followed, questions about the legality and fairness of a policy unanswered ... Oh dear, oh dear, oh dear, I despair at the the lackluster performance of the officers of Haringey SEND at the October Cabinet meeting.

Where do you start?

I don't know where to start with the car crash performance of the officers of the Haringey SEND department and their political Godmother Zena Brabazon at tonight's Haringey Cabinet meeting. Questions regarding Haringey's new SEND Home to School Transport policy for children with special educational needs and disabilities were met with excuses from the departmental leadership and legal team as limp as 'that was an anomaly', 'we will get back to you' and 'The Chat has been Turned Off' when the response directly contradicted what is currently on the 'Local Offer' website.

The sickeningly sweet sycophancy from Haringey disabled children's Godmother

Zena Brabazon was very keen that we all knew just how long and how much the department had worked with parents - and they had.

Meetings were held, attended by one or two people at most, some - none!.
Consultations had been responded to - and they had - but the results of the consultation were not published as promised
The Policy has been developed over many years - so you think the Officers would be well prepped to answer questions
And the 'new' Haringey funded and approved parent carer forum apparently waxed lyrical about how marvelous the Haringey SEND Transport Department are to the SEND Executive Board (perhaps they want to avoid going the way of the last parent carer forum who lost their funding after saying consultations were a 'tick-box exercise' in Haringey to the previous SEND Reforms Board)
The Department has had no complaints so far this academic year - of course if you do complain, you can find yourself being offered the unaffordable 'personal transport budget'.

Here we go!

Let's start with a stellar performance from the Leader of the Opposition, Luke Crawley Harrison who asked three questions and only three questions. There are many more questions to ask about the policy, but for the sake of democracy Luke is only allowed three.

Legality: Did the policy take into account all legal precedents regarding SEND Transport? Could Haringey be sure that they were not setting themselves up for an avoidable legal challenge?
Fairness: Luke asked about 'the cost of living' (inflation) and how that had been factored into the policy with regards to personal budgets?
Transparency - The Consultation Charter: Haringey SEND had published on their local offer page that they would publish the results of the consultation before September 2022.

QUESTION ONE: On the question of 'legality'... (they didn't know - 2 and a half years in the making, and they didn't know)

Luke asked if the new SEND Transport Policy followed all legal precedents and would ensure the council would not face any avoidable legal cases in the future. Luke gave the example of parental preference and the decision made by the judgement of S and another v Dudley Metropolitan Borough Council [2012] EWCA Civ 346 . Link: https://www.ipsea.org.uk/s-and-another-v-dudley-metropolitan-borough-council-2012-ewca-civ-346

Haringey's policy says: where the school named in the child’s EHCP is the same as the parents’ preference, even though it may not be the nearest option. In instances where a school is named in an EHCP and the parent wishes to send their child to a different ‘preferred’ school, LBH will expect the parent to make their own travel arrangements, other than in exceptional circumstances.

The Court of Appeal set out the test that LAs should apply when determining whether or not they were obliged to pay for transport to a parent’s choice of school:

First it should be established whether both schools are in fact suitable, and whether arrangements could be made for the child to attend the LA’s choice of school (i.e. a place is available). If the LA’s choice is not suitable, or there is no place available, then the parent’s choice is the nearest suitable school.
If both schools are suitable, the cost of providing transport to both should be established and taken into account when considering whether the parent’s choice is incompatible with the efficient use of resources.
Only if the total cost of the parent’s choice of school compared to the LA’s choice of school (including transport) is so significant as to represent an inefficient use of resources, then the LA can name two schools, with the condition the parents provide transport to the their choice of school.

https://www.ipsea.org.uk/s-and-another-v-dudley-metropolitan-borough-council-2012-ewca-civ-346

QUESTION TWO: On the question of 'fairness' [there was no acceptable response from the council that gave us 'The Fairness Commission'].

Haringey's papers to Cabinet say Finance 8.1 The Travel Assistance budget for 2022/23 totals £4.7m and as at Quarter 1 is showing a pressure of £2m where there are significant rises in fuel costs, inflationary pressures and more eligible children requiring transport. The ongoing financial consequences of the policy

https://www.minutes.haringey.gov.uk/documents/g10381/Public%20reports%20pack%2018th-Oct-2022%2018.30...

But in response to the Leader of the Opposition's questions about inflation and personal budgets , Jackie Difolco, Assistant Director said didn't seem to have an answer that made sense ... it was some nonsense about this being a new policy [that they have been developing over many years, since February 2020 according to the SEND department Godmother] and apparently with parents, apparently none of whom are struggling with the cost of living aka inflation.

We blogged about the cost of living at the beginning of the year: https://www.difficultparent.com/haringey-send-passing-on-risk-in-uncertain-times-to-vulnerable-famil...

The should have asked Council Leader Peray Ahmet, as she says herself, many people have approached her personally about the cost of living crisis, particularly the cost of fuel...

QUESTION THREE: On the question of Transparency - the apparent lack of it is due to an anomaly

When the Leader to the opposition asked about where were the results of the consultation, as after the consultation Haringey SEND promised that they would be published before the start of September.

The Consultation Charter says: At the end of the consultation we will communicate what will happen next, when the results of the consultation will be published, when and by whom the decision(s) on the proposal(s) will be taken, and when the decision(s) will be published

Jackie Dilfoco said in response: This was an anomaly. As soon as they released this (6th September) the notice changed.

It now reads " The SEND transport consultation is now closed and responses will be published in due course. We will send a formal report to Cabinet outlining the proposed changes to the policies following consultation, with draft policies for approval. In advance of the final policies being published, we will be hosting a Q&A session to share the consultation findings and answer any questions" ... but with no opportunity for scrutiny of the consultation results and the finalised policy before the final policy is published.

A final word from Haringey's disabled children's Godmother

The SEND parent carer forum thought that the department had really tried to improve things with this policy...

I would hope that no parent and nobody 'representing' parents would ever agree to a disabled child having their home to school transport removed because of their disability, short term or otherwise.

LTNs and us - how Haringey council failed to keep their coproduction promises again

Wed, 24 Aug 2022 02:48:33 GMT

Its the same old sorry story when it comes to Haringey working with residents - The street we live on links the boundary roads of 2 Lower Traffic Neighbourhoods (LTNs) and we are already seeing an increase in traffic.

St Ann's LTN came into force 22nd August 2022

There seems to be 6 times more traffic on our road already, with only one LTN introduced and another on the way

Prompted by a seemingly large increase in the number of vehicles passing by our house now the St Ann's LTN kicked in on Monday, I thought I'd do my own quick experiment on the traffic flow on our road through a 'random sampling' of the data on our doorbell cam. I took random one minute intervals between 11am and 2pm over Monday and Tuesday this week and compared then to data collected last week and the week before, before the LTN kicked in.

What I found was

Before the LTNs - somewhere between 0 and 2 cars flowed passed the doorbell cam in a minute
Introduction of one LTN - there are now up to 6 cars passing in a minute
There is still another LTN to be introduced in the next few weeks - what impact will it have? Who is considering that impact?

I accept wholly the limitations of the scientific rigor of this 'experiment'

No mitigation at all of the impacts of the 2 LTNs schemes on particularly vulnerable residents

Our road is in the unenviable position of not being in an LTN, not being a boundary road but an enticing rat run for anyone struck on the St Ann's LTN 'boundary road' West Green Road and the Bruce Grove LTN 'boundary road' Philip Lane.

There has been no mitigation whatsoever for the impact of the introduction of the LTNs on the road. We warned the Haringey Highways Department of our concerns during the 2 "consultation" meetings (their word, not mine) with the Joint Partnership Board (JPB), hosted by Public Voice, particularly the impact of the schemes on sick and disabled residents housed in the specially adapted social housing 'life time homes' on our road.

Mitigation might have included, but not been limited to:

Monitoring of traffic flow through traffic counters
Air quality monitors
Transparent publication of data collected
Traffic calming measures on our road
Consideration of the impacts when providing council services e.g. SEND Transport using the Bus Stand instead of dangerously parking on a crossroads in the middle of Lawrence Road(!)

How were issues raised in the consultation addressed?

We have blogged previously about the lack of transparency during the consultation and coproduction phases of this work which have left many feeling undervalued. The behaviours of officers have included:

Not responding to requests for clarification of the processes and purposes of the work (See our blog: https://www.difficultparent.com/i-don-t-believe-you-ltns-exemption-policy )
Sending a multi-paged report on the exemptions policy to the Joint Partnership Board of disabled Haringey residents and their carers with less then 24 hours to respond
Not demonstrating how they meaningfully considered feedback, lack of traffic monitoring / calming on our road being a good example of this.

Blaming residents for a lack of coproduction

In the Amaze report published in 2020, Haringey Officers tried to blame the parents of disabled children for the lack of coproduction, although that was not the conclusion of the reports authors who found there was a lack of systems, culture and practice within Haringey to support coproduction.

Blaming residents, who freely give up their time, good will and expertise to help codesign and coproduce deliver effective, efficient and economic services that meet needs shows a callous disregard for the vulnerable residents of Haringey and their carers. Many, if not all the residents I heard in the JPB meetings with Haringey Highways had experience well beyond that of the knowledge displayed by the highways team. In our experience, that is exactly where a big part of the problem with coproduction lies. Residents are experts of many decades experience of issues that the officers are not capable of understanding and there is a skill set there that is quite simply missing - the ability to take feedback and transform it into effective solutions, especially when dismissing concerns or refusing to acknowledge problems is the easier option. SEND parents are well versed in the laws and statutory guidance that governs the provision of services for their child, and more frequently than not, parents have a better understanding than officers, which was another finding of the Amaze report. It seems this issue is not limited to Children's Services in Haringey.

Residents are not to blame for the lack of coproduced services nor are they to blame for council services that fail to effectively, efficiently and economically meet needs. Council leaders, both political and officers, need to reflect on the process of 'coproduction' in this case and learn some lessons about

Clarity of the purpose of coproduction - it seems quite disingenuous that officers that must have to work internally and externally with teams of professionals to produce services are somehow incapable of teamwork and good project management when it comes to working as part of a team with local residents
Clarity and transparency regarding timelines
Share documents in a timely fashion - share papers at least two weeks before meetings and at least 6 weeks for consultations.
I've said all this before - as did the Amaze report
Stop blaming vulnerable residents for local authority failings

Bruce Grove LTN will be in place from early September 2022

SEND Transport are using an inequitable policy to put my child at risk

Fri, 19 Aug 2022 11:11:55 GMT

A coproduction failure to 'design services to meet needs' has led to the council using inequitable policies to justify putting a severely disabled child at risk

Summary

In May 2021. Haringey's council leader, Peray Ahmet pledged that a lynch-pin of her administration would be coporduction in a more collaborative council. In May 2022, Haringey Labour local election manifesto committed to empower local communities and put Haringey residents at the heart of decision making.

Haringey council coproduced 6 disabled parking bays and a bus stand for SEND transport in order to meet the needs of families with severely disabled children who were facing parking fines, having to use 2 disabled parking bays between 5 families, the bays were not accessible and threats of bailiffs sent by Haringey Council coming around.

So, last summer, parents set about codesigning a workable solution with Haringey Highways. SEND Transport were contacted to be part of the process. The statutory responsibility for transport for 16-19 year olds (who have started a course before their 19th birthday) rests with local authorities. (Reference below)

Since then, the dedicated parking bays have been installed and a bus stand for use by SEND Transport buses. But SEND Transport refuse to use the bus stand. Instead the 4 SEND transport buses park on the pavement across an access road and a raised pedestrian crossing point. This reduces access and visibility for pedestrians and motorists.

The headmaster at our son's school was told by SEND Transport, with whom the legal duty to get our son to school lies, that this was because the pedestrian pavement to the bus stand was hazardous and riddled with tree roots (it isn't - see the video).

After posting the video of the non-dangerous pedestrian pavement online, we were written to by the SEND Transport department. The SEND Transport department told us the pedestrian pathway poses a health and safety risk to staff maneuvering a wheelchair and the usual, but inequitable policy, is to make parents push wheelchairs to buses, give up any door-to-door provision, despite the assessed need, and walk a route assessed as too hazardous for staff.

References
Haringey Council: Cllr Peray Ahmet appointed new Leader
https://www.haringey.gov.uk/news/cllr-peray-ahmet-appointed-new-leader

Haringey Labour: Local Election Manifesto 2022
https://www.haringeylabour.org.uk/manifesto-2022-26/

Contact: Challenging school transport policies in England
https://contact.org.uk/help-for-families/information-advice-services/education-learning/transport-to...

Department for Education: Post-16 transport and travel support to education and training Statutory guidance for local authorities
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/7729...

Haringey SEND transport say the route is too dangerous to use - so we have to give up our door-to-door provision and take on the risks ourselves

Purpose of coproduction work: A year ago we were approached by parking to install 6 disabled parking bays and a bus stand for the use of SEND Transport

In July 2021, parents took time to explain to the programme manager the challenges they face day to day with the care of our children. To resolve some of the ongoing problems with access there was an agreement for, among other things:

The disabled programme engineer will visit on site to undertake a detailed site inspection required for the detailed drawings needed to undertake changes.

6 dedicated disabled bays to be upgraded for the exclusive use of the permit holder to be advertised for change in use, from the current shared use parking places into disabled bays (6 in total) as part of a statutory consultation
The council to formally approve the proposal.
The Council will introduce a loading bay. This will have a pedestrian dropped kerb access. This bay will be for the use of the shuttle bus that comes to collect children.
The redundant dropped kerbs either side of the social housing properties will be removed and new footway installed to make access easier. Where the footway is in poor condition out side your properties this will also be replaced so access to and from the bays will be made easier.

The transport manager refuses to use the codesigned bus stand as there are Health and safety concerns when manoeuvring wheelchairs over unsteady terrain, such as curbs and uneven paving. This is not only for the wellbeing of the passengers but for the physical wellbeing of staff also.

The statutory responsibility for transport for 16-19 year olds (who have started a course before their 19th birthday) rests with local authorities - so who is to push the wheelchair along this dangerous terrain? The transport manager suggests his parents, transferring the risks from staff back to the us and removing our child's door-to-door provision as has been assessed as meeting his needs.

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/7729...

Illegal Transport Policies and Door-to-Door provision

The charity Contact (who support 'SEND POWER' Haringey's parent carer forum) have found many SEND Transport policies to be illegal. Contact carried out research and found issues with equality, consultations over policy changes, blanket policies that restrict eligibility and policies that made parents make transport arrangements when the legal duty lies with the local authority.

A common way in which disabled children or disabled parents may be disadvantaged is No door to door transport

Some local authorities now expect parents to take children to pick up points instead of collecting children from home. This is legal but should be based on individual assessments, not a blanket policy. Local authorities have a duty to provide ‘non-stressful’ transport arrangements.

Link: https://contact.org.uk/help-for-families/information-advice-services/education-learning/transport-to...

The safer option? Parking and unloading a severely disabled child twice daily at a crossroads junction AND on the pavement

We say:

Why are Haringey SEND Transport not using the coproduced Bus Stand?
Why are Haringey SEND Transport transferring risks to parents, when the legal duty lies with Haringey SEND Transport?
Why are SEND Transport using an inequitable policy to remove services to meet assessed needs or to continue to put a child at risk?

What SEND Transport say...

I hope you both and [your child] are all doing well. I am emailing you with regards to the arrangements for [your child] ’s pick up and drop off for the next academic year. We have received correspondence highlighting your concern that the bus parks directly outside your property instead of the bus stand further along [the]Road.

Our general procedure is for escorts to wait on the vehicle whilst parents/ carers bring the passenger to the pick-up point. There are various reasons for this, which include but not limited to:

- There being other passengers on the route and the escort remaining on the vehicle allows for them to continue to manage the needs of the other passengers whilst they wait for other children to be brought to the bus.

- Health and safety concerns when manoeuvring wheelchairs over unsteady terrain, such as curbs and uneven paving. This is not only for the wellbeing of the passengers but for the physical wellbeing of staff also.

We are able to collect [your child] from your address because parking in such close proximity to the property negates these issues. If we were to park in the bus stand further down the road, we would not be able to collect him from the door as these risks would be increased to an unacceptable level. We are keen to find a solution to this, so we can offer you one of two options:

1. We can continue to park outside your address, with the escort collecting [your child] from the door in the morning and dropping him off to the door in the afternoon.

or,

2. We can park the vehicle in the bus stand, with either of you bringing [your child] to the bus in the morning and collecting him from the bus in the afternoon.

On a separate note, I have received your email regarding [your child] ’s start date and will ensure transport commences from then. Please let me know which of the above is more suitable and I will ensure it is in place for the start of the new academic year.

Thank you in advance.

Kind Regards,

SEND Transport Manager

Time wasters

Wed, 17 Aug 2022 11:02:57 GMT

The Leader of Haringey Council's pledge that collaboration will be a crucial component moving forwards - Fed up with having mine (and others) time wasted, The Difficult Parent is calling out co-production in Haringey

A change of focus

Dear All,

Sorry we haven't been in touch for so long, but a complete change of focus for the Difficult Parent is needed.

Moving forward we will be looking more at 2 areas:

Calling out 'co-production' in Haringey
Telling our own story

Calling out 'coproduction' in Haringey

In the last year we have experienced

the dreadful lack of consultation on Lower Traffic Neighbourhoods and the production of an ineffective exemptions policy that is not fit for purpose
A summit on inclusion in parks at an inaccessible venue were able bodied providers of 'services for the disabled' did not call out the lack of inclusion of disabled people in a 'summit' about inclusion in parks
A coproduced Haringey SEND Transport Bus Stand that Haringey SEND Transport will not use because there 'usual practices' do not really permit it's use on the grounds of unacceptable levels of safety issues.

Telling our own story

Our life has been turned upside down by the hot weather and we do not have any time to waste in meetings held without clarity of purpose, that do not produce effective outcomes other than more meetings so that the officers and politicians of Haringey Council can create a paper trail to say they worked with citizens to co-produce services that do not meet needs or worse result in direct threats to our child's well-being or service provision and our own physical and mental health.

A more efficient use of our time is simply to tell our story, as it happens.

The Difficult Parent

Scorching in Haringey and still no swimming

Tue, 12 Jul 2022 06:15:33 GMT

Staff absences this morning have led to another morning of no swimming at Tottenham Green

Day 2 of a heat wave, Day 2 of no morning swim

For the second day running there has been no morning swimming at Tottenham Green pools.

It did not bode well when I was unable to get through the gate to go for the swim and a disgruntled fellow customer explained it was because of the issues yesterday and we had not 'logged in' yesterday. We entered via an open disabled access gate at the exit and I asked my fellow customer how they felt: ' There are no words' said my harassed companion trying to squeeze in exercise before another hot and scorching day and work.

They I heard the groans of my fellow swimmers: ' Why not?' '7 o'clock?' 'Are you having a laugh?'

I asked the member of staff why not: staff absence.

I left and got told of for walking on the freshly mopped floor by the exits.

Outside, as I was getting on my bike, there was more disgruntlement from my fellow morning swimmers: 'Not again'. ''Quite ridiculous'. 'What can we say'.

2,000 avoidable death every year due to heatwaves

As I sit at my breakfast table, tap tap tapping out this tale, I am listening to breakfast telly and the annual death-toll due to heatwaves: the elderly, children and people with underlying health conditions.

Then I am listening to the solutions, keeping cool, councils having places open where people can go to cool off.

Coproduction and having services designed to meet need was the political pledge made to all of us in May 2021...

Ultimately, Tottenham Green Pool is ours, owned by us and the responsibility for the running lies with our elected representatives: our councillors.

Now, how's about a swimming pool that meets the needs of the local population, functions well and is open reliably every morning or even 24 hours a day to allow local people, people with multiple jobs, caring roles and notoriously poor health outcomes the opportunity to exercise whenever they can and need to?

Huge sympathy for the the staff

I have huge sympathy for the staff and manager, as I understand that they are unwell, ad in the middle of an ongoing pandemic, whose not hugely sympathetic for that.

Is there enough support and funding for more than a skeletal staff

When centres run on minimal staffing, there will be dire consequences for the health of the population when there is only one absence and I wonder what can be done to address that?

A flexible workforce that can do more than one role - reception, cleaning and life guarding?
More staff on duty and more funding for the centre?
Un-life guarded swimming for Adult only swimmers? As happens at David Lloyd and the mixed pond on Hampstead Heath to give but 2 examples that spring to mind.

Its a heatwave, and some of us can only swim, and must swim

The heatwave and health alerts makes forms of exercise other than swimming challenging and potentially a health threat to me. Swimming has the benefits of cooling the body as well as enabling exercise. On top of which it puts no weight on my joints.

Nearly 1k a day since January

I've swum 1 kilometre a day nearly every day since January. The health benefits are amazing for me. I am stronger, fitter and my knees are sore, my blood sugar is better controlled, my ankle swelling is almost gone.

Shopping around for membership

I love Tottenham Green Pool, its about 2 minutes on my bike from my house and I have a lovely time when I am there with my 'lane mates'.

But the unreliability of the service has had me looking elsewhere.

I've been swimming at the Better West Reservoir at Manor House, £40 a month and use of 145 swimming places, pools and lido over the whole of the UK.

2 swim memberships might seem over indulgent, but for me cheaper than taking medicines every day and having declining health as I live with many very serious health conditions.

Serious lifetime health conditions and disability are the motivation for this blog

The serious lifelong health conditions of all the members of my family, the severe disability of my son and the issues we have addressing those issues through barriers to access to services are the motivation of all of my blogs.

The purpose is not self advancement. I am paid no money. This is not a business. I get no funding. There is no reward.

Tottenham Green - how much longer do we have to put up with this?

Mon, 11 Jul 2022 07:18:06 GMT

In an area of appalling health outcomes, it is near impossible to get the daily recommended 30 minutes of exercise if the leisure centre doesn't open on time, sessions are cancelled at short notice and there is a lack of cleanliness and poor customer service - and what's going on with the local park, Elizabeth Place?

Despite promise of improvement made in the local press after protests and social media complaints, residents were locked out of Tottenham Green pool at 6:30am this morning,

6:30am this morning, if you'd had been near Tottenham Green Pool, our Haringey Council owned and Fusion run leisure centre, you'd have seen 20 or so keen Tottenham residents awake early who had been hoping to to get their work out in before they go work, some of whom have multiple jobs and caring roles. But we were not exercising.

We were complaining about the poor service at the pool and how were are let down time after time by a council owned service that does not seem to care about the health and well being of Tottenham residents.

After recent protests about the running of the Tottenham Green Centre and the complaints on social media and on this blog about the shitty customer service, the centre failed to open on time because none of the staff are allowed the key! Seemingly there was no one on stand-by in case of an emergency like a burglary or an alarm going off.

Fusion said in Haringey Community Press last week

Fusion Lifestyle has said it will be launching new pricing and cleaning procedures in Tottenham Green over the coming months. The company also said it is driving recruitment for swimming teachers to prevent cancellations. In line with feedback, Fusion said it will be reintroducing a monthly members forum and meet the manager meetings to give customers the opportunity to voice their thoughts.

https://haringeycommunitypress.co.uk/tottenham-green-pool-should-be-run-for-the-people

Since those promises in the last week

In the last week I have been charged for all my swimming sessions, despite having a subscription membership, because there was a query on my account.

I phoned up to get the query removed, but customer services cannot do this, only a manager can. They took my name and looked at my account. A note was made.

I went in 2 days later, they query still had not been removed. I was told only a manger can do this.

I was told I should go to the centre if I have an issue with my online account, because issues cannot be addressed over the phone nor online!

Health Inequalities

What drives health inequalities? THIS drives health inequalities. Not have facilities reliably available to use to exercise and do those 30 minutes daily minimum of activity.

There are stark health inequalities between the east and the west of the borough, with Tottenham residents experiencing at least a decade of ill health when compared to our wealthier neighbours, according to Haringey’s Annual Public Health Report 2019

Link: https://www.haringey.gov.uk/sites/haringeygovuk/files/health_inequalities_public_health_report_2019_...

And then what's going on with Elizabeth Place park?

On top of which its been a year since the Elizabeth Place park protests when half a park was appropriated by a local developer to building works.

We met with councillors at the time and there were promises of coproduction, inclusion and accessibility, but it's all gone quite and progress has not gone any further than those promises to do better.

On top of which, since then, the Haringey Parks Summit was held at the highly inaccessible Ally Pally and we've had Finsbury Park taken off all of us this weekend for the council to make some money off a badly organised music festival with scenes of young people climbing fences to escape being crushed that made this footie fan think 'Jesus Christ have we learnt nothing in the 3 decades?'.

Message to Haringey Councillors?

Do your jobs you were voted in to do and keep the promises you made.
Address the health inequalities that you've been banging on and on that you are going to champion by actually having places we can exercise in that are open and for the use of your residents.
Co-produce genuinely accessible leisure facilities that we can use to be active and address those stark health inequalities
Listening and nodding isn't enough, action is required and work for the £11k minimum allowance you get to represent us (plus the rest)

Allowances for councillors to make promises they never deliver on

The full table for allowances that councillors are paid can be found here:

https://www.minutes.haringey.gov.uk/documents/s114982/Part6MemberAllowances_Updated%20with%20recomme...

I AM pissed off

I am royally pissed off.

I AM that demographic that is in their 50s and living in poor health and with multiple health conditions. I do live in an area of deprivation and I have caring responsibilities on top of my full time job.

I can't get a GP appointment for love nor money and since an American company took over the running of the surgery I have not had the same level of care from a practice nurse as they let the old one go and no longer have anyone in that role. In reality I have had no ongoing care.

I cannot take responsibility for my own health if facilities are not open during the few hours I am not working or they are inaccessible when I am caring.

And I am royally pissed off because the endless promises of tackling health inequalities and addressing issues of access to parks and leisure centres is not being addressed.

I get that progress is 'slow, but it is too late for me, I can only hope that Haringey Council can sort something out before its too late for my now young adult children.

Oh, and Haringey Councillors and SEND department now have a formally written to us and set out a policy of not listening to us, so no coproduction if you are not part of a group that have labelled us as racists, blamed us for all failures of coproduction and behaved 'inappropriately' towards.

Undignified and demeaning treatment from Haringey SEND Transport

Wed, 18 May 2022 19:03:18 GMT

Despite sending doorbell cam footage of a male transport escort explaining the terms and conditions of travel to a semi-naked woman, SEND Transport is happy staff behaved professionally

Women's safety and dignity are the issue here.

One morning last week Mrs DP came back from her morning swim wearing a swimming costume and a dry robe only to encounter a man she had never met before on our doorstep.

Now, it's important to say, Mrs DP normally does not encounter anyone on our doorstep at 8 am, not least a man she does not recognise. Her expectation was car, path, door, home. Not a man she had never met before nor to be told the terms and conditions of Haringey SEND Transport.

