Adam's Story
My name is Margaret, I am 58 and my husband Bill is 69. We are the parents and carers for our son, Adam who turned 35 in October. We have a 37 year old daughter, son-in-law and 2 granddaughters aged 7and 10 who live at Carlingford and also assist us to support Adam.
At birth Adam appeared to be a normal healthy baby. But in the early weeks of his life was not as ‘settled’ as his older sister had been. He needed many early interventions: Tresillian nursing assistance for his poor feeding and minimal weight gain, ear surgery after constant ear infections, many hospitalisations for severe Asthma, and speech and occupational therapies. He was diagnosed at 4 years with a mild/moderate intellectual disability.
By 12 years of age this was confirmed as a moderate intellectual disability. During this time we were unfortunate in having no extended family to support myself and husband and daughter and relied only on friends. Adams disability means he requires daily support. Although very little physical support is needed now he is an adult, he needs assistance for organizing his daily life. We are very proud of his achievements; that he has a job and goes to work each day on the bus, which we travel-trained him to do. He goes to activities regularly with his other disabled friends to which we drive him and in some cases pick him up from. We have been doing this for the past 35 years and are now experiencing ‘burnout’. My husband has Coronary Artery disease and we are both very concerned for the future of our son’s care and well-being.
Adam attended a school for children with special needs and with the help of one of the work experience teachers obtained his job. He works part-time 20 hours over 5 days a week as a warehouse assistant; a job he has held for the past 15 years and receives a part Disability Support Pension. He is cooperative and well liked by his co-workers but never really included in socialising with them outside of work, other than the annual Christmas party. He copes well with routine and has developed some good routines but if there is change to this routine he is at a loss as to what to do eg. if the power goes off and his alarm doesn’t go off, he wakes later than usual. He cannot work out that he needs to just have shower, get ready for work and go. Instead he performs the usual morning routine and misses the bus to work then is unsure what to do next as his routine has been broken.
He is not able to read or write much more than some sight words and his name. He has very limited ability in handling his money.
Adam enjoys any kind of sport and has played both indoor and outdoor soccer, cricket, tee ball, softball and tenpin bowling. All these required support from us. He likes to go out with his ‘group’ (Lifelinks group is a respite service for the parents). They go to the beach, movies, pubs, and just about anywhere your average single ‘30 something’ year old likes to go. He likes to see his nieces and sister and brother in law. He does not display any particular problem behaviors but could become more socially isolated if not encouraged by us to go out. He likes to watch sport on TV especially the wrestling. To us he is just like any other member of our community but … he does not have the same options especially in regard to where he lives. Eleven years ago we built a ‘granny flat’ at the back of our house for him. Now it is time for the next step forward – moving out of home and moving in with his peers while his family is nearby to support that next step as we have been all the way through all the other steps. The other option worries me immensely- that upon our death or inability to care for him he will be placed in a group home (anywhere in NSW) with no familiarity to people or place and no family to assist in the transition.
I became part of RASAID because I share the common need of wanting supported accommodation in the RYDE area for our son. From Ryde he is able to access all his established networks of work, medical and social activities while maintaining a reasonable level of independence. After many requests to DADHC for supported accommodation my husband and I were offered in home support of 8 hours a week provided by Hornsby Challenge (now known as A.C Foundation). For the past 3 years this ‘support’ has assisted Adam in maintaining the skills that we as his family have worked hard to help him develop. We have done all we can as parents to encourage and extend his independence but now he needs to take that next step.
Because the DADHC system for accessing supported accommodation is clearly crisis driven we will always be at the bottom of the list (the list that doesn’t seem to exist!) There will always be someone needier than our son. Did we do the wrong thing in trying to maximise his independence only to find that we are blocked at the next step –moving out of the family home?
These are meant to be our retirement years when we would like to be travelling and enjoying the peace that comes with knowing our son is living a happy and fulfilling life with peers of his choice but still living close enough to us for us to be able to support him. Most parents our age are able to go away on annual holidays without having to make special arrangements for their 35 year old children to be looked after. We would love to have that same option.