Disabled people are being forced to fight for their right to live ordinary lives because of the flawed and under-resourced social care system, MPs have been told by a disabled campaigner.
Anna Severwright told members of the Commons health and social care committee on Tuesday that she and other users of council-funded care and support were unable to live normal lives because of cuts to their support packages.
She said the system was characterised by fear, a lack of trust and unfairness.
She said: “People my age talk about it being a fight, fighting the system, and that constant sort of sense that we are having to fight for our rights and fight to have a life.”
Severwright (pictured), a former doctor who lives with multiple long-term conditions, told MPs that local authorities were reacting to the funding restraints in the social care system by trying to “claw back a bit of control” from those, like her, who receive direct payments to employ their own personal assistants.
She currently receives 31 hours a week in council-funded support, of which about 20 hours is for personal care that keeps her “fed, clean and watered”, with less than 12 hours for “social inclusion”.
She described how she tweeted last year about her fear of having her support package cut so it is even lower than this.
She said: “It makes me feel sick to think that my review is coming up because it is so out of my control and those hours could be cut, and so many people got in touch and said they felt the same.
“It’s such a scary time for us when we are under review. I know so many people who have had their hours cut, often by up to a third, just like that.
“That’s a third less life that that person can effectively be getting on with and living.”
Severwright, co-chair of the Coalition for Collaborative Care, said that being on direct payments had lost some of its flexibility as funding had grown ever tighter and “the system and the local authorities have tried to claw back a bit of control”.
She told the committee: “There’s an awful lot of scrutiny now over how we use our money, a lot of rules and things we can’t spend money on, and it certainly doesn’t feel that direct payments is giving us that choice and control that it was designed to.
“There’s quite a big power imbalance at the moment and a lot of fear. I get letters quite regularly in bold saying, ‘If you do not return this letter in 14 days, your direct payment may be stopped.’
“It’s that kind of relationship with the local authority, rather than one of trust and working together to enable people to be getting on with our lives.”
Severwright also criticised the system that led many older people to be placed in care homes.
She told the committee: “I have never met anybody in their 50s, 60s, 70s who says to me, ‘I hope when I get a bit older and frailer my family will put me in a care home.’
“I meet people all the time who say, ‘Don’t let them send me to a home.’
“We shouldn’t have a system that people fear having to need in their older age.”
She was also critical of the means assessment system that meant she had no incentive to save, while there was no lifetime cap on the financial contributions she makes to her care package, which would not apply if she received NHS funding for her support.
She told MPs: “I’m really grateful for the care I receive. It keeps me fed, it keeps me clean, it keeps me watered.
“But I really feel I’m not able to be living a normal life. I don’t have enough hours to be able to go out at the weekends, in the evenings, and just do a lot of the normal things that make life worth living for us.
“I find myself in the position quite regularly where I have to think, ‘Well, I’ve only got two hours left this week, do I want to do food shopping, do I want another shower or do I want to go and meet up with a friend?’ and that’s quite a hard place to have to live your life.”
She called for a new system that allowed disabled and older people to have “an ordinary and a good life like everyone else, to be part of the community, live in our own homes, be able to contribute to society, because we have a lot to offer”.
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