My son Dean is now 36 years of age. He has an Intellectual Disability, Epilepsy and some challenging behaviour issues. He also has some autistic features as well as multiple difficulties in so many areas of his life. Dean attended a special school for his high school years. They were good years. When he was 13 years of age, he left there and went to a Sheltered Workshop nearby. Many of his old school friends went there too. It was a happy, safe & secure transition for these PWIDs. The staff there were focused on keeping everyone happy and also keeping the workshop running. Sometimes family members would come in and help if there was a lot to do. This was a choice. The Manager was a good friend and authority figure to the staff and the workers. When there were problems with behaviours, they were handled together by the staff and the families. This workshop rolled along and everyone was pretty happy. Dean also met a lot of new people and he was pretty happy to be there. As were his family. He was doing something worthwhile and he was extremely proud of himself. He learnt so much and was among friends. When the management at the workshop changed, he moved to another sheltered workshop nearby.
He met some new people and found some old friends there too. The management there were also thoughtful and happy to work in with the workers to enrich their lives and run a business too. After a few years, one of the workers at this workshop put ideas into Dean’s head about finding work in open employment. Dean then decided that he wanted to pursue this. So Dean left the friendship, safety and security of his sheltered workshop. Although he had left, he still called in there and expected to be welcomed, but they were all pretty busy doing their work. He could have a chat with them at lunchtime, but that did not always work out. He caused some havoc and we were often called in to help sort things out. He obviously missed everyone. But he did not want to go back because this other idea about open employment was firmly fixed in his head. Over a period of about 2 years after leaving the sheltered workshop, Dean intermittently attended the offices of an organization that purported to find him open employment (it took us about a year to find one that would even take him on) but this was a very bad time for Dean and his behaviours suffered. He had no real place to belong. His workplace had filled such an important place in his life.
The Open employment service provider eventually found him a short course on car detailing but there were ongoing issues there too, he attended some of the classes but also absconded and had to be located by police and we all hoped that he would not have a seizure whilst he was lost. The Open employment service provider also assessed him for work ability at this time and found that he had lost his skills. He had regressed. This devastated him and he was angry and sad at once. He knew his life was not good but he did not know what to do. Further to that, he would not listen to those who tried to help him. Dean became very depressed. He visited his specialists more and his medication was increased and changed in an effort to help him cope with the huge hole in his life. His Grand Mal Seizures were more frequent and we were beside ourselves with worry over him. His behaviours became unmanageable. He was a lost soul and it broke our hearts. He was in crisis. In order to save Dean’s life, We were forced to relinquish his care on 27 February 2009. Below is a small excerpt from the letter we sent to the department of Ageing and Disability Services at this time: ‘Dean is putting himself in danger & is constantly at risk in the community as well as at home. He has been seen crossing roads with no thought of danger. He goes out and walks the street often at night. He will not tell us where he is or what he is doing. He is becoming more and more secretive. His behaviour is reckless and he is a danger to himself. Dean is finding it increasingly difficult to have a conversation.
Ever since he left his workplace, he has been regressing. He cannot think of words to use, so he makes up silly phrases to try to make you laugh, He wants friends but is losing all his skills and this also distresses him as well as those around him. He needs an environment with structure. He is spiraling out of control with his sleeping habits. He stays up till 3Am most nights and sleeps in during the day (or has seizures, how can we tell?) He plays loud music or videos through the night and no-one can sleep well with the noise and the fear for Dean as well as for ourselves with the house wide open all night. He looks haggard. We have no idea when he is having seizures unless we happen to hear him in his room struggling for breath at 10.30AM or thereabouts and we rush in to pull the blankets away from his mouth so that he can eventually breathe after his seizure has already started to turn him blue. His eating habits are all wrong too, but we cannot control him at midnight or whenever he goes to the kitchen. He has an idea of good food, but eats not so good food too. He is gaining more and more weight and his health is in jeopardy. He refuses to shower or brush his teeth with any regularity.
His health is deteriorating. His skin is peeling off. We simply cannot negotiate nor force him to bathe. We could in the past, but not anymore. He is unrelenting in his belief that he can in fact do whatever he wants. He truly believes he is right He will not let anyone tell him what to do. He is not happy’ So, having read this we are sure you will understand just how important it was for Dean to be in a sheltered workshop. Without it we had trouble keeping him alive. Whilst he was alive, he had no quality of life. To this day, he still has a reduced quality of life. After trying for 4 years, I still cannot increase his day program funding. He only has 8 hours per week. That is not enough, he has nothing in his life to look forwards too! We are still having ongoing issues with his behaviour. He is in a group home with 3 other men. Only one has recently found a position in a sheltered workshop and that has changed his life. He has Intellectual disabilities and is Bi Polar. Before he went to the Sheltered Workshop he was also depressed and either fighting or sleeping all day. The police were called to the house almost every week. Now he is happy and cannot wait to go to work.
The violence has stopped. How good is that? Please, please do not take away the access to sheltered workshops. Every parent I know agrees that it is not about the wages they earn, but it is about the fact that they have a place to go, a place to belong where they are able to work together with friends and make a difference. They can walk away at the end of a day and say I have worked hard and I am happy with what I have done. My Manager is happy with me too and I cannot wait to go back tomorrow to do it again. Not only that, but I will see my friends and share stories and possibly lunch.
Life is good… If wages are put up then the ADEs will close and these wonderful opportunities will dry up. This cannot happen. Our Precious children deserve better. Lynette Allen Mother of Dean Allen and Advocate for many other PWIDs