Haringey Parents at the SEND National Crisis March

  • By The Difficult Parent
  • •
  • 02 Jun, 2019
  • •

On Thursday 30th March Haringey  Parent Carers took part in the SEND National Crisis March in London.  With marches, rallys, protests and picnics in 28 towns and cities across the country, this national day of action was organised by SEND National Crisis, founded by two SEND parents Nadia Turki and Poppy Rose.  Here are some photos of our BIG DAY OUT

"The true measure of any society can be found in how it treats its most vulnerable members" Gandhi

Haringey Lib Dem councillors Tammy Palmer and Dawn Barnes met us in Parliament Square for speeches and to lend their support.  Given our needs go beyond education, Councillor Palmer discussed accessibility with us and wondered how on earth we had got to central London on  public transport (we'd split up - those that could went on the tube, the wheelchair plus son and carer went in one of those splendid London Black Cabs)! Councillor Barnes listened to Anna Kennedy OBE talking about her experiences of autism and inclusion. We also met the Mayor of Hackney, his deputy and their cabinet member for SEND.  We received great support on Twitter from Zena Brabazon, Mahir Demir and Seema Chandwani.

Photos above clockwise: Haringey Parents with the Mayor and Deputy Mayor of Hackney, Sarah Miller, Director of Markfield, Marta Gave founder of SEND Pact; Difficult Dad and Son with the Mayor; Tammy Palmer, Haringey Lib Dem spokesperson for Children and Families by the statue of Millicent Fawcett, campaigner for women's suffrage; placard with Gandhi's quote "The true measure of any society can be found in how it treats its most vulnerable members" at the foot of the statue of Gandhi

End the TOXIC culture

There was an amazing show of support for SEND parents, with professionals, politicians and educators uniting for a campaign with the over-riding objectives to put the needs of the child at the centre of all decisions and actions; Legal and financial accountability for local authorities in their treatment of young people and their families and an end to a culture that encourages the blaming, shaming and dismissal of parents of young people with SEND. 

Photo's above clockwise: Philip Glanville, Mayor of Hackney; Sarah Miller, Director of Markfield Project in full voice (markfield.org.uk); Anna Kennedy OBE, prominent autism campaigner (annakennedyonline.com); Anntoinette Bramble, Deputy Mayor of Hackney with their member for Families, early years and play, Chris Kennedy.

The day of protest after the night before

We'd had a bit of a difficult night before as son had a seizure and stopped breathing at 8pm.  The London Ambulance Service were on our doorstep 4 minutes and 44 seconds after we had begun to place the call (still on the line to the 999 operator).  We were well looked after in paediatric A and E at the Whittington and then on Ifor Ward.  We were discharged 'Fit to March'.

Photos above clockwise: Difficult Dad and Son being interviewed for Sky News at 1pm; Son with his placards - not bad for a lad who was blued into the Whittington at 8pm the night before - that's the NHS and the London Ambulance Service for you!; parents with placards outside Downing Street

Placards and a petiton at Downing Street

We were met at Downing Street by the MP Emma Hardy, and a 13,000-signature petition was handed in at Downing Street calling for funding to keep pace with demand.

Children and Families Minister Nadhim Zahawi says that "Funding for the high-needs budget is a priority for this government and we know that councils and schools are facing pressures. That's why in December we provided an extra £250m up to 2020 to help manage these costs. This takes the total amount that we have allocated for high-needs funding to £6.3bn this year, compared to £5bn in 2013"

But since the 2014 SEND Reforms, that funding has had to meet the needs of 19 - 25 year olds as well. ie 1/3 more children and young people than before the reforms.

You know, this sort of thing is a Maths GCSE question.

"The Government used to spend £5bn on children and  young people aged 0 - 18.  It now spends £6.3bn on 0 - 25 year olds with SEND.  Do you think the funding has gone up or down? Justify your answer [5 marks]

Speeches in Parliament Square

There were passionate speeches in Parliament Square from SEND campaigners, educators, parents, children and young people, including Siena Castellon, Alfie Scanlon, Emma Parker, Max Green, Kevin Courtney, Dean Beadle, Dr Carrie Grant, Dr Anna Kennedy, OBE, Tania Tirraoro.

We have all had similar experiences.  Having to fight for every little bit of provision and support, whist dealing with the day-to-day practicalities of being full-time parent carers (because our son needs two full-time parent carers); holding down jobs to pay the bills and really, you can forget any self-care needs of our own we might have.  We have been disparaged and dismissed, mis-led and mis-informed... and like so many other parent carers, we are just not going to take it any more.  It is time to speak up and speak out.

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