IF I WAS asked to describe my brother Thomas, I would say he’s very funny, handsome and a total chancer and that his favourite place in the world is McDonald’s. His various medical and psychological reports would describe Thomas as having a diagnosis of autism, epilepsy and a moderate learning disability.
While both of these descriptions are accurate, they are also incomplete. My brother is person who is wonderful but also goes through life having to cope with a myriad of struggles on a daily basis.
Thomas’ early life
Thomas lived at home until September 1992. He was almost 16 and I was 5 when he moved into St Mary of the Angels in Beaufort, Co Kerry. His challenging behaviour was the reason he required residential care.
I love my brother dearly and don’t like to list negative incidents, but home life was stressful and dangerous while we were growing up. My parents were well ahead of their time regarding knowledge of autism and they brought him to private therapies in Washington and New York to give Thomas his best chance in life.
He does have speech and can communicate with us which is amazing. However, no matter how hard my parents tried my brother wasn’t living a happy life at home.
Thomas moved into residential care and attended St Francis Special School for his last two years of education. He settled like never before. My mother brought him home every weekend, which we still do to this day. I was able to have a relationship with my brother, one without fear. This is fortunate, because now my sister and I are all Thomas has left.
He loves his life and his “home” now
Both our mother and father passed away tragically. My mother and father were Thomas’ champions. They loved him fiercely and when they could no longer keep him at home full time, St Mary of the Angels was a gift. Not just for our family, but for Thomas too. He loves his life and his home. He has his own room and access to so many facilities on the campus.
I firmly believe that having the stability of St Mary of the Angels has helped Thomas to cope with losing Mom and Dad. Now policy makers and the Minister for Disabilities are telling us my brother should be moved from this “congregated setting”.
Unfortunately, I don’t believe Thomas is suitable for “community living”. I’m a special needs teacher and I’ve thought very long and hard about this, believe me. I do know it is the best scenario for many people.
Thomas chose Beaufort
Here is my reasoning at its most basic: if the front door being left open in their home could lead to an emergency, then perhaps “community living” may not be the best option. Thomas’ door isn’t locked during the day and he is safe. There isn’t a code he doesn’t know. He never goes missing and the traffic isn’t dangerous. He has freedom.
But I know Thomas. If he lived elsewhere the door would need to be locked. Immediately his world would be smaller, and Thomas’ behaviour does not improve when he doesn’t have space and freedom.
Thomas has been asked if he wants to get a new house and he has said no. We gave Thomas options and he chose Beaufort. He chose his friends. This policy and various management figures don’t seem to care about my brother’s choice.
People with disabilities need options
I want to believe that the policy makers and ministers want the best for people with disabilities in this country. Well options are the best thing you can give them. Support is the best thing you can give them.
My brother is happy and safe. He has a fantastic home and a family that adores him. I think the government and the HSE need to focus their energies on the time bomb that is people with severe disabilities living at home “with support”. I’d like the government to wake up and realise that the majority aren’t getting the support they require.
I teach children in Kerry whose parents have little to no access to respite. These children are getting no real hands-on therapies although they have a “team”. The system is a joke. Tragedy will be this government’s legacy if something isn’t done.
Joyce Bambury is a special needs teacher in St Francis Special School in Beaufort, Co. Kerry. She lives in Kenmare and is secretary for the St Mary of the Angels Parents and Relatives Association.
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