Case Studies: Christopher's Story

"My name is Christopher, I live in my own place and have my own tenancy. I moved in five years ago. I live on my own with support from BUILD. My place is a two-up, two-down end terraced Victorian house."

Setting the Scene

Christopher is 40 and the eldest of our three children, having two younger sisters. He also has Down's syndrome, so attended special school until he was 16. He then spent two years at Pengwem Hall, a residential college run by Royal Mencap. Until then he had always lived with us, his parents, in the family home. His time at Pengwern Hall gave him the chance to experience periods away from his family, to learn some new skills and develop some independence. He then returned to live in the family home. A day centre did not feel right for Christopher so, building on his interests, we developed a more individualised pattern of daytime activity. He did various courses at college, had some work experience which led to paid and unpaid work at various times and was involved for a time in social and advocacy activities. This worked well for him and for us because he was able to get about on his own safely, either on foot, or on public transport, as long as it was to places he knew well. When Christopher was in his 20s, we had no plans for him to live anywhere else.
In the early 1990s the concept of supported living was emerging: family-led groups were being established in the North West, supported by the Federation of Local Supported Living Groups. These groups appealed to parents because they encouraged the notion of independence and leaving home when the time is right; they also involved parents directly in the planning and delivery of support services.
In 1993, a group of parents and professionals came together in Bury to form BUILD - Bury Independent Living Development, a small family-led supported living organisation. In 1994 this became a registered charity, a company limited by guarantee and employed its first manager.
By this time we had thought much more about Christopher living in a home of his own. Our dream was that Christopher would move to a house we had chosen together, not too far away from us; that he would have some regular paid support, with the family involved too, but with the time and space to adjust to independent living before we became too old.
We began talking to Christopher, BUILD, family and friends about how we could turn our dream into reality and what support Christopher would need to do that. This gradually crystallised into a plan which involved some paid support from BUILD, sharing a house with a non-disabled housemate who would live rent free in exchange for some low-level, more informal support, with the family continuing in the background.

Housing

We started to put the plan into action, with little idea of how to do it, what it would involve or, indeed, where to start. As we were in a position to contribute some capital towards purchasing a house, a Shared Ownership scheme seemed ideal. We took some professional advice and found a Housing Association, which was willing to enter into such a scheme with us, with the arrangement of a family Discretionary Trust. After looking at various houses in our local area, we found one, in July 1998, which felt right to all of us.
It was a 2 up 2 down end terraced house, recently refurbished, with both bedrooms en-suite and with a comprehensive burglar and panic alarm system. It was about a mile from our home, close to the tram and bus station, and round the comer from our allotment. It seemed ideal, but we had to go ahead with the purchase before anything else was certain. At that stage Christopher had not had a Community Care Assessment, so no Social Services' funding for support was assured, there was no guarantee of entitlement to increased benefits and we had no written agreement with the Housing Association. Nevertheless we pressed on and Christopher moved in April 1999 although not all of these matters had been resolved.

Legal and Financial Framework

The Housing Association entered into a Shared Ownership of the property by means of a Legal Charge. The share of the equity was agreed as the HA 70% and the family trust 30%. The trust also met the cost of all of the necessary building works, VAT and professional fees.
Christopher's income is made up of:

• Housing Benefit
• Income Support
• Disabled Living Allowance - middle rate for personal care
• Disabled Living Allowance - lower rate for mobility
• Severe disability allowance

He is exempt from Council Tax as he has a learning disability. He makes a contribution to the Local Authority for domiciliary care charges.

Tenancy Agreement

Christopher has an assured tenancy agreement with the HA. The initial agreement, which he signed before moving in, was replaced by a supported tenancy agreement, at a later date. The HA entered into an agreement with BUILD as support provider at this time.
Christopher's Housing Benefit pays the base rent for the property and is paid direct to the HA. This rent includes elements for management, maintenance, and major repairs, all of which are undertaken by the HA.

Support Package

Bury Social Services initially agreed to fund BUILD to provide Christopher with 15 hours support per week, from their community care budget. It was based on Christopher having a non-disabled housemate living with him, but in the end, this did not happen. It proved difficult to recruit such a person before he moved in and he went on to prove that
he was able to live in the property on his own. He does not currently have sleep-ins, although this could be reviewed if his needs increased.
There have been changes in legislation since 1999, with the introduction of Supporting People. Most of the support Christopher receives is now better described as general counselling and support, funded from the Supporting People budget, but the contracts between BUILD and the Local Authority have yet to be finalised. Following a recent community care assessment review his support hours have been increased to 20 hours per week.

Quality Standards

Recent legislation has also required that BUILD register as a domiciliary care provider with the Commission for Social Care Inspection. This also means that we have to ensure that all BUILD staff are appropriately qualified. As well as formal qualifications BUILD places a high emphasis on a person-centred approach and delivering high quality support. All staff are committed to making supported living a reality.

A Mother's Perspective

All this might sounds fairly straightforward but there were times of acute anxiety. It was impossible to synchronise events in the early stages: we had to commit ourselves to expensive actions without the knowledge that funding support would be available. Once the house was ready Christopher had to move in although no support staff were in post. We had to learn how to strike a balance between letting go and keeping involved both with Christopher and with BUILD. All this proved to be achievable, but only with the help of BUILD, friends and family and, most importantly, the unfailing optimism of Christopher himself.
He now has his own home, in the place where he wants to live; he chooses and plans his own activities; he has a strong say in who provides his support; he chooses how and when he wants to be supported by taking part in his rota planning and he chooses what happens in his own home.

Last Words From Christopher

"A Total Fitness centre has just opened near my house. I go to swim there on my own on most days as well as doing other things. On two days I do voluntary work at Oxfam in Bury and on Saturday mornings I am Assistant Trading Manager of the Whitefield Horticultural Society. I am now the secretary of Bury People First.
I like travelling and have been with my support workers to Italy and France and last year I went to America with the Bury Twinning Association."

Housing Options, Stanelaw House, Sutton Lane, Sutton, Witney, Oxfordshire, OX29 5RY, United Kingdom
Telephone: +44 (0)845 4561497 E-mail: enquiries@housingoptions.org.uk