Haringey parent carers stitched up by a service specification for the new forum that is not fit for purpose and not set up for coproduction
- By Brian Leveson with Marta Gave and other SEND parents in Haringey
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- 08 Aug, 2021
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A Freedom of Information (FOI) request for the specification for the new parent carer forum in Haringey shows specification not fit for purpose. Designed behind closed doors with no scrutiny and transparency, an FOI was the only way we could gain access to the document, after the deal with the new provider organisation was already done.
To kick off this blog, lets be clear what we are talking about. Here is a explanation of that good practice is from South Gloucestershire Parent Carer Forum
The specification for the new forum is for consultation not coproduction
The specification for the new Haringey Parent Carer forum was drawn up in secret by a small self selecting group of parents (5 in total). There was not scrutiny of their work, no discussions, not transparency. Meeting minutes were not put online and if you were not part of the selected few, you could not be involved.
We had to make a Freedom of information request to see what was in the specification. On the very first page it was made clear that the forum is designed for consultation and to present parents view to decision makers, not for parents to be joint decision makers and attend meetings on the same footing are professionals.
You can read the full specification for the new parent carer forum via this link
https://www.whatdotheyknow.com/request/753792/response/1807534/attach/3/Appendix%201%20PCF%20Service...
We had to make a Freedom of information request to see what was in the specification. On the very first page it was made clear that the forum is designed for consultation and to present parents view to decision makers, not for parents to be joint decision makers and attend meetings on the same footing are professionals.
You can read the full specification for the new parent carer forum via this link
https://www.whatdotheyknow.com/request/753792/response/1807534/attach/3/Appendix%201%20PCF%20Service...
How the parents were self selected
According the the AMAZE report there are 6.397 pupils with SEND in Haringey. Some parents got a email last Autumn to attend some some online meetings a about the development of the new Parent Carer forum. Parents were instructed that for data protection (GDPR) reasons that had to give their emails to the council in advance of attending: this was utter nonsense, which we successfully challenged earlier this year. But along with lockdown, caring responsibilities and the fact that you could only contribute via the meetings, there was no other ways to contribute like a survey, meant that there were plenty of barriers in place for parents to take part in this process.
We were aware that we were not getting all the emails that we should have done from the department, who were their usual hostile selves when challenged. After 4 months of constant challenge as to why we were not being included in emails, we were told that there are three databases for parents, and weren't on all of them, despite receiving a plethora of services from Haringey like SEND transport, EHCP, direct payments for short breaks and having attended meetings with the department since 2016 - go figure?
With not all parents invited to meetings and by no means all of those invited able to attend, about 20 parents attended the online meetings. From this small group 5 stepped forward and engaged with another process to draw up the specification. No parents were aware before this happened that this would be the process for drawing up the specification for the new parent carer foru as it was not made clear in the initial emails that some, but not all, parents recieved.
We were aware that we were not getting all the emails that we should have done from the department, who were their usual hostile selves when challenged. After 4 months of constant challenge as to why we were not being included in emails, we were told that there are three databases for parents, and weren't on all of them, despite receiving a plethora of services from Haringey like SEND transport, EHCP, direct payments for short breaks and having attended meetings with the department since 2016 - go figure?
With not all parents invited to meetings and by no means all of those invited able to attend, about 20 parents attended the online meetings. From this small group 5 stepped forward and engaged with another process to draw up the specification. No parents were aware before this happened that this would be the process for drawing up the specification for the new parent carer foru as it was not made clear in the initial emails that some, but not all, parents recieved.
Not only is the specification for the new forum not fit for coproduction, the underlying issues of how the Haringey SEND department go about fulfilling their legal duties with regard to parent carers and coproduction have not been addressed and will not be addressed by a forum for parents
Parents are not to blame for the failings of Haringey SEND to coproduce services, by treating parents as equal decision makers.
We attended 'SEND Reform' meetings from November 2016, innocent of all things related to governance, scrutiny and legal duties. As we became wise to the process, in Summer 2018 we requested the meeting minutes for the meetings we attended. Not only did some of them have metadata that indicated that they had been written up to 2 years after the meetings had taken place; there were no 'actions arising' for more that 2 years worth of meetings.
We then went with the then manager of SENDIASS to HealthWatch to raise concerns about this; and it was through that interventions that the Transitions Reference Group was set up.
But there we meetings with the Assistant Director and Commissioners with responsibility for SEND within Haringey from March 2019 (when Haringey Involve) lost their funding about coproduction and what it is. Marta Gave and sendPACT led on this, being clear what coproduction is and were transparent in their dealing, blogging about the lack of progress some years ago now.
https://sendpact.com/2019/11/21/sendpact-formal-complaint-about-haringeys-coproduction/
We attended 'SEND Reform' meetings from November 2016, innocent of all things related to governance, scrutiny and legal duties. As we became wise to the process, in Summer 2018 we requested the meeting minutes for the meetings we attended. Not only did some of them have metadata that indicated that they had been written up to 2 years after the meetings had taken place; there were no 'actions arising' for more that 2 years worth of meetings.
We then went with the then manager of SENDIASS to HealthWatch to raise concerns about this; and it was through that interventions that the Transitions Reference Group was set up.
But there we meetings with the Assistant Director and Commissioners with responsibility for SEND within Haringey from March 2019 (when Haringey Involve) lost their funding about coproduction and what it is. Marta Gave and sendPACT led on this, being clear what coproduction is and were transparent in their dealing, blogging about the lack of progress some years ago now.
https://sendpact.com/2019/11/21/sendpact-formal-complaint-about-haringeys-coproduction/
sendPACT blog on lack of response to complaint about progress towards coproduction
Since the 2014 reforms, parents have raised concerns about the lack of coproduction
Below is a timeline showing the history of coproduction and parents engagement in Haringey. Parents both now and then are powerless to address the underlying issues within Haringey SEND
The underlying issues with Haringey SEND
Parent reps are like lambs to the slaughter
So much of the specification for the new parent carer forum puts the responsibility on parent volunteers to fulfil Haringey SEND's statutory duties that we are concerned that parent reps are still being lined up to take the blame for the failings of the Haringey SEND department
If you thought SEND was bad - the NHS is seemingly prepared to throw away money to private companies
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
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.
Never EVER get on the bus without a camera running if you need the priority wheelchair space
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.
At 3pm today I received some barefaced lies from Haringey Council Adult Social Care in response to a photograph I published online yesterday and the media interest it generated
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: last year we know of one child who died on Haringey SEND Transport in the summer heatwave and another who had seizures.
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
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
Is the argument for and against exemptions for disabled people in Low Traffic Neighbourhoods really a case of GOOD versus EVIL?
