Have your say to change legal rights in SEN Bill: Join Jane Raca's campaign

"We define ourselves as a society by the priorities we choose."

Copyright Jane Raca

Last year I had the very great priviledge of meeting Jane Raca at a Mencap reception at No.10. Mum, legal eagle and author of Standing Up for James she is a force to be reckoned with in the world of disability and SEN.

Jane is now calling on parents and carers of children and young people with SEN/Disabilities to join her campaign to make the government stop the rush through parliament of the Children and Families Bill in its present form because its provisions are woefully inadequate.

Jane says, “You may know or have personal experience of the suffering which is caused, when families of disabled children don’t get the health care or equipment they need, or enough respite and help at home. The Children and Families Bill was supposed to change that. However, the government has fallen short of its original promise.
If the health service doesn’t provide what your child needs, you will still be left with a complaints process, not a right of appeal to an independent tribunal. The government also does not want to strengthen the right to social care for disabled children, because (it says) local authorities may not have enough funds for both disabled children and children at risk of abuse!"
The children and families bill will be voted on very soon.  
I have been told by several children’s charities that a chorus of parents’ voices is needed to change the bill."

Jane's open letter to Prime Minister, David Cameron explains in more detail:

Rt Hon David Cameron MP                                 
10 Downing Street

9 December 2013
                                                            Open Letter (by email and post)

Dear Prime Minister

I am the mother of a severely disabled child.  He has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severely autistic. He uses a wheelchair, can’t walk or talk, can’t use his left hand and is doubly incontinent. I am writing to you to express my concern over the lack of social care provision for children like him.

Many local authorities are failing to provide respite and home carers, and this is causing great suffering. There are parents trying to survive for years, raising their children on little sleep, with no breaks and no help. They are experiencing depression, exhaustion and marital breakdown. They have no hope of affording the ongoing specialist care which is needed. If they can summon the strength to take on their local social care department, they face a lengthy, ineffectual complaints process. What they need is a fast, independent forum, with the power to award the necessary support for their child.

The children and families’ bill misses a golden opportunity to achieve this. It introduces joint education, health and care (EHC) plans in place of statements of special educational needs. For the first time parents will have all their disabled child’s needs recorded in one place. But they will still only be able to appeal the education content of the plans to an independent tribunal, as is the case now. That happened to my family; we won an appeal over my son’s school, but it took us another five years to get the social care he needed. Why can’t the bill provide a right of appeal to tribunal, over all the contents of EHC plans?
The government has said that it doesn’t support a right of appeal against social care issues. It doesn’t want local authorities to be under a statutory duty to provide the care part of individual EHC plans, since they may not have enough money to look after both disabled children and children at risk.
This is the finite resources argument, and goes to the heart of the matter. We define ourselves as a society by the priorities we choose. Surely these priorities include providing humane levels of support to people who from birth will never be able walk or talk, let alone work? This should not have to be at the expense of protecting children at risk of abuse. Pitching those two sets of critical needs against each other is unacceptable.
The National Autistic Society has presented the government with a petition of over 10,000 signatures on the importance of a single point of appeal from all parts of EHC plans. That is a lot of parents, but it is also just the tip of the iceberg. They are telling you that they are not prepared to carry on battling on all sides. They need the EHC plans to make a real difference to the most vulnerable people in our society.

Yours sincerely


Author Standing up for James

If you feel you can add your voice to the campaign, if this is something that you feel strongly about, please email the Prime Minister ASAP using this linkSelect the option ‘contact the prime minister’s office’. If you want to, you can use the phrase below. If you feel able to share your own experience that will make your message even more powerful.”
Jane has typed out the wording to make it even easier. Remember what Jane said: “I have been told by several children’s charities that a chorus of parents’ voices is needed to change the bill.”

Dear Prime Minister
Please amend the Children and Families Bill so that disabled children are able to obtain the social and health care they need by having:
  • A statutory right to the individual social care set out in each plan
  • A right of appeal to the Tribunal over all parts of EHCP plans
Yours sincerely
[Add your name]


  1. I have to say I don't really understand all this, just that children aren't able to access the right help due to financial constraints.

    1. I too am left baffled by the intricacies of the Bill, I guess that's how the govt. like it to be Joy. It's about ringfencing resources and also protecting those who are most vulnerable who once again seem to be at the bottom of a list of priorities.

    2. Hi Pinkoddy. I'll try to explain. If your child has a statement of SEN, he/she is entitled to have their educational needs (as set out in the statement), met. If the local authority won't agree to provide what is in the statement, you can appeal to an independent legal tribunal. But the same does not apply to a child's health or social care requirements.
      So for example, if you are up most nights with a child who has SEN who is also epileptic, you may desperately need nursing cover at night so you can sleep, and for the child to spend some time in a respite home, so you get some quality time with the rest of the family. But authorities are most unwilling to pay for these things and you then have to appeal through complaints procedures. That takes ages and often you get nowhere, as the procedures are carried out by the authorities themselves.
      The children and families bill will replace statements of SEN with joint education health and care ( EHC) plans. These bills will record ALL of the needs of a child with SEN/disabilities. That's great. But you will still only be able to appeal the education part to tribunal. I think that is wrong and I want all parts of EHC plans to be appealable at the same time, to the same, independent tribunal. This is particularly important to children with disabilities in addition to SEN, which require social and health care. Hope this helps. Best wishes Jane Raca


Thank you for joining in the conversation at Downs Side Up