Press conference - close caption enabled
Minister accepts all 60 recommendations - closed caption enabled
table of contents
1 It is now recognized that the model of institutional care for individuals with developmental disabilities, which prevailed in this province for over a century, was a failure. The Premier, on December 9, 2013, apologized for the suffering it caused, and Ontario has moved on to embrace a community-based approach for the developmental services sector, promoting social inclusion, individual choice and independence. This is a positive evolutionary policy shift. Unfortunately, despite the government’s recent efforts, 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. Without significant additional reform, many uniquely vulnerable people will continue to be lost in the system and experience harm because of inadequate supports and services.
2 During the course of this investigation our Office received more than 1,436 complaints about the state of Ontario’s developmental services system and we continue to do so. Our investigation focused on how the Ministry of Community and Social Services responds to situations of crisis and administers the process for co-ordinating, monitoring, and facilitating urgent access to resources for adults with developmental disabilities. What we found was 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 process for accessing supports and services in the developmental services sector is multi-layered, and inconsistent across the province. Families were often bewildered by the confusing web of service providers or oblivious to the distinctions between the various service agencies, Developmental Services Ontario offices and Ministry officials. Many were discouraged by interminable waitlist delays and desperate for help. Some were on the brink of crisis, others firmly in its midst.
3 The present demand for services far outstrips the supply, leaving thousands stranded on waiting lists. While steps have been taken to create more uniformity and standardization for accessing urgent resources, there is still marked inconsistency in how limited funds are prioritized and distributed.
4 We also discovered that without adequate safeguards, early warning systems, and effective monitoring of agency reporting obligations, in some cases adults with developmental disabilities are placed in jeopardy of domestic abuse. Insufficient crisis beds and supports can result in individuals remaining in unstable and unsafe homes or shuttled off to homeless shelters, where their vulnerability continues to place them at risk. For example, it took two years for one survivor of neglect, Adam, to secure steady funding and a residential placement. Then there was Layla, who was shunted between 20 temporary locations in 34 days, including a series of shelters, as she desperately but unsuccessfully attempted to escape an abusive home situation.
5 Despite the Ministry’s efforts and intent to transform the system away from the former institutional model, in reality some adults with developmental disabilities, particularly those who live with complex conditions or serious behavioural challenges continue to find themselves excluded from their communities. Institutional care no longer happens through design but by default. There are far too few community placements with the ability to accommodate the needs of individuals labelled as hard to serve. With nowhere else to turn, those in crisis can find themselves inappropriately housed in a variety of institutional settings from hospitals to jails.
6 Ontario’s general hospitals and psychiatric units have become hosts to hundreds of adults with developmental disabilities – many with multiple diagnoses – at significant cost to the health system. Some spend years hospitalized, for reasons unrelated to health care, while waiting for homes in the developmental services sector. Most hospitals typically lack the specialty training and programming necessary to serve those with developmental disabilities. Unnecessary hospitalization also increases the risk of infection and psychological harm. While in hospital, adults with developmental disabilities all too often find themselves sedated, under guard, and isolated on locked wards. For instance, Peter, who is diagnosed with autism spectrum disorder and functions cognitively at the level of an 18-month-old child, spent the better part of 12 years languishing on psychiatric units. When he lashed out due to under-stimulation, he would inevitably end up in physical restraints. The Ministry has recently made some attempts at inter-ministerial co-ordination and collaboration to solve the problem of unnecessary hospitalization. However, it must take on a more active and lead role to reverse this disturbing trend.
7 Long-term care homes have also become providers of institutional care to adults with developmental disabilities, despite the fact that such settings can be wholly unsuitable. Some, such as Patrick, who has cerebral palsy and entered a nursing home at the age of 24, are decades younger and considerably more active than the elderly residents who typically occupy these homes. Patrick initially rebelled against this inapt environment and, in one fit of frustration, accidentally broke the ankle of a frail senior. His wheelchair was confiscated, leaving him to crawl on the floor for four months. His lack of mobility and verbal communication skills also left him vulnerable to repeated sexual abuse by an elderly roommate. The Ministry has failed individuals like Patrick. It needs to take steps to ensure adults with developmental disabilities, whose interests are best served in community placements, do not find themselves consigned to live out their lives in long-term care homes and hospitals.
