In response to your request I hope this sincerely helps in understanding possibly the experiences and thoughts of organisational carers who care for those with learning disability at home.

  Primarily, we are contracted by NHS trusts/ education board to provide care/learning support to those with learning ability at home and at college. We have several long term service users over the last 8-10 years.

  On discussing this with them at a review meeting this morning—Our staff carers confidential experience of this is these service users are ruled by their family members, they get to make few major decisions for themselves, are rarely consulted on these decisions and carers feel that in family's attempt to do their best for a service user by providing a safe and secure environment, they actually inhibit the service users progress and development. Our staff feel the service users families have developed habits of "survival" in trying to ensure the best for their relative but also for their own lifestyle. Participation within the local community is usually down to when a relative has time free to accompany, due to other commitments, or can afford the funds for a carer to accompany—which is very seldom. If you are talking about those service users who are able to attend college, this appears to have become a new form of daycare where it may take someone with a learning disability up to five years to complete a course. During this period carers state the service users do develop a sense of self and motivation to try new things, however they tend to walk straight back into the family environment each day, which may be one of the reasons why progress takes so long.

  We have sadly seen the outcome of reduced funding in this sector over the years, to a point where direct payments are no good for a service user who needs to develop a long term relationship with a care support worker to encourage their development. Many who do work on a "private basis" with such service users, tend to be unwilling to work after teatime, or weekends—times when this support is most needed, to help SU to develop socially and develop relationships. We have also had great difficulty as an agency, in getting appropriately trained individuals during these time periods for the funds on offer.

  Therefore I suggest there is a basic structural problem where the infrastructure and culture are conflicting constantly with each other. Having a right to develop relationships is conditional between 9-5pm, as with good quality care support or learning, which does not suit all families. The 9-5 culture is probably one of the greatest blocks we can see in this.

  As you know, supporting someone with a LD is a vocation, not just a job—we have found there are very few good quality individuals today who have this "vocational stickability". Many are looking for career progress rather than a satisfying job. This I feel is a main issue in setting up long term support services and helping to develop the human rights for those with learning.

  With regards to rights:

  Service users can be described as a "customer" and citizen—like any other. So what rights do we all have—and the response to this is basically—very little—yes we have a right to emergency treatment, an education and to feel socially included, however, we are also responsible for ensuring we go for the treatment, go to the college and make the attempt to socialise—those with learning needs require support to do these things, therefore they are more vulnerable than most. We do not know the answer to these questions except that more support services are needed to develop these skills and it needs to be family orientated rather than person orientated. As you know there are many service users families who do receive benefit support to ensure their sibling is cared for, however some relative can feel this is a payment for them as they receive little other financial support for their own lifestyle. These relatives have also developed a home culture that is habitual and can be hard to break so I feel the issue of advocacy has never been more important.

Wil Coyle, Director

11 April 2007