Case Studies: Mark's Story

Mark (not his real name) has purchased his own home through Shared Ownership. He has a 2:1 24 hour support package which includes a community support volunteer.
Mark's story illustrates how it is possible to make a person centred housing and support package work for someone with autism and complex needs and how it involves a great deal of commitment, time and creativity - and most importantly, an openness to charting new territory and learning. It also shows how even a person with the most complex needs can live independently.

Setting the Scene

Mark is 33 years old and has lived with his parents, brother and sister all of his life. Mark has autism and severe learning difficulties - he finds it difficult to communicate with people he does not know well and most people have difficulty understanding Mark. Mark is very close to his family and communicates with them using facial expressions, gestures and some sounds - sometimes his family also find it difficult to understand what Mark needs.

Mark has lived in the same house since he was born, going to a local school and now a local day centre and other local respite facilities. Although Mark has difficulties in forming relationships, he has known most of the people he sees on a daily basis for some years, many of whom he went to school with. There are and also a few staff working in the different units who have known Mark for some time and are able to understand his needs.

Mark also has epilepsy and began a few years ago to have such bad seizures, he needed 2 people with him constantly so that he did not harm himself during a seizure. This meant that his family were unable to continue caring for him at home and as a result he was hospitalised in order to monitor his seizures and find an effective treatment. This proved difficult and Mark continued to need such a high level of care, it was decided that he would not be able to return to the family home and alternative accommodation needed to be found.

Getting a Home

Mark had a social worker appointed to help him find accommodation. At this stage, a residential care home was being sought for Mark. This proved difficult as Mark required such a high level of care - the only possibility was a residential care home for people with challenging behaviour 100 miles away from where he currently lives - this was ruled out by his family who felt that it was important that Mark remain close to them. Mark remained in hospital for 18 months before his family sought the help of a housing advisor.

The housing advisor worked with Mark's family and social worker to initially look at an ideal housing and care scenario for him.

The most important things that Mark needed in a home were:

• his own home - Mark had some behaviours that made it difficult for other people to live with him, especially people who also had learning difficulties and had not chosen to live with him
• a detached property - Mark liked to bang on the walls regularly which would become noisy for any attached neighbours
• located near his family home - his family were the only people Mark had in his life who he was truly close to, therefore it was important for him to be able to see them several times a week and maintain regular contacts such as his day service
• he would need a house that was large enough to accommodate 2 carers for 24 hours a day
• he needed a property that allowed him to be closely supervised but have the freedom to be wherever he wanted in privacy and safety
• he needed a garden - one of Mark's favourite pastimes is to wander around the garden

It was recognised that whilst this housing scenario may be ambitious and possibly difficult to achieve, Mark had such specific and complex needs that in order for his move to succeed, all of the above needed to happen.

As Mark had such specific needs and essentially, needed to live alone and have long term security , the two main housing possibilities for him were renting his home from the council or a Housing Association and buying his own home through Shared Ownership.

Firstly, Mark had to apply to the local housing register for a rented property and make applications to the Housing Associations that ran Shared Ownership schemes in the area.

Mark was accepted on to the local housing register but the housing department said that they could not allocate a 3 bedroom home to a single person - Mark also lived in an area where there was a lack of public housing available so the reality was that he may have to wait for some time before a property that was not necessarily suitable for him would become available.

There were similar problems with Shared Ownership - some housing associations only deal with people who are in work or who have enough capital to purchase a share outright.

One local Housing Association was willing to help Mark buy a home through a 'purchase and repair' scheme. This meant that Mark and his family in this case would look for a suitable property on the open market within a pre-agreed limit, the housing association would purchase, repair and adapt the property then sell a share on to Mark. They agreed to accept Mark on to this scheme if the local authority would provide a proportion of the grant for it.

It took several months and a great deal of negotiation to get the Local Authority to provide this grant. They did so on the basis that Mark was made 'statutorily homeless' and therefore they had to accept a responsibility to house him. It made more sense for them to pay for a proportion of a property under the Shared Ownership scheme rather than allocate a rental property that they would need to fully fund.

Mark's family soon found a suitable 3 bedroom detached bungalow very close to where they lived. An architect was employed by the housing association to work with Mark's family to look at how best the house could be adapted to meet his needs. This included having stable doors and hatches in strategic places so that Mark could be supervised from any areas that carers may be but without being 'followed' around the house. The garden was also designed with this in mind and particular care was taken with design and planting to make sure it was safe enough for him to use alone.

The house required extensive renovation so it would take several months of work before it was ready for Mark to purchase and move in.

Another major problem surfaced at this stage, Mark did not have the legal capacity to understand the nature of the house purchase and taking out the mortgage required to purchase the property. After looking at several alternatives, it was decided that the best way around this would be to appoint a receiver through the Court of Protection to deal with these matters on Mark's behalf. What could have potentially been a long winded process was 'fast-tracked' through the system and the mortgage lender, solicitors and Housing Association were happy with the results.

Getting Support

Mark had very high support needs and required total support to eat, have personal care and for getting about generally. Because of his epilepsy and the nature of his seizures, the hospital assessed that Mark needed 2 people around him at all times so that he did not harm himself during a seizure. A major problem with this was that Mark loves being on his own and does not like having company imposed on him and will be around people only on his own terms.

