Changing Times, Changing Homes

The world of Learning Disability care is changing. (Again.) There is a brave new world emerging with people with learning disabilities at the centre. Individual dwellings are springing up, with an end to group homes and their individuality-unfriendly nature.

So far, so good. On idealistic terms, and I’d like to think I’ve still a young enough heart to feel idealistic from time to time, it makes a degree of sense. In addition, it ticks some ethical boxes: treating people as individuals, providing truly person centred care and empowering people with learning disabilities to live life as others would – full of choice, freedom and personal identity.

However, it is now that my idealistic heart develops somewhat of an arrhythmia, and starts beating, as it were, itself up. You see on one hand I love to celebrate the idea of people with disabilities being give true choice, freedom and personal identity, unfortunately on the other I dispute, to the point of despair, that the future will actually provide them that.

Some history for you (quite unnecessary really, but it is somewhat relevant.) In the late 80’s, early 90’s, when many of the large, oppressive institutions that called themselves home to large numbers of people with learning disabilities were closed down, the people were ‘placed’ in community-based ‘group homes’. This was a golden age: we revelled in our Normalisation, our Social Role Valorisation and our fighting the good fight.

We were told by those opposed to it (and believe me there are some now who would welcome a return the good old days) that these homes were never going to be sustainable, that they were a luxury and that they were never going to achieve the aims for which they were designed.

“Bah!” we cried, “You Luddite nayseyers, you evil imprisoners of people, this is a brave new age of providing people with homes, rather than hospitalising them. People will flourish, their lives will be transformed”

And, by and large, we were right. Many people did flourish and their lives were transformed. People with disabilities had a greater presence in their local communities, they had greater opportunities, they developed more skills and they had happy lives.

So why mention this golden age of care? Well, because its all happening again – staff of my generation are being told we are the Luddites and nayseyers. Are we?

As I’ve mentioned I find it hard to argue with some of the ideology behind the thinking, and I’d also like to think I’m open minded enough to welcome change with open, although appropriately critical, arms. So why do I despair? Why am I not convinced by this progressive step, why do I feel things are not going to get better?

Firstly it’s the often ‘one-size fits all’ approach. For a philosophy of care that purports to be people centred, its remarkably blanket in its implementation. “People with learning disabilities shouldn’t be forced to live in groups” excellent – leads to “People with learning disabilities cannot live in groups” What, even if they chose to? Surely any progressive model of care recognises and celebrates that individuals may chose to do something we (as in; WE, the great deciders and facilitators) do not necessarily agree with? But no, its what’s best for you matey, so bloody enjoy it.

Secondly, money. Yes boo hiss, shouldn’t be an issue – well, yes, I agree. But it is, and like it or not, there is no open chequebook, and we can’t just plan services as if there is. But more detail: what troubles me is that there are many people with learning disabilities who have a range of additional needs that make living with others extremely difficult – for them. The only other options are secure or semi-secure settings or just a really unhappy life, devoid of opportunity and, well, delight. What they need are individual dwellings, but there’s the rub, if EVERYONE has an individual dwelling (and I mean IF) that’s pretty blooming expensive, the consequence of which is that there would have to be ‘cost-effective’ or ‘cheap’ ways of providing them.

Except the type of needs that those people I referred to may have, are not cheap to meet. They tend to require lots of people with lots of skills providing lots of interventions and support. So what’s the consequence of that cost? Well people with those needs wouldn’t qualify for individual dwellings because it would be too expensive.

So my problem with the current change and my view of it’s failings is this: people with needs that require individual dwellings and who may chose an individual dwelling won’t be able to access them, while people who may chose to live together aren’t supported to do so. That’s not just a failing to provide actual person centred care, but it’s also a failing to allocate resources appropriately.

Hopefully I’m wrong, hopefully the experiences I’ve heard of are just aberrations. I’m not criticising individual dwellings; they’re obviously a sound and appropriate service model to provide truly individualised care. But they’re expensive, especially for people with complex needs, and if implemented ‘on the cheap’ will mean that those with the most need will miss out, and those that do access them may not actually want to, and may end up more isolated and vulnerable.

More about providing cheaper services, in the next blog.