Mrs DP asks him who he is and he explains he's the cover escort. There was some confusion as to who should be on our sons route that morning and it emerges we had been sent an email at 7:30 am (who check's their email at 7:30 am when they have a paraplegic 17 year old to wash and dress - in a bathroom without hoists thanks to Haringey Council's failings ... ...).

Anyway, we establish an email was sent, so he asks Mr's DP "Am I taking him?".

Mrs DP says "Can I get dressed before I make any decisions?"

The escort then, some what inappropriately, decides to explain Haringey SEND transport terms and conditions, to a woman in a swimming costume on a path in North London trying to get in to get dressed.

Guess what? We complained...

Mrs DP, some what miffed now, says, OK - all recorded on our webcam, thank you very much and tried to go in.

Not enough, the escort continues to further clarify the terms and conditions to a woman, in a swimming costume, on their step, in North London, about 8:06 am in the morning ...

We declined the offer of transport, somewhat distressed by the whole encounter, and complain.

And here's what SEND Transport has to say about it.

Thank you for your patience whilst we investigated these matters.

I have reviewed the evidence and can’t find any evidence to suggest that our staff have acted unprofessionally.

Based on the evidence (our doorbell cam footage) , [the escort] has followed procedure in this instance. Our usual procedure is to allow three minutes from arrival at the pick up point for parents to get their children ready for collection. We acknowledge that in the case of children with special educational needs this may need to be extended; as there are numerous reasons which could prevent this from being achievable. We do on occasion allow up to 10-15 minutes on a case by case basis, depending on the needs of the child as well as the other passengers on board the vehicle. If you feel that you may not be able to get [your son] ready by the usual pick up time, which I believe is usually around 8am, please can you let the office know and we can ensure that the escort is briefed beforehand? I will ensure that staff are fully aware of the process surrounding extending pick up times but prior to arranging your own transport, please do check with us and we can clarify the situation.

We are not able to cover the expenses of the taxi for this journey. The vehicle and escort were on site and able to transport [your son] and you made the choice to undertake the journey yourselves. We therefore can’t cover the costs for this journey.

Due to the issues we have experienced on this route with a number of escorts, do you think it would be beneficial for the escort to wait on the vehicle outside your property and you bring [your son] to and from the vehicle? This may reduce the chance of incidents we have previously experienced, and not only relating to this particular incident, from occurring again. (This is because after an incident with one of the escort, we bought a doorbell cam. Haringey being Haringey did not believe what we said and instead make a false counter allegation that is very vague and they refuse to either substantiate or withdraw).

In terms of your request to not have [the escort] on the route again, unfortunately we only have finite resources at our disposal. These are particularly stretched when we have to cover route due to escort absences and I cannot guarantee that we will have to put [the escort] on this route again. If this is not agreeable from your perspective, we are more than happy to assist you with a personal travel budget. You may be aware through our consultation documentation for the new home to school travel assistance policy that we may be able to offer bespoke personal travel budgets in the future. If this is of interest, please do let me know and we’ll be more than happy to discuss the ways in which we can assist you financially to provide [your son's] transport.

Please let me know if there is anything else I can help you with.

Customer Charter - modified for fun by me

We will:

Treat you with courtesy and respect (Unless it's 8 am and you ask to go in to get dressed before continuing a conversation in your swimming costume) ...
Embrace, promote and value the diversity of our customers
Be open and honest with you
Always use plain language
Respect your right to confidentiality, privacy and safety (This is not applicable to SEND transport encountering semi-naked women in swimming costumes at 8 am trying to get back into their own homes).
Let you know the name of the person you are dealing with (A male evaluating the behaviour of another male and not considering for a moment the dignity of a woman)
Make the council easy to do business with (Except when you ask to get dressed first before you do business with us).
Investigate and resolve your complaints and keep you informed of progress (Yup, they did that!).
Protect our staff from abuse and harassment (This is not a mutual clause, we protect our staff from harrassment, but we can't say the same will happen to you).
Apologise for our mistakes and seek to put things right (As long as we see them as mistakes - explaining terms and conditions to a woman in a swimming costume is not a mistake ).
Continually improve our service to you and welcome your feedback

https://www.haringey.gov.uk/contact/customer-charter#:~:text=Embrace%2C%20promote%20and%20value%20th...

Cllr Seema has restored my faith in human kindness

Wed, 18 May 2022 13:20:23 GMT

Further to my somewhat grumpy blog yesterday about having our Blue Badge stolen, all's well that ends well, as Councillor Seema Chadwani steps in and delivers replacement Blue Badge (not literally, she's not moonlighting at the Post Office).

As some regular readers of the grumpiest blog in Haringey may know, I was in a furious mood yesterday because some person* took my son's Blue Badge without my permission. They were so much did not have my permission that they got it by smashing a window in my car. And rather rudely, no note was left to say who they were or where they had taken it....

(*see previous blog, I was not that kind yesterday)

Step in Councillor Seema

No there is a slither of humanity in this story - no the police haven't caught them, nor have I had the car repaired but what did happen is Councillor Seema Chadwani (that's Cllr Seema Chadwani, chief of the bins and the disabled parking).

Councillor Chadwani steps in and this morning I came back from my swim and there it was - a new Blue Badge!

Compare this to DVLA who still haven't managed to send the V5 after 2 weeks (although I see on the laptop it was issued Sunday this week), or Motorbility and their 18 month delivery time or DWP taking 46 weeks to process a change from a DLA to a PIP. - See yesterdays blog for what I am on about: https://www.difficultparent.com/blue-badge-stolen-and-we-are-being-screwed-by-the-systems-designed-t...

So, the thing to take away from this is ...

I feel quite animated!

Blue Badge stolen and we are being screwed by the systems designed to support disabled people

Tue, 17 May 2022 06:38:30 GMT

The systems that are supposed to support disabled people have really screwed us over.

We need a wheelchair accessible vehicle for our paraplegic child

With the exception of those saints of the road, the London Black Cab Taxi's, public transport is wholly inaccessible to us - we have equipment, oxygen and a paraplegic child in a seating system that is designed to hold him in place. So we need a wheelchair accessible vehicle.

The car died

Last year on out trip up to Berwick the car died. We really struggled without a car. The local taxi providers only had 3 wheelchair accessible vehicles and they were booked out to the council on Tuesdays and Thursday.

Summer is coming now, lock down has ended, and we wanted to get further than inside the M25 (although we did take a black up to Birmingham).

Eligibility for Motorbility is 12 months left on your 'award'

To be eligible to join the Motability Scheme, you need to receive one of the following mobility allowances and you must have at least 12 months’ award length remaining. Please note that the Attendance Allowance cannot be used to lease a car through the Scheme.

Enhanced Rate Mobility Component of Personal Independence Payment (ERMC PIP)
As of 11 April 2022, this allowance is £64.50 per week.

Higher Rate Mobility Component of Disability Living Allowance (HRMC DLA)
As of 13 April 2022, this allowance is £64.50 per week.

Higher Rate Mobility Component of Child Disability Payment (Scotland)
As of 11 April 2022, this allowance is £64.50 per week.

War Pensioners' Mobility Supplement (WPMS)
As of 13 April 2022, this allowance is £72.00 per week.

Armed Forces Independence Payment (AFIP)
As of 13 April 2022, the mobility element of the allowance is £64.50 per week.

Ref: https://www.motability.co.uk/about/check-your-eligibility/

It took 46 weeks to process our transfer from DLA to PIP

Paper work for transferring from the Disability Living Allowance (DLA) to the Personal Independence Payment (PIP) arrived late in 2020. But the Department for Work and Pensions (DWP) kept moving the date they wanted the paperwork to August 2021 - 6 months after our son turned 16.

We had our PIP confirmed between Christmas and New Year 2021.

For just under 2 years we could not get a Motorbility vehicle

This meant that despite the car dying and the need for motorised transport and the permanency of our sons condition, there were almost 2 years were we could not ally for a Motorbility wheelchair accessible vehicle (WAV).

Motorbility - 18 month delivery

We had a Motorbility provider round to do a demo. For a wheelchair accessible vehicle it would take 12 - 18 months to deliver after ordering - Brexit, war in Ukraine and the pandemic ... ok, ok, I get it...

3 and a half years in total waiting to renew a car was simply not feasible - We looked for an affordable alternative

We bought an import car that was converted to be a wheelchair accessible and 10 days ago brought it home.

1 hour in the dedicated bay and the officers of Haringey are there to give us a ticket.

Now, we had written ahead of time and told them the day we would be getting the new car - but they did not reply.

The officer was clear - you cannot park there (it's our dedicated bay), because that car is not registered to that blue badge.

We moved the car to a disabled bay and put in the blue badge.

We sent them the documentation, but Haringey said it was an invoice and not proof of ownership.

We are still waiting on DVLA to send us the V5 (its been 2 weeks now).

We parked in the Blue Badge Bay

So, we parked in the nearest undedicated disabled parking bay.

Some b*stard knicked the badge

Last night, some b*stard knicked the badge

... and now we have to wait 2 days for a crime reference number from the police

I registered the crime online at 6:45 am - but I have to wait 48 hours for a crime reference number

Haringey need the crime reference number to replace the badge

The incident number, the hole in the window and the loss of the badge mean are not enough evidence ...

When DVLA get round to sending us the V5 we can then register the vehicle as being for the use of a disabled person

We need to V5 back from Swansea to register the vehicle as being adapted for use by disabled people

We are being f*cked over by 4 systems to support disabled people

Dedicated parking - need the V5 (delayed at DVLA and the paperwork not good enough for Haringey).
Once DVLA the V5 we then have to go to a post office in person and register it for 'disabled car tax'.
We are then exempt for ULEZ.
We are then exempt from congestion charge.

Completely fucked over with additional costs and threats of getting the parking fines and getting the car sent to the Haringey car pound - all because the systems designed to support disabled people are really designed to stop fraudulent use and therefore screw over disabled people.

For clarity - Councillor Seema has done everything she could to help us here.

Are children safe on Haringey SEND transport?

Mon, 16 May 2022 13:08:31 GMT

January 2022, I had a heated email exchange with the Haringey SEND transport department about their useless risk assessments

18th January 2022 14:09 hrs - I am alarmed, but no where are the words 'risk assessment' mentioned

From:
Sent: 18 January 2022 14:09
Subject: Haringey School Transport Passenger Profile

Dear Parent/ Carer,

As a service, we aim to cater to the specific needs of each child. In order to do this effectively, we require as much information as possible about the passengers who use our home to school travel assistance provisions. Passenger Transport Services (PTS) have therefore devised a ‘one page travel profile’, in which parents can let us know more about their child.

We ask you as a parent/ carer to fill out the attached profile for your child and return it to school.transport@haringey.gov.uk . We will verify the information you provide within the profile with schools and other healthcare professionals to ensure the passenger’s medical/ behavioural needs are met.

If you require any assistance with the form, or require a paper copy, please let us know via the above email address or call the PTS team on the numbers in the ‘Contact’ section of https://www.haringey.gov.uk/children-and-families/local-offer/5-15-year-olds/school-transport

Kind Regards,

SEND Transport Manager

14:24 hrs

Dear SEND Transport Manager

No attachment

Regards,

The attachment

So, a parents is asked to sign in agreement the following statement

I (parent) certify that this information is accurate to the best of my knowledge. I am aware that my child is being supported by medically untrained passenger attendants who will call an ambulance if emergency treatment is required. I will inform the Haringey Transport Team by email (school.transport@haringey.gov.uk) of any changes in my child’s conditions.

And the school declares the following

I (school) confirm that the details contained i n this Risk Assessment are accurate to the best of my knowledge. I will inform the Haringey Transport Team by email (school.transport@haringey.gov.uk) of any changes in this child’s conditions.

No where are parents informed that this paperwork is a 'risk assessment'!

15:23 hrs - cc. Cllrs Brabazon, Ahmet and Palmer

Dear Transport Manager

Regarding the attached document.

I am asked to sign and certify the document as "A risk assessment".

It is not clear from the covering email, nor the form its self that this form constitutes a risk assessment.

Is this the risk assessment that is required as part of the DFE Home to School Transport Guidance?

Is this the risk assessment identified as being required as part of the recent Transport Learning Review.

I would expect any communication regarding risk assessments to be clearly identified as risk assessment.

Please can you clarify.

Regards,

15:25 hrs - to SENDIASS

Dear SENDIASS,

The communications below concern me

Regards,

The next day - 13:58 hrs - cc. Cllrs Brabazon, Ahmet and Palmer

Dear

The idea is for the profile to act as a source of information for all of the members of the transport team, so we can put the right provisions in place for each child. It could therefore be considered a ‘risk assessment’ as it will allow those who know the children best i.e. parents and schools, to inform us of their specific needs and how we as a service can meet them.

The one page profile will be one of many sources of information that will contribute towards a child’s risk assessment, as described in guidance. We will use information from a variety of sources such EHCPs, schools, care workers, parents etc., as well as the profile, to formulate a comprehensive picture of a child’s need.

This is not a direct outcome of the learning review but a general improvement we are attempting to make within the service.

Please let me know if there is anything else you may need.

Kind Regards,

SEND Transport Manager

14:43 hrs - cc. Cllrs Brabazon, Ahmet and Palmer

Dear Transport Manager

This is not an acceptable response.

Is this form a risk assessment?

Not "could be considered a risk assessment", but an actual risk assessment as required by the Home to School Guidance?

