Disabled people are being treated as “guinea pigs” by the Welsh government, a campaigner claims after the scrapping of a scheme which pays for home help.

The Welsh Independent Living Grant was introduced to help people who previously claimed from the UK government’s Independent Living Fund, which closed in 2015.

WILGs help severely disabled people pay for cooking, cleaning, dressing and laundry, with a weekly average of £335. More than 1,500 people are helped by the scheme.

It was due to run until the end of March, but Social Services Minister Rebecca Evans said last November funding would continue for another year – after which it will be handed over to local councils in 2018-19.

The annual £27 million fund will then be managed directly by local authorities during 2018-19, so
they can meet the support needs of all former ILF recipients by March 31, 2019.

Nathan Lee Davies, 40, of Stansty Wrexham, is hoping Welsh Labour will reconsider their decision.

He has begun a petition opposing the changes after he rejected the Welsh Government’s claim that the new scheme was the result of “stakeholder advice.”

“Something needs to be done as our disabled friends in England have suffered under a similar system that has seen local authorities being solely responsible for their care and support since 2015,” said Nathan, who has Friedreich’s ataxia – a rare genetic disease causing nerve

“This cannot be allowed to happen in Wales as well.

“We must organise ourselves and demand to be listened to.

“I would like to hear from other WILG recipients in the hope of holding a series of meetings to discuss how we can best oppose this closure and create a pressure group to support each other through this worrying time.”

Wheelchair-bound Nathan was first diagnosed with Friedreich’s ataxia when he was 16, after exhibiting symptoms from the age of 11.

The former Yale College student began to find it difficult to walk, but attended university and became a journalist with the Leader and an author before his condition progressed to the point where employment was not an option.

He says: “My carers currently come in twice a day, but even now I am alone between 2pm and 7pm and from 11pm to 8.30am.

“The biggest drawback to my condition is it leaves you isolated.

“I might want to go out, but I’m stuck in.

“Without my carers, I end up feeling frustrated because there will be something, some purpose, I need to do but can’t achieve.”

For the moment Nathan is focusing his energies on protesting against the Welsh Government’s decision with his online petition having currently gathered more than 170 signatures.

“We needed to reach 50 signatures to force a debate in the Welsh Assembly,” he adds.

“I am hoping to surpass that number many times to show the strength of feeling about this issue.

“Disabled people throughout Wales – and indeed beyond – deserve the support of an independent body to help regulate their care and support without increasing the dependency on local authorities.

“The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens.”

He continues: “But they didn’t want WILG scrapped and the key point is that our advice was not accepted.​ It should also be remembered that closure of WILG is not inevitable as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF.”

Nathan hopes a whole new system will be a possibility in the future.

“The hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities so this is exactly the time that the Labour Party should be united on such issues against the Tories,” he insists.

“We must question why Welsh Labour are not playing their part in the changing political landscape?

“They will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed.

“However, this idealistic act needs hefty investment and resources to ensure it is a success, with no sign of any of the necessary improvements to our infrastructure that the success of the Act
depends on.

“This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure.​

“Eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing.”

On Wednesday, Nathan joined other protesters in wheelchairs blocking the MPs’ entrance to the House of Commons to demonstrate against disability cuts.

In a letter to MPs delivered by the group, activists said the funding crisis in social care meant they were facing “a very real and detrimental impact on disabled people’s ability to live and take part in the community”.

The group were supported by the shadow chancellor, John McDonnell, who reportedly helped the activists through security.

“I spoke with Mr McDonnell who gave me advice and support about my petition,” says Nathan.

“The event was more about independent living as a whole and the dire situation that we find our social care system in after seven years of Tory cuts.

“It was good to be involved and have our voices heard. It is a sad situation that we have to but no one else is going to for justice if we don’t mobilise ourselves.”

l For more information
on the petition contact nathandavies01@hotmail.com