Advocacy for families of people with learning disabilities

Moving On Advocacy

Suffolk Family Carers, a Network Partner of Carers Trust

 

The project was originally aimed at carers in Suffolk who had a relative with a learning disability moving from a long-stay NHS hospital into the community as part of Suffolk’s re-provision of services. All of these moves have now taken place, and the project now benefits carers who have a relative with a learning disability in the process of moving out of residential care in Suffolk or residential schemes commissioned by Suffolk County Council outside the county.

 

Moving On offers advocacy to carers and families of people with learning disabilities moving out of long-term residential care and into a home of their own. The Advocate works with families to enable their voices can be heard in the decision-making process about the new living arrangements for the person they care for.

 

March 2009

 

Valuing People Now, the government’s three-year strategy for people with learning disabilities (published in 2009), led to a large number of people being moved out of long-stay NHS hospitals and into their own homes. Many families were anxious about these changes, and Suffolk County Council identified a need to effectively involve families in the process of decision making about their loved one’s move. The Learning Disability Partnership Board gave Suffolk Family Carers a grant to provide advocacy on the carers’ behalf throughout the process of transition to the new living arrangements for the person with learning disabilities.

 

Initially, the project focused on families affected by the NHS moves (now completed), but going forward, the aim is to support families of people with learning disabilities living in residential care who are moving into supported living, and some who are in family homes and want or need to move on.

 

The aims of the project are that carers of people with learning disabilities moving on from long-stay residential hospitals or residential care (or moving on from the family home) will:

 

 

The original funding for a four-day-a-week post came from the Learning Disability Development Fund (LDDF). Current funding comes from the local authority, as part of the Accelerated Moving On Strategy (AMOS) to improve choice and independence for people with learning disabilities by increasing the options and local availability of supported housing, and reducing the Council’s reliance upon purchased residential care services and out of county specialist placements. The funding covers a three-days-a-week post and continues on a year-on-year basis.

 

“Knowing that we have the support of the Advocate has really helped. Her advice and experience has been invaluable.” (Carer)

 

“The advocate helps to explain everything in layman’s terms. Social Workers, doctors, mental health professionals and care providers all talk a different language.” (Carer)

 

There has been a lot of positive feedback about the project, with families saying that they feel informed about and involved in decisions about the future living arrangements of the people they care for and have found it useful to be able to get answers to their questions from one source rather than having to go through the bewildering array of professionals. Many families who initially felt very negative about the changes in living arrangements have been given the opportunity to participate in the decision-making process and have reported that relatives with learning disabilities who have moved out of long-stay hospitals now have more rights and a better quality of care as a result of the move into the community.

 

The local authority has also been very happy with the service, describing the Advocate’s work as “very significant ... [bringing] families into the process that were otherwise reluctant” and stating that the project has helped to “resolve differences to the benefit of families and service users”.

 

In the first two years of the project, the Advocate worked with around 25 families with a relative moving out of hospital, with the aim of reaching around 60 families over the second two years.

 

Through the work of Moving On, the Advocate has identified several older carers and has supported them in planning for the future, as well as families of a person with learning disabilities who is ready to move out of the family home. In some cases, the Advocate has been able to help match the person with learning disabilities with an appropriate supported living scheme with a current vacancy, which has benefitted the person with learning disabilities and their family, while also helping Suffolk County Council to make better use of its resources.

 

The project has also helped to strengthen the positive relationship with the social work team.