"We define ourselves as a society by the priorities we choose" Jane Raca
Earlier this year, disabled rights campaigner, Jane Raca and I were speakers on the same panel regarding the SEN changes. Jane is the author of "Standing Up for James" and a website of the same name. James is her son who has severe disabilities.
Jane worked as a lawyer before caring for James took precedence and she wrote the book to raise awareness of the daily difficulties involved in raising a child with multiple difficulties.
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.
I have written an open letter to the Prime Minister, 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."
If you want to support the campaign, I have 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]
We will be adding our names. Will you?
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
- EXCLUSIVE: DfE answers further questions on “targets” for EHCP cuts, removing children from specialist provision and plans to boost SEND in schools - October 2, 2023
- Dame Christine Lenehan: a career advocating for disabled children’s rights - September 27, 2023
- SEND Minister denies the Government is aiming to cut EHCPs by 20% with an emphatic, but unconvincing, explanation - September 22, 2023
E-mail sent. Thank you Jane and Tania for enabling me to do this and support the campaign.
Thank you Jane for all you do and for pulling us together on this one.
I read her book at one of my lowest points in life, and it provided me with solace and strength. It also made me realise that I wasn’t alone. I, too, had reached ‘breaking point.’ After year upon year of being rejected for services for my severely autistic son, and years of not being heard that my son was a risk to his 3 younger siblings, we ‘broke.’ My son went into residential care. I find the circumstances under which this happened extremely painful to talk about. What followed was an extremely stressful fight (involving lawyers) to get him placed at an appropriate residential school. At last, his needs are being met. He is making great progress at his residential school, and we have more family time, as his behaviour is now less violent. I am very willing to join Jane’s campaign, and will do whatever I can to help prevent other families having to go through the suffering that we had to endure
Thank you Andrea and thanks for sharing your story. If you are interested, I would be really pleased if you would share your story in a guest post so that LAs are reminded why we are *trying* to change things, so that families such as yours do not suffer like this again!
Jane I have just received the response from the Department of Education. I expect it’s a standard letter but wanted to paste it here for you to see. I don’t think it is factually correct because I understand the new bill does not actually preserve the rights that existed before. I also don’t believe it will reduce the ‘battle for services’, in fact I think it makes it much worse.
Dear Mr Penfold
Thank you for your email of 29 December, addressed to the Prime Minister, about the Children and Families Bill. Your letter has been passed to this department as we are responsible for policy on special educational needs (SEN) and disability. On this occasion, I have been asked to reply.
We believe that our SEN reforms will improve outcomes for disabled children and young people which will not undermine any rights or services. The reforms maintain existing protections and extend them for young people over 16 with SEN.
All children and young people with disabilities are covered by the Equalities Act 2010. This requires schools, colleges and others to make reasonable adjustments and provide appropriate auxiliary aids. This protects the right of all to an inclusive education and the Bill goes further. Where adjustments are not sufficient and a pupil requires special educational provision, the reformed provisions in the Bill and new SEN Code of Practice will kick in to ensure they get the support they need. The Bill does nothing to affect eligibility for other support, including social care provision under Section 17 of the Children Act, which applies to all disabled children, and support from the health service.
While focus of the legislation is on SEN, the reforms are enabling, and there is nothing to stop local areas applying the principles of the Bill more widely as they implement changes, for instance in joint commissioning and the local offer.
In particular, the local offer will reduce the battle for services by requiring local authorities (LAs) to fully involve families in setting it up and reviewing it – publishing any comments. This way, it provides a powerful accountability tool for the families of children with SEN to ensure that the right range of services are fully available and to be clear about how they can be accessed.
As the bill stands, Education Health and Care (EHC) plans must already include all the provision reasonably required by a child’s SEN, including social care. LAs are under a general duty to provide social care services for disabled children and young people.
It is vital that EHC plans provide consistent, clear information, including provision to be made, and support portability when families and young people move across areas. This does not, however, necessarily require complete national prescription. We have left flexibility for local areas to design EHC plans to best meet the needs of the individual children, parents and young people they work with.
To ensure consistency, we have included in the Bill and regulations a list of the key information that every EHC plan must include in distinct sections. In addition, chapter 7 of the draft Code of Practice sets out more detail on what should be included in EHC plans and how it should be written to provide clarity to parents, young people, schools and other institutions working with families.
You have also mentioned that there should be a right of appeal to a tribunal over all parts of the ECH plans. We believe that the First-tier Tribunal (SEND) does an excellent job in hearing and coming to decisions on appeals about SEN. Widening its remit to cover health and social care would create inequalities between children and young people with serious health and social care needs, who also have SEN, and those who do not.
There are already well established health and social care complaint routes which are available for all children, young people and parents. We believe that it would be better for the tribunal to continue using its expertise in resolving appeals about SEN.