A "crushing demand for services" has caused unacceptably long provincial wait lists for services and housing that support developmentally disabled individuals say local advocates who are joining forces to demand the province offer aid to chronically underfunded programs.
The nine-member agencies of the Developmental Services Planning & Advisory Council of Waterloo Region (DSPAC) issued a press release Tuesday asking for help to address the growing demand for essential programs and services.
Since 1993, core funding across developmental services has risen by less than seven per cent, while the cost of living has increased by over 60 per cent, the release says.
"Without urgent immediate investment, the strain on families, caregivers, and service agencies in Waterloo Region will only worsen."
Community Living Cambridge is among the agencies calling for change. They join organizations that assist those with developmental disabilities, including Aldaview Services, DeafBlind Ontario Services, Elmira District Community Living and Extend-A-Family Waterloo Region.
“The developmental services sector is a lifeline enabling people with developmental disabilities to thrive in their communities while also providing essential supports and caregiver relief for families,” said Brian Swainson, CEO of Sunbeam Community & Developmental Services in the release.
“Families in Waterloo Region are currently left to navigate an overburdened system, with excessive wait times exacting intolerable stress and uncertainty on them and their loved ones.”
There are currently 716 people on the wait list for supportive housing options across Waterloo Region, with the local sector already at capacity with 741 people in group, supportive and independent inclusive living placements.
With only a handful of local housing placement opportunities becoming available each year, this often translates to five, 10 or over 15 years of uncertainty for wait-listed individuals and their families.
“The wait lists underscore the urgent need for immediate action,” said Ann Bilodeau, CEO of KW Habilitation Services.
“Families across Waterloo Region are being forced into crisis situations, especially while awaiting supportive housing options for their loved ones while service providers are already stretched thin. We need immediate action to ensure that people in our community get the support they deserve.”
Nearly 1,200 individuals in Waterloo Region are currently wait-listed for community supports—essential programs that help individuals with developmental disabilities stay engaged in their communities while providing relief for caregivers.
These include day programs, overnight respite, recreational activities, skills development, employment and vocational training, autism services, and behavioural supports. Often serving as a lifeline, these services help prevent family breakdown caused by caregiver burnout.
“The gap in supports for individuals with developmental disabilities isn’t just a statistic—for my family and others like mine, it was a daily reality,” said Sue Simpson, parent of an adult having a developmental disability.
“Living with the constant fear of an unknown future, families face caregiver burnout, financial strain, and emotional stress due to long wait lists for support. Families shouldn’t have to wait for a crisis, such as my family experienced, to access vital services when timely support could prevent hardship and create a healthier, stronger community for all.”
The groups say the #WaitingToBelong campaign led by Community Living Ontario and OASIS highlights the devastating impact of long waitlists, leaving individuals with intellectual disabilities and their families in limbo for years—sometimes decades—without essential supports.
The campaign urges immediate government investment to prevent further crises and ensure access to housing, employment, and community connections.
“We know and appreciate the investments that have been made in the Developmental Services sector,” said Swainson. “However, there are still 52,000 adults wait-listed for services, as well as thousands more children and youth having complex needs stuck on wait lists, leaving families struggling without the vital services they require. We need to deal with over 30 years of chronic funding shortfalls to adequately address the critical wait list situation.”
Waterloo Region’s developmental services organizations, alongside #WaitingToBelong and sector partners across Ontario, are calling on the provincial government to act now.