Lifetime Advocacy Support Schemes
Families working together to employ advocates who support relatives now and when they are no longer around.
A Lifetime Advocacy Support Scheme employs independent advocates who help provide a voice for people with learning disabilities, now and in the future.
This idea could be of interest to parents and relatives of people living in Camphill communities, who are concerned as to what will happen when they are no longer around to look out for their loved ones. Below, we outline two such schemes in the UK, as useful information for those who may be considering starting their own.
1. ‘Reserve Power‘ is an example of an existing Lifetime Advocacy Support Scheme. It was set up as company in 2000 by a group of parents of people with learning disabilities in the UK:
- There are currently 12 families in the scheme who meet monthly. Reserve Power hires three advocates on a self-employed basis. They provide a friendship and advocacy service for the participating learning disabled individuals and their families. They act as a support to the disabled family member when parents are unable to undertake that role for reasons of incapacity or death. They also work to ensure the best possible quality of life by monitoring lifestyle and, whenever a need arises, advocating to the care organisation or to funding authorities. They ensure that all financial legal entitlements and grants are available to the member and, if not, advocate to obtain said grants.
- Each family contributes money every month to fund the service. In some cases, the monthly fee is covered by the benefits of the person with learning disabilities. This pays for around two to three hours of contact time each week. The advocates report back to relatives after each visit, with an update. A few parents have sadly passed away since Reserve Power began, and the system is working. Money was left in their will to continue contributions and/or siblings are getting involved. The advocates are therefore able to continue their visits, to the benefit of the son or daughter with learning disabilities.
2. ‘klasp‘ is an example of a slightly different Lifetime Advocacy Support Scheme model. It was set up as a charity in 2009, and serves a larger group of families:
- There are currently 26 families in the scheme. As a charity, it raises 80% of its funds through two charity shops which the group set up and run themselves. Parents are encouraged to contribute if they are able, but the charity can also cover costs.
- klasp has two full-time advocates. As with Reserve Power, they meet with relatives and the person with learning disabilities to really get to know them and understand their needs. The advocates are involved in many aspects of improving and maintaining quality of life: from being a friend to helping with arranging a package of care. They may assist in arranging a programme of activities to ensure days have meaning.
- The klasp (charity) model works as well as the (company) Reserve Power model, but with less budget, so advocates may visit every two-to-three weeks instead of every week.
Thinking of setting up a Lifetime Advocacy Support Scheme?
If anyone has any questions or wants further advice, Maurice Collins, one of the founders of Reserve Power and klasp, has kindly offered to be of assistance. Maurice has also set up a trust which offers a grant of £1,500 to any group of parents setting up a scheme, to assist in getting started. Please contact us and we’ll pass on his contact details.
Camphill Families and Friends is currently considering the best way to facilitate putting members who have relatives in the same community, in touch with each other via community email groups (if they would like to do this). More information will be available on this, once a plan is in place.
