Disabled people ‘battling for support’

Chris Haines ICNN Senedd reporter

Disabled people too often face a David and Goliath-style battle for support under Wales’ health and social care system, a committee heard.

The Senedd health committee took evidence about the Welsh Government’s plans to reform direct payments which allow disabled people to arrange their own care and support.

Nathan Lee Davies, an author, artist, and activist from Wrexham, told the committee he has had a largely negative experience of direct payments with his local council.

“The local authority has recently clawed back £33,000 of my direct payments,” he said, adding that he finds it difficult to spend his money in the way he would like.

Mr Davies, who has Friedrich’s ataxia, which affects his co-ordination, balance and speech, was saving up for a rainy day as well as a holiday to Florida – his first break in 14 years.

‘David and Goliath’

But Wrexham council demanded the return of “surplus” funds, leading him to launch a successful gofundme campaign to raise money for his dream trip.

Chris Hall, a volunteer who supports Nathan, said the campaigner gets no opportunity to co-produce his “defective, appallingly written” care and support plan.

He said Nathan faces a continual David-and-Goliath battle with a “dysfunctional” direct payments department, warning: “They’re not interested in what Nathan wants.”

He drew a parallel with the victims of scandals around the post office, infected blood, and the Hillsborough disaster – who found themselves isolated and up against big organisations.

Mr Hall told the committee disabled people are too often walking a financial tightrope unable to save money for a potentially catastrophic rainy day.

‘Better the devil’

He stressed that disabled people deserve the opportunity to live a fulfilled life, not just get by.

If passed, the health and social care bill will introduce a right to direct payments via the Continuing NHS Healthcare support service.

Mr Hall warned that disabled people who opt for direct payments for Continuing NHS Healthcare may not be able to go back to receiving support from the council.

“I think Nathan and many people who are disabled say ‘it’s better the devil I know’,” he said.

“Rather than jumping into a swimming pool and saying ‘I’ll see if I can swim’ they’re saying ‘I’ll stay on the edge of the pool – at least I’m not drowning’.”

Shahd Zorob, a fellow campaigner, from Carmarthenshire, warned about more pressure being piled on an already under-strain health service.

‘Revolving door’

Ms Zorob, who has cerebral palsy, also raised concerns about a shortage of personal assistants, saying the pay is simply not good enough.

Mr Hall agreed that there is too often a “revolving door” in terms of support workers, with Mr Davies finding it difficult to recruit and retain staff.

“He’s effectively self-employed and managing 10 staff,” he told the meeting on June 12.

Cecilia Kenny, a disability rights campaigner, who is also from Wrexham, called for clearer information and communication around the plans for direct payments via the NHS.

Samantha Williams, policy manager at Learning Disability Wales, supported the reform’s aims but raised concerns about implementation and the administrative burden on families.

‘Two-tier war’

Jake Smith, policy officer at Carers Wales, said the bill would potentially increase choice and control for unpaid carers and their loved ones.

Kat Watkins, project development officer at Disability Wales, who recently moved to Continuing NHS Healthcare herself, also welcomed the proposed changes.

She said: “We’ve got a two-tier war between disabled people and people with long-term health conditions who either can have the control over their care or can’t.

“And that is not something that we want in Wales at all.”

Ms Watkins added: “It’s so important for human rights …they may have complex health needs but they still have rights as human beings to have an independent life.”