Misunderstood

I don’t think there are a group of people whose needs are more grossly misunderstood than the needs of people with learning disabilities. Maybe its because I am dedicated to trying to get it right for this group so I’m not seeing the struggles other people face. In some ways, we have come a long way from not caring about people’s needs and institutionalising people for the “greater good”. But every step forward seems to be accompanied by others not quite getting it which leads to a situation where policy and those not directly involved haven’t quite got it.

Valuing People is an example of this. Without a doubt, the Valuing People programme has been one of the most effective programmes of change for people with learning disabilities and it achieved many great things. However, when a lay person hears the terms “Rights, Choice, Inclusion, and Independence” it led to policies of inaction. Some people with learning disabilities have extremely limited ability to express choice, and if people aren’t “choosing” to do things this was used as permission to do nothing.

And now (well four years ago) there is Winterbourne View. This has led to programmes to close long stay hospitals and reduce physical interventions. Both of these targets are admirable, and have been discussed for many decades. But what was seen at Winterbourne View was not physical intervention, it was abuse. And abuse isn’t exclusive to hospital settings. It has been used as a driver to push something not quite connected that has never been fully addressed before. The actual connection between Winterbourne View and these issues are very weak.

Positive Behaviour Support is another area that has been pushed forward with this agenda. I have expressed my concerns regarding common misunderstandings of PBS many times before. The current agenda is continuing to push a fluffy risk management version of PBS which isn’t the PBS I believe in. The effectiveness of this approach will be limited, particularly as the current agenda is to get everyone doing PBS, without clarification of what that actually means. I know some families who are not fans of PBS, and with the current direction to skill everyone in what is at risk of being defined as Positive B.S. I can see why. When family members have received this ineffective version of a structured clinical intervention wouldn’t we all be against it too.

Saying the word “clinical” there caused me to think twice also. There is a risk when using terms like “clinical” that I could be criticised for medicalising a social need. I think the medical model vs social model is dated now. I don’t know any health professionals that do not consider a person holistically and blends social and medical theories. Equally, I don’t know anyone from a social background who denies clinical/medical needs. Again, this is a message that has been misunderstood. Families are fed up of not being listened to. They are fed up of being pushed out of their sons and daughters life by people who think they know best. They are fed up of people being sent far away and over medicated rather than people working with them to meet their childs needs. This doesn’t always mean they don’t want health professionals in their life.

Learning Disability Nurses are the only profession to be trained solely to meet the needs of people with learning disabilities. Chris Hatton recently blogged how this group have reduced by a third in 5 years. They provide adapted health interventions, and enable access to health for people who without their support would be excluded and ignored. Speech & Language Therapists can identify peoples communication needs, skill families and teams to promote environments that make communication easier, and build strategies to improve peoples communication skills. OTs can understand skills for independent living and look at adaptations to the home to enable greater independence, and skills teaching to build autonomy. Physiotherapists can provide life saving support to people with profound and multiple disabilities with support with posture, passive exercises, and support with aspiration.

There are many other skilled professionals who currently work in inpatient and community learning disability teams. I don’t think families are saying they do not want this support. But it needs to be local, accessible, and to listen to them.

I think most families also want access to people who are skilled in reducing challenging behaviour when this is needed. Will skilling up support workers to deliver Positively B.S. be enough? Positive Behaviour Support is an application of Applied Behaviour Analysis. Without professionals who are trained in effectively delivering/overseeing this it can be misused and result in abusive approaches at worst, or be fluffy ineffective nonsense at best. I think families have had enough of fluffy ineffective nonsense.

We are planning a twitter chat on 30th November on the risks associated with PBS. Check the PBS4Everyone Facebook page for further details.

I have shared before that I think we are lacking a model in learning disability support that explains succinctly how to best meet the needs of people with learning disabilities, that captures the hearts and minds of everyone who is involved in their life. Mental health support has this in the Recovery Model. We don’t want people to “recover” from their learning disabilities though! We want to Enable people with learning disabilities to be as independent as they can be. We want environments to be Enabling to support this. We want support to continuously Enable people to try new things and learn new skills. Would an Enablement Model reduce misunderstandings and help build shared goals?