Tuesday, 21 June 2011

Summer is approaching and with it the worry for many families about what will happen when schools and colleges close or when regular carers go on holiday leaving those with autism feeling uncertain and often lonely.

Whilst RfA holiday schemes will be supporting hundreds of children in Birmingham and London with a week of specialist holiday play, most families want more and many adults find themselves with nothing at all to do over the summer weeks.

Going away on holiday can be extremely tricky when a family member hates change. RfA can and does help with practical strategies to make travel a little more bearable. Just remembering to say that not only will you be coming home again but that everything will still be there and the same on your return can be very reassuring as can photos of exactly where you are going and not saying just that you are going to the airport to get a plane but that you are going to the airport to wait and then you will catch a plane, a very different scenario and helpful in keeping stress levels under control!

It is these seemingly little things, one week of appropriate holiday play; strategies to make travel less of a nightmare; a couple of hours a week where a teenager can be themselves with friends who understand them; volunteers willing to support a child to the park for an hour or two giving them a bit of fun and the family a break; caring and expert answers to difficult questions; someone to talk to when you need them; all of these little things go some way to making the lives of those affected by autism and those who love them, a bit easier.

Although I would love us to do more of the 'big' things such as providing really excellent carers every day round the clock for those who need it or running schools that really cater for the needs of children with autism or supporting isolated adults whose behaviour is so challenging that they are excluded from most areas of life to live in housing that is designed to suit their needs; the reality is that, for now, I have to be happy that we do those 'little' things incredibly reliably and incredibly well.

It will never be enough for me or for our users but when a teenager is able to say of one of our Birmingham Youth Clubs:

'Like here nobodies laughing at people about who they are.'

It speaks volumes of his previous experiences and of how we manage for a little time in his week to get it right.

I know that those children and young people lucky enough to have managed to get a place on our schemes and those adults who will continue to attend sports groups, arts groups and social groups run by my amazing team will have fun over the summer and I hope that those who have not been quite so lucky this time will see us more able to provide for them in the future.

This time of year always makes me feel hopeful and despite all the doom and gloom around I do hope we will be able to grow our services and respond to all the need out there. If we can help you with either the little or the big things then do get in touch and in the meantime I wish you a happy, warm, safe and relaxing summer.

Wednesday, 1 June 2011

I am writing this having just watched the dreadful Panorama documentary ‘The Abuse Exposed’. For those who did not see it this was a documentary on sustained abuse in a private hospital for those with learning difficulties and/or autism.

The abuse was terrifying and terrible. That any human being, let alone those employed as carers, can treat other humans in the way that we saw on the programme is almost impossible to believe but there were other things that were shocking in the programme. The response from the CEO of the company who managed the hospital was paltry to say the least. He was sorry, he did not know, it won’t happen again. None of that is good enough. As the senior manager for Resources I know the buck stops with me. If there is anything in any of our services that is not good enough, then I am responsible. I have to make it my business to know. If there is any doubt at all I would always err on the side of action. So long as we claim to care we have to make sure that we care to the highest standards all the time. There is no mid way.

The programme made me even more determined to continue to develop our adult services to ensure that those who wish to and who are able to remain in the community are helped to do so. It is essential that there is support available in community organisations for both individuals and for their families. This serves several purposes. Adults with autism need somewhere they can be accepted, have fun, have expanded opportunities, be listened to and be heard. It is great if we can also help extend social and practical skills but that is a bonus. It is vital that there are community organisations which are just there for their users, not necessarily tied to achievement but just a place that is safe to be and where everyone can be themselves. The community should also be a place of vigilance for those who are vulnerable. We are responsible for each other and we must speak out if we think that anyone is being hurt or treated with a lack of care and respect. The minute someone is in a locked institution the opportunities for hidden abuse increase. That is not to say most hospitals and residential institutions are not good and caring places but where there is no one seeing in every day and at any time then the opportunity for the kind of torture exposed in the Panorama programme increases.

Parents and carers need the chance to voice their concerns about aging and what will happen to those they love when they die. The Panorama programme will only add to the anxiety that most parents have as to who will end up looking after their adult children. As parents we all believe no one can love our children as much as we do but we must have faith that professional carers will, at the very least, be kind, well trained and want to do the best for those they look after.

At Resources we are committed to extend the number of individual carers who can offer care on a day to day basis but that will always be linked to groups so that those carers have support, supervision, can see best practice from others and continue to learn. We must offer training and respect to our carers so that they know their work as valued and valuable and in that they in turn give respect to the adults they support.

None of this is rocket science but it does take commitment and money. Good care does not come cheap, however money does not guarantee good care either. The hospital provision featured in the programme was not cheap, lack of money is not the only cause of poor services. Commitment from the top to high quality services and caring staff is the most important thing and at Resources for Autism that commitment is absolute from both myself and our trustees.