Could we be undoing all the progress we’ve made towards independent living for people with a learning disability? Mencap’s new housing report assesses the situation
Less than 50 years ago, people with a learning disability were locked up in institutions, deemed unworthy of living in the same houses or on the same streets as everyone else. Campaigners fought hard to change this, and the last institution in England was closed in 2009. However, if action isn’t taken, we are in danger of moving backwards.
“Going back is our greatest fear,” says Rossanna Trudgian, Mencap’s senior campaigns and policy officer and co-author of a new Mencap report on housing. “We have made so much progress but, with the current cuts and welfare agenda, there’s a real risk of undoing it.”
The ‘Housing for people with a learning disability’ report finds that while independent living is a much stronger reality than it ever was in the 1960s, recent changes in society are creating new barriers to people with a learning disability living where and how they choose. “It is a basic human right for everyone to be able to live independently,” continues Trudgian, “and housing is one of the main keys to that.”
Government commitments and local authority policies have led to improvements in the housing situation – but not enough. According to the report, the majority of people with a learning disability known to social services live with family or friends (38%), in registered care homes (22%) or in supported accommodation (16%). But many people with a learning disability, and their families, are not happy – of those who live with family and friends, nearly three quarters want to be more independent.
Local authorities are struggling to support people with a learning disability to reach their aspirations. Nearly 90% of local authorities have identified an increase in the number of adults with a learning disability requiring housing in the last three years. Almost as many agree there is a shortage of housing for them in their area. Furthermore, the number of people with a learning disability who need housing with support services is also increasing.
Another issue is a lack of planning. Councils are unable to draw up accurate housing plans because they are unclear about the number of people with a learning disability in their area. Most parents who took part in this study don’t have plans for the future housing of their sons or daughters – even those parents over 70. It’s unlikely that families will come to the attention of local authorities until they reach crisis point.
The bottom line, however, is that even if local authorities were aware of who needed housing and there were plans in place, there wouldn’t necessarily be a house available. A shortage of suitable housing means that many authorities are unable to support people with a learning disability to live independently.
There is the option of housing people outside their local area. But the scandal at Winterbourne View demonstrates what can happen when people with a learning disability are sent away far from home.
“Leaving people on long waiting lists for housing can also be dangerous, if they are forced to remain in unsuitable and unsafe environments,” explains Trudgian. “There are cases in which people have suffered serious abuse or even died after sustained abuse in their home – while being on a housing waiting list.”
In the future, the new Welfare Reform Act is likely to be the biggest barrier to people achieving independent living. Changes that the legislation introduces could make it much harder to afford housing and the support necessary to live independently. These include new restrictions on the number of ‘spare’ rooms people have, localised schemes for council tax benefits, the change from Disability Living Allowance to the Personal Independence Payment and the introduction of Universal Credit.
Their cumulative effect could be significant. “We could see a new form of ‘institutionalisation’, as people face fewer choices about where to live,” says Trudgian. “While people are no longer locked away from society, many still do not have the freedom to live the life they want.”
So what can we do? “We need a two-pronged approach – we want the government to pull together existing policy on independent living and housing for people with a learning disability, and create an action plan for improving the housing situation,” says Trudgian. “Secondly, local authorities need to identify current and future housing need. They need to address each barrier, in order to increase the number of people with a learning disability living independently.”
How will I cope?
Frances Mostafa, 52, has a learning disability and mobility problems. She gets both the lower rate care and mobility components of Disability Living Allowance (DLA). She uses it for a supporter to help her with her bills and a taxi to visit her family.
“I find it a struggle with my bills,” says Frances. “Without support, I get into a lot of debt – I could lose the roof over my head!” And without her mobility money, Frances would be at risk of losing touch with friends and family.
Frances is worried that she will not be able to live independently if she lost the money when DLA is replaced with the Personal Independence Payment. “It’s not lots of money but it makes all the difference. How will I cope if I don’t have it?”