A member of United Response’s campaign panel – a group of people with learning disabilities – explains why the government must listen more.
My name is Shairaz and I am a member of United Response‘s campaigns panel. We are a group of people with learning disabilities and some family members who want to speak out on issues that are important to us.
United Response asked us to tell them what we thought about the government’s plans for social care. The government has put these plans in its white paper and draft care and support bill.
Our opinions have been turned into a report by United Response, published today, called Our future. In the report we tell people about what it is like to have a disability and what we think the government should be doing to make things better for us.
Many of us (two-thirds) had not heard about the changes that the government was going to make to social care, before we took part in the report. Those of us who did know about the changes were worried about our benefits as we knew that funding was being cut.
For me, I think that if I was prime minister, I’d make sure that everyone had better support and funding.
I’d make sure that disabled people were always cared for and that they were not neglected and I’d want people to have the facilities and things that suit them; for example someone might need a wheelchair or things changed in their home to make it easier to live there.
It’s really important that people’s living environment is right, because it helps people to live a good life.
The government is looking at who will receive care in the future and how it will be funded. We all felt that disabled people should receive free care.
It’s all about fairness. Some people will need support forever and the government just has to accept us as we are.
We didn’t choose to be disabled, so it’s not fair for the government to expect us to pay. A lot of the time people with disabilities are neglected, and they shouldn’t be.
We need to help all people with disabilities.
We also felt that people should have support for their needs early on. For example, if someone has depression, it’s really important to spot it early. If people get more support early on, then they’re less likely to end up in a crisis.
Some of us had bad experiences when we moved from one sort of service to another and so we think its good that the government is going to help people more with change and to set a minimum standard of care. But we also think that there should be more support for people who only have a few needs.
Just because someone has a disability that’s under the surface, it doesn’t mean they don’t need help.
Disabilities are not all the same and they’re not just about physical difficulties. Things can go wrong inside your head too. People can be like apples or eggs – they look fine on the surface, but you don’t know what’s going on underneath.
Disabled people shouldn’t all be classed as the same. People need to see the human underneath and see that everyone had been born with differences.
The campaigns panel liked many of the government’s plans, but we are concerned about funding and benefits and how things will actually work.
For things to be better in the future the government must listen more to disabled people.
All politicians should meet disabled people; just sit down and have a chat. Once they understand us, they can support us better.
Shairaz is a member of United Response‘s campaigns panel.
Read more at Guardian