I am not signing something that "could" be a risk assessment, to do so would put my child at risk as I do not fully know the legal scope of the document.

My understanding is the department already has the information requested and I have been operating on that basis. I have had assurance from Mary Jarrett that the information is already on his 'Mission profile'.

You appear to be either duplicating information held elsewhere or asking others to share information with you without our explicit permission eg EHCPs, schools, care workers etc.

Regards,

14:54 hrs - SENDIASS and Markfield

Dear both,

This is a worrying response.

Is it a risk assessment or not?

Regards,

15:10 hrs - Cllr Brabazon, Ahmet and Palmer included

Dear

I’m sorry you feel that way but I feel that my response is acceptable. I explained that the profile will form a part of a wider risk assessment using other sources of information and it can therefore be considered a risk assessment.

We do have information on each child, however this an opportunity for parents to provide us with additional information that may be useful. The more information we have, the better service we can provide.

Kind Regards,

SEND Transport Manager

15:17 hrs - Cllrs Barabazon, Ahmet and Palmer included

Dear SEND Transport Manager

This is not about my feelings

Your initial response was it 'could' be considered as risk assessment.

Now you are saying it is part of a wider risk assessment.

That clarity is important.

As you are now saying that it IS part of a risk assessment you need to clearly communicate this with all parties. Parents need to know that this form is part of a wider risk assessment regarding risks to their disabled children.

In addition, duplicating information already held is not complying with the GDPR which requires you to hold the minimum amount of information to carry out your functions.

Regards,

15:17 hrs - to the Assistant Director for SEND cc Head teacher

Dear AD for SEND

It is important to me as the parent of a severely disabled child that I know how risks about my child are assessed.

This is not about my feelings.

It is about my duty to safeguard my child and understand the safeguarding that others are undertaking when loco in parentis.

I have been sent a form that referred to a risk assessment at the bottom of the page. At no other point were risk assessments referred to.

Asking for clarification I was told it "could" be a risk assessment.

When pressed for further clarification I was told.it is part of a wider "risk assessment".

Specifically, I would like to if this is a risk assessment as required by the DFE Home to School Transport Guidance. If so, I would like this clearly communicated to me.

Happy to make a formal complaint, if that is what is required.

Regards,

A formal complaint was made, but never responded to ref HC-13246411

I have been asked to complete a "profile" of my child but at the end of the document reference is made to a risk assessment. Requesting clarification I was told it "could" be a risk assessment and is part of a wider risk assessment.

I would like clarification if this is a risk assessment for SEND school transport as required by the DFE Home to School Transport Guidance.

I would like to know if this form duplicates information already held on the "mission" system, as I have previously been assured that this information was on the "mission" system and if this is then compliant with GDPR.

How the Difficult Parent sees it...

This to me appears like a classic case of the SEND transport officers and the wider the department adopting the view that the parent knows nothing ...

My expectations of what a risk assessment would look like include

Clearly communicating to the person filling the form in that it is a risk assessment
Identifying risks and causes of potential harm
Identify who might be harmed and how
Mitigate against the risks
Possibly rate the probability of harm being cause - with and without mitigation
Identify who is responsible and when the action is required to be done by
keep a proper record
Get parents to review the risk assessments
Get professionals to review the risk assessment

And well, what do you know - the Health and Safety Executive have a template for risk assessments (looking nothing like the SEND transport form)

Example of a Risk assessment template (from the Health and Safety Executive)

Now, what was it Peray said ... ...

I DON'T BELIEVE YOU: - LTNS exemption policy

Sun, 15 May 2022 17:18:38 GMT

2 days before the May 2022 election I was asked to take part in some way (not sure what) in the development of the Lower Traffic Neighbourhoods exemption policy. Not happy having my time wasted I asked some questions - I have had no reply.

3rd May 2022 (2 days before the election)

Dear Resident

As you are ware Haringey is in the process of developing an LTN exemption policy with neighbouring boroughs, Hackney, Islington and Enfield to allow residents who live within and on the boundary of the LTN’s exemption to the permeable filters, as part of the process in developing the policy our appointed consultant Systra would like to interview residents and parents of children with a disability. As you have contacted us in the past in respect to the development of the LTN, we would like to give you the opportunity to take part as a stakeholder in developing the policy. Please let me know if you are interested in taking part by responding to this e-mail.

Many thanks.

Transport Planning Team Manager

My reply - 3rd May 2022 (2 days before the election)

Dear Transport Planning Team Manager

Thank you for contacting me.

With reference to Haringey’s Community Engagement Framework - Full Version (Web link below)

https://www.haringey.gov.uk/local-democracy/have-your-say-haringey/haringeys-community-engagement-fr...

Firstly, I am unclear as to what it is you want me to do. Is it be interviewed by the consultant or read, review, comment and help develop the policy or both (Ref page 10 of the Framework, point 3 - "Be clear about what it is we are asking").

Secondly, am I going give up my time for nothing to come of it. We gave up a lot of time for the workshops, only for the outcome to be the appointment of consultants with no clear evidence as to how the feedback shared by attendees would be used to influence the policy (Ref page 10 of the Framework, point 2 - "Engage when it will make a difference"). Another example of where feedback and recommendations were not followed through is the 2020 Amaze Report and its recommendations for meetings around engagement with SEND parents.

Thirdly, what efforts will be made to garner the views of the wider SEND community. I represent me and only me as the parent of a very severely disabled paraplegic and brain damaged child. I do not want to be put in the invidious position of my view being taken as the view for all SEND parents (Ref page 10/11 of the Framework, point 4 - "Be inclusive and aim to engage with all communities"). This is what happened with regard to the Difficultparent.com blog being cited as "consultation" in the SEND Transport call in to Overview and Scrutiny Panel, December 2019.

Finally, I am concerned that this is invitation is being sent because there is a local election in 2 days time and LTNs are an issue that impact detrimentally on the lives of disabled people.

I have had offers of "engagement" before from officers of Haringey Council, only for those offers to be withdrawn without notice or even informing me, I refer to [The Assistant Director for SEND's] conduct as a clear example of this happening when I was informed verbally and in writing following the "Truth and Reconciliation" meeting that I would be asked to share future meetings information in the Difficultparent.com blog. Only for [The Assistant Director for SEND] to reflect that [The Assistant Director for SEND] would prefer to only engage through "official partners" that Haringey pay for and commission. It would be remiss of me not to raise concerns about the inclusivity and fairness of such an approach.

I look forward to your response.

Regards,

Bounce back - 3rd May 2022 (2 days before election)

Thank you for your email
I am out of office until Monday 9th May 2022 please consider forwarding your email ... ...

For us, shorter journeys are a matter of life and death. Uncontrolled distress can cause life threatening seizures. We need access now, not in a magical future when cars have evaporated.

How the Difficult Parent sees it - this is not coproduction

Environment change is terrifying, as is watching your child unable to breath - whether that be through asthma or seizure activity. Whatever the plans are, they must not discriminate against people on the basis of disabilities. They must not lead to children dying because plans have not thought through the impact on disabled people. And that needs to include all people - including the most severely disabled.

Surely, an exemption policy for the most exceptional cases is a great idea and completely falls into the Leader Peray Ahmet desire for coproduction.

Sadly, we are in a terrible place in terms of trusting the officers of the local authority to carry out that work and work with users as equals to design services that truly meet needs. I have given enough examples of time wasted when reports and recommendations from engagement is not followed through by the officers of Haringey Council: The Amaze Report, the February 2020 SEND Transport event, the previous workshops on an LTNs exemptions policy (4 one and a half hour meetings).

Thus far, with 4 one and a half hour workshops not delivering the exemptions policy we all believed we were working towards, alongside other behaviours you are just led to the conclusion we are all having our time wasted. And parents and carers of severely disabled people do not have the time to be wasted by the officers of the local authority so they they can tick a box.

Haringey's Equality Impact Assessments state that the LTNs will disproportionately impact disabled people who are wholly reliant on motorised transport. The Equality Impact Assessments recognise that disabled people already make less journeys then non-disabled people.

More barriers to journeys for people who already have barriers to journeys

Disabled people make less journeys than non-disabled people (as acknowledged in Haringey's Equality Impact Assessments) because they face barriers to making journeys. For us, those barriers include

lack of wheelchair accessible public transport (other than London Black Cab taxis - hurrah for our heros), see our blog https://www.difficultparent.com/please-listen-without-prejudice-low-traffic-neighbourhoods-and-the-i...
lack of accessible venue that are fully inclusive for our child's needs when we get there (e.g. Changing Places in Haringey), so we have to go far and wide to get to venues that are accessible for us; see our blog https://www.difficultparent.com/10-things-to-do-this-school-holiday-with-a-severely-disabled-wheelch...
the difficulty of manual handling our child in our hone which still does not have its adaptions . See our blog https://www.difficultparent.com/how-on-earth-did-that-happen

Peray's coproduction pledge

Hart's Ladder of Participation

Inequalities for disabled people

The Difficult Councillor

Sun, 15 May 2022 13:38:55 GMT

Councillor Michelle Simmons-Safo has approached the Haringey SEND department with concerns about the Transport Consultation

We contacted Cllr Simmons-Safo with our concerns about the Haringey SEND Transport Consultation

1. Everybody impacted by the proposed changes in SEND Transport provision was not consulted: All users have not been contacted.

2. The consultation is not inclusive: Wholly digital, no paper version, no translated versions, no Easy Read versions
3. There is an overwhelming amount of information: the [policy is now two documents - 41 pages and 50 pages :why has the parent carer forum not produced a simplified version with the main points? Not value for money -what are we paying them for?

4. This does not seem like a genuine intention to consult: The online survey reduces the whole 91 pages into 9 very specific questions. No alternative options given.

5. The information share is not wholly transparent For example - there is a new policy on Direct Payments - and there is now the following calculation (how is 'journey cost defined?)

Formula for PTB value: (Journey time x PA cost per hour + journey cost) x journeys per day x number of days attending school per week x number of weeks per academic year = PTB value

What about inflation? How long is a family tied to a budget? What are the values in the formula? and who sets the values?

Councillor Simmons-Safo called up the SEND assistant director

Councilor Simmons-Safo’s first action in post was to talk to the SEND department about the transport consultation.

Cllr Simmons-Safo asked for:

1.All users to get letters informing them of the consultation

2.That all users get stamped envelopes to reply to the consultation, and

3.The details of the workshops to be more visible

What happened next...

Late on Friday afternoon, Mrs Difficult Parent (not me) got an email inviting her to go through multiple links to get to yet more multiple links to more documents.

This demonstrates to me

It is still the case that not all people impacted by the proposed changes have been informed of the consultation
The consultation is not designed for the ease of the people being consulted
The consultation is digitally exclusive.

You can skip this bit ... ... its the ludicrous process of getting to the consultation...

When are they not trying to save money and exclude SEND kids from SEND transport?

Messing about with SEND Transport really messes about with a family - our email to the assistant director for SEND

Dear Assistant Director

INCIDENT 270422

Please see screenshot of messages this morning from escort.

730am we were told to get XXXX ready for 8am.

8:02am (after we should have been picked up) we were told that they were running late

8:25am we asked for an update a d were told the driver was waiting for a key.

We immediately ordered a cab and I am currently taking XXXX to school.

IMPACT

1. Our morning routines to get ourselves to work and XXXX to school are disrupted

2. XXXX is slightly delayed getting to work and this will reflect in XXX performance with regard to punctuality and attendance.

3. XXXX will be very late to work and this will impact my team mates who are expecting me to do some work to contribute to an output needed by the end if the day. This will then impact on my performance and contribution as a team member, putting a disproportionate burden on my colleagues, so we will all have to work a couple of hours later.

4. XXXX has had his routine upset and although his is currently coping with that disruption the purpose of SEND Transport is to ensure XXXX arrives at school in a fit state to learn.

5. Inequalities that arise from service failures this for our disabled child are XXX equal right to an education and the social and health benefits of being at his great special school..

6. Inequalities that arise from this for us as carers through association of XXXX protected characteristics arising from his disabilities are economic and the right to work and progress at work. The Borough Plan says that Haringey services should not lead to inequalities in delivered.

7. Financial cost of a wheelchair accessible London Black Cab Taxi.

8. Oppourtunity costs for me associated with not working this morning are being with my family or engaging in other respite activities that enhance my health and wellbeing which I will have to for go in order to work this evening.

OUTCOMES I AM SEEKING

1. Full reimbursement of travel costs.

2. For managers of the service to reflect and consider if a more timely sharing of information could have lessened some of the impacts.

3. I would suggest that informing us at 730am that there was no key would have completely changed and significantly lessened the impacts of this service failure.

I read with interest the SEND Transport Learning Review focused on the emotional impacts on families of service failures, delivered I believe by the single person who represented parents at the meeting. My view is such failures have a much wider and longer lasting impact.

Regards

And the disinterested response ... (we've had 3 disruptions in the last 3 'school weeks', so not occasionally at all)

Morning

Thank you for your email. I am sorry to hear of the disruption caused this morning, unfortunately we do on occasion experience difficulties such as the events this morning which we do our best to respond to and resolve. I note that you have copied [SEND TRANSPORT MANAGER] in who will look into your request and respond accordingly.

Kindest regards

Assistant Director

How Difficult Parent sees it...

The 'occasional' hiccup in SEND transport might not have devastating consequences in terms of holding down a job, but the endless failings of this service and the time taken up documenting and responding to emails, gathering evidence, researching guidance and policies to get the story straight does.

These incidents are not a one off - our blog is littered with SEND transport failings.

