Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs. Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. A major concern is when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. Some Councils are more humane than others and continue to include the family, but for others... and this seems to be a familiar complaint - if your loved one is in Care and you upset the care staff - or social workers -then the chances are they will stop you from visiting. I know one parent who was notified her son had split his head open and was rushed to hospital to have his wound stitched, a week after it happened. Staff didn’t notify her at the time of the emergency because they didn’t have to! Some parents have no contact or information regarding medication or any other health issues about their loved one's welfare, all under the guise of 'best interest'.

The misuse of the Mental Capacity Act has brought a huge increase in applications for Deprivation of Liberty safeguards through the courts. It's hard to believe that in 2017 this government are advocating locking up (and Sectioning) people with special needs in NHS Units and depriving them of family contact. These vulnerable people who are being unfairly punished because this government are unable to meet their care needs, would have had more freedom in the 70s living in large 'institutions' than they do in community care and independent 'of family' living' today...

This blog has given parents the opportunity to share the experience of their unforseen life with a special needs son/daughter. Some have had great support and professional guidance whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of the disability. Facts about their family life have been distorted and manipulated into many untruths, making parents only too aware that their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling THEIR story in Warrior Mums puts THEIR truth 'out there' for all to see.
These stories are not only a means of support for parents but also a learning curve for our learning disability nurse following and other professionals.

Thanks for reading and please feel free to get in touch on the contact form below if you would like me to write your story or I can be of any help.

Take care

Michelle

9 December 2013

WARRIOR MUM JANE RACA - STANDING UP FOR JAMES

Autism - Learning Disability, Cerebral Palsy, Letter to the Prime Minister.

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
London
SW1A 2AA
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
JANE RACA

Author Standing up for James


How far would you go to stand up for your child?

Jane and James Raca 

Dear Parent/Carer,
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
Jane Raca

Contact Prime Minister's Office 

‘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.
Yours sincerely
[ your name]’

Photo: "Our lives would have been transformed if we had known of someone we could easily turn to, who could explain the system and guide us through it. Just someone on the end of a phone, or to visit us through this terrible time."

Jane Raca is mum to James, who has brain damage, cerebral palsy, autism and epilepsy. Read her story:

http://www.mencap.org.uk/blogs/my-long-fight-short-breaks

#BreakingPoint 

So there you have it! Let's all get writing and make a better future for special needs children and their families....

 



 Amazon link for 'Standing up for James'

 
 
 
 
 

3 comments:

  1. My message has gone off to PM.

    Thank you for all the hard work you're doing on behalf of thousands of families.

    You are a true campaigner! :)

    ReplyDelete
  2. I'm afraid the argument, that appeals against social care provision are not allowed, because their resources are finite is disingenuine.

    Under the Chronically Sick and Disabled Act 1970, up to £82,000 can be claimed per annum, for social care alone, a similar amount is allowed also for education, and NHS care.

    This is how my daughter's National Autistic School that cost £177,000 per annum, was financed for 5 years.

    It is also how 'independent' away from family living, at 18, is financed.

    There is cost cutting of the LA budgets, for everything, not connected with independent living, forcing, the disabled to live away from their families with strangers, and breaking the hearts of so many.

    To say nothing of their human rights.

    These independent living providers, are being paid up to £4,000 per week, so clearly the resources, are anything but, finite.

    This is an auditing excuse, to make private profit, out of money, which is the disabled and their families, which the LA pay to private companies, often venture capitalists.

    This is the real scandal.

    ReplyDelete
  3. Also, any formal complaints to the LA, about social services provision of support, or, about education provision, are likely, to be dragged out, and then result, in a care application- often care supervision order, by the Local Authority, which then halts all formal complaint investigations, apparently indefinitely...

    ReplyDelete