Contents

List of Abbreviations   1

Committee Mandate   2

Introduction   3

Guiding Principles   4

No More Waitlists  4

Oversight and System Accountability  4

Empowering Individuals, Families, and Communities  4

Building Capacity  4

Inclusion and Opportunity  4

Oversight  4

System Accountability   5

Developmental Services Ontario Organizations  5

Data Collection   7

Empowering Individuals, Families, and Communities   8

Person-Directed Planning and Individualized Life Plans  8

Supported Decision-Making  8

Independent Planning  8

Eligibility  9

Direct Funding  10

Service Agencies in the Community  10

Building Capacity   11

Dual Diagnosis  11

Primary and Dental Care  12

Fetal Alcohol Spectrum Disorder (FASD) and Autism
Spectrum Disorder (ASD) 13

FASD   13

ASD   13

Remote and Rural Communities  14

First Nations Communities  14

Inclusion and Opportunity   15

Education (Primary and Secondary) 15

Postsecondary Education and Skills Training  16

Employment 17

Housing  18

Respite  19

Day Programs  20

Conclusion and Follow-up   20

Consolidated List of Recommendations   21

 

 

Appendix A   26

Preceding Developments  27

Committee Meetings  27

Appendix B   29

Schedule of Public Hearings  30

List of Witnesses and Submissions  31

Appendix C   43

List of Developmental Services Ontario Offices  44

 

 

List of Abbreviations

 

 

Committee Mandate

On October 3, 2013, the Legislative Assembly of Ontario gave unanimous consent to a motion to appoint a Select Committee on Developmental Services that would consider and report to the House its observations and recommendations with respect to the urgent need for a comprehensive developmental services strategy to address the needs of children, youth and adults in Ontario with an intellectual disability or who are dually diagnosed with an intellectual disability and a mental illness, and to coordinate the delivery of developmental programs and services across many provincial ministries in addition to the Ministry of Community and Social Services. In addition, in developing its strategy and recommendations, the Committee would focus on

· the elementary and secondary school educational needs of children and youth;

· the educational and workplace needs of youth upon completion of secondary school;

· the need to provide social, recreational and inclusionary opportunities for children, youth and adults;

· the need for a range of available and affordable housing options for youth and adults;

· the respite and support needs of families; and

· how government should most appropriately support these needs and provide these opportunities.

 

 

Introduction

The Select Committee on Developmental Services is pleased to present its final report. Investigation of developmental services began when the Select Committee was created in October 2013.[1] Over the months that followed, the Committee heard from more than 140 presenters at 14 public hearings and received over 300 submissions ranging from handwritten letters and emails to reports, articles, and videos. Our March 2014 Interim Report summarizes what the Committee heard.

The public hearings and submissions received by the Committee illustrate the range of challenges and successes experienced across this province by persons with developmental disabilities and their families. We were humbled by the extraordinary people who shared their personal struggles to obtain the services and supports needed for family members with developmental disabilities or a dual diagnosis. Presenters described serious barriers to support across the province including long waitlists for many services; repeated, onerous, and invasive assessments; the abrupt termination of children's services at the age of 18 and school-based services at age 21; unmet health needs due to inadequate primary and dental health care; and a serious lack of services and supports in northern, remote, and First Nations communities.

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.

The Committee recognizes that the situation is urgent. We are deeply troubled and alarmed by the range of barriers confronting persons with developmental disabilities or a dual diagnosis. We firmly believe that everyone has the right to full social inclusion, and to receive the services and supports they need without delay. We note that this right was recognized by the Ontario Legislature when it passed the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008 (SIPDDA).

The recommendations we have made in this report touch upon almost every aspect of the developmental services sector. We recognize that government initiatives are already underway in relation to some of the recommendations below, including recent announcements designed to enhance the provision of developmental services. Nevertheless, we believe that further improvements must be made in order to achieve better outcomes for the people of this province.

Guiding Principles

In developing our recommendations, the Members of the Committee were guided by five inextricably linked principles.

No More Waitlists

The Committee firmly believes that all people have a right to appropriate and timely supports and services throughout their lives. The provision of developmental services and support should be mandated and waitlists eliminated. The elimination of existing waitlists must be the top priority for government.

