For Families and Carers : Where to live

Woman with Down's syndroem standing in her own home

Where to live

Whether you have a teenager, a young adult son/daughter or an older family member with Down’s syndrome, you may be thinking and talking about where the person for whom you care might live in the future. For teenagers transition is generally a good place to start planning your options, though it can help to think about the options before that. At whatever stage of life a person is at, thinking ahead may seem daunting. A lot of planning and discussion between the person for whom you care, your family and your local authority need to take place before a move happens.

It is really important to set the process in motion when it feels right for the person with Down’s syndrome and you as a family.

The first step towards planning for the future is usually sending a written request to your local authority for an assessment of need for the person for whom you care. We have produced information about needs assessments which is available here.

Many people with Down’s syndrome will aspire to leave the family home to live in their communities with support. Small but growing numbers of people with Down’s syndrome in their 20s, 30s and 40s are doing just that and living in a variety of settings including supported living, residential care and shared lives placements. Regardless of the type of setting, the person should be provided with the appropriate level of support to meet their needs.

Some people decide they prefer to carry on living with their family. In some circumstances, plans can be made with your local authority for the person for whom you care to be supported in the family home when you are no longer around.

There are quite a number of possibilities around living arrangements for people with learning disabilities.

There is a lot of information about what may be possible at the website of Learning Disability England.

The Foundation for People with Learning Disabilities has a Thinking Ahead guide which contains a table with information about accessing pre-existing housing and support in your locality and also information about how to set up provision from scratch.

The focus of the DSA resources on this page is supported living. These resources have been produced in response to what families have told us they need information about. It is important to bear in mind that, whilst supported living comes in many forms and is planned according to the needs of individuals, it is not necessarily right for everyone.

What is supported living?

Supported living is living in your own home with support. Families sometimes ask us if they can go and look at a property where someone is living with support. This is very rarely possible so we have produced a video series, following the daily lives of five adults who live in their own homes to give you some examples of what life might be like. .

The support provided by the local authority will vary according to individual need. This may range from relatively low level with support workers popping in at key times during the day or it might mean a support worker on the premises at all times of the day and night.

Supported Living Resources

The following publications can be downloaded. Click on the image.

sls-supported-living-an-introduction-for-parents-and-carers-cover    sls-our-stories-stories-from-people-with-downs-syndrome-cover

Making Supported Living Work cover-wb

Benefits in supported living

Easy read resources – Living the way you want

These booklets are useful tools to help families and their family member with Down’s syndrome think about what they might like to happen in the future. Any support services paid for by the local authority will be based on an assessment of need for the person with Down’s syndrome. This means that whilst the local authority must consider what the assessed person would like, they are within their rights to meet the person’s needs in other cost effective ways.

See: Easy read resources – Living the way you want

Making decisions/mental capacity

Leaving the family home means making decisions. Your son or daughter may need support to make these decisions.

Read our information about mental capacity and making choices:

Mental Capacity factsheet

Making everyday choices post 16  

You can also call the DSA helpline if you have any questions about living arrangements on 0333 1212 300.

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