On they continue ... on and on and on and on ...

And the impact of those services failings should not be dismissed by Haringey Children's Social Services.

More Haringey SEND Transport department lies ... ... ...?

Fri, 13 May 2022 05:10:17 GMT

Haringey Council claim they are updating their home-school transport policy to ensure our stakeholders are as informed as possible. So, why haven't they written to every SEND transport user then about the consultation on the new policies?

Why are Haringey consulting?

They say: Haringey Council is proposing to up-date and revise its home-school transport policy. We are introducing a more detailed account of how decisions are made in the interests of transparency and to ensure our stakeholders are as informed as possible. This will also ensure that there is less confusion and misinformation in the community.

If the intention is to " to ensure our stakeholders are as informed as possible" - why haven't they written to every SEND transport user?!!

Why haven't they asked all SEND transport users then?

1. Everybody impacted not consulted: All users have not been contacted. Haringey claim

"The majority of children and young people who require transport assistance to school will continue to benefit from the existing provision from Transport for London." ?????? (

What does this mean?, this is Haringey's policy - or are they writing policies for other people now?)

Each and every user will have to make a new application and therefore, under the new policy , when

the child/ young person has changed address.
the child / young person has changed the school they attend.
the child is moving from nursery school to primary school.
the child is moving from primary school to secondary school.
the young person is 16+ and moving to a new school or college or remaining at the same school. (i.e. the dreaded annual application form still exists post - 16)

2. Not inclusive: Wholly digital, no paper version, no translated versions, no Easy Read versions

3. Overwhelming amount of information: the [policy is now two documents - 41 pages and 50 pages :why has the parent carer forum not produced a simplified version with the main points? Not value for money -what are we paying them for?

4. Not a genuine intention to consult: The online survey reduces the whole 91 pages into 9 very specific questions. No alternative options given.

5. Not being wholly transparent For example - there is a new policy on Direct Payments - and there is now the following calculation (how is 'journey cost defined?)

Formula for PTB value: (Journey time x PA cost per hour + journey cost) x journeys per day x number of days attending school per week x number of weeks per academic year = PTB value

Limited questions in the survey

Haringey seem to have forgotten the decision made against them by the Supreme Court over what they asked in their consultations: As Steve Broach says:

The Supreme Court’s judgment in Moseley [versus Haringey] provides the definitive word on the content of the duty to consult. The Supreme Court has taken a much more robust approach than the Court of Appeal or High Court in recent cases and has imposed rigorous requirements on public authorities in terms of the information which they may now be obliged to provide to consultees.

See: https://files.monckton.com/wp-content/uploads/2014/10/R-Moseley-v-LB-Haringey.pdf

Supreme Court case details: https://www.supremecourt.uk/cases/uksc-2013-0116.html

4.Does the policy make it clear to you whether your children or young people may be eligible for travel assistance?

Yes or No

5.Is it clear to you what journeys are eligible for travel assistance?

Yes or No

6.Is it clear to you how decisions are or will be made?
“After receiving an application, an assessment will be made as to whether the child/young person is eligible to receive travel assistance from LBH, as per the ‘Eligibility Criteria’ section… Once a child/young person is deemed to be eligible, LBH will determine the type of travel assistance that we will provide.”

Yes or No

7.What other information would help clarify eligibility for travel assistance and the journey to school or college? Please use the space below to give details and/or other comments about eligibility.

8.Are you happy with the move to encourage more environmentally friendly transport? Please use "other" to give details about how could we encourage or assist you in changing to a more environmentally friendly method of travel.

Yes or No or Not sure

9.Please give your views about the introduction of cut off times for applications to promote smooth running of transport services.
“To reduce disruption to the service and inform effective planning, LBH are implementing cut off dates for applications. The beginning of the academic year is the most critical time with regards to school travel and we aim to promote continuity in the service we provide the children. Late applications present several issues for the service in several ways, which is why a cut-off date is necessary.”

10.Are you happy with the proposed inclusion of behaviour contract in the policy? Please use "other" to give details and/or other comments.
“ To understand children and young people’s behaviours on transport and to ensure these are managed safely and effectively so that children and young people are safe at all times”

Yes or No or Not sure

11.In your opinion does the policy support and promote young people to become independent travellers? Please use "other" to give details and/or other comments.

Yes or No or Not sure

12.Is there anything you feel we have missed, or could improve on? Please use "other" to give details and/or other comments.

Making a MOCKERY of their Learning Review, Haringey SEND transport says it has NO DUTY to provide transport if YOU choose your child's school

Tue, 05 Apr 2022 18:20:38 GMT

Making a mockery of the SEND transport learning review and driving disadvantages and education inequalities for children with special educational needs and disabilities (SEND) and their families, the Haringey Local Offer appears to contradict the statutory guidance that says it must provide assistance to eligible children.

Quick reminder about what the point of SEND transport is...

The Department for Education says For [SEND transport] arrangements to be suitable, they must also be safe and reasonably stress free, to enable the child to arrive at school ready for a day of study and this is to be provided for all eligible children.

Despite what Haringey say, this might include i f you choose to send your child to a school that the council does not consider to be the nearest suitable school.

Deliberately misinforming parents?

For reasons that I cannot fathom, other than to deliberately misinform parents and put them off applying, the Haringey website says "If you choose to send your child to a school that the council does not consider to be the nearest suitable school, the council has no duty to provide free transport. In such circumstances, parents will be required to make their own transport arrangements."

However, the Department for Education " Home to school travel and transport" statutory guidance says that they must help eligible children. Including children with SEND in which case u sual transport requirements (e.g. the statutory walking distances) s hould not be considered when assessing the transport needs of children eligible due to SEN and/or disability

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/5753...

Cerebra's "School Transport in England - a guide for parents"

The most comprehensive guide to this that we have read is by Cerebra, a national charity helping children with brain conditions and their families.

As Cerebra explain' on its website: This guide explains the legal obligations on local authorities to provide free school transport for disabled children in England. Our aim is to help parents and carers understand their legal rights, but this guide is not intended to be legal advice and it should not be relied on as such. The law relating to school transport can be complicated and you may need to take independent legal advice to find out how the law applies to your particular circumstances.

***Cerebra's guide also contains a TEMPLATE LETTER you can use to challenge the local authority***

https://cerebra.org.uk/download/school-transport-in-england/

How the Difficult Parent rates this...

Difficult Parent considers this to be misinformation through omission of vital information about the eligibility of children for transport assistance and makes a mockery of the SEND Transport Learning Review, which had the following FIRST recommendation: Robust communications plan with key information and regular updates provided to parents, carers, schools and providers regarding policy and processes. Communication should be in a range of formats including, single messaging on social media, SEND newsletter, FAQ sessions at schools, drop in sessions for staff, providers/ summer sessions for parents and/or webinar guide on local offer.

https://www.haringey.gov.uk/sites/haringeygovuk/files/send_transport_learning_review_key_headlines_d...

A driver of inequalities in Education and Employment

The Haringey Borough Plan promises to address inequalities and that the council will ensure that equality is promoted, and inequality reduced, in our policies, and the way we provide services.

For children with special educational needs and disabilities

The plan promises a happy childhood for all children, and to s upport children with special educational needs and disabilities.
The council will " work with parents and carers to try to remove the barriers which some children face in achieving their full potential"

By not providing the right information in the right place the council are driving educational inequalities for SEND children who may not get the support to get to school ready to learn.

Economic Wellbeing – All residents are "we will get as many people into work and financially independent as we can, whatever their backgrounds, r emoving the barriers to employment which some residents face"

Putting parents off applying from SEND transport might prevent parent carers applying for jobs or staying in work because they need to accompany a disabled child to school, for example.

BOROUGH PLAN 2019 – 2023 https://www.haringey.gov.uk/sites/haringeygovuk/files/borough_plan_2019-23.pdf

What can YOU do if this happens to YOU?

1. Read the statutory guidance - see below for extracts on Eligible Children
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/5753...

2. Get help and advice from SENTAS
https://sentas.co.uk/ - read their 'Transport Myths' page

3. Read the guide from Cerebra
https://cerebra.org.uk/download/school-transport-in-england/
***Cerebra's guide also contains a TEMPLATE LETTER you can use to challenge the local authority***

4. Get help and advice from SENDIASS
https://markfield.org.uk/sendiass-2/

5. Contact a national charity help line

ACE Education
Independent advice and information for parents on education issues in England.
http://www.ace-ed.org.uk/advice-abouteducation-for-parents
Helpline: 0300 0115 142

Contact (formerly Contact a Family)
A national charity for families with disabled children.
https://contact.org.uk/advice-and-support/ education-health-social-care/education/
Freephone Helpline: 0808 808 3555

Coram Children’s Legal Centre
Provides specialist advice and information on child, family and education law.
http://childlawadvice.org.uk

Education law helpline: 0300 330 5485

IPSEA
A national charity offering information/advice on special educational needs.
https://www.ipsea.org.uk
Advice line appointments: https://www.ipsea.org.uk/advice-line

SOS!SEN
A national charity offering information/advice on special educational needs.
http://www.sossen.org.uk
Helpline: 020 8538 3731

What the statutory guidance says...

Statutory Guidance say's local authorities MUST make transport arrangements for all eligible children

Section 508B of the Education Act 1996 deals with the duty on local authorities to make such travel arrangements as they consider necessary to facilitate attendance at school for eligible children. Schedule 35B of the Act defines eligible children – those categories of children of compulsory school age (5-16) in an authority’s area for whom free travel arrangements will be required...

Statutory walking distances eligibility

... local authorities are required to provide free transport for all pupils of compulsory school age (5-16) if their nearest suitable school* is:

beyond 2 miles (if below the age of 8); or
beyond 3 miles (if aged between 8 and 16)

* Taken to mean the nearest qualifying school ** with places available that provides education appropriate to the age, ability and aptitude of the child, and any SEN that the child may have
** Qualifying schools are: community, foundation or voluntary schools; community or foundation special schools; non-maintained special schools; pupil referral units; maintained nursery schools; or city technology colleges (CTC), city colleges for the technology of the arts (CCTA) or academies, including free schools and University Technical Colleges (UTC). For children with SEN, an independent school can also be a qualifying school where this is named on the child’s Education, Health and Care Plan (EHC Plan) or statement, or it is the nearest of two or more schools named.

Special educational needs, a disability or mobility problems eligibility

... local authorities are required to make transport arrangements for all children who c annot reasonably be expected to walk to school because of their mobility problems or because of associated health and safety issues related to their special educational needs (SEN) or disability*. Eligibility, for such children should be assessed on an individual basis to identify their particular transport requirements. Usual transport requirements (e.g. the statutory walking distances) should not be considered when assessing the transport needs of children eligible due to SEN and/or disability .

* As per Schedule 35 of The Act, disability is as defined in S.6 of EA 2010: a person has a disability if they have (a) a physical or mental impairment, and (b) that impairment has a substantial a long-term effect on the ability to carry out normal day-to-day activities. Therefore a chronic health condition may lead to eligibility under this definition.

Unsafe route eligibility

... local authorities are required to make transport arrangements for all children who cannot reasonably be expected to walk to nearest suitable school because the nature of the route is deemed unsafe to walk.*

* Paragraphs 4 and 5 of Schedule 35B

Extended rights eligibility

... local authorities are required to provide free transport where pupils are entitled to free school meals or their parents are in receipt of maximum Working Tax Credit *if:

the nearest suitable school is beyond 2 miles (for children over the age of 8 and under 11);
the school is between 2 and 6 miles (if aged 11-16 and there are not three or more suitable nearer schools);
the school is between 2 and 15 miles and is the nearest school preferred on the grounds of religion or belief (aged 11-16).

* Paragraphs 9-14 of Schedule 35B

Accompaniment

In determining whether a child cannot reasonably be expected to walk for the purposes of ‘special educational needs, a disability or mobility problems eligibility’ or ‘unsafe route eligibility’, the local authority will need to consider whether the child could reasonably be expected to walk if accompanied and, if so, whether the child’s parent can reasonably be expected to accompany the child. When considering whether a child’s parent can reasonably be expected to accompany the child on the journey to school a range of factors may need to be taken into account, such as the age of the child and whether one would ordinarily expect a child of that age to be accompanied.

Meetings about inclusion that are not inclusive

Sun, 27 Mar 2022 21:30:27 GMT

Having attended many coproduction meetings, we are deeply concerned that meetings about inclusion are not inclusive

Not listening to our demographic was not antisemitic - but a desire to be more inclusive

Two years ago, as the pandemic began, I attended a meeting that included a discussion on the dreaded SEND travel annual application form. We had been very vocal that this form was a barrier to a service that is essential for disabled children and the council had no legal basis on which to ask parents and carers to fill in the form every year.

I was about 20 minutes late for the meeting because I had been doing online home schooling and the meeting had been arranged at 3 hours notice.

The department were going to issue a third letter about the annual application for in as many months. In the spirit of coproduction I offered to read it.

I was told that I could not, because of my 'demographic'.

I wrote to the Local Government Ombudsman about what I perceived to be antisemitism - see London Borough of Haringey (21 000 897)

The council told the Local Government Ombudsman that when developing new consultation strategies, one potential pitfall would be if, “we got just enough people for it to be representative of most groups, but had one particular group, e.g. white, middle class people from one part of the borough that was very over represented ……to be fair and equitable…we would have to have some sort of mechanism to decide who from that demographic should come onto the group to represent it”.

I complained about “direct discrimination” about what appeared to me to be antisemitism, but the council said that the intention to look again at improving co-production with a broader range of people demonstrated his commitment to ensuring good service user and parental participation.

