Developing Services Open learning Caring for Carers Good Practice Site Map
Back Next

Transport & 'getting old'

 

Steven's Story

Steven (42) has learning disabilities and lives with his parents who are both in their eighties. Until 4 years ago, Steven's dad had regularly transported his son to different activities and services but as his health deteriorated all these activities had ceased. Steven now had no contact with other people and places outside his immediate family home. It was not until a routine visit by a worker some years later that it emerged that both Steven and his parents were frustrated by his lack of activity - his parents in particular were worried that Steven had no opportunity to socialise with people his own age and was getting 'old before his time'. It emerged that Steven's carers had no idea that alternative transport could be provided or where to find that information. A programme of new activities was arranged with transport provided. Steven is enjoying his services and his parents are enjoying the break from caring.

There are therefore a range of issues that need to be addressed in terms of developing support for these families.

Practical support for families growing older together includes:

  1. Contact with services
  2. Emergency provision
  3. Support to keep on caring
  4. Health — access services and support
  5. Information

Contact with services

There are two dimensions to this:

Firstly,

  • The big challenge for services is to try and make contact with those families who are currently not in contact with learning disability services.

  • This serves the dual purpose of supporting the carers as they get older but also ensures the person with learning disabilities gets the support they need to make successful transition from parental care when the time is right.

Secondly,

  • Even those families where the person with learning disabilities is currently using and known to services the key word remains proactive outreach.

  • For all the reasons we have outlined below, many older families are reluctant to seek help. Services need to make the running.

  • This has not traditionally happened because we have a care management system where the triggers for assessment are usually sparked off by a crisis. To avert crisis families need contact with services before small problems and difficulties become too great.

  • Services need to invest in these families. In areas where there is a dedicated worker for family carers of people with learning disabilities much has been achieved. These carers workers can both champion the cause of older carers locally, and advocate on behalf of individual families. They become the link between families and services.

The Carers Worker employed a the Shropshire Rural Council, gained the trust of older family carers in the county and was able, not only to develop a supportive network of families, but also make contact with families previously not in touch with services. The carers worker from the Sheffield Mencap Sharing Caring project has also gained the trust of individual families and developed a range of support services that represent a beacon of good practice in the UK. (See the resource map)

Practical ideas that these workers been developed include:

  • Dissemination of information for family carers via - newsletters, videos, audio cassettes
  • Support groups,
  • Establishing lunch clubs,
  • Developing training videos - to develop staff’s carers’ awareness,
  • Lifebooks and video projects to capture people with learning disabilities’ stories, and give carers choice to share experience and knowledge,
  • Preparing family carers to get the best from their carers assessment.

Day services and respite facilities can play a key role in keeping contact with families.

One of the targets of the White Paper is that every person with learning disabilities receiving services will have a named person as a key point of contact by 2002. This person could play a vital role keeping in touch with family carers.

It has also been suggested that keeping in touch with family carers could be an integral part of the annual review process.

The family carer could be invited in, visited or telephoned, for an informal chat to ensure they are getting all the support that they might need to keep on caring.

This should not detract from the planning and reviewing process for the person with learning disabilities but rather as an essential part of a comprehensive person centred plan.

Yearly reviews will not be enough on their own to 'keep in touch' with family carers and have an awareness of any difficulties bubbling away under the surface of family life. Staff need to be able to pick up on changes and respond quickly.

Other ways for day services to of keep in touch with families are;

  • To run support or information groups;
  • Provide newsletters
  • Introduce 'drop in surgeries' so older family carers come for a chat
  • Telephone calls
  • Communication books - so home and day services can keep one another in touch with important things that are happening
  • Arrange meetings that are at times convenient to families

The more contact there is, the less likelihood of a crisis taking everyone by surprise. This is;

  • Better for the person with learning disabilities
  • Better for family carers
  • Better for services
Back Next
Developing Services Open learning Caring for Carers Good Practice Site Map