The Disabilities Trust

An Overview

I first came across The Disabilities Trust through the tireless fund raiser Vicky, at www.bfkbooks. Vicky reviewed 'Children and Teenagers with Aspergers' and asked me to write an article on how the Autism Act 2009 might be beneficial to the young people featured in our book. I spoke to Vicky at length and she told me about The Trust and the wonderful work they do for adults on the spectrum. I soon realized that they potentially had a lot to offer for many of our children as they grow up, so I decided to investigate further.

The Disabilities Trust provides homes, care, support, rehabilitation and education for people with a range of disabilities, including autism. This article will focus exclusively on the work they do with people who have Aspergers.

The trust was first set up by Norman Thody in 1979. Norman has a disabled son and, in common with many parents in his situation, he began to fret about what would happen to his son when he was no longer able to care for him. The provision for adults with disabilities was (and frequently still is) sub-standard. Driven by the need to provide for his son, he managed to gather the support of other parents and adults with disabilities to start the trust. Before long they were lucky enough to secure a substantial donation which enabled them to purchase their first home.

The trust recognizes that no two people on the spectrum are the same and take great care to find out what each person requires and to subsequently meet those needs. They have small community based housing and purpose built residential centres.

All About Hollyrood

I spoke with Sue Stopa who is the manager of Hollyrood, which is in Linfield, West Sussex. It was almost immediately evident that she understands autism in all its forms and is very aware that everyone has their own needs. The staff take great pains to guard against making blanket rules for all.

The trust is acutely aware of the price that each family pays when one of its members is disabled. They know only too well that many parents have a lifetime struggle to ensure that their grown-up child's needs are adequately met. Sue stressed that Hollyrood works well because the families have a continuous input and work collaboratively with the staff. The staff foster relationships with the person with Autism but also with their entire family. Sue mentioned that many of the families, have had some pretty dire experiences, as a result, they can often take a long time to build up trust. For many, Hollyrood is their last hope, having failed to find other suitable provision elsewhere. As each family and the staff have to continuously cope with a huge learning curve but together problems can be discussed and resolved. The best outcomes are often in cases where there is give and take on both sides and a willingness to understand that no organisation can be perfect 100% of the time.

Hollyrood is a rural complex, set in about 3 1/2 acres of land and has four refurbished houses, 1 flat, a day centre, a placement for clinicians in the Psychology department and a few tiny offices. There are four residents in each house and each house takes on its own identity according to the mix of residents along with their support workers. Hollyrood offers a range of on-site facilities such as a sensory room, library, gym, woodwork room, greenhouse etc. There are carers available at all times and those who need one-on-one care receive it along with appropriate psychological support.

There are also community based registered homes to cater for those who are able to cope with, and benefit from, being in a community setting near shops, public transport etc. Those with reasonable social skills are able to develop their potential further with as much support as is needed. Those who need more protection and find community based living overwhelming, are offered care that is proportionate to their needs. No one is forced to be something which they are not.

When there is a vacancy, an assessment of the person is made by talking to the individual and their family, making sure that they want to live there. If they are entering an established house then they have to be compatible with the other members of the house. The trust also has to ensure that the environment is appropriate for their needs.

All residents have their own spacious bedroom and many of the newer houses have en-suite bathrooms. Each room is decorated to suit the individual. There is also ample living space and in many there are gardens which can be used for activities such as growing vegetables.

As there is also a need for suitable accommodation for the more able members on the spectrum the trust is expanding into the rental market. They will continue to focus on small houses for 2-3 people to share with the choice of using the Trust's expertise and care services or by sourcing elsewhere.

The whole philosophy is based on meeting each individual's needs and respecting their choices where possible. Each person can choose what to eat and whether to eat alone or in groups. There is no enforced bedtime or getting up routines although many of the residents choose to follow a routine.

Funding

The trust is a charity and obtains funding from donations, fund-raising, bequests etc but running quality homes takes a lot of money - up to £3000 a week for the more complex cases and the bulk of the money therefore comes from local authorities.

The financing of each resident is quite a complex matter. In theory funding is often the responsibility of the local authority where the person was born. Generally the first port of call would be the Social Services where the person currently resides. They assess the support needs of the person. The birth local authority and the residing local authority may argue out who has to pay. The individual may also obtain funding through Direct Payments and once again a social worker will be needed to make a care assessment etc. Funding may also have to be obtained from other sources - such as housing benefit. It is all very complicated and and any funds secured will usually have a time limit before it is necessary to re-apply and fight again. Basically nothing is secure for life anymore, all funding is tenuous and it is important that parents and residents all understand and are prepared for this.

The above information is based on an interview only and from the experience of one service user's family.

Anna van der Post