Disability rights?

Throughout most of my working life I was involved in caring for other people, as a Nursery Nurse, childminder, foster parent, support worker for adults with learning disabilities, live in carer for disabled people, and currently as a cleaner, a job that has its own aspects of care, as I work for a couple of elderly ladies. I don’t need to do any personal care, but I feel my regular presence in their homes is valuable not only for the cleaning I do. The contact with someone from the outside world is important. The chance for them to chat or tell me about practical problems they are having is helpful, and I really care about what happens to them.

The families I was involved with as a foster carer had a lot of money and resources thrown at them. As soon as Social Services had a family referred to them, the very expensive wheels were set in motion. I remember that some families had electricity and gas bills paid off, in order that children could be returned home to a warm house, cots and buggies and other equipment was bought, often more than once, as parents reported that someone had “stolen” the first lot. Even though we all knew that the equipment had been sold, the wallet would be opened again, for the sake of the vulnerable children involved.

Sometimes, families didn’t want or need help. There were families who had come into the system because someone had reported bruising on a child. Even though eventually it was decided that there wasn’t a problem in the family, there had already been a lot of time and therefore money spent on them. Obviously it was necessary, better to investigate an innocent parent than risk the life of a child who might have been abused. 

It was when I was working as a support worker for disabled adults that I started to realise what a fight their parents had when their children were born. They hadn’t been given a lot of help or advice, beyond “He’ll never walk/talk/be able to be independent…..better to ‘put him away’ and try again”.

One mother eventually got a diagnosis for her child’s disability after nearly forty years. If she had been diagnosed at eighteen months, when the problems started to emerge, it would have saved all those years of heartache and rage, with the mother blaming a hospital for the disabilities. She only got the diagnosis when she found a doctor on the Internet, and took her daughter to see him. She had to pay for the privilege, but it was worth it for the peace of mind it gave her. She shouldn’t have had to do that. The help should have been offered right at the beginning.

I heard similar stories over and over again, that if your child has disabilities, you aren’t automatically given the information you need, or offered the help, financial or otherwise, that you are entitled to. It’s up to you to find out all these things, whilst at the same time you are grieving for the child you had thought you were going to have, and trying to care for a child with often very complex needs.

Of course, the parents I talked to had grown up children. Things might be different now. Maybe if your child is disabled now, someone comes to you with a list of benefits you are entitled to. Perhaps they say “This is the care package you are entitled to. Phone this social worker and she will arrange for you to meet the people who can give you respite, should you want it. It’s all arranged. They are just waiting for you to give them a call.”

The point is, all children are vulnerable. A lot of families need help. A family with a disabled child is under a lot of pressure. Imagine if your brother or sister needs constant care from your mother. Where does that leave you?

I’m not suggesting that these families need help from Social Services. That would not be an appropriate use of resources. I am suggesting though that we need some sort of disability services. Something that includes all disabled people and their families to use, or not, as they choose. The problems don’t always come along at the birth of a child. Sometimes the families cope very well, until the next crisis point, which is often the worry about what will happen to the child when the parents are no longer able to care for them. Parents should not have to seek out information for themselves, it should be offered to them, along with information about any new financial help they are entitled to as their child’s needs change.

And if, as so often happens, a child dies, too young, what support is there for the parents? I’m sure there are many charities that will help if approached, and I know that if a hospice has been involved, they will often provide support for the family. But what of the family who managed their child’s disability largely without help? Who jumps in to offer support and help then? Where is the government agency who will pay for a funeral and a memorial stone? 

These parents are just as deserving of our help and support as the families who find themselves needing foster care for their children. It is about time somebody thought about them, and did something to help without having to be asked.

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