The 'road map' to inclusion was the Amaze Report

Since that meeting we have had the AMAZE Report setting out recommendations Haringey need to follow for inclusive coproduction - but they have not been followed.

Meetings at venues that are not inclusive

One of the demographics that is most excluded is families with complex disabled members, whether that is complex autism, learning disabilities, medical needs or physical disabilities.

By not following, for example the three weeks minimum notice recommendation, people have been excluded from meetings about the formation and running of the parent carer forum, the SEND strategy and the Written Statement of Action following the OFSTED report.

As a result of this meetings and policies are not designed to be inclusive, venue and meeting methods are not inclusive and people are excluded.

Concerns raised and not addressed

We raised concerns that parent carer forum meetings are not inclusive.

A family event for Easter has been arranged at a venue that is not inclusive as it is in park without an inclusive play-space, on a great big hill and with no Changing Places.

Initially, our concerns were wholly not accepted by the forum who strongly suggested that we were being selfish and self promoting for wanting an inclusive venue - which was the same as the response from the forum to requests for evening meetings.

Sadly, the activity is going to go ahead, with no change of venue to a more inclusive park.

The parent carer forum 'walks and talks' provide parents who are free in the daytime the opportunity to share ideas and hold discussions. We have been instructed not to discuss issues (or speak even) in the evening online meetings, the purpose of which is exclusively for the self selected committee to present at (to be fair, you can comment in the chat, but this is not the same as a discussion).

Years and years and a multitude of reasons to exclude our 'demographic'

1. Raised continuing concerns about lack of inclusion of a range of disabilities in the 'old' PCF and system
2. 24th April 2020 - for being white, middle class people from one part of the borough
3. Post-AMAZE report - lack of 3 weeks notice (why prepare for or turn up to a meeting only to be told you or your view point is not wanted)
4. On-going behaviours and hostility from Haringey Staff
5. New PCF - no evening meetings for 6 months
6. Lack of inclusive venues & no talking or discussion allowed in evening meetings

How the Difficult Parent rates it

What the Difficult Parent ratings mean

LTNs: A big coproduction disappointment for disabled people

Sun, 27 Mar 2022 20:35:43 GMT

Secrecy, confusion and a lack of clarity is leading to some disabled people to not trust Haringey's "coproduction" processes for Low Traffic Neighbourhoods.

Anger, disappointment and confusion arising from a bizarre email from Haringey Highways following 4 'coproduction' meetings

Many disabled people and carers attended four workshops that were about and hour and a half long to discuss the impacts of Low Traffic Neighbourhoods on disabled people.

In the meetings we were lead to believe that our concerns about access and the disproportionate impact of LTNs on disabled people would be addressed. The meetings were about an exceptional circumstances exemption policy. So, you can imagine our surprise to get the email below on Tuesday telling us that the process would be handed over to a consultant.

What this means is unclear. We don't know if this will lead to a legal consultation or an actual exceptional circumstances exemption policy or something else all together.

Haringey are ignoring the lessons of the Islington LTNs

Haringey's Equality Impact Assessment for St Ann's LTN says "both disabled and elderly residents (sometimes overlapping) are more likely to have mobility issues that require motor vehicle transportation. As such, there is potential for the LTN schemes to indirectly discriminate against these groups as their routes through and out of the LTN area will be altered, and this could result in increased journey times"

These increased journey times create additional barriers to accessing service that disabled people already face.

In the Bruce Grove Equality Impact Assessment Haringey note "84% of disabled Londoners report that their disability limits their ability to travel, reflecting that disabled Londoners travel less often than non-disabled Londoners (1.9 compared with 2.4 trips on an average weekday).

We say, Haringey have not fully understood the information in the Equality Impact Assessments that they have collected. They have not discussed their findings with disabled people. Had they done so, they might have realised that they are increasing the exclusion and social isolation of a group that already experiences significant barriers to inclusion.

People we have spoken to

We have contacted a great many people through social media and in person about this move by Haringey.

The overwhelming majority are angry and feel used, they think that a consultant is a waste of money. There is an increasing lack of trust in what the local authority is doing when it comes to listening to disabled people and addressing concerns.

People feel that the needs of disabled people will not be met in the design of LTNs and disabled people will be sacrificed to save the planet.

Lack of transparency

Our Freedom of Information Request, specifically about how the impacts of LTNs on disabled children, has been considered, was been denied by the council.

Despite 5 (five) public interest arguments for releasing the minutes and one public interest argument against, on balance, Haringey say it is not in the public interest to release the minutes for the Low Traffic Neighbourhoods Board.

Difficult Parent rating

What the Difficult Parent ratings mean

What is a parent carer forum?

Wed, 23 Mar 2022 18:10:30 GMT

Southend SEND Crisis with a searingly honest and very timely post what is, by general consensus amongst SEND activists, the absolute truth when it comes to Parent Carer Forums...

The consensus...

A parent carer forum is a tiny group of uninformed parents specially selected and groomed by the LA to take up co-production seats and waste them ensuring that voices aren’t heard and information is lacking.

They can be seen looking nervous at meetings where they have nothing to say - or don’t show up. They treat the forum as their own family company and hold on to key roles for years and years as if it is their automatic right while activists who enter the realm of SEND and find it lethally dangerous are forced to go through hell and support others/fight for better while being sneered at by local authorities and gas lit councillors.

Mistreatment of others...

They consider local volunteers to be their skivvies because they aren’t interested/don’t know enough to support others/analyse the failed systems that they fiercely prop up etc. They ride on the back of the hard work of others claiming to have improved things.

Do you like a free buffet?

If you like free buffets and meaningless titles and you don’t like to do any real work, please join one. You will be handed thousands of pounds to waste at your convenience and you will have years to destroy any hope of good outcomes for others but you will benefit personally.

Note - In Haringey you can add *free* money

Key roles (and it is a "role")

Big smiles for Ofsted/DfE. Knockabout banter with officers for show
“Oh they’re tough but we have grown to love them. They put us through our paces!”
The promotion of companies charging thousands to support parents failed by the services you support and enable.
Co-producing in areas you have no knowledge or lived experience of enabling contracts to be signed that fail children for years

Forum caught out failing - your LA needs YOU!

If activists manage to remove a failed forum we will need you to be ready to rush in and take over by forming a new one in order to keep everything consistent. Please ensure that you grab as much as you can for yourself as fast as you can and close all doors for those who you know should have been there.

Are you sure you live in Southend and not Haringey? - Ed

The 'interview' questions

Perhaps you need a vehicle to self-promote? This is the group for you
Paid fraining* for yourself in order to further your personal ambitions? Tick.
Are you able to forge close bonds with the LA for years while ignoring parents? Great! Go for it!
Are you happy to prevent others joining because you need to cement your own position for personal gain?
You will need to be the inexperienced but arrogant and ineffective parent of very young children who has no prior knowledge of SEND and you will need to be able to commit to 15 minutes a month.

You will find them all over the nation…..

They are not just in Southend - they are very much in Haringey too - Ed
*fraining is derived from Middle English meaning to ask

The irony?

The irony? : Activists fought for parents to have the right to speak..

What is a Campaign Group? : We don’t know.

What are activists? : People who work alone in horrific circumstances unsupported because they are forced to.

The state of coproduction in Haringey 2 years after Amaze

Sat, 19 Mar 2022 20:51:11 GMT

Haringey SEND department have told us that they want to embed coproduction at the heart of service improvements. The Amaze report provided a starting point on their journey to excellent co-production and outstanding services. How's that gone then?

The Haringey Local Offer website described the Amaze Report as having clear findings and recommendations for how the Haringey SEND service can better work with parents to develop excellent parent/carer engagement and participation. Haringey say they will be using this report as the basis for their next steps - have they?

One year ago, in March 2021, we pointed out that the SEND service was not adopting the recommendations of the report in the blog AMAZE report recommendations for Haringey professionals. We find that a year on from that blog and two years after Amaze came to do thier report, Haringey SEND are still not following the report recommendations.

https://www.difficultparent.com/what-the-amaze-report-said-about-what-professionals-need-to-do-when-...

4 Key recommendations of the report that have not been followed to the detriment of the inclusion of the parent carers in Haringey

CULTURE AND PRACTICE: Ensure sufficient time/capacity is built into staff work plans and project plans to support a variety of participation activities . This should include time for senior management to meet with the parent carer forum and hear from parent support groups.
STRUCTURE AND PROCESSES: Minutes, agenda items and other relevant documents should be shared at least one week prior to the meeting, to allow parent carers time to prepare.
PARTICIPATION PROJECTS AND COMMUNICATION: Professionals to plan ahead for consultations and engagement opportunities, with an ideal minimum of three weeks' notice for meetings and six for consultations.
Agree the scope of pieces of work by developing a co-production document and a brief to bring clarity to the process and manage expectations.

Who is responsible for the delivery of coproduction?

Despite strong assurance on the Haringey Local Offer website, is it odd that the recommendations of the Amaze Report have not been followed in the

setting up of the forum (less than 2 weeks notice),
the meetings for the written statement of action following the OFSTED inspection (19 says notice) and
the Truth and Reconciliation meeting (2 and a half weeks notice) and
none of the other meetings organised by the council -
except the one organised by Haringey HealthWatch.

It is not clear who is responsible for the different areas of service delivery such as coproduction and the establishment of the forum: is it the SEND department, all SEND parents, the parent carer forum or the Bridge Renewal Trust?

Reflecting on the same 4 key recommendations of the Amaze report:

CULTURE AND PRACTICE: Ensure sufficient time/capacity is built into staff work plans and project plans to support a variety of participation activities . This should include time for senior management to meet with the parent carer forum and hear from parent support groups. OUTCOME: Coproduction seems to be only via the parent carer forum, with only the members of the parent care forum steering group on working parties (8 self selected individuals) and papers for meetings are not shared with anyone else.
STRUCTURE AND PROCESSES: Minutes, agenda items and other relevant documents should be shared at least one week prior to the meeting, to allow parent carers time to prepare . OUTCOME: There are no meeting minutes available for the setting up of the forum and the contract being awarded to the Bridge Renewal Trust. This is open to abuses of the process of awarding contracts. Our understanding is that no one came forward when the project was initially put out to tender and at some point The Bridge Renewal Trust were approached by an very senior leader in the local authority.
PARTICIPATION PROJECTS AND COMMUNICATION: Professionals to plan ahead for consultations and engagement opportunities, with an ideal minimum of three weeks' notice for meetings and six for consultations. Not done - OUTCOME: Parents who were able to operate at less than 3 weeks notice and were free for day time only meetings have gone on to commission and run the parent carer forum together: who is responsible for the lack of inclusion in they way this forum was set up?
Agree the scope of pieces of work by developing a co-production document and a brief to bring clarity to the process and manage expectations. OUTCOME: There needs to be clarity about what is happening in meetings and how the information shared by parents will be used. When Dr. James Chiriyankandath asked about the Truth and Reconciliation meetings at Children and Young People's Scrutiny Panel this week it was unclear how the information collected would be used.

Coproduction means something different to everyone

One of the most ridiculous things that I heard twice in the last month from leaders of coproduction in Haringey is that "coproduction means something different to everyone".

And yet, when we look towards the Amaze Report, again there is clear direction about what coproduction is

CULTURE AND PRACTICE: Ensure sufficient time/capacity is built into staff work plans and project plans to support a variety of participation activities . This should include time for senior management to meet with the PCF and hear from parent support groups. WHAT IS NEEDED: Is that the council need to engage with groups beyond the parent carer forum, not just the self selected few who happen to be available for day time meetings, as recommended by the Amaze Report.
STRUCTURE AND PROCESSES: Minutes, agenda items and other relevant documents should be shared at least one week prior to the meeting, to allow parent carers time to prepare. WHAT IS NEEDED: Is that the council need to produce governance papers and meeting minutes for all 'coproduction' meetings, and make them available to all parent carers, not just a self selected few, as recommended by the Amaze Report.
PARTICIPATION PROJECTS AND COMMUNICATION: Professionals to plan ahead for consultations and engagement opportunities, with an ideal minimum of three weeks' notice for meetings and six for consultations. WHAT IS NEEDED: Is that the council need to engage with groups beyond the parent carer forum, as recommended by the Amaze Report. WHAT IS NEEDED: Is that the council need make this happen: 3 week notice for meetings and 6 weeks for consultations, so that all parent can take part. I have seen leaders delude themselves and CYP scrutiny panel with the trite remark that all people that wanted to attend the written statement of action meetings could. This is plainly untrue as three weeks notice was not give. What should have been said was everyone who approached the council to attend the meetings the council arranged got a seat at the table .
Agree the scope of pieces of work by developing a co-production document and a brief to bring clarity to the process and manage expectations. WHAT IS NEEDED: How is this the perfect and most obvious solution to 'coproduction means something different to everyone?!'. Sitting down and 'contacting' with stakeholders to manage expectations and discuss outcomes seems like the most mature way of resolving this.

Follow the 'Amaze Report' recommendations

It is quite bewildering that the recommendations of the Amaze Report are still not being followed. Whether individuals agree with them or not, as the Haringey website says, Amaze engaged with a wide range of parent carers and professionals to gather information regarding parent carer participation and co-production and produced this report.

