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Brookdale Care Autism Articles
Individual Budgets - A good Life
Posted: 2009-07-27 | Author: Autism Articles
Joe Powell, 32 year old man with Asperger syndrome who, after several years supported by the specialist care system, now lives independently in South Wales and has an Individual Budget. Joe writes about his experience with Individual Budgets and how they enabled him to develop a personalised care package that met his exact needs.
Every parent is concerned about the future of their child and what will happen to them when mum and dad aren’t around anymore, this is a perfectly natural emotion for any loving and caring parent to experience. However when your child has an autism spectrum disorder and may be reliant on others to safeguard their well being, parents’ anxieties are naturally exacerbated because of the vulnerability caused by their condition.
As a person with Asperger Syndrome who speaks on both Autism and Individual Budgets, I am here to tell service users and their loved ones, that there is a positive future out there for you and that this period of transition towards Personalisation will be one of the most important and exciting periods, and, guess what, it works; I should know, it is almost a year since I received my individual budget and my future has never been so positive.
When I was first given the option of having an individual budget and paying my own care staff, I must admit my family and I were scared. I had always considered negotiating my package of care and running my own care team was a very complicated and specialist area of expertise, but I soon found how easy and manageable this was and before long I had a self built D.I.Y flat pack care service of which I pay my own staff to support me, doing the things I like. For most people in care that model is not realistic however by having control and choice everyone with a care need will have more power to direct their lives and care organisations will be empowered further to learn and advocate to outside agencies the needs of the people who use their services.
In my case my individual budget has meant that I now can fully concentrate with my team on building a good life for Joe, concentrating on what I would like to do and when I want to do it. Obviously we are all very different, my story is unique to me and not everybody is as capable as I am, but I think that progress is relative and with the right control and support with good personal centred practice we are coming closer now that we ever have before to providing tailor made services for people with autism and in learning more about the condition by simply observing and respecting the choices our service users make in their everyday lives.
Care services and good practices in autism like everything else evolves. I have been a service user in care organisations for about twelve years and they helped me enormously, right to the point where I outgrew my service and almost became a victim of my own success because my progress meant that a care setting was no longer right for me, but at the same time still had care needs, including my vulnerability to exploitation and my lack of assertiveness which causes me to be exploited by many people in society, because of my polite, kind and helpful nature. My parents were obviously very concerned about this because they wanted me to progress and move on with my life but at the same time they wanted to remain realistic about the levels of care and support I would need in order to remain safe.
I received an individual budget in August 2008, which comprised of a network facilitator (to ensure I had support networks made up of people who care and look out for me, and who are not paid a wage), two life coaches (to help me to work on the issues I have identified as being central to my progress and eventual fuller independence). Amongst other things my life coaches are helping me to structure my time, dress appropriately/ more fashionably, manage my life commitments and hopefully eventually start up my own media business. There role is to eventually work themselves out of a job and to help me as fully as independent as possible and we all think that is a very realistic goal. A lot of my problems and delay in progress like most people with autism came about through growing up and living during times when little was known about autism spectrum disorders and the consequences of years of being misunderstood and inappropriately advised and supported by those who loved me but who didn’t understand the hidden complexities of my condition.
My care service (as I am sure the same applies for organisations such as Brookdale Care) had to spend a lot of time picking up the pieces and the damage caused from lives lived with incorrect and inappropriate services of care, especially for those with classic autism and severe learning disabilities who were often placed in mental health hospitals for years, with little understanding (and in most cases, no diagnosis) of their autism. Autism itself is a very complex and specialised area of support need and treating this as you would any other learning disability is bound to have profound long term developmental consequences on people with autism who have behaviours learned and developed as coping mechanisms to combat inappropriate support and as a result of the lack of a right intervention at the time the behaviour started to develop.
The stressful and challenging task for care services is to then ‘re-train’ or ‘re-manage’ these service users behaviours in order to help them control their own anxieties and behaviours to improve their quality of life, but of course can be a very distressing and arduous journey for both the service user and those who care for them. How do you restructure the thinking of someone who is severely autistic, has severe learning difficulties and has not had the appropriate intervention until they are in their late fifties. Hopefully in the future that will not be as necessary as it is now and we can spend time developing and building coping strategies and improving on the quality of life for people with autism, I think that day is coming, but we still have a way to go.
I guess what I am trying to illustrate is how far we have already come in giving people real life choices and individualised tailor made services and there is nobody (however autism affects their life) who should not take heart and great encouragement from this. We can always improve services and care for people with autism and this is good news, because it means as services we have not yet reached our potential and as long as we have not reached our potential it means we have great hope for the future and that we have not come to the point where we stagnate or have reached the end. This means we have a massive scope of learning and developing which can only improve the quality of life for people with autism and our understanding of the condition. The key to this success is that we all get involved and that we all share our ideas and opinions whatever our personal role within the field of autism.