Funding cuts are having an impact on forums designed to give a voice to people with a learning disability and their families. Adaptation is the key to their survival
Like many government-funded initiatives, the national forums for people with a learning disability and their family carers in England have faced drastic cuts, which are changing the way that the needs of people with a learning disability and their families are being shared with ministers.
The National Forum for People with Learning Disabilities was set up following the 2001 Valuing People white paper. Until March this year, it was made up of 18 regional representatives (two for each region in England) and two co-chairs. The forum fed in to the Valuing People Now team, which passed on its comments to the Department of Health’s National Learning Disability Programme Board, headed up by the care services minister. The aim was to enable people with a learning disability to influence government policy.
The Valuing People Now team supported the forum, but it was cut earlier this year. And in April, funding for the forum was halved.
Amanda Platts, along with Gavin Harding (both pictured), co-chairs the forum: “It’s been a tough few months,” she says. “We knew that funding was likely to be reduced, so we formed a ‘Futures Group’ to look at how the forum could work in the future.”
The group decided that the forum should continue with just nine regional reps and fewer meetings. “We also decided that we should concentrate on advocacy, health and employment.”
Gavin says that the forum members have found the changes tough. “It was really difficult when the Valuing People Now team ended, as there was no one regionally to report back to us. So how could the National Programme Board communicate with people on the ground?”
The National Forum has addressed this problem by working with organisations such as the North West Training and Development Team to ensure a two-way communication between people with a learning disability and decision makers.
The Programme Board now demands proven outcomes from the forum’s projects. “It’s not a bad thing that we have to deliver outcomes,” says Gavin. “We have to justify why public money should be spent on us.”
Gavin says that a positive change is that someone with complex needs has been able to join the smaller group. “I don’t think people with high support needs would be able to cope as well in a big forum.”
Meanwhile, the National Valuing Families Forum (NVFF) is facing changes
too. The forum was set up by the Valuing People Now team’s national family lead, Cally Ward. She chaired it with fellow national family lead Viv Cooper.
The NVFF aims to enable a dialogue between family carers and, through the Programme Board, the care services minister. Organisations like Mencap also contribute.
In April, the NVFF also had its Department of Health funding reduced. “Despite the end of the Valuing People Now team, it was decided to keep the forum going,” says Cally, who remains involved voluntarily. “The government needs a credible way of finding out what’s important to people.”
Funding of £50,000 per year has been agreed, in principle, for the next three years, and The Princess Royal Trust for Carers and Crossroads Care have been asked to host the forum.
Cath Baker, policy and development officer for the two charities, is now coordinating the forum. She says that roughly half of the funding will be used for national work – to pay for administration and to host the NVFF meetings – and the other half for regional involvement. “So it’s tight.”
She explains that the NVFF is adapting by holding fewer meetings, but there’s a lack of regional support. Although there is a small amount of funding for each region, this will not compensate for the expertise of the Valuing People Now regional leads. “It’s those networks of support that have been lost,” says Cath. “Some people are really struggling and feeling disconnected.”
However, those involved in the forum are pragmatic about its survival. Following the Winterbourne View abuse scandal, the forum was asked to take part in the Department of Health’s review of the failings, leading to an increased awareness of the importance of the forum. “Initiatives like the NVFF need to keep going as family carers find it very difficult to get their voices heard,” says Cath.
Find out more about the National Forum for People with Learning Disabilities and the Princess Royal Trust for Carers Professionals