His family and advisor felt that they needed to put a great deal of thought into his environment and how it could be made easier to support Mark effectively and give him the space he needed. An architect helped them think through how the building could be used to the greatest benefit. Doors and windows were moved accordingly and the layout was such that Mark could walk freely around his house and garden without putting himself in any danger.

Social Services had been involved with Mark soon after he was admitted to hospital to help him find alternative accommodation - they knew that he would need a high cost placement from the outset so it was agreed in principle that they would need to spend a lot of money to support Mark. They were not prepared for the excessive cost of the quotes they received from providers to give Mark 2 carers for 24 hours a day. It was agreed that more thought would need to go into Mark's precise care needs in order to see where costs could be reduced so that the package could be more affordable.

It was agreed that whilst it was necessary for Mark to have two support staff with him at all times, it was not necessary for both of those people to be experienced paid staff. One local provider who had provided the most expensive but also the most robust quote and care package outline, were asked to quote again and include a Community Service Volunteer (CSV) in the quote. A CSV is usually a student or professional from another country who wants to gain experience of working with people who have learning difficulties. The CSV would live in and provide 40 hours of direct care per week for a minimum of 6 months, working under the supervision of both CSV, the organisation and the care provider. The cost was reduced significantly and the care package was agreed.

The care provider spent the coming months recruiting a manager and support staff alongside Mark's family. They also worked with CSV to draw up a profile of the ideal person to live in with Mark and provide his support. A suitable volunteer was identified but unfortunately, as he lived in another country, could not meet Mark and his family before committing to move in with Mark. This meant that Mark's family had several telephone interviews with the volunteer so they could be satisfied that it was worth trying out.

This complex support package had to be timed to co-ordinate with his discharge from hospital, and allow several weeks before hand to enable the staff to get to know Mark - this also had to co-incide with the completion of works and purchase of the house. This was not possible in the end and the house remained finished and empty for a few months before Mark could purchase and move in with the volunteer and support providers.

Finance

The financing of Mark's housing and support package is complex and can be broken down into the following areas:

• Capital
  Mark’s home was originally purchased for £155,000 and after adaptation and repair was valued at £172,000. The local authority provided a housing grant of £55,000 and the housing association took a loan out on £31,000 which would be recouped through rental income. Mark purchased 50% of the property which was worth £86,000
• Mortgage
  People who receive Income Support and need to purchase a property 'more suited to the needs of a disabled person' (regs) can have the interest paid on a mortgage (ISMI) up to £100,000. A sympathetic mortgage lender was found and they were happy to give Mark an interest only mortgage for 100% of his purchase price.
  Unfortunately, in Marks case, he had been a hospital inpatient long enough to lose his income support entitlement. Part of the criteria to entitlement of ISMI is to have been in receipt of Income support for 39 weeks. As Mark could not claim Income Support until he was discharged from hospital and he could not be discharged from hospital until he purchased his home, the only way to get around this was to find the money to pay for the interest on the mortgage for 39 weeks.
  Mark's family agreed to do this and the amount needed was approximately £2,000. Mark's mortgage interest was then paid by the DSS after 39 weeks.
• Rent
  Mark pays rent to the housing association on 50% of his property. This is subsidised by the local authority grant and is therefore very low - totalling approximately £170 per month. Mark's rent is fully covered by housing benefit. Mark had his lease altered 18 months after moving in to his home, to include housing related support in his agreement which meant he could claim extra Transitional Housing Benefit to pay for some of his support costs. In April 2003, this extra housing benefit became the Supporting People Grant.
• Support Costs
  Mark's support package cost totals approximately £2,500 per week. This includes £140 per week that is paid for the CSV and costs incurred for staff expenses such as food and outings. This initial high cost was agreed on the basis that his support package be reviewed every 6 months and risk assessments taken to gradually reduce the level of support.
  Of this amount, £450 per week is funded through the Supporting People Grant for housing related support and the remaining £2050 per week is funded by Health and Social Services.
• Setting up costs
  The solicitors costs when purchasing the property were approximately £1500 - Mark's family paid these costs.
  Mark received a Community Care Grant of £1,700 to purchase furnishings. He also received donations of furniture from his family and friends.
  Mark's family also chose to decorate the house as it meant that it allowed the Housing Association to spend more on adaptations.
• Living Costs
  Mark is in receipt of Income Support with the maximum premiums, Council Tax Benefit, Incapacity Benefit and Disability Living Allowance at the high rates. He buys his own food and clothing, pays his gas, electricity and telephone bills and his expenses when he goes out.

Conclusion

Mark's story is an example of both why so few people who have high support needs live independently and why so many more should.

It would be too long winded to convey all of the work, problem solving and commitment that went into helping Mark to get his own place.

The costs for support are high and gambles have been taken in committing to the support package but the alternative would have been marginal savings for Health and Social Services and Mark living where he did not want to live, away from the people he loves and who care about him.

There have been many 'teething' problems with the support package but because Marks family have been so involved with his support, these have been identified and resolved as they happen. Mark and his family became very close to his first 'volunteer' and then he had to leave and another one found.

Mark started sleeping through the night more often and stopped having regular seizures after he moved into his home. He knows where his family live and is able to communicate when he wants to go and visit them to his support staff, and he leads the way. He has stayed in the day service he knows and has kept his GP who has known him since he was a child. Mark knows that it is his home.

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