Not Long-Term Care But Services for Life

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.

Lets Work to Support Success in Social Care

“Success breeds success” is one of those quotes that we all know but rarely think about what it means yet ‘success’ is big business – just type ‘business success’ into Amazon and see how many thousands of books are available on the subject.

There is some science behind the idea of “success breeds success” for example, Euro 2012: England v Ukraine - The science of home advantage, and while this deals primarily with football the science can apply to many other areas, including social care, especially in learning disability services.

Where the main focus of success is on achieving wealth, power and status the reality is success is any achievement that you make, no matter what level of status it is and success brings about its own rewards. For example, remember back to when you first did something you thought would be impossible, whether it was riding a bike, passing your first exam or baking your first edible cake! Then remember how you felt as you achieved that success, the pride that swelled inside you and the confidence it gave you to undertake that activity again and spur you on to be a little more ambitious next time.

Equally important is what it did to your previous failed attempts at that activity, the pride and feeling of success pushed those failures away from your mind, consigning them to distant memory or erasing them from your mind completely.

In social care services we have many different buzzwords for providing support services and what we want to achieve, we talk about personalisation, independence, outcomes, etc. but, in reality, what we need to talk about is success. We need to support people in becoming successful in independence, personalisation is about achieving success in individual goals and outcomes are only of use if they are successful ones.

I’ve written before about visions, targets and goals in relation to leadership in social care  (http://socialcareinsight.blogspot.co.uk/2012/02/social-care-leadership-visions-targets.html) but the principles also apply to working with individuals to achieve the highest possible level of independence  and these principles are, perhaps, more important in terms of personal support for individuals than anywhere else.

The big vision must always for the individual to lives as independently as possible but to get there people need targets and goals to act as milestones to mark the way to the ultimate goal.  The small ‘wins’ are so important in bolstering confidence and achieving further success, it does not matter how small that success is it helps people understand that success is achievable at any level and spurs them on to achieve the next goal.

The achievement of individual success is also important for people working in learning disability services, if they can support an individual to be successful then they too have achieved success and the same feelings of pride and confidence are imbued in their work.

Success does breed success and we should start talking about achieving success in care services to ensure that helping individuals become successful in their lives is one of the main goals for care providers.

Ministers Need to be Aware of Learning Disability Services

It is Learning Disability week and a great opportunity to raise awareness of the needs of those who have learning disabilities especially as we await the forthcoming White Paper and draft social care bill.

Given the wider debate on social care, particularly around who pays for care it is easy to forget that social care does not solely focus on the elderly and that people with learning disabilities use and need social care services. These services are not exclusively care home services but a wide range of services that have a different focus from elderly care and are vital in helping people live as independently as possible.

The exact number of people with learning disabilities in the UK is not known but what is known is that the numbers of people accessing those services is increasing.

Over the last few years there has been a very small drop in the overall numbers of people accessing council funded services but in those with learning disabilities the number has increased, and quite dramatically with an increase of around 10%. At whilst, relatively speaking, those with learning disabilities are a small percentage of the number of overall numbers of people receiving care services, those services are required over many more years and have an impact on social care provision and funding. Research suggests that about 16% of the total social care budget goes toward learning disability services.

In addition people with learning disabilities are living longer and the rate of longevity is rising faster than that of the general population. Between 2005 and 2010 the numbers of people with learning disabilities over that age of 65 increased by just under 20%. With ageing comes increased need for social care and health services that have to be acknowledged by those on high.

There is, quite rightly, a high focus on dementia and the needs of the elderly but there also needs to be a recognition that learning disability services are different, requiring a care workforce with a different set of skills, knowledge and training that focuses on the different challenges faced by those with learning disabilities.

There needs to be a recognition that ‘Learning Disability’ is a wide ranging catch-all term that encompasses a number of different conditions (and a number of undiagnosed ones) and therefore the number of services needed to meet the needs of the individuals has to be greater than any other aspect of social care.

With the focus on funding elderly care there is a danger that the needs of those with learning disabilities will be passed over by the Government yet the needs of people with learning disabilities are as important as any other group requiring social care services.

Ministers need to be aware of the issues facing learning disability services and ensure that the White Paper and draft Bill reflect those needs.

Raise the Social Value of Social Care

“Why is it you need a degree to get a job in fashion, but when it comes to looking after our most vulnerable members of society any one with no qualifications can get a job as a support worker?” (Guest Blogger, Whose Shoes: http://wp.me/p1enjT-tu )

The above quote highlights one of the intrinsic issues facing social care in today’s society and that is the social value of care services. Whilst the Government will focus on than who actually pays for social care, rather than the actual cost of care services and others focus on the quality of care services provided, yet perhaps where we need to start is changing the view of the wider population to view social care as an essential service, as essential as health given the demographic trends, and a view that social care is there to enhance life rather than be the beginning of the end of life process.

Social Care is not a highly rated career choice. Be honest and ask yourself would you encourage your son or daughter to pursue a career in social care? While many people, when asked, will state that they admire care workers and the work that they do, I suspect that many parents would not be encouraging their children to undertake such a low-paid, low esteem job role. This is, perhaps, reflected in the demographics of social care workers with those aged between 18 & 24 making up around 14% of the workforce and even if we include those up to the age of 34 we still only get to 36% of the workforce. In other words, two-thirds of care workers are aged 35 or above.

This rather suggests, although I can find no research to back it up, that social care work is a career of opportunity, i.e. a matter of what is available when needing a job in later life, rather than a deliberate career choice.

Yet, surely, caring for those in most need in society should be a job that is celebrated and regarded as an important role in our society, one that is rewarded appropriately in accordance with the gravitas associated with the work role.

Another, yet highly connected, issue in terms of valuing social care is that the seeming denial of many people when it comes to their own future and the potential need for care services in the future. Naturally none of us like to think about the possibility of getting old or suffering from some form of dementia and that denial leads to people ignoring the idea of social care until such time that it touches their lives. People do not want to think about being reliant on others to help them through their daily lives and, subsequently, do not think about the type of person they would want to deliver that care.

The same type of denial applies to other types of social care. If it does not directly impact on the life of a person they tend to ignore the issues of those with learning disabilities or mental health issues.

The forthcoming White Paper needs to do more than make technical changes to the current system, it needs to reach out to those not yet affected by the need for social care services and highlight that social care is about everyone’s future not just about those who need services now.

Raising the social value of social care is vitally important and needs to be the priority of Government Policy