Families of adult children with disabilities in Ontario, Canada, are in the news today. An Ottawa mother, Amanda Telford, 'abandoned' her son Phillip (aged 19) in the offices of Ontario Social Services and the lines in her tearful, exhausted face tell a story of frustration, isolation and lack of support for her family. Telford's son Philippe has severe autism, developmental disabilities and challenging behaviors.
Philippe Telford requires twenty-four hour one to one supervision to keep him safe. He is non-verbal and very physically strong as well as agile. When Philippe turned 19, his access to school ended and his name went on a long waiting list for day programs and supportive housing. Philippe must wait for someone currently receiving service to pass away before he will be offered assistance. And there's a good chance that Philippe is not even at the top of the waiting list - clients whose parents are dead have top spot. Amanda Telford abandoned her son in order to get him the services he needs to be safe.
Currently in Ontario, an inquiry is being carried out by the provincial Ombudsman into the crises of families who are struggling to support their adult with developmental disabilities. So far, the Ombudsman has taken statements from 700 families in crisis and that number is growing quickly. Families are desperate and push has come to shove.
Institutions to support adults with disabilities in this province and elsewhere have closed, and that is a good thing. But the funds realised from the closure of those facilities have not been reinvested into families who support the next generation of children with disabilities growing up. Community care policies were developed 'back in the day' when a developmental disability was a life-limiting condition. As recently as twenty-five years ago, medical textbooks listed the longevity of someone living with Down's Syndrome as 21 years. Today, those without complicating medical conditions live normal life spans. Today's young adults are the first generation of people with disabilities who live outlive their parents - ever. And no government anywhere is ready for this social phenomenon.
Two things we know for sure: 1) we have growing numbers of people aging into disability AND increasing numbers of people with disability aging and 2) community care budgets are being impossibly stretched due to these demographic changes, pitting an aging population against people with disabilities.
Today, a CBC radio show "Ontario Today" took calls from families in crisis trying to find day programs and housing solutions for their adult children with developmental disabilities, including autism. I hope that both provincial and federal authorities involved in social care policy heard the program. Every parent caller knew what kind of help they needed. They had developed solutions that were creative, responsive, collaborative and fair. Many parents expressed a wish to co-pay with government such solutions and to remain significantly involved in their child's life. Every parent who called in was exhausted, desperately worried, and very angry. But, they also expressed the deep and abiding love for their vulnerable children, the same as any parent would express for their able-bodied child.
Our society used to have institutions for vulnerable citizens. Then the institutions closed and families were expected to 'look after their own'. But families cannot look after a vulnerable child forever. Parents get old and infirm, or they die. Direct care and housing solutions need to be co-created by families together with policy-makers. The will is there, the time is right. Let's do it now.