Oversight and System Accountability

The developmental services system must be accountable to the people of Ontario while also being responsive to their needs. We heard repeatedly during the hearings that there should be "more service, less system" in the provision of developmental support. To this end we have made a number of recommendations aimed at improving system oversight and accountability while emphasizing client-focused service.

Empowering Individuals, Families, and Communities

The United Nations Convention on the Rights of Persons with Disabilities recognizes that persons with disabilities have the right to individual autonomy and independence, including the freedom to make their own choices. Many people who spoke to the Committee used the phrase "nothing about us without us" to describe their desire to plan for the future and make decisions about their own lives. Individuals and families want more autonomy in designing their services and supports while communities want to create innovative solutions to meet local needs. The recommendations in this report aim to empower individuals, families, and communities by providing them with more flexibility to create individualized, culturally and linguistically appropriate, and community-based solutions.

Building Capacity

The developmental services sector is currently unable to meet demand and capacity must be built in a number of areas. This requires not only an injection of funding, but also a more appropriate allocation of resources. We have made recommendations to build capacity in primary care, housing, employment, education, and other areas, so that support is available in the right place at the right time.

Inclusion and Opportunity

People with developmental disabilities want, and have the right to expect, social inclusion; that is, they have the right to contribute to and be full participants in society. The Committee recognizes that social inclusion means ensuring that people with developmental disabilities have opportunities for education, employment, and housing, as well as social and recreational activities.

Oversight

The developmental services sector is complex, involving the provision of a wide variety of services and supports, delivered by ten different ministries.  Integration and coordination of the developmental services sector must begin at the very top; therefore it is crucial that one minister assumes responsibility for oversight of developmental services. We believe that only a committee at the ministerial level will have the resources, perspective, and incentive to accomplish the goals set out below.

The first priority for this ministerial committee is to eliminate all waitlists for developmental services and supports.

The Select Committee therefore recommends that:

1. A new Inter-Ministerial Committee on Developmental Services (IMCDS) be created with the mandate of implementing the recommendations in this report.

The Minister of Community and Social Services be answerable for the progress of the IMCDS and the implementation of the recommendations in this report.

In addition to the Minister of Community and Social Services, the IMCDS be comprised of the

a. Minister of Children and Youth Services;

b. Minister of Health and Long-Term Care;

c. Minister of Education;

d. Minister of Municipal Affairs and Housing;

e. Minister of Aboriginal Affairs;

f. Minister of Community Safety and Correctional Services;

g. Minister of Training, Colleges and Universities;

h. Minister of Economic Development, Trade and Employment; and

i. Attorney General.

The IMCDS convene immediately and as its first task eliminate all waitlists for developmental services and supports within 12 months, and outline an achievable plan, including goals and timeframes, for the implementation of the other recommendations in this report.

The IMCDS report on its progress to the Legislative Assembly within 18 months and every 12 months thereafter; and that these reports be permanently referred to the Standing Committee on Social Policy.

System Accountability

Developmental Services Ontario Organizations

In 2004 the government of Ontario embarked on a process of transforming the adult developmental services sector, aiming to streamline service delivery and provide more equitable access to people across the province. One of the key elements of this transformation was the establishment of nine regional Developmental Services Ontario organizations (DSOs). The DSOs were created to provide a single-window point of access to adult developmental services throughout the province, using consistent criteria for eligibility and needs-based assessments.

In spite of this vision, the Committee heard repeatedly that the implementation of the DSOs has not resulted in better or easier access to support. In fact, many families feel that the DSOs are duplicating assessments and impeding access to support. Agencies and individuals told us that the establishment of the DSOs has severed long-standing connections between families and local agencies, making it harder for families to navigate the system and for agencies to provide flexible solutions tailored to individual needs.

In the Committee's view, the DSOs should be robust clearinghouses for information and resources-the channel through which individuals, families, and their independent planners access information about the full range of both publicly and privately-funded services and supports. At the same time, the DSOs should act as "system navigators" that connect individuals and their families to these services and supports. The DSOs must reflect, and be sensitive to, the diversity of the communities they serve. Above all, the DSO mandate should be redefined with the goal of becoming more client-centred, focusing on person-directed planning and individualized support.

