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I Have a Dream

Imagine a place that comprises a small collection of exquisitely designed houses, where no matter what the weather they bask in their own glory, sitting like little castles in a landscape that is sympathetic, each with a front door that invites the dweller home. And when the door opens we see that these homes are light-filled, happy places, bursting with life, love and laughter. The residents are unique. They do not live alone. There are a few of them in each home, matched equally in number by those who care for them. The hub in this little community is another beautiful building, a day centre also light - filled, oozing with tangible sensory furnishings and designs. A fountain perhaps, an indoor garden, a soft play area, a lovely dining room and kitchen filled with the smell of home cooking.   And every day this centre and all it has to offer invites the residents back to participate in learning, play, life skills or team sports. It offers a structured time table with an option to retire to other things as required. Outside they can explore the grounds, back to nature in carefully maintained gardens, there is a play-ground, a climbing frame, goal posts, a duck pond, a walled garden with vegetables, restful quiet seating areas with a view and  maybe even a hen or two laying eggs for collection.

The lifestyle I am describing is not for children but for young adults and they are all profoundly learning disabled. You see, through no fault of their own, they can give nothing back except joy to the few who take time to know them well. But we have a duty of care to look after them and ensure that they are living a happy and fulfilled life. What I am describing is what I believe it will take to achieve this and there is little or nothing at the moment that would match my dream.

I am not proposing that our profoundly learning disabled young people live in luxurious  isolation. It is feasible that they will integrate in to the community as appropriate, visiting their families at home for example, shopping at the local supermarket or participating in activities that cannot be provided within their residential centre like Riding for the Disabled, Disability Sports Centres, Skiing for the Disabled, perhaps even swimming - although a swimming pool should always be a part of home for a profoundly learning disabled person, so should perhaps be included in my dream model. You see, young people who are profoundly learning disabled cannot relate to the normal world that we live in. Indeed, they must be protected from it and now that we are able to keep them in good health and their prospect of a long life has increased we must recognise that it is not necessarily fair or right to expect families to care for their grown up learning disabled child at home for the rest of their days. The love that a family gives is never in question but many a young adult with learning disabilities living at home will fade in to the background, living less than fulfilled lives and perhaps even feeling the burden they impose on their own family as everyone gets older and struggles to cope. Then there is the uncertainty of the inevitable end of that arrangement and what will happen next.

For the most part, our learning disabled young people are not sick or dying. They are just different. They have medical needs, of that there is no doubt but why do we care for them as though they are waiting for their end to come. Whilst the rest of our children leave school and embark on a life-journey that is progressive and fulfilling with a beginning a middle and an end, our ambitions for the young learning disabled by comparison are limited. This seems wrong to me. The learning disabled are developmentally delayed and the key word here is delayed, so why do we make them conform to the time lines of cognitively normal children, forcing them to leave school between age16-18. Our profoundly learning disabled children are thriving in a structured learning environment. It seems to me that for them this should continue well in to adulthood, for at least as long as they evidence a capacity to learn, albeit at their own slower pace.

Our son Muir, profoundly learning disabled as a consequence of his severe epilepsy, Dravet Syndrome, is nearly 17 years old and we expect him to remain in school where he is supported on a residential basis four nights each week, until he is 19 1/2 years old. Muir was a late school starter because of his epilepsy but he should still benefit from all the years that a conventional school education entitles him to. The question is what next? We will not allow him to return home full-time because that for Muir would be a regressive arrangement. He is accustomed to socialising with a peer group and relies heavily on a busy time table for stimulus. He thrives in a routine that is consistent and familiar. He loves school and learning and also the opportunity to participate in all sorts of physical and sporting activities. In essence what Muir requires next is more of what he has already. He needs residential living for the long term, structured much like school.

None of this is rocket science. Indeed, I described my dream model to the Cabinet Minister for Care and Support, Norman Lamb recently and he was inspired. So what will it take to make my dream a reality for young adults like Muir - or at least something close to my dream? Perhaps it could become a template that we can work with across the UK, developed by successful existing residential educational establishments, supported by Governments and also willing philanthropists, with architectures contributing to the design and volunteers helping to make the dream a reality, each centre unique but each one offering its own opportunity to live a life of fulfilment for our profoundly learning disabled young adults. It would be to give them their happily ever after - because they are entitled to that just like the rest of us but unlike the rest of us, they cannot achieve this without our help.

Time is not in our side where Muir, or other young people like him are concerned, so the dream must become a reality sooner than we think.

Ann

 

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