Although having a child with disabilities is no doubt stressful, the stress and worry does not necessarily lessen as the child grows older. As children with disabilities age towards adulthood and services start to dwindle, families and caretakers may be faced with some serious changes and hard decisions. You can read the original article here.
Aging Out of Cerebral Palsy Care?
The Canto family is one example of many who are struggling to care for their disabled child. They have a son named Matthew who requires constant care for his cerebral palsy. Now that he just turned eighteen, some of his pediatric services are starting to stop and more responsibility, time, and finances are required to care for him. For example, before he turned eighteen, Matthew received funding from the Canadian government to supplement assistance so that he could have another caretaker at times to allow his mother, and main caretaker, to go on the occasional family trip. That luxury is now gone. When he turns 20, Matthew will no longer have access to his school where he attends classes and engages in different activities with other classmates who have disabilities.
Going it Alone
His mother is concerned that his full time care will fall to her and her husband. Not having a care community or program to go to, can lead to disabled individuals being home all day and cut off from meaningful connections they fostered at school. Furthermore, being home alone all day can foster isolation and potentially stir up mental health issues for the caregivers and the person being cared for alike.
The sudden disappearance of assistance and care for aging children with disabilities can be unnerving and devastating on people’s time, finances, and resources. Programs for assistance and care are scarce and as parents grow older, they worry what may become of their disabled children. Sometimes, such as in Nova Scotia, wait lists for care are several years long. Another family in Canada is absolutely terrified of the 20 year wait for their autistic son to receive residential care. They are behind 12,000 other Canadian families waiting for care.
What can help? Is there a solution?
Parents, caretakers, and disabled people alike may be fearful, dreadful, and anxious about what is going to happen as they age out of care and enter a limited resource system with long wait lists and limited options for care.
A social worker helped one family navigate the system and find a spot in residential care for their son. Finding someone, like a social worker, who knows the system and can help find resources is very helpful. Some parents create nonprofits such as one concerned father who created a co-housing system where seniors and disabled individual cohabit in dignity.
One lawyer who specializes in disability law, Brendon Pooran, suggest that parents look into savings accounts while disabled children are young. A registered disability savings plan, for example, can be a great resource. In addition, a microboard can be hopeful. A microboard is a group of friends and family who create a small not-for-profit corporation to help the disabled individual make decisions. But still, those with limited financial resources especially suffer when faced with a lack of resources for aging disabled children.
The lack of resources available for disabled individuals is affecting many families and is a systemic issue that needs attention and change at the federal, provincial, and territorial jurisdiction level.