Cathy lives in the South East and has a daughter in her thirties in supported living. This is her experience.
Why did you start thinking about supported living?
We started thinking about supported living because we felt that our daughter, like us and her siblings, should move out of the family home around the age of 25. I knew of people in their 70s with sons and daughters in their forties living at home and it was not a satisfactory arrangement. Our daughter also wanted to be independent herself.
How did you plan the move?
We began thinking about it when our daughter went to residential college and started seriously thinking about it when she graduated 3 years later. We read what we could about supported living, and we visited some local schemes.
The move itself took place in two stages. The first lasted 9 months and involved a flat share with another person with Down’s syndrome with overnight staff and day support from another agency. There were various problems, but these gave us experience and knowledge about how to and how not to set up the next move.
What problems did you face? How did you solve them?
In the first placement the problems included lack of communication and dissatisfaction with some day to day aspects of our daughter’s care and support. The second scheme, which was shared ownership, began with problems finding a suitable flat. This process took a few months. Once a suitable flat was found the main problems were negotiating how much the local authority would pay for support. Recruitment of care staff was made easy because the local authority contracted an agency which did payroll and recruitment, etc.
What would have made the experience easier?
Less paperwork and more guidance around the maze of housing benefit. As I said, we were very lucky that a Housing Association had offered several flats to people with learning disabilities in the local authority. It was both enjoyable and frustrating house hunting.
We were lucky to have a very supportive care manager at the time [of planning the move]. There are a lot of things that would have made the first placement better,
if we had been listened to and if the procedures had not been quite so bureaucratic.
How did you finance supported living?
We were able to pay for the quarter share of the flat, but if we had not been, we could have obtained a mortgage. The three quarters of rent our daughter pays to the Housing Association is paid for by housing benefit, the staff are paid through direct payments and her day to day living costs come from benefits such as DLA and ESA.
What are things like now?
We still have disagreements with the local authority about underfunding and we also get frustrated by the fact that her staff do not do all the things we would do! But this is compensated for by the fact that we all find it a good situation, and our daughter is well cared for.
What is your advice to families thinking about supported living?
Be confident and assertive with professionals because you know your son or daughter best. It should be genuine person-centred planning. You should write down a list of your relative’s likes and dislikes, behaviour, routines, etc., to inform the planning and have common sense and compassion as the essential foundation for any scheme.
Watch our Supported Living films to hear more from parents, people with Down’s syndrome and the support staff who work with them. Here’s Ruth’s story: