"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
[Add your name]
We will be adding our names. Will you?
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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