The Select Committee therefore recommends that:

2. The mandate and operations of the DSOs be realigned to emphasize system navigation, building connections between families and community agencies, and information dissemination.

3. As system navigators, the DSOs must work closely with youth developmental service providers so that young adults are seamlessly connected to transitional and long-term support before they age out of the school system.

4. As part of the realigned DSO mandate, the Quality Assurance Measures (QAM) include evaluations of efficiency and client-centred effectiveness, and a new mechanism be established for public reporting of regular Quality Assurance reviews.

5. An appeals process be established so that DSO decisions regarding an individual's diagnosis, eligibility for support, and allocation of funding can be appealed.

We recognize that the DSOs face a number of operational impediments that hinder their ability to fulfill their mandate. In particular, the Committee heard that almost three years after the creation of the DSOs, the database meant to assist DSOs and local communities with service planning is still not fully operational.

The Select Committee therefore recommends that:

6. The Ministry of Community and Social Services resolve outstanding operational issues affecting the DSOs immediately.

7. The Ministry of Community and Social Services resolve operational issues with the provincial database immediately and provide appropriate training to DSO staff in use of the database.

Data Collection

The Committee was frustrated by the lack of available, reliable data in almost every area of the developmental services sector. We were surprised to hear that there is no coordinated data collection between the many ministries involved in providing developmental services and even more troubled to hear that even where such data is collected, it is rarely shared between ministries.

Comprehensive, coordinated, and timely data collection is essential to effective planning and delivery of supports and services. Without such information, it is impossible for the ministries to accurately assess demand for developmental services and how well needs are being met.

The Select Committee therefore recommends that:

8. Comprehensive data related to the demand for and provision of developmental services from across Ministries, DSOs, and service agencies be collected, harmonized, and shared within and beyond the sector.

9. The annual collection of data from the entire province (especially northern and remote communities) specifically include the following:

· the number of adults with developmental disabilities;

· the number of adults with a dual diagnosis;

· the number of children with developmental disabilities;

· the number of children with a dual diagnosis;

· the length of waitlists for specific services and supports;

· the number of people with developmental disabilities or dual diagnosis who are incarcerated;

· the number of people with developmental disabilities inappropriately housed (for example, in hospital or long-term care beds); 

· the number of "abandonment" cases; and

· the cultural and linguistic diversity needs of the province.

Empowering Individuals, Families, and Communities

Person-Directed Planning and Individualized Life Plans

The Committee recognizes that there can be no one-size-fits-all approach to providing developmental services; rather, individuals have the right to appropriate support to chart their own paths in all areas of their lives. This person-centered approach recognizes the basic principles of self-determination and social inclusion for people with developmental disabilities.

To achieve this, we believe that there should be a fundamental shift in the way that support is offered to people with developmental disabilities. Rather than the current approach of forcing people to choose from a limited slate of options available through direct funding and agency-based support, we believe that every person should be entitled to an individualized life plan customized to meet their specific needs, including cultural and linguistic needs where relevant. Individualized life plans enable people to design the support model they feel provides them with the best opportunity for inclusion. The Committee notes that versions of this model have been adopted in other jurisdictions, including British Columbia and Britain.

Supported Decision-Making

The concept of supported decision-making is a key element in the discussion of person-directed planning. As recognized by the United Nations Convention on the Rights of Persons with Disabilities, the supported decision-making model allows persons with developmental disabilities to retain and exercise their legal decision-making capacity with the support of a trusted person or network of people. The Law Commission of Ontario is currently studying potential reforms to Ontario's laws regarding capacity and guardianship and is exploring, among other issues, greater use of partial guardianship and alternatives to the current guardianship system (under both supported and substituted decision-making models).

The Select Committee therefore recommends that:

10. The IMCDS develop an implementation plan for the Law Commission of Ontario's recommendations with respect to supported decision-making once they are released.

Independent Planning

The Committee heard repeatedly that with adequate planning support, many individuals and their families are able to define and prioritize their own needs. However, we also heard feedback from families that affordable and independent planning support is not readily available. Without it, they feel pushed toward inappropriate options and discouraged from developing their own creative solutions.

The Committee feels there is a need to connect individuals and their families with an independent planner as early as possible, at the point when a developmental disability diagnosis is made. The independent planner would help individuals with developmental disabilities and their families construct their own custom-built plan, guiding them through key transition points so that the individual is supported throughout the course of his or her life. It is essential that the services of the independent planner be affordable, culturally appropriate, and without any vested interest in the services and supports being proposed.

The Select Committee therefore recommends that:

11. The Ministry of Community and Social Services support independent planning organizations whose role is to guide individuals–with the help of their families, friends, and support network–through key transition points so that the individual is supported throughout the course of his or her life.

Eligibility

DSOs determine a person's eligibility for developmental support based on the SIPDDA definition of "developmental disability." A person has a developmental disability under SIPDDA if he or she has significant limitations in both cognitive functioning and adaptive functioning, provided that those limitations originated before the person turned 18, are likely lifelong in nature, and affect areas of major life activity.

The general regulation under SIPDDA incorporates the use of standardized intelligence testing–that is, an IQ test–in defining a "significant limitation in cognitive functioning." Individuals will meet this requirement where

· their overall IQ score is 70 or below;

· their scores in two IQ test areas are less than 70 and they have a history of needing rehabilitative support; or

· a clinical determination by a psychologist or psychological associate finds that they demonstrate significant cognitive limitations and they have a history of needing rehabilitative support.

Parents and caregivers across the province consistently expressed concern to the Committee about the methodology used to assess a person's eligibility for adult developmental services. They said that eligibility criteria based on cognitive limitation unfairly excludes individuals who have an IQ above 70 but poor adaptive functioning abilities.

We agree. A person with a developmental disability or dual diagnosis should be eligible for developmental services and supports if he or she needs assistance to participate fully in the community.

The Select Committee therefore recommends that:

12. The definition of developmental disability and eligibility for support be based solely on an assessment of adaptive functioning and not on cognitive functioning or IQ.

Direct Funding

The Committee heard a number of concerns about direct funding. Special Services at Home (SSAH) direct funding is abruptly terminated when individuals turn 18 even though, as families across the province told us, children's needs do not suddenly change on their 18th birthday. Families must then apply for new funding from the Passport program, even though both the SSAH and Passport programs are offered through the MCSS. We heard that families want the autonomy to use Passport funding flexibly in ways that best meet their needs, such as for transportation, for example. The Committee also heard that sections of the SIPDDA setting out the operation of new direct funding agreements, and the direct funding entities designed to administer them, have still not taken effect.

The principles of person-directed planning and individualized life plans indicate that individuals and families need flexibility and autonomy to decide how best to use the direct funding they receive. Our recommendations aim to enhance the flexibility and portability of direct funding.

The Select Committee therefore recommends that:

13. The IMCDS ensure that recipients of SSAH funding not lose that funding before Passport funding is in place and an individualized life plan has been completed with the independent planner.

14. There be more flexibility in allowable uses of Passport funding to meet individual needs.

15. The implementation of full direct funding options be fast-tracked.

Service Agencies in the Community

The Committee heard that the ability of service agencies to deliver effective support to families is compromised by a variety of systemic issues, such as proxy pay equity obligations, which are creating a wage gap between agencies offering the same services within the sector.[2]

The Committee also heard from staff who provide care to people with developmental disabilities in a variety of settings, including day programs and residential care. They told us that low staffing ratios can compromise their health and safety and that of the people for whom they care, as well as the agency's ability to offer some programs.

Community agencies told the Committee that the rigid application of prescribed Quality Assurance Measures (QAM) compromises the quality of service they provide to families, while some agencies questioned the applicability of the QAM to the work that they do. Finally, the Committee heard that the single-year funding commitments made by the MCSS make it difficult for service agencies to build appropriately staffed and sustainable programs over the long term.

The Select Committee therefore recommends that:

16.  A plan be developed to ensure that legal pay equity obligations are met.

17. A framework be developed to evaluate the QAM applying to service agencies with a view to increasing their relevance, practicality, and flexibility.

18. Best practices for staffing ratios in long-term care and group homes be evaluated to ensure the safety of residents and staff.

19. The MCSS implement long-term multi-year funding commitments to service agencies.

Building Capacity

Dual Diagnosis

An estimated 40 percent of people with developmental disabilities have a concurrent mental health diagnosis, also known