8 Unfortunately, incarceration of adults with developmental disabilities has also become a failsafe alternative to secure and supportive housing in the community. Individuals with developmental disabilities, particularly those who also live with psychiatric illness, are in jeopardy of being charged criminally when they act impulsively and aggressively. For example, at 55, Joe lives with developmental and psychiatric disabilities and functions at the cognitive level of a six-year-old. He has been jailed repeatedly for offences including theft and assault. While in the correctional system, Joe’s disruptive, combative, bizarre and suicidal behaviours typically earn him a stay in solitary confinement, isolated in a segregation cell. Then there is 25-year-old Andrew, a brain cancer survivor who lives with cognitive and developmental disabilities. He is a former Crown ward whose risky behaviour, including making false abuse claims, has rendered him a pariah in the developmental services system. Without satisfactory community supports, he has spent considerable time locked up in jail. Although court diversion programs exist, they are not tailored to the needs of persons with developmental challenges. The Ministry must work more effectively with the justice and correctional systems to minimize the risks of unwarranted criminalization and incarceration of vulnerable individuals. It must also take decisive steps to build capacity in the community to protect adults with developmental disabilities from such consequences.
9 Our investigation also revealed that there are adults with both developmental disabilities and complex medical conditions who are unable to access necessary community supports and services. For instance, 20-year-old Stella has a brain stem dysfunction and is non-verbal, incontinent and unable to move her limbs. She uses a wheelchair, is dependent on tubes for feeding and breathing, and requires constant supervision and suctioning to prevent sudden death. With no compatible local placements available, Stella’s family spent years on the verge of collapse. Similarly, 25-year-old Steven is medically fragile and completely dependent on others for all aspects of his care. His exhausted family continues to wait anxiously for resources to satisfy his urgent needs. The Ministry must do more to co-ordinate and plan care across ministries and communities to avert crises in such medically complex cases.
10 During our investigation, we heard from hundreds of beleaguered families at the breaking point. Many caregivers suffer from serious medical conditions arising from chronic physical and mental strain, and/or are elderly and terrified about what will become of their loved ones when they are no longer able to care for them. We also received multiple complaints about families held hostage in the home, victims of violence at the hands of loved ones who urgently require more intensive services and supports. Transition to adulthood is particularly stressful for individuals with developmental disabilities. No longer eligible for educational and children’s sector services, they often experience negative behavioral changes. Frequently, their families descend into crisis without stable, dependable, and consistent supports.
11 Caregiver exhaustion, illness, aging and death have also predictably led to cases of abandonment and homelessness. For instance, despondent parents relinquished care of their 19-year-old son, Serge, who has multiple diagnoses and functions at the cognitive level of a two-year-old, when escalating emergencies led them to conclude they could no longer safely support him at home. In the case of 41-year-old Cindy, who has a dual diagnosis and cognitive capacity of a young child, she waited seven years on a waitlist for a community placement, only to find herself on the brink of homelessness after her mother’s death. An aging aunt and uncle stepped in to provide temporary care. However, after Cindy’s uncle died, her grieving aunt could no longer cope and eventually gave up trying, leaving Cindy with temporary respite providers. The Ministry needs to engage in rigorous monitoring and supportive intervention to help break the cycle of abandonment and homelessness that plagues the developmental services sector.
12 Since our Office began this investigation in November 2012, the government committed in its April 2014 budget to invest an additional $810 million over three years to strengthen services and supports in the developmental services sector bringing current spending in the sector to $2 billion annually. The Ministry has also taken steps to improve how it responds to situations of crisis and administers the process for urgent access to services. However, progress has been incremental. Much more needs to be done to bridge the significant service gaps.
13 In my opinion, the Ministry’s response to urgent situations involving adults with developmental disabilities and its administration of the process to address crisis cases has been unreasonable and wrong. I have made 60 recommendations for reform, including a requirement that the Ministry report back on its progress in implementing necessary changes.
14 The Ministry has acknowledged that despite its efforts to transform the developmental services system to support personal choice, independence, and inclusion, some unacceptable situations identified in my report continue. In responding to my findings, it has fully committed to working with our office, individuals, families, and the developmental services sector to improve outcomes for adults with developmental disabilities. The Minister has personally agreed to all of my recommendations and the Ministry has provided a detailed response on how they will be implemented. I am encouraged by these developments and acknowledge the progress that has already been made in recent years to improve the developmental services system. I believe that the Ministry is well intentioned and earnest, but recognize that systemic flaws persist. I intend to closely monitor the Ministry’s success in meeting existing system challenges.
