for families of children with a disability
and the professionals who serve them
By Alison C. Ouellette, 2002, 56 Pages
Reviewed for OAARSN by Amar Arneja
For Alison and Paul Ouellette, making it possible for their 26-year-old son David move into a house of his own was a special challenge. With David’s requirements for extensive health care and a house that is wheelchair-friendly, safety and security needs were overwhelming. With the help of a friendly real estate agent, a suitable house was purchased and renovations were done by the family to suit David’s needs.
For David, living independently has taken the form of living in his own place with a housemate who is a student at the local university, and for agreed responsibilities, enjoys a great companion and a rent-free home.
For parents, letting go so a disabled child can live independently brings heartache of its own. Alison felt lonely and sad as David was not there to care for and also there were no more support workers coming in and out of the house. She felt a constant urge to go and check on David or at least make a phone call to see if everything is fine. However if you have a responsible housemate who is going to stay for an agreed period or longer, things can work out mutually beneficially to both parties.
Currently Alison is coordinating all David’s support workers and nurse schedules. She calls daily to say hello to Dave and check with Gerry (house mate), to see how things are. Once a week Paul and Alison visit Dave.
Buying and subsequently running a house or apartment for your disabled child is quite expensive, but there are certain ways by which this burden can be reduced. To buy a house under “Home Buyers Plan” under Canadian tax law, both parents can withdraw up to $20,000 each from their Registered Retirement Savings Plan without having to pay tax on it as long they qualify for the Disability Tax Credit. Also when your loved one is living independently, the Ontario Disability Pension is increased by about $200 a month. All these small things help towards achieving the ultimate dream of independent living.
Initially Alison felt that there was no need to establish a support circle for David. But after a few months she realized that a support circle was needed to keep things going smoothly especially if she or Paul were not available on some days. A group of friends and family was invited to become David’s “Consulting Circle”. This group would take over if Paul and Alison were away or not available for some reason.
This book makes a valuable reading for any parent, who is caring for a child with a disability and is planning the future for the child. Parents of a disabled child can identify themselves in similar situations and in that respect can learn a lot by reading this book.
Alison has achieved the difficult
challenges of “A Place Called Home” for her son with dignity and respect.
Let us hope that other parents in similar situations can have their dreams
Ms Ouellette is available for
keynote addresses and workshops entitled