A few weeks ago Hayley Goleniowska (Downside Up blog) asked me if I'd met Jane Raca, and true to Hayley, she sent me Jane's Twitter link and before I knew it I had downloaded Jane's book 'Standing Up For James'. I was immediately engrossed with Jane's story and the battle she undertook to give James a decent life in an appropriate residential school setting and also for her family's right to decent respite care. But Jane didn't stop there, indeed she didn't!
Like lots of parents of special needs children Jane, who is a lawyer, looked at the bigger picture and set out to safeguard other special needs children and their (often worn out) parents.
This post is not the usual format for Warrior Mums, it's a one-off special for a very special Mum. So please support Jane's campaign for better provisions and easier access for children and families with special needs.
Below you will find an open letter that Jane has written to the Prime Minister and at the bottom of post you'll find a direct link to 10 Downing Street and a sample message for you to send in support of Jane's letter. Remember, it's about the quality of your children's future so please please show your support by backing Jane's letter.
"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."
My name is Jane Raca, Mum to James, who has full blown autism..
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.
Author Standing up for James
How far would you go to stand up for your child?
You have contacted me before about my campaigning work for disabled children. I am getting in touch to ask if you will help me in this, by emailing the Prime Minister urgently over a piece of legislation that is going through parliament.
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.
I have written an open letter to the Prime Minister, (attached) which explains the point in more detail. If you feel you can support it, please email the Prime Minister ASAP using this link. Select 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.
Thank you very much
‘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 tribunal over all parts of EHC plans.
[ your name]’
So there you have it! Let's all get writing and make a better future for special needs children and their families....