4 – Developing independence with people with learning difficulties.

This short series of posts has deliberately not started with a description of present provision. Given the way in which social care has been treated during the crisis I think there is a real chance of some reform. So if we want that to be radical let’s make sure that it starts from more inclusive values and not existing provision. For those of you steeped in the struggles to improve the current provision this may disappoint, but I am trying to engage with a wider audience that feels we must do much better. If we are to achieve that we will need to argue much more strongly from those values into policy. So, for example, I am sure that any future will involve a much greater use of personalised budgets, but the way in which these are currently developed may not be the right formulation – so I haven’t said “let’s build around that” (even though I think we probably will).

Even though it has been increasing for more than 50 years longer life expectancy seems to have caught  society by surprise. This increase is not just true for the number of very old people but also for the numbers of people with learning difficulties. Back in 2001 a Government White Paper predicted an annual increase of about 1% a year – and cumulatively over the next 20 years that’s an increase of about a quarter.

Increased life expectancy is a positive sign for a society. It means we are doing something right. But sometimes this is presented to us as if it’s a problem. It isn’t. The ‘problems’ that life expectancy poses for society are not inconveniences, they add to the progress and growing diversity of our society. But we do need to think and work with them differently.

Over the last couple of decades changing attitudes have altered the way in which some people think about people with learning difficulties. A few are still a bit afraid but most see them as part of a diverse society and would like to see them play a fuller role in it.

If, as the they suggest, we want to develop the independence of people with learning difficulties, there are three sets of resources that society clearly needs to mobilise and, having done so, needs to get them working together.  All three are important, but will play a different role depending on the severity of the learning difficulty.

The first set are the people with learning difficulties themselves. A society cannot develop independence FOR people. You can do all sorts of things for people – be kind to them, care for them, look after them – all very good things. But you cannot develop a person’s independence without their very active involvement.

I am sure human rights legislation plays a broad set of roles in our society, but in health and social care its loss would have the biggest impact on people with learning difficulties.

The rights they have (human ones) mean that they need to be listened to and talked with – and the law says they cannot be ignored. When we have not been doing this, it is mainly because it’s a bit difficult to find out what people want.

For people with very severe learning difficulties this becomes an important legal judgement that often needs a court to develop. At different ages the nature of consent to important decisions are vital. Sex, marriage, buying goods, going to work, who we live with, and the extent to which NHS doctors are allowed to carry out procedures all need consent. For some people how that consent is given will need a wider legal grounding. But for any real development of independence it’s vital that consent is a right for all.

The second set, alongside the individual as an asset, are their family and friends. Whenever I have been with relatives or friends of people with learning difficulties, I have been struck by the reciprocity of love and affection that informs their lives. Through that love people give so very much, and this forms the basis of the assets for care around people with learning difficulties. However the transformation of love into assets of care is not evenly distributed. Like every other aspect of our society, they are unevenly distributed. Two parents who both have to work at several jobs on zero hour contracts will have less time to turn their love into actions of care for their child than two parents who have regular work with fewer hours.

Just because these assets are not evenly distributed, it would be wrong to fail to recognise that they are the bedrock of any overall care package. It’s true that the two parents with several zero hour contract jobs will need more public assets alongside their own, but given their working lives, it is even more crucial that those public assets form themselves around existing personal assets. In fact, if parents are working several jobs with zero hour contracts, it is imperative that public care is even more flexible. If they don’t know on a daily basis when they will be at work, then the care given to their child has to be much more flexible to fit into our lives.

My overall point is that since the care of relatives and friends is a major asset then we must build around that – and not around the timings and availability of public aid.

Whenever I have been involved with voluntary organisations that make up a locality, I have been struck by the number of charities that are named for a daughter or son with learning difficulties. Relatives have recognised that they need to mobilise beyond their own personal resources into some organisational form – often a charity. Local voluntary sector organisations give relatives a lot of support in forming and developing these organisations.

These organisations frequently help grow resources by fund raising, but they need to do more than just raise money.  There needs to be more help for relatives and friends to develop and run the care that they need around the lives that they lead. Some of this happens now, but it needs to become the norm.

Third in our list are finances from the public purse and the professional care provided within very different budgets and departments. Most of the large state departments have a role here – and this is part of the problem. English public services have a very bad track record of integrating to meet the needs of service users. Yet here they really need to. I don’t think those services will manage that until they are really forced to. And I think the only power that will force them understand their current failure is the service user, their relatives and friends, and their organisation.

That’s why I have organised this post in the way I have. If we had started at the end of this story – with the need to bring current programmes together I fear that we would never get beyond Whitehall and Town Hall. So let’s start a new vision with a different asset base – and develop from there.