15 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 towards a consistent, co-ordinated, collaborative, and responsive developmental services system, able to effectively and humanely meet the needs of individuals and families in crisis.
16 In 2012, the Ministry of Community and Social Services estimated that 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 – known as “dual diagnosis.” For many years, our Office has received complaints about the Ministry’s response to situations of urgency and crisis involving adults with developmental disabilities and dual diagnosis. We have addressed individual concerns and met regularly with senior Ministry officials to discuss complaint trends. Despite these efforts, complaints about developmental services continued to rise, from 35 in 2010, to 45 in 2011, to 64 by mid-fall 2012.
17 Given the steady increase in complaints, the Special Ombudsman Response Team (SORT) conducted a preliminary assessment. Our Office notified the Ministry on November 28, 2012, and publicly announced the next day, that a systemic investigation would be conducted into how it responds to situations of urgency or crisis involving adults with developmental disabilities, and how it administers the process for co-ordinating, monitoring, and facilitating access to services for adults with developmental disabilities in situations of crisis.
18 Eight investigators, under the direction of the Director of SORT and assisted by general counsel, carried out the investigation, supported by a dedicated team of four investigators and seven Early Resolution Officers, who worked to resolve compelling individual complaints parallel to the systemic investigation. To date, we have addressed 1,436 individual cases since the launch of the investigation. The Director of Investigations and general counsel also met regularly with senior Ministry officials to identify trends and discuss egregious cases. The arrival of a new Assistant Deputy Minister for the Community and Developmental Services Division in the fall of 2013 signalled a positive change in the Ministry’s approach to crisis cases in the developmental services sector. Since that time, our Office has been able to facilitate resolution of many complex and urgent cases working in collaboration with Ministry officials. However, underlying systemic problems persist.
19 We conducted 221 interviews, including with assistant deputy ministers, regional directors, community program managers, senior program advisors, and senior policy analysts from the Ministry’s regional and corporate offices, and Developmental Services Ontario officials. We also spoke with stakeholders, including transfer payment service agencies, unions, hospitals, Local Health Integration Networks, police, and groups such as Community Living Ontario, Autism Ontario, the Centre for Addiction and Mental Health, and the Ontario Independent Facilitation Network.
20 The team also researched how other jurisdictions approached issues relating to services for adults with developmental disabilities in crisis. We found that while systems vary, other jurisdictions face similar challenges in meeting the needs of these individuals.
21 SORT investigators visited six of the original nine regions established by the Ministry for the provision of developmental services (there are now five). The selection of regions to visit was based on complaint volume, either high or low, as well as geographic location.
22 In total, 1,436 families, individuals and stakeholders contacted our Office to comment about adult developmental services and to share their stories and concerns with us. Some 191 complaints related to individuals living with dual diagnosis.
23 We obtained and reviewed more than 24,000 documents from the Ministry, including files relating to specific urgent situations. We requested additional documents and updates throughout the investigation, amounting to nearly 1,600 more documents. We also received and reviewed a number of submissions from stakeholders and complainants. The Ministry co-operated fully with our investigation.
24 Although staff worked tirelessly to address individual cases and raise systemic trends with senior Ministry management during our investigation, it was uniquely challenging. It was conducted against a backdrop of evolving developmental services policy and funding initiatives, and involved a system that proved multi-faceted and complex. The systemic investigation was extensive, and as it progressed, our efforts served as a catalyst for many positive improvements. Our interviews and discussions with senior Ministry officials helped propel the creation of a standardized urgent response process to facilitate more consistent and effective resolution of crisis cases. Our attempts to raise awareness for distressed individuals lost in the system led to a greater willingness on the part of Ministry officials to intervene to provide help. One of the most significant changes we witnessed was an increased focus on the part of the Ministry on finding residential supports for individuals with complex needs. During the investigation, the Ministry helped 20 individuals who had been unnecessarily institutionalized in hospitals secure homes in their communities. These and other reforms are reviewed in this report.
25 The social services system is vast and involves multiple ministries and programs affecting tens of thousands of individuals with a diverse range of developmental disabilities, cognitive abilities, and capacity for making personal choices and living independently. In planning for this investigation, many serious issues of concern were raised by stakeholders. However, given our limited resources, and the compelling and urgent nature of crisis situations that we identified, we focused our attention on those adults most in need. For these individuals, a chronic lack of supports and services has deprived them and their families of practical options or any realistic chance for self-determination.
