Is supported living delivering on its promises of choice for people with learning disabilities?

Supported living is the way forward for people with learning disabilities but the world of rents and benefits is a harsh one that may see them forced to live away from their social networks. Molly Garboden reports

By Molly Garboden on November 17, 2011 in Adults, Disability

(Picture of Glynis by Chris Sharp)

Supported living is the way forward for people with learning disabilities but the world of rents and benefits is a harsh one that may see them forced to live away from their social networks. Molly Garboden reports

Living in a residential care home as a young man with learning disabilities, Andy Heppenstall was frustrated. He felt the staff were stifling him and his ability to be more independent. He was unable to do what he wanted when he wanted and he wanted out.

In 2000, 17 years after he entered the residential home, he moved into supported living with a friend, with the help of supported living provider KeyRing. Andy’s independence grew and he now lives independently, with his girlfriend.

Supported living can allow people with learning disabilities to live more fulfilled lives, but there are many questions among families and professionals about the viability and value of these placements.

The current state of benefits presents a particular challenge to service users hoping to move into supported living. Service users using benefits to pay rent can be priced out of their preferred residence if they start to work, because certain benefits are removed when an individual gains employment.

“Benefits can cover the rent, but for a lot of these people, the salary from a job won’t be enough. So when they start to work and have their benefits removed, they have to move as well,” says Alicia Wood, business development lead for Housing Options, an independent information service for people with learning disabilities. “So if they like the area they live in, they’re actually better off not working, which is pretty ridiculous.”

Cuts to local housing allowance, the housing benefit to people renting from private landlords, has reduced choice further.

Now, LHA only meets the rents of properties in the bottom 30% of the local housing market, down from 50%.

“The reduction has made the pool of properties that these people can afford much smaller,” says Karyn Kirkpatrick, chief executive of KeyRing. “This means these people are living in the poorest areas of their towns and that opens up the possibility of people being ghettoised.

“This is a particular problem for people who want to live in supported living in the same area where their residential care home is located. Most residential homes tend to be in the leafy suburbs, with higher rents.”

Kirkpatrick emphasises the importance to people of remaining in a familiar area as they begin to lead more independent lives. Proximity to family, connections to the community, and knowledge of shops and services available can make or break a supported living placement, she says.

“People with a whole range of learning disabilities can be very independent in environments they’re familiar with. They know how to get to their friends’ houses, how to see their family, they’re familiar with the area and are more likely to be able to do things like shop on their own.

“Feeling truly part of a community and supported in a number of ways is the key to so many supported living successes.”

Kirkpatrick says KeyRing’s first step when preparing a supported living placement is to connect the individual with the neighbourhood. Staff teach service users to be neighbourly, help them join community and faith groups and putting them in contact with others in supported living in the area.

Council disputes

Disputes between councils over who should pay for placements pose another challenge to people who wish to remain in a certain area when moving out of residential care.

When a council places someone in residential care out of area, it remains responsible for funding their support. If this person then moves into supported living within the same area as their care home, the responsibility then fall to that area’s authority.

“This can cause a lot of delays and can mean that people don’t get to stay in the areas they want to,” says Steve Drew, director of personalisation at SeeAbility, a support provider for people with visual impairments. “So someone can live in an area for years and years in a residential care home, but as soon as they say they want to transfer into supported living, they’re told they have to move. It limits them a huge amount.”

An issue that can worry prospective tenants and their families is that of services calling themselves “supported living” when they are actually forms of residential care. Called “sham tenancies”, these living situations can be misidentified for several reasons.

“Some providers are just changing the sign on the door,” says Steve Strong, housing and social inclusion project manager at National Development Team for Inclusion. “The reason for that can be that a provider simply doesn’t know the meaning of ‘supported living’ and is just calling their service that because everyone else is.

“Another reason this is happening is that commissioners are less keen to pay for residential care these days, with some councils even saying they no longer commission residential care and will only consider supported living. You need to make sure you know what you’re getting into and that the situation is what’s best for the resident.”

Trudy Burns, a spokesperson for the College of Social Work, says sham tenancies are one reason advocacy is important when someone is moving into supported living.

“You have to be so thorough during this kind of transition,” says Burns, a social worker on a learning disability team. “If the person doesn’t have family members, they absolutely must have an independent mental capacity advocate. In cases where people end up in sham tenancies, it’s usually because they haven’t had adequate advocacy.”

Another concern is that supported living situations are less regulated than care homes, which must register with and be inspected by the Care Quality Commission in England. “If someone moves out of a registered placement into a supported living placement they fall below the inspection radar,” says Burns. “Various parts of their care might not be checked by the CQC anymore and that can be a concern.”

Wood argues, however, that this lack of intense scrutiny is not a problem if supported living placements are set up correctly.

“You keep people safe by keeping them close to people who love and care about them,” she says. “That’s families, friends and getting them involved in the community. You can’t have a better system of checks and balances than a community.”

Successful examples of supported living are also proving cost-effective for commissioners, says Shaun O’Leary, Sutton Council executive head of adults and safeguarding.

O’Leary was responsible for the councils’ programme to move former residents of NHS intitutions, notably Orchard Hill, the country’s last long-stay hospital, into supported living from 2007 onwards.

At that time, he says, the average spend on a person living in Orchard Hill was £2,500 per week. Now, individuals living in supported living in Sutton cost just £1,900 per week and O’Leary’s predicted weekly spend per person for the 2012-13 financial year is £1,700. O’Leary says the drop is down to the personalisation of services, ensuring that learning disabled people are living as independently as possible. He adds that Sutton pays for supported living services on outcomes-based contracts, which has also led to savings and service improvements.

“We didn’t get into this to save money,” he says. “We got into this as a way of ensuring the highest quality of life for people. But we’ve found that giving people more independence can save a lot of money for the council. So if somebody’s taking a group shuttle somewhere, we ask whether they’re capable of taking the public bus. And they love that – they love feeling part of the community in that way.”

Case study: ‘Living in my own flat has been an amazing change’

My name is Glynis and I live in North Cheam in my own home. I am in my 50s now and have lived some of my life at home with my family and most of my adult life in Orchard Hill, one of the last long-stay hospitals.

In 2008 I was given my own flat. It has been an amazing change for me; my life has improved in so many ways.

In the hospital I shared my bungalow with lots of other people, had no privacy, the bathroom and kitchen were kept locked, my meals cooked by other people and delivered on a trolley. I found this distressing.

Once I was given my own home I have overcome many of my own challenges. I now have independence with support from my staff.

My home is so important, it’s lovely and it is mine! I have chosen all my own furniture. I love showing people around. I like to supervise the shopping being put away and where the ironing needs to go. I have discovered I like my home to be clean and tidy and everything put in its place. I enjoy the housework and also cooking.

Moving to my own flat has given me the opportunity to have more of a life and be part of my community. I use my bus pass a lot, which is great, my local shop owners all know me, and I know them, and many of my neighbours around me know me and say hello.

My life now is structured around me and what I want to do. Living in my own home means visits from my family are nicer because they are private.

People who have known me for years comment on how calm I am compared to before.

● Glynis worked with keyworker Caroline McRobert to produce this piece. Her support is provided by Avenues Trust Community Support Services.

What is supported living?

The Reach standards, produced by consultancy Paradigm, are designed to help determine whether a service really is supported living.

The nine standards for service users are:

● I choose who I live with.

● I choose where I live.

● I choose who supports me.

● I choose how I am supported.

● I choose what happens in my own home.

● I have my own home.