Nowhere to Turn for Adults with Developmental Disabilities

The Ontario Ombudsman released a report Nowhere to Turn in August 2016.  It was the result of an investigation into the Ontario Ministry of Community and Social Services response to situations of crisis involving adults with developmental disabilities. At the conclusion of the Report are 60 recommendations to address the current state of services for this segment of the population.

The maiden is one of thousands waiting for services. We started the application for Development Services Ontario (housing, respite, day programs, employment supports, housing) when she was sixteen. We received notification a few months after her 17th birthday that she was eligible for services under the DSO once she became an adult. Three months after she turned 18, and after all services and supports ceased under the child and youth program, we are still waiting for the in-home assessment that will determine which programs and services she will qualify for as an adult. And we’ve been told it could be a further 12 months before that happens – and two to three more years before she can access any services because the wait lists are so long.

Some of the more interesting and shocking revelations I found in the Report:

  • During the course of this investigation the Ombudsman Office received 1,436 complaints about the state of Ontario’s developmental services system.
  • The current developmental services system is a fragmented, confusing and complex assortment of hundreds of community agencies and local processes, impossible for many individuals with developmental disabilities and their families to navigate.
  • The present demand for services far outstrips the supply, leaving thousands stranded on waiting lists.
  • Insufficient crisis beds and supports can result in individuals remaining in unstable and unsafe homes or shuffled off to homeless shelters, where their vulnerability continues to place them at risk.
  • Institutional care no longer happens through design but by default.
  • Ontario’s general hospitals and psychiatric units have become hosts to hundreds of adults with developmental disabilities at a significant cost to the health system.
  • Long term care homes have also become providers of institutional care to adults with developmental disabilities.
  • Incarceration of adults with developmental disabilities has also become a fail safe alternative to secure and supportive housing in the community. Court diversion programs are not tailored to the needs of persons with developmental challenges.
  • Caregiver exhaustion, illness, aging and death have led to cases of abandonment and homelessness.
  • In 2012, the Ministry of Community and Social Services estimated there were 62,000 adults in Ontario with developmental disabilities. Within this group up to 40% are likely to have a concurrent mental health diagnosis.
  • In years past, developmental services were considered part of the health care system. 
  • Under MCSS spending on developmental services is considered discretionary and restricted to set funding envelopes. In 2012-2013 the budget was $1.69 billion; in 2016-2017 funding has reached $2 billion.
  • In March 2012, there were 3,700 individuals waiting for Passport supports. As of December 2015 there were 14,402 individuals on the Passport wait list. The Passport Program provides funds for a range of services and supports to enable adults with developmental disabilities to take part in community classes, recreational programs, develop work, volunteer and daily life skills, hire a support worker, create a life plan and access temporary respite for their caregivers. 
  •  Wait lists for residential placements are not chronological. It is based on need. As of April 2014, 12,808 adults are waiting for a residential placement.
  • There remain individuals on the margins, living with profound and complex disabilities and faced with extreme circumstances . When they reach a crisis point, service gaps often leave them and their families without any real choice, and dependent on a system unresponsive to their needs.
  • It is often said that societies are judged on how they treat the most vulnerable of their members. The time has come to move beyond apologies and work toward a consistent, coordinated, collaborative and responsive developmental services system, able to effectively and humanely meet the needs of individuals and families in crisis.

So, like the name of the report, the maiden and I have nowhere to turn right now. And it seems it’s going to be a long wait, with over 14,400 waiting for services.