When people think about long term care they often think of the time older people spend in care homes or receive care services at home. They may also consider learning disability care homes but it is unlikely they will consider the true nature of long term care for people with learning disabilities.
People are born with or acquire learning disabilities early in life and, dependent of the nature of the disability need care and support services from that time. With a learning disability other conditions are more prevalent than in the general population, for example autism and epilepsy, which, in turn defines the type of support needed for an individual. In childhood support is needed for education, health etc which is dependent on individual needs and social circumstances and this is followed by transition services which support the individual in the move from child to adult services.
Although ‘adult services’ is the last stop in terms of the catch-all bureaucratic terminology the reality is individuals need support on their journey through life, and their journey is not really any different from the rest of us.
In our twenties and early thirties we are in our physical prime and we reach the pinnacle of physical achievement, obviously that achievement is dependent on lifestyle etc. but it still, for every one of us, it is where we reach the peak and where we are at our fittest. As a general rule we are more ‘immortal’, life’s goals lay ahead of us and achieving our dreams seems easy, old age and death seem so far away as to be almost non-existent. Many people with learning disabilities are not so different and they need support in achieving the goals and dreams and in maintaining their physical well-being.
As we tip over our mid-thirties and head towards the big 50 we start to deteriorate! Obviously we are all individuals and the rate of change varies greatly between people but generally we are not quite as physically fit as our minds think we are! Some people start having mid-life crises while others simply accept that life is moving on and they must move on with it. We become more settled in our lives and readjust our long term aims and ambitions to a more realistic level.
For people with learning disabilities this can be a crucial time of life, many age related conditions that we would normally expect to have in the latter years of our lives can begin to impact on the lives of those with learning disabilities. There are also many social changes for them too. Those who live with parents face issues of their parents becoming older and the possibility of becoming a carer for those who care for them creating a complex co-dependent relationship.
After this point we do come to a split, older peoples services generally start when people reach the age of 65 but way back in the days of Valuing People the government recommend that for people with learning disabilities older peoples services may need to include those aged 50+. Conditions such as dementia can strike much earlier, particularly for those with Down’s Syndrome and issues of continence can also occur earlier than in the general population. As the population is getting older and people with learning disabilities are living longer there are also social issues that need to be supported, people are more likely to lose parents and siblings will take over as primary carers or significant people in providing care and support.
For most of us, as we get older we make adjustments in our lives, we adapt our lifestyles when our health needs change, we find ways of coping when we lose special people in our lives and we adjust our circumstances to what is best for us. We do our best to cope with the extra stresses that ageing can bring.
In other word we LEARN to live with it.
But was happens when the ability to learn is impaired? How easy is it to cope when you don’t fully understand the changes to your body or to your life? That is why it is so important that older people with learning disabilities have the right support as they age, support that will be different from earlier in life.
There is a tendency to focus on older peoples care because of the numbers involved and what is neglected is the fact that many of those with learning disabilities need care and support services for their entire lives and there is a need to recognise the importance of those services alongside those for older people.
Learning disabilities is not about long term care, it is about services for life.