11 September 2014

Housing for people with learning disabilities

What are the key issues?

Issues faced by older people with learning disabilities are similar to the issues we all face when we age:

Reduced mobility means that sometimes the physical environment needs to adapt or change
If we need higher levels of care, where we currently live may not be suitable to allow for that
We may be faced with greater loneliness and isolation if we can’t get out and about as much.

The only real difference for older people with learning disabilities is that they often start from a different place. Whilst most older people live in their own homes alone or with a spouse or partner and have always lived independently, many people with learning disabilities already live in residential care homes and other group living arrangements and have had a level of dependence on care and support for most of their lives.This means that older people with learning disabilities often have different expectations when they age and do not always have an independent lifestyle that they want to maintain. As more people in the current generation of people with learning disabilities live more independently in the future, this will of course change and they will have similar expectations to the rest of the older population.

Staying in your own home

Many older people want to remain in their own homes, within the communities that they know well. When we say ‘own home’, we mean a property that the person has bought or rented, living alone or with others. There is no reason that people cannot remain in their homes when they get older and less able.

The major issues in remaining in your own home are:

If all of these issues can be dealt with then people with learning disabilities should be able to stay in their own homes in the same way that any older person should. For older people in the general population, funding has always been an issue in staying in their own homes when needing more care. This is partly because older people’s care has lower levels of funding than care for people with learning disabilities and because there has been little exploration in the alternatives that allow older people to stay in their homes in the same way there has been for people with learning disabilities. Local authorities have a duty to assess and meet eligible care needs. They also must take into account what the person and their family want. If this is a 24 hour care package that the council feels is too expensive, then they can offer an alternative that meets the person’s needs.

In this situation, it is important to consider other ways that the person can get the round the clock care that they need:

Employing carers directly through a personal budget or direct payment
Sharing your care with a housemate or neighbour
Having a Homesharer or Support Tenant as part of your support package
Having a live in carer (or 2 or more live in carers that rotate)
Using assistive technology
Physically adapting your home
Living in a network (such as Keyring).

Residential or Nursing care

There are many residential care homes for older people in the UK. They often look very different to residential care for people with learning disabilities because generally, there are more people living in them. It is common to see residential care homes for 20-60 people. Of course they will vary in quality, but even in good quality homes, there can be a culture shock for people with learning disabilities, families and supporters, who have been moving away from large congregate settings for some years. There is no reason that a good quality residential care home can’t support people with learning disabilities well with the right conditions. The residential care model itself restricts the amount of choice you have in your life, but for some people, this restriction is acceptable.

The main issues for people with learning disabilities living in residential or nursing care for the general population are:

A lack of understanding of the specific needs of people with learning disabilities
Low levels of staffing
No choice and control over who you live with
No choice and control over who supports you
Very little personal income.

Extra Care Housing & Assisted Living

Extra Care Housing and Assisted Living is where older people have their own flats within a development of flats or houses especially for older people. There is usually care connected with the housing and this care should be flexible to meet the needs of the older people. This type of housing can be rented, purchased outright or purchased through shared ownership. There are some schemes aimed just at people with learning disabilities and some that are aimed at a mixed population and include people with learning disabilities. As some people with learning disabilities age earlier than peers without learning disabilities, extra care schemes often accept people with learning disabilities from when they are in their fifties. If the support provided on site does not meet the needs of the person, there is no reason that additional support cannot be provided and a bespoke package of care be built around the person.

Extra Care housing can be purchased outright, purchased through shared ownership or rented. Some schemes are developed by housing associations, whilst others are provided by charities and private companies.Older people with learning disabilities can access mortgages to purchase a flat in an extra care scheme and have the mortgage interest payments paid through Support for Mortgage Interest. There are examples where an older family carer and their family member with learning disabilities have both bought flats in the same extra care scheme so that they can continue to support each other

Specialist residential or nursing care

Specialist residential or nursing care means residential or nursing care especially for older people with learning disabilities. Many people with learning disabilities moved from institutions into communities in the 1980s and 1990s, often when they were close to retirement age already. As those people aged, some services were set up to meet their needs as older people and had specialist support for dementia and ageing. Whilst there may be a need for some specialist residential or nursing care homes, they were often developed as a result of learning disability providers not knowing how to cope with changing needs as people grow older. Some residential care homes for people with learning disabilities are learning about dementia and ageing and changing the way they supporting housing schemes specifically for older people with learning disabilities but there is no reason that older people with learning disabilities can’t live in shared supported housing arrangements which are not age specific.

Fewer older people want to go into residential care homes because of the lack of choice and control they face. This is likely to be true of older people with learning disabilities that have lived more independently. The key benefit of shared supported housing over residential care is that the care is provided separately from the housing, this means:

As a tenant, you have rights to remain in your home even if your care needs change
If the care provider is not meeting your needs, the care arrangements can be changed
You are able to claim a full range of welfare benefits
You have some control over who you live with.

Shared Lives and Homesharers

Shared Lives is where a person with a learning disability lives within another family and is treated as a member of that family. Homesharers are people who come and share your home with you and provide some support in return for lodging.

Homesharers are often used to enable older people to stay in their homes when they need some extra help and could do the same for older people with learning disabilities. Shared Lives are less often seen as a solution for people with learning disabilities who have more complex support needs but there are examples and they do work if the person and family are well matched. Supported living network

A supported living network is where several people living alone or sharing, form a network over a geographical area and provide mutual and peer support as well as share support from a volunteer network member. The most well – known model is Keyring Living Support Networks. The Keyring model has usually supported people with mild learning disabilities but can be easily adapted to support people who have higher support needs to connect together and take part in their communities.

Bespoke housing and support solutions

Older people with learning disabilities can set up bespoke housing and support solutions in the same way that anyone with a learning disability can.

The housing options could include:

Buying a home outright or through shared ownership
Using a Trust or money left in a will to purchase a property
Adapting the family home with a self -contained extension so that the person can remain in the family home and receive the care they need
Renting social housing through a council or a housing association
Renting from a charity
Renting from a private landlord Design, Technology and

Adaptation considerations

Whether an older person wants to remain in their own home or get a new home, their changing needs may mean that thought needs to go into the design of the house and whether adaptations and/or assistive technology can help people to live more independently.

Design considerations for older people are likely to include:

Technology, adaptations and aids for those with hearing impairments
Technology, adaptations and aids for those with visual impairments
Technology, adaptations and aids for those with reduced physical mobility
Making the home safer to reduce falls and accidents
Technology and aids to support people with dementia to live more independently
Design that promotes more privacy and independence where people are sharing.

The key in getting design, technology, adaptations and aids right for individuals is understanding whether there is a need for the following and whether any of these needs can be met by a design, aid, adaptation or technology solution:

Maintaining independence
Creating greater independence
Better privacy and dignity
Better safety and security

To read more about housing support for older people with learning disabilities, click HERE

For more advice on housing support for people with learning disabilities, visit the Housing and Support Alliance