by Donald Bidd

 

 

 

 

 

 

 

Susan and Lewis live in the West Island and are in their mid-70s. Their health is in decline. Their 45-year-old son Mark has a significant intellectual disability and daily seizures since childhood. He has been on a waiting list for a group home for over 10 years.

It is likely Mark will only have access to such a home if one of the parents falls gravely ill or dies. Susan and Lewis are profoundly worried about Mark’s future because he does not have any friends, and his only relative is a brother in Calgary. He has his own family and challenges.

Their biggest questions, full of anguish, are these: “What will happen to our child with a life-long
disability when we are no longer able to care for or monitor his well-being because of age, illness, or death? Who will be there to keep an eye on his care and well-being, advocate for him, protect his interests? What can we put into place now to give us real peace of mind?” Many parents mistakenly assume that relatives will be there for their child without having talked this through openly, and in the necessary detail.

Seniors still responsible for their adult children with intellectual disabilities, autism, learning disabilities or mental illnesses face huge challenges. At a stage in life when they should prioritize their own care and enjoy their retirement, they remain heavily involved in their children’s lives even if they would like to let go and take better care of themselves. Government cutbacks often mean that there are not enough facilities, programs, and services available as their middle-aged adult children
become seniors themselves.

Are there solutions to this complex problem? My own experience as a father of a 30-year-old son with an intellectual disability, an advocate, and a specialist coach serving these families is that comprehensive “future planning” does make a huge difference.

“Future planning” means planning the future of the child with special needs (whatever the age) by reviewing the full range of 12 Safety and Security Factors I have identified.

By implementing a comprehensive action plan addressing these factors, parents are able to significantly improve the safety and well-being of their children, both now and in the long term. With this plan in place, parents can achieve peace of mind about their child’s future and pay attention to their own health and well-being.

Part II of this series next month will highlight nitty-gritty action items: financial considerations for the parents and child, legal representation, and advocacy for much-needed services, such as group homes. It will explain how to weave together the advice of professionals into a coherent plan.
Part III will discuss the most important safety and security factor: a facilitated loving circle of friends surrounding the person with a disability. Most parents have lost the dream that their children could be known and loved by other people. But deep, reciprocal relationships between their children and friends in the community are possible.

Donald Bidd is a Future Planning Advisor, advocate and coach, serving persons with disabilities and their families.