26 Significant concerns remain about such matters as inadequate services for high-functioning individuals with Autism Spectrum Disorder, who require assistance but do not qualify for developmental services, and the general lack of day and employment programs. The sufficiency of staff training and retention in the developmental services sector was also identified as a chronic problem. We continue to monitor these issues and work with the Ministry to address trends in complaints. However, the focus of this investigation was on services and programs for those with complex needs in urgent situations. Many of these vulnerable individuals found themselves living in untenable circumstances as a result of system failure. Their stories were profoundly compelling and clearly highlighted a need for systemic change.
27 As part of our investigation, we monitored parallel inquiries, audits and recommendations addressing various aspects of the developmental services sector. These reviews were instructive and provided significant insights complementing our own investigative findings relating to adults with developmental disabilities in crisis.
28 A Select Committee on Developmental Services was established by the Ontario Legislative Assembly on October 3, 2013, to address the educational, workplace, social, housing and other support needs of children, youth, and adults with developmental disabilities or dual diagnosis across the province. The Select Committee heard from more than 140 presenters at 14 public hearings, and received more than 300 submissions.
29 In July 2014, the committee issued its final report, Inclusion and Opportunity: A New Path for Developmental Services of Ontario, with 46 recommendations for reform. In its report, the committee stated:
Above all, the Committee heard repeatedly that individuals and families who need developmental services and supports are in crisis. We heard that after struggling to obtain services and enduring waitlists for years, many families feel pushed to the brink of disaster. Only when they are forced into crisis are they able to access desperately needed assistance. When that happens, others are bumped further down the waitlists.
30 The Select Committee’s key recommendations relating to adults with developmental disabilities included eliminating the waitlists for services and supports; creating a 10-ministry inter-ministerial committee tasked with eliminating all waitlists in 12 months; better data collection and co-ordination; ensuring continuity of funding from the children’s to the adult system; improved services and co-ordination for individuals with complex needs, particularly those living in remote communities; improved health, dental care and education; creative housing solutions; and expansion of respite and day programming.
31 The Minister of Community and Social Services responded to the committee on October 28, 2014, indicating that most of its recommendations would be implemented. Although recommendations to transform developmental services and supports into mandatory entitlements and to eliminate all waitlists were rejected, the government’s 2014-2015 budget dedicated $810 million over three years to strengthen and increase the range of government-funded developmental services and supports.
32 In 2014, Ontario’s Auditor General reported on the results of an audit conducted into whether the Ministry of Community and Social Services has effective mechanisms to meet the residential needs of individuals with developmental disabilities in a cost-effective manner, and to monitor service providers’ compliance with regulations, policies and contractual obligations.
33 Many of the Auditor General’s findings parallel our observations relating to inconsistency of access to – and lengthy waitlists for – residential placements in the community. The Auditor General made 11 recommendations to the Ministry, including that it develop a consistent prioritization process and improve the management of wait times for residential services.
34 In response to the Auditor General’s recommendations, the Ministry indicated that it was building on the work of existing community prioritization processes to promote greater consistency and fairness in the introduction of provincially consistent prioritization.
35 Guy Mitchell was 38 years old when he drowned in a cistern in Ancaster on April 29, 2012. He had been living with a family in a host family placement, along with another man with developmental disabilities and an 11-year-old girl with autism. A coroner’s inquest was held in July 2015 to examine the events surrounding his death. The inquest resulted in 16 recommendations, released on July 24, 2015, which were addressed to multiple ministries and focused on improving the circumstances and monitoring relating to placements of adults with developmental disabilities in host family homes. The Ministry of Community and Social Services implemented new Host Family Program policy directives in April 2016, including rules on screening criteria for host families and enhanced monitoring requirements. It has also established one new working group and is using two existing working groups to address the inquest recommendations, including two inter-ministerial and stakeholder groups, one focused on protecting vulnerable individuals and the other directed at advising on improvements to the host family program. In addition, the Ministry is using an existing working group of ministerial and stakeholder representatives to discuss quality assurance measures applying to service agencies.