CULTURE AND PRACTICE: Groups beyond the parent carer forum are being excluded by Haringey and the Parent Carer Forum, whose un-elected and self selected leaders, on the basis that they were free for daytime meetings, are directing coproduction and engagement in Haringey. It took 6 months of lobbying The Bridge Renewal Trust to arrange evening meetings for the forum. Once the self selected steering group had secured their places, they decided on evening meetings 'as this is were the most demand is'. We have been to two meetings recently were either the venue or the proposed venue was inaccessible to us. When we tried to explain why a venue was inaccessible to the parent carer forum our lived experience was dismissed and it was explained to us why we were 'stupid' and 'wrong' that a venue that we had been to 2 days before was in fact accessible, despite our very recent lived experience.
STRUCTURE AND PROCESSES: By sharing papers before meetings and being clear how feedback is accepted and used, people can contribute to meetings they might be unable to attend. However, there needs to be transparency about these processes. We have been told that the parent carer forum do not want discussions in their meetings .... ... yeah, go figure...
PARTICIPATION PROJECTS AND COMMUNICATION: Some parents, including ourselves, have been unable to go to meetings where 3 weeks notice has not been given, including the written statement of action meetings. We are quite sure that we are not the only working parents with a very severely disabled child who is excluded from coproduction due to the continuation of this lack of sufficient notice.
Agree the scope of pieces of work by developing a co-production document and a brief to bring clarity to the process and manage expectations. "Coproduction means different things to different people" needs to be clearly managed in the setting up and running of individual coproduction projects.

How the Difficult Parent rates Haringey SEND coproduction so far...

What the Difficult Parent's 'coproduction' and 'inequalities for disabled people' ratings mean

Coproduction rating

Inequalities for disabled people rating

Haringey's exceptional circumstances exemptions policy for Lower Traffic Neighbourhoods (LTNs)

Sat, 19 Mar 2022 17:22:38 GMT

2 coproduction workshops about the Lower Traffic Neighbourhoods (LTNs) exemptions policy for disabled people have got us thinking the worst is yet to come

In this blog

In this blog, we reflect on our own poor lived experiences of congestion and longer journey times cause Lower Traffic Neighbourhoods (LTNs) and wonder if they work anyway. If they don't work, this could lead to a much worse quality of life for disabled people and their families, including poorer air quality. We reflect on the lack of 'coproduction' when we asked for an air quality monitor from the council. This has made us wonder, how is what is said to the council in 'coproduction' workshops turned into more than tokenism?

Will disabled people benefit from Lower Traffic Neighbourhoods?

Our lived experience of lower traffic neighbourhoods in around the 2 sites of our son's school in Islington tell us hell on earth is about to arrive.

Road to nowhere: It has been hellish getting to and from medical appointments stuck in traffic and breathing in the awful traffic fumes in the gridlock around our son's school on Prebend Street, Islington.

Cost: The increased cost of increasingly scarce London Black Cab Taxis (a drop from 19 odd thousand to just over 13 and a half thousand cabs in 2 years) is hitting our pocket - and this is before the April fare rise and the impact of the fuel crisis hitting cabbies.

Black Cab Taxis are an essential part of the public transport system in London . They are fully wheelchair accessible, unlike all other forms of public transport and are driven by professional drivers who are trained and selected through a rigorous and world respected selection process, (unlike all other forms of public transport!).

Worst of both worlds for disabled people if LTNs don't work!

Given that LTNs are supposed to reduce traffic, improve air quality and reduce road traffic accidents, do they actually work?

The road we live on is dead straight and between two proposed LTNs in Haringey. Would-be racing drivers already daily rat run at speed down our road. When this road becomes the only open and dead straight between two LTNs it is not unreasonable to assume that the rat running on the road will increase. At one end of the road is West Green Road, and the junction between the two already experiences congestion at busy times and this leads to stationary traffic pumping out air pollutants into the space between an increasing number of tall buildings.

Our fears are that the supposed benefits of LTNs will not be realised by the disabled people on our road. Given that the are many families with severely disabled family members who have been housed by Haringey in accessible houses on our road, it is essential that Haringey very carefully monitor for the adverse impacts of LTNs on these families. We would hope that they would carefully monitor for speeding cars, increased traffic and poorer air quality.

The exceptional circumstances exemptions workshops - were they coproduction?

We have been told that 'coproduction' means different things to different people. Therefore, it would be a good idea to explain to people at the beginning of each meeting what the 'coproduction' for the meeting or project will be.

We asked for an air quality monitor for our house - the council said no. We think our concerns are legitimate and real. This is because of our experience of LTNs in Islington. But our suggestion of a monitor to help ease our fears that our health and quality of life in our own home and when we are on our own street will get worse was not appropriately addressed.

So we asked for the data, all the data - not the sanitised summaries that the officers want us to focus on, to properly assure ourselves that the benefits of LTNs are actually realised, rather than a worsening of our quality of life already made worse by the LTNs around our son's school.

A lively debate - but how do we get an invite?

We attended the 3rd and 4th workshops of 4 exceptional circumstances exemptions workshops. We had no idea that there had been another 2 events already and this makes us wonder how people find out about these workshops.

Coproduction opportunities need to be clearly set out on the Haringey website and open to everyone - not just a self selected few who happen to belong to certain 'in favour with the council' groups.

What was said was powerful - but how will it lead to coproduction?

It was truly fascinating and informative listening to other disabled people and their views of LTNs. Concerns raised included

How will the exemptions work?
Will we have to apply for an exemption for each LTN?
Will we have to apply for an LTN exemption for every borough?
How much admin and evidence will this involve for disabled people?
Who will be exempt?
Will ambulances be exempt? Will hospital passenger transport, including taxis?
Will carers, physiotherapists, wheelchair technicians and the army of people who support disabled people be exempt?

Now I know that there are people who are not used to the army of people who support disabled people who are likely screaming at the internet saying yes they can get to YOUR home but make journeys through LTNs, so whats the issue?!.

But given the shortage of people who work in the health and care sector, any increase in journey times to and from clients can potentially delay a disabled person getting the help they need, increase travel times and travel costs and reduce the number of 'clients' a health care person can see in a day. Many people with very complex needs see specialists who come from all over the country. The person who looks after our wheelchair is based in Norfolk and his 'patch' is north of the Thames to Northumberland.

London Black Cab Taxis need to be exempt in LTNs

We most certainly are not rich and when our cabby on Wednesday told us of the fare hike due in April we said, no bother, we just spend our money on our son, that's it.

But our journeys are already longer and are already more expensive due to LTNs. There is a lack of taxis, few drivers training to be cabbies and less and less black cabs on the road.

Two weeks ago we saw a rep about getting our own wheelchair accessible vehicle (WAV). The WAV we saw was too small for our wheelchair and anyway we were told the delivery time is 18 months. We already had to was 48 weeks for our disability benefit to be processed (Personal Independence Payment are used to pay for Motobility cars). In addition to this, there are still no electric WAVs.

We face a future locked in, and in a home on a street with increasingly poor air quality.

Too much hassle for me?

When there is so much hassle for the people to get about around London to care for disabled people and transport disabled people, we fear that they are just going to jack it in and do something that's less bother.

How the Difficult Parent rates the exceptional circumstances exemptions workshops

What the Difficult Parent's 'coproduction' and 'inequalities for disabled people' ratings mean

Coproduction rating

Inequalities for disabled people rating

A letter from the Chair and Vice Chair of the Haringey Parent Carer Forum

Wed, 09 Mar 2022 09:13:48 GMT

We publish a letter sent to members of the parent carer forum and remind the Chair, Vice Chair and Steering Group members of what their 'ground rules' are - and that the best way forward is to lead by example.

Letter from the Chair and Vice Chair of the Haringey Parent Carer Forum

Dear meeting attendees

We are writing about last night’s Parent Carer Forum Meeting.

Through these meetings, we aim for everyone who attends to be able to participate equally in a safe and supportive environment. Our aim is to be a safe, respectful, non-judgemental and inclusive forum with a focus on working towards positive change in a co-productive way.

We went through some ground rules at the beginning of the meeting with a view to establishing this. Unfortunately, the ground rules were not adhered to by some members. We really apologise for this, as I know several of you were upset and distressed, as were we.

Before meeting again, we will clarify the ground rules, and seek agreement from members that they will abide by them.

If members are not prepared to agree to abide by the ground rules, unfortunately they will not be able to participate in the meetings.

We remain committed to working with parents/carers and service providers to influence positive change for our children, and to have productive meetings in which a range of parents / carers feel confident to express their views.

Kind regards,

[Chair and Vice Chair]

The ground rules as set by the Steering Group of the Haringey Parent Carer Forum - circulated 19th January 2022

Meeting ground rules

· Be respectful of each other and each other’s views/opinions.

· One voice at a time.

· Raise your hand.

· In virtual meetings, please mute yourself unless you are speaking.

· Be mindful of how you speak to everyone.

· No judgement

Suggestions from the Difficult Parent, who was witness to the incidents in the meeting

Lead by example and ensure that the rules are adhered to by Chair, Vice Chair and Steering Group members (all self selected and voted in by each other).
Draft 'ground rules' with the membership, not dictating from above (not co-production).
Ask about how to make meetings inclusive, not dictating times and venues from above (not co-production and not inclusion).
The Steering Group Members should not comment on, challenge or deny the lived experiences of other parents. (not co-production and not being representative of parents)
If the Chair, Vice Chair or Steering Group members insisting upon judging, commenting on and making accusations in a meeting, it is only 'natural justice' that the person accused has a right to reply and that this not be stopped, inhibited or prevented by the Chair, Vice-Chair and Steering Group. (Unjust and it comes across as bullying to the recipient and impartial observers)
Recognise that some services and policies from the council disproportionately impact on some SEND families and it is not always appropriate to deny people impacted by a particular policy or policy failing to not speak because they have already spoken. (Not co-production, not representative and a denial of a legal obligation to be pan-disability to get funding for the forum).
Recognise that because of how the Parent Carer Forum was formed (day time meetings, not three weeks notice, papers not shared and no public scrutiny of the process), the membership of those in leadership positions is skewed away from families where there are children with complex needs or whose parents work. (Not co-production, not representative and a denial of a legal obligation to be pan-disability to get funding for the forum).

And so our response is that by not recognising in this letter that from the outset the Chair and Vice Chair failed to follow the 'ground rules', which were subsequently broken by 'some of the steering group members', the Chair and Vice Chair have slandered 'some members' of the forum through the writing of this letter.

IWD 2022: Polly Hyams, my cuz, a midwife and a parent - oh and she's setting up a field hospital in Ukraine

Tue, 08 Mar 2022 01:39:35 GMT

International Women's Day 2022: Brian Leveson, The Difficult Parent is celebrating his cousin Polly Hyams. Polly is an adoptive parent of an adult with autism and a midwife... have I mentioned the bit about her setting up a field hospital in Ukraine?International Women's Day 2022: Brian Leveson, The Difficult Parent is celebrating his cousin Polly Hyams. Polly is an adoptive parent of an adult with autism and a midwife... have I mentioned the bit about her setting up a field hospital in Ukraine?

My cousin Polly, who is a midwife and an adoptive parent to a person with complex autism has felt compelled to help set up a field hospital in Ukraine.

In this video, Polly talks to all of us about the importance of explaining the world as it is now to our children and young people.

Fearlessly, Polly talks about her role in setting up a field hospital for Ukraine, and the possibility of being one of 80 medical professionals staffing it.

I want to pay tribute to her as she is doing this on the back of all her midwifery work throughout the Covid pandemic.

International Women's Day 2022

Mon, 07 Mar 2022 17:31:51 GMT

For International Women's Day the Difficult Parent is celebrating awesome SEND women. There are so many awesome women campaigning for better and more inclusive services for disabled children that we did not know where to begin! In this awesome shout out of women whose campaigning for disabled children and adults we celebrate today are a plethora of mothers who not only did not want their child failed, but that was not enough for them, they wanted no children to fail. Two decided to become local councillors in Haringey, many set up charities to provide services, locally, nationally and internationally, for disabled children and adults. Oh, and one decided to help in the Ukrainian War effort and decided to help set up a field hospital in Ukraine.

For International Women's Day the Difficult Parent is celebrating awesome SEND women. There are so many awesome women campaigning for better and more inclusive services for disabled children that we did not know where to begin! In this awesome shout out of women whose campaigning for disabled children and adults we celebrate today are a plethora of mothers who not only did not want their child failed, but that was not enough for them, they wanted no children to fail. Two decided to become local councillors in Haringey, many set up charities to provide services, locally, nationally and internationally, for disabled children and adults. Oh, and one decided to help in the Ukrainian War effort and decided to help set up a field hospital in Ukraine.

We asked each of these women about who they are, what they do and what motivated them to do it. We hope that you are able to find away to support them in their selfless efforts for disabled children and adults locally, nationally and internationally.

Thank You Madam President: Yvonne Milne MBE, Rett UK

Inspired by her daughter, for 37 years Yvonne Milne has devoted herself to supporting people with Rett Syndrome. Now you can be inspired by her devotion to helping others people with this rare genetic syndrome in the blog “ Yvonne Milne MBE - working for Rett syndrome for 37 years on… “

Suezanne Awotwi – changing THE WORLD for autistic people

Suzanne Awotwi is the co-founder of the Haringey based European Diversity Awards Community Project of the Year “Brightstars”. So, having won a European award for their work in Haringey, those 'Brightstars' have now turned their sights on to Africa! Read all about this amazing woman in the blog “ Suezanne Awotwi, changing the WORLD for autistic people ”.

A scoop from Children and Young People’s Scrutiny Panel member, Liberal Democrat Councillor Tammy Palmer!

