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What happens to one's son or daughter, who has a disability, when we are no longer around?

It really hit my wife and myself when we both reached retirement age. "Who will be concerned about the welfare of our daughter, Kim, who is severely handicapped, when we are no longer around?" Yes, she had a younger brother, reliable, caring, but with his own family to bring up, and all that goes with that. And what right would we have to expect him to take on such a major responsibility?
 

So that was the question we needed to address as we reached our late sixties and early seventies. Both of us had been involved in the Learning Disability world for many years. Back in the late 60's we started a self-help group of families, all with a member who had a disability. We started this together with another couple who had two partially sighted children. That organisation became a charity called 'KITH & KIDS'.

The experience of families working together, of becoming a close network, made us realise that together we had power. We could influence Government policy, understand the legal position, swap ideas on how to get the best provision for our sons and daughters, and solve problems with our own effort and energy. Having been through that experience, we linked with another family with a son with Asperger's, who had begun to formulate a concept which resolved the problem that was taking up most of our thoughts around the future of our daughter, Kim - the subject of which forms the essence of this article.

So, what was this simple, but now proven idea? We knew we needed to have someone with knowledge of Kim, who by the way, lives in a village in Berkshire, Ravenswood, with her care paid for by our local authority. That person needed an understanding of the staff who care for those with a disability, skill in getting to grips with any medical or social needs they might have, in fact, everything that we, as parents were doing. That someone, who we call an 'advocate/friend' also needed knowledge of disability, how funding for such disability is carried out, the framework of all relevant laws, rights, in fact all that constituted the circumstances which a person with a disability might face. 

The idea crystallised with 10 families pulling together, irrespective of their children's disability. They were all equally concerned about the future of their offspring, and agreed to put in an amount of money on a monthly basis, so that we could jointly fund our own 'advocate(s).' The aim was for advocate(s) to visit, hopefully once a week in whatever facility our family member might live. They would act on their and our behalf, and above all be a knowledgeable resource for the siblings of our disabled children when we are no longer around. So ' RESERVE POWER' was born.

'RESERVE POWER' has now been in operation for the last 16 years. All of us involved agree that this is the best thing we could have ever done for our children. It has given us peace and mind in the knowledge that there are experienced people who will act in the best interests of our disabled family members, ensuring the best quality of life possible for them, whilst alleviating the burden of some of the responsibility of their siblings for their brother or sister.
That experience, that success, is explained in our recent web site which only came alive recently.

We share the way it works, its finance and accountability, and examine how the 'advocate' improves the lives of our sons and daughters. We will explain how any stresses between advocates and families are resolved; there are sometimes problems, but the last 16 years have shown that it works well, and it has a massive positive impact. If you want to understand more how it works go into that site www.reservepower.org.

However, I and others In Reserve Power was concerned that this project could only be used by those who could afford to put money into a pot to finance the advocate. We decided to take the same concept to create within 'KITH & KIDS' a similar project that would allow people to put in whatever they could afford, and to fundraise for the shortfall so as to successfully run the project. 'KITH & KIDS' have been running the idea for the last 6 years, a similar version of RESERVE POWER entitled KLASP, which is different in structure and finance and accountability, but nonetheless highly effective.

I would suggest that those interested should go onto the 'KITH & KIDS' website www.kithandkids.org.uk and see what a self-help families group can achieve, from holiday projects to family support and advice. You can also see an outline of the KLASP project itself.

Contact details for more information: Maurice Collins 07796991140 mauricecollins@msn.com, we would like other families to look at the successful models we have developed, and possibly develop other groups that would fit their particular circumstance that have given us a more peaceful mind, as we age
or Sandra and Ralph Rosen: email: rosen634@hotmail.co.uk.

Kith and KidsOne of our advocate befrienders, Faridah, with one of our members.

Written by: Kith and Kids