36 Jamie Hawley died at the age of 41 on May 26, 2008, from a combination of pneumonia, starvation, and infected bedsores. Jamie was non-verbal with a mental age around seven. He also lived with several physical disabilities, including partial paralysis, requiring him to use a wheelchair. Jamie’s condition steadily declined after his brother removed him from a community placement and took over his care in 2000. While Jamie’s circumstances were raised with several authorities, the Developmental Services Sector lost track of him, as a result of frequent moves. By the time he died, Jamie was suffering the consequences of chronic neglect and weighed only 57 pounds. After Jamie’s death, his brother was convicted of manslaughter and sentenced to 20 years in jail. A coroner’s inquest was held in December 2015, and 17 recommendations were issued in February 2016, addressed at preventing similar tragedies. The jury’s recommendations included a call for proper discharge planning and monitoring by service agencies, screening of caregivers, increased information sharing amongst service providers and public officials, and an effective system for reporting risks of harm to vulnerable individuals.
37 In the 1800s, from a medical and social standpoint, there was little distinction in the treatment of those with intellectual and mental health conditions. In the early part of the century, adults with mental and developmental disabilities who could not be cared for in their family homes often found themselves housed in jails. In 1839, the Ontario government passed An Act to Authorise the Erection of an Asylum within this Province for the Reception of Insane and Lunatic Persons. In 1841, Ontario opened its first “asylum” under this Act, initially located at the Old York Jail in Toronto, and eventually moved to 999 Queen Street.
38 In 1876, the first large-scale segregated asylum for individuals with developmental disabilities was established in a rural setting in Orillia (later known as the Huronia Regional Centre). Over the next century, the demand for residential services increased exponentially and additional institutions were founded across the province. These facilities were administered on a medical model through the Department of Health, (now the Ministry of Health and Long-Term Care). By the 1970s, there were 16 institutions in Ontario, serving more than 10,000 individuals with developmental disabilities.
39 In the 1950s and 1960s, public concern emerged over the overcrowded and deteriorated conditions in Ontario’s residential institutions. The “community living” movement was also spreading across North America, promoting participation by those with developmental disabilities in the community rather than in isolated institutional environments.
40 In 1955, the Ontario government passed the Rehabilitation Services Act, which provided for a full range of services for individuals with physical and developmental disabilities. Various community-based programs run by private agencies and family members emerged, funded by the Department of Public Welfare (now the Ministry of Community and Social Services).
41 With the advent of Ontario’s Human Rights Code in 1962 and the UN Declaration of the Rights of Persons with Intellectual Disabilities in 1971, came greater recognition of the rights of individuals with developmental disabilities. By the 1970s, increased emphasis was placed on improving the programs and services available to institutional residents. In addition, there was growing support from within the evolving disability rights movement and academia for replacement of institutional care with community supports.
42 In 1974, Ontario brought in the Developmental Services Act, which established a framework for the creation, funding, and operation of community services for people with intellectual disabilities. Responsibility for operation of Ontario’s institutions also shifted from the Ministry of Health to the Ministry of Community and Social Services. In addition, Ontario established an Adult Protective Services Worker program, to provide client advocacy, case management and counselling services for individuals with developmental disabilities living in the community. Workshop programs also began to appear in community-based settings.
43 The transition from a medical and institutional services model to community-based programing for individuals with developmental disabilities gained momentum in 1977, when the Ontario government launched its first multi-year plan to increase community supports and decrease reliance on institutional care. By 1982, five provincial institutions had closed. In 1987, the Ministry of Community and Social Services announced that within 25 years, it planned to shutter all of the remaining residential facilities.
44 As the Ministry moved forward with its deinstitutionalization plans, it increased financial supports for those living within the community. In 1990, the Special Services at Home program, which provided supports to help children with physical or developmental disabilities live at home with their families, was expanded to include adults with developmental disabilities.
45 In 1996, the Ministry of Community and Social Services launched its “Community Living Initiative,” resulting in some 1,000 individuals moving into the community, and by 2000, three more institutions had closed. In 2004, six more institutions were decommissioned, and the remaining facilities were no longer admitting residents. That was also the year the government commenced an initiative to transform the adult developmental services sector to streamline service delivery and provide more equitable access across the province.
46 In 2008, the province introduced a new model for provision of supports and services in the developmental services sector. On March 31, 2009, the last institution for the care of individuals with developmental disabilities closed its doors.
47 Ontario’s institutional system for individuals with developmental disabilities has left a bitter legacy. In recent years, there have been a series of revelations about dehumanizing abuse suffered by former residents. Several class action lawsuits were filed and settled on their behalf.<