Driven by her own remarkable formative experiences in the social care system, Councillor Tammy Palmer has spent the last 4 years scrutinising Haringey policies for all children on the Children and Young Peoples Scrutiny Panel. Tammy has helped exposed the extensive deficiencies in the systems for children in special educational needs and disabilities and has been very vocal about keeping the SEND service at the top of the political agenda in Haringey. You can watch Tammy talk about what has driven her to fight for the children in Haringey in the vlog “ Tammy Palmer: Fighting for the children in Haringey ”.

S END parent campaigner Michelle Simmons-Safo sets her sights on becoming a Labour councillor in Haringey

You may recall that I seconded the SEND motion at the local Labour Manifesto Conference by Michelle Simmons-Safo Disability Officer, Haringey SEND Parent that Conference resolves that Haringey Labour should, amongst other things, commit the next Haringey Council administration to implement SEND parents’ request for an independent Truth and Reconciliation Process and to apologise to parents for SEND service failings. Read more here in the blog: “ Michelle Simmons Safo - a Haringey SEND parent standing for election as a councillor ”.

Haringey Hero Sue Hessel is a long-time campaigner for better social care services in Haringey, she runs the Carers Coffee Morning in Crouch End

An utter stalwart of support for carers in Haringey, Sue Hessel has campaigned for better social care provision for 20 odd years, including marching on Downing Street! Sue currently provides a highly recommended coffee morning at the Abide Church in Crouch End. Watch this lovely video of Sue in “ Sue Hessel - Heroic Haringey campaigning stalwart ”

Jo Roach, PedalPower

Learning disabled, living in North London and looking for something to do on a Saturday? Thanks to PedalPower founder Jo Roach you can go cycling in Finsbury Park. Listen to Jo’s inspirational story here in vlog “ Jo Roach - founder of PedalPower: The inclusive cycle club in North London ”.

My cousin, who is a midwife and a SEND parent, Polly Hyams is helping to set up a field hospital in Ukraine

Finally, my cousin Polly, who is a midwife and an adoptive parent to a person with complex autism has felt compelled to help set up a field hospital in Ukraine. Right now (Monday night) she hasn’t sent me the video to go up (apparently, as a midwife who is also a parent of a disabled child who is setting up a field hospital she is currently ‘busy’), but I will add as soon as she does. (I think I can give her a bit of leeway there).

As promised: Polly Hyams, my cuz, a midwife and a parent - oh and she's setting up a field hospital in Ukraine

IWD 2022: Jo Roach - founder of PedalPower: The inclusive cycle club in North London

Mon, 07 Mar 2022 17:10:44 GMT

International Women's Day 2022: Difficult Parent is celebrating Jo Roach. Learning disabled, living in North London and looking for something to do on a Saturday? Thanks to PedalPower founder Jo Roach you can go cycling in Finsbury Park.

This is Jo Roach, North Londoner and founder of PedalPower

What is PedalPower?

PedalPower is an inclusive cycle club for learning disabled people of all ages and all abilities.

How did PedalPower start?

Jo’s daughter is a really good cyclist who happens to be learning disabled. Jo was looking for a cycle club for a daughter to go to. When Jo could not find a cycle club for her daughter, she set one up herself! Set up in 2004 with 2 people, PedalPower has helped over 2,000 people over 17 years.

Where is PedalPower?

PedalPower have sessions at Finsbury Park, Emirates and New River Athletics Track

You can find out about PedalPower and make a booking on their website: https://www.pedalpowercc.org/

At Finsbury Park they also have a Changing Places which helps make the sessions more inclusive for people with profound and complex needs.

IWD 2022: Michelle Simmons Safo - a Haringey SEND parent standing for election as a councillor

Mon, 07 Mar 2022 16:39:26 GMT

International Women's Day 2022: Difficult Parent is celebrating Michelle Simmons Safo who is standing as a Labour Party candidate in the upcoming May 2022 local council elections. Michelle has proposed motion regarding a commitment about SEND to go into the local manifesto.

So Michelle, you are a mother of 4, a parent of a child with a disability, a manager in the local CAHMs service and you are thinking of standing as a Labour Councillor. Why would you want to do that? Too much free time?

Michelle's motion for the Haringey Labour Party Manifesto 2022

Conference notes that: the joint OFSTED/CQC report (July 2021) was highly critical of Haringey Children's Service's implementation of the 2014 SEND Reforms and identified 3 areas of significant weakness requiring a Written Statement Of Action (WSOA):

1. Poor quality of Education Health and Care Plans.

2. Poor communication and co-production with SEND families.

3. Unacceptable waiting times for Autistic Spectrum Disorder assessments.

Also that:

- Haringey Councillors had previously identified these weaknesses, following the 2019 Children and Young Peoples (CYP) Scrutiny Panel investigation and report into Haringey SEND Services;

- the Amaze Report (2020) identified parents’ dissatisfaction with SEND services;

- the SEND department’s slow implementation of recommendations in CYP Scrutiny Panel, Amaze and OFSTED reports.

Conference resolves that Haringey Labour should commit the next Haringey Council administration to:

Conference resolves that Haringey Labour should commit the next Haringey Council administration to:

1. All SEND parents to be given three weeks’ minimum notice before engagement meetings and six weeks before consultations, (as recommended in the Amaze Report)

2. The co-production of the new Parent Carer Forum contract to be re-opened to ensure all parents can fully participate (as recommended in the Amaze Report)

3. All co-production and engagement meetings with Haringey SEND families to be subject to scrutiny and transparency; minutes should be online, available to all within a week of meetings.

4. To implement SEND parents’ request for an independent Truth and Reconciliation Process.

5. To apologise to parents for SEND service failings;

6. To monitor Haringey SEND department’s performance, with regular updates to families of SEND children.

I second this motion!

IWD 2022: Sue Hessel - Heroic Haringey campaigning stalwart

Mon, 07 Mar 2022 16:27:52 GMT

International Women's Day 2022: Difficult Parent is celebrating Sue Hessel. An utter stalwart of support for carers in Haringey, Sue has campaigned for better social care provision for 20 odd years, including marching on Downing Street! Sue currently provides a highly recommended coffee morning at the Abide Church in Crouch End. Watch this lovely video of Sue in “Sue Hessel - Heroic Haringey and campaigning stalwart”

Sue Hessel is an absolute love - spend find minutes watching this video and you'll see what we mean...

The amazingly awesome Sue Hessel runs the Abide church carers group every Thursday (except Christmas day) 11am to 1pm.

The Abide Church Hall is located next to the swimming pool on Park Road in Crouch End, Haringey.

In this video Sue explains her motivations for running the cares group and her passionate campaigning for disabled people and their families in Haringey. Sue tells us about the the philosophy behind the group famed for providing exciting activities for the carers in Haringey.

IWD 2022 Suezanne Awotwi, changing the WORLD for autistic people

Mon, 07 Mar 2022 16:15:49 GMT

International Women's Day 2022: Difficult Parent is celebrating Suzanne Awotwi. Suezanne is the co-founder of the Haringey based European Diversity Awards Community Project of the Year “Brightstars”. So, having won a European award for their work in Haringey, those 'Brightstars' have now turned their sights on to Africa!

Suezanne, you have set up a charity for young people with learning disabilities in Haringey, can you tell us a little bit about what drove you to do that and what the charity is?

Brightstars is an award winning charity based in Hornsey Ward of Haringey supporting young people with autism a safe and fun place for them to confidently express themselves through various activities such as African Drumming and Dance, Art, Movement Therapy, Sports, Reading Club. In addition, we provide workshops for Families and Carers of our members and organise various trips e.g. Picnics, Theatre, Canal Cruise, etc. Our next workshop is focused on wellness. We also provide transition support and advocate for them in their reviews, assessments and any other support as and when required by our members. Interestingly, Brightstars was started as a youth club but we could not turn our backs to young children, adults and the elderly who wanted to attend, diversity and inclusion is important to us. We now have members as young as 5yers and as old as 60yrs. We use a holistic approach ensuring that it is not just our members who attend but their family and friends too. We encourage residents and people from the neighbourhood to attend too. Vida and I also visit churches, organisations, groups, etc. to give talks in raising autism awareness.

I started Brightstars in response to a request from my dear friend Vida Black (Chair of Haringey Carers Forum) in 2013 to support her in responding to a need in the community. Her son Claude had completed Special Needs School and there was not much for him to do. At that time, I was extremely busy with other community activities within my own Borough but upon extensive research including resident surveys in the Hornsey area in 2013, noted that there wasn't any club like Brightstars. Thus we used our personal savings to set up Brightstars in February 2014 and registered as a charity in December 2014, and as they say the rest is history. I am proud to mention that we were finalists for Charity of the Year in 2019 by the Ghana Union UK and the British Diversity Awards. We won the European Diversity Awards in 2021 and are finalist for the British Diversity Awards 2022.

But that's not all! You've gone International! Can you tell us about your charity in Ghana, where is it? What does it do? And what led you to setting it up?

One of our long-term goals was to expand Brightstars perhaps to other boroughs or indeed in another area of Haringey. Not in a million years did we think we would go international. We visited Dominase, a small village in the Central Region of Ghana and noted that there was a need to support children with autism in that village. There was no special needs school nor a club like ours. Thus upon research and numerous meetings with various stakeholders, we set up a branch of Brightstars in Ghana - launched in November 2021. We are very proud of the impact that Brightstars is making to the lives of these young people.

How can people help you I all that you do? Do you need volunteers or fund raising?

We need all the help we can get. As a small charity within the community with such big impact on our members, we do not have a lot of funding. Thus we ask kind people and organisations to donate financially if they can but also to donate their time and services. We welcome volunteers who can drop by to support our work or fundraise on our behalf or facilitate a workshop. We are open to ideas and welcome anyone interested to contact us please via our website link below:

https://brightstarsspecialclub.com/

IWD 2022: Yvonne Milne MBE - working for Rett UK 37 years on!

Mon, 07 Mar 2022 15:50:23 GMT

International Women's Day 2022: Difficult Parent is celebrating Yvonne Milne MBE, Founder and President of Rett UK. Yvonne is a mother whose daughter has Rett. Yvonne has devoted her life to improving the quality of life of those with Rett syndrome and to support their families.

Who is Yvonne Milne?

I am Founder and President of Rett UK. I live in Worcestershire and I am Mother to Clare, who is 41 years old, who has Rett syndrome. My background is in hospitality and business management. I have also worked in marketing and been a lecturer in higher education. When Clare was diagnosed in 1985, (she was one of the first in the UK to have the diagnosis for this newly recognised disorder) I was told that there was no cure for her so I directed my energies to creating a charity that could improve the quality of life, support the families of all those affected and find out what we could do. These were very early days in knowledge about the disorder and the future looked very uncertain. Our lives changed with the diagnosis; I abandoned my career, using my experience and skills to work in the charity sector, both locally and internationally for Rett syndrome, rare diseases and disability in general. I was awarded the MBE for services to health in 1997, which I feel is recognition for the work and teamwork of all the inspirational people I have worked with over the years

What is Rett Syndrome?

Rett syndrome is a complex neurological disorder that can occur in any family and affects approximately 1 in 10,000 girls born each year, rarely affecting boys. Almost all people with Rett syndrome have no history of the disorder in their family and the mutation has happened spontaneously. Genetic, it is present from conception but remains undetected until major regression occurs at around one year of age, when acquired skills are lost and other clinical features are manifested. Those affected often have profound and multiply physical and communication disabilities and are totall reliant on others for support throughout their lives

What drives Yvonne Milne?

I have been totally driven and inspired to devote my life to the Rett cause from the minute I heard the words Rett syndrome in 1985! There was then, and still is, a great task ahead, to increase awareness, support all those affected, promote research and much much more!

How can people help you?

People can help in so many ways. Those who are close to a family can be an essential support network both in practical ways and also volunteering, perhaps in fundraising (Rett UK gets no government funding) for all the important work carried out by Rett UK, who are totally committed to their mission

For more information or to offer support go to RettUK.org

IWD 2022: Councillor Tammy Palmer - Fighting for the children in Haringey

Mon, 07 Mar 2022 11:17:20 GMT

International Women's Day 2022: Difficult Parent is celebrating Councillor Tammy Palmer. Here Councillor Palmer talks about what has driven her to fight for the children on Haringey in the vlog “Councillor Tammy Palmer: Fighting for the children in Haringey”.

Who is Councillor Tammy Palmer?

Driven by her own remarkable formative experiences in the social care system, Councillor Tammy Palmer has spent the last 4 years scrutinising Haringey policies for all children on the Children and Young Peoples Scrutiny Panel. Tammy has helped exposed the extensive deficiencies in the systems for children in special educational needs and disabilities and has been very vocal about keeping the SEND service at the top of the political agenda in Haringey. You can watch Tammy talk about what has driven her to fight for the children in Haringey in the vlog “Tammy Palmer: Fighting for the children on Haringey”.

Councillor Tammy Palmer on why she became a Haringey councillor

Tammy on Children and Young Peoples Scrutiny Panel

What Tammy did next...

I seconded the SEND motion at the local Labour Manifesto Conference by Michelle Simmons-Safo - CLP Disability Officer, Haringey SEND Parent

Sun, 20 Feb 2022 22:11:01 GMT

I have seconded the motion below as proposer by Michelle Simmons-Safo - CLP Disability Officer, Haringey SEND Parent

SEND motion

1. Poor quality of Education Health and Care Plans.

2. Poor communication and co-production with SEND families.

3. Unacceptable waiting times for Autistic Spectrum Disorder assessments.

Also that: