Thousands of disabled people across the UK are forced to rely on charities for basic care, equipment and vital information because of gaps in social services, according to new research by Shelter and Capability Scotland. Their report, Fit for Purpose, to be published this summer, will expose the constant battle disabled people face as they try to adapt their homes or move into more suitable housing. A lack of practical advice, long waiting lists and shortfalls in funding are common because of a huge gap between government policy and practice on the ground, the authors claim.
The findings add to pressure on the Government and health authorities after a scathing report into the care received by six people with learning disabilities who subsequently died. Their cases were described as an "indictment of our society" by the health and social care ombudsmen.
New research highlights problems common across the UK, where charities frequently fill gaps left by a shortage of suitable housing and discrimination in the job market. Many disabled people are still reliant on social services to decide what they need.
Parents of severely disabled children in some parts of the country rely on charities for basics such as incontinence pads and wheelchairs. A recent survey by the charity Livability found a lack of classroom services prevented one in five young adults from pursuing higher education.
The findings come only days before a report by the Joint Select Committee on Human Rights, which looks at the Government's failure to ratify the UN Convention on the rights of persons with disabilities. The Government says it will ratify the treaty this year but insists it must opt out of several unworkable areas. The Select Committee strongly criticised ministers recently for the delay and for failing properly to consult disabled people about their decision.
Alice Maynard, chair of Scope, said: "The Government's decision to opt out of certain areas means it is essentially ring-fencing parts of life which disabled people can and cannot go into. This reinforces the view that disabled people are not as equal as others and that it's OK for other people to decide where they can and cannot be seen."
Sandi Wassmer, 46, from London, runs a web design agency. She is registered blind.
"The obstacles I face are nothing to do with my visual impairment. Other people's attitudes and their ignorance are my biggest problem. Most people still don't get it. They don't know how to engage with people like me because they're scared and they're ignorant, so they assume I'm not capable. For me, these attitudes present in different ways. It can be a well-meaning person in a Tube station who offers to help me in a really loud and slow voice as if I were stupid. In business, because my disability isn't obvious, I tend not to tell anyone because I know how most people who don't know my work will react. I've lost potential clients because they immediately assume a blind person can't run a successful design agency. Disability is seen as a flaw or limitation."
Dan Pepper, 20, from Stockport, is an elite swimmer with a learning disability.
The International Paralympics Committee banned all athletes with a learning disability from competing at the Paralympics after the Spanish basketball team cheated at the Sydney Games. In the run-up to 2012, it means that children are excluded from government initiatives to find new talent. And Dan could miss out on representing his country at the very top level.
"Sport has always been my thing. I went to a mainstream school and while my friends would beat me in the classroom, I could outrun and outswim them all. I swam well under the qualifying time for Athens but in the end we weren't even allowed to participate in an exhibition event. It was so disheartening: one day I was telling my school friends I was going to the Olympics, the next day it was all off. We were promised the ban would be overturned for Beijing, and there are only so many times you can brush off the disappointment and keep getting back in the pool. It's hard to train nine times a week when there isn't anything to aim for. The swimming pool is where I'm the best and I just want the chance to prove that at 2012."
Social life/public transport
Marta Hancock, 40, from Derby, has used a wheelchair for 30 years.
"I travelled down to London last week to attend the premiere of The Boat That Rocked. The film was great but the journey and overnight stay were a nightmare. There is no lift at Derby station. I couldn't get to my wheelchair space on the train because there was luggage in the way. The toilets on trains are too small. There is no kerb at the taxi rank at St Pancras station, which makes it much harder to get a wheelchair into a taxi. In the hotel, there were no hand rails around the toilet and the hoist didn't fit in the bathroom so I had to use a bed pan. The bed was screwed to the floor so the hoist wouldn't fit under that either, and this was advertised as a wheelchair-accessible hotel. It's not easy having a social life when you're in a wheelchair."
Social care and equipment
Leah Cutting, 18, from Ipswich, has cerebral palsy. Alison Cutting, her mother, describes the battles the family faces to get essential care and equipment.
"Most of the services Leah uses will stop when she turns 19. Leah loves school and the social life that goes with that, but after one more year there, she is too disabled to participate in any of the local courses and placements that social services provide. When she finally gets a personalised budget we will have more options, but it's possible that my husband will have to take early retirement if we can't find anywhere suitable. Respite care from Scope has allowed us to be a normal family for our other two children. But according to her social worker, the only adult option in our area is a care home for the elderly, with no social activities – no way. We've relied a lot on charities over the years for equipment such as communication aids, seating and money for holidays. It took us 18 months to convince social services that Leah had outgrown her wheelchair."
Jeffrey Miller, 48, from Bishop's Stortford, has multiple sclerosis. His life is restricted to the downstairs part of his house.
"My brother and I installed all the hand rails in the house and adapted the bathroom ourselves as it was going to cost us more if I paid what the council wanted me to contribute. My mobility has got much worse and there's no way I can get upstairs any more. This means I rely on my wife to help me have a strip wash every day because the bathroom is upstairs. A stair lift would cost us £10,000. So even though we'd like to stay in this house, the Papworth Trust has helped us to get on to a couple of housing lists as I need access to the shower. It's been a year already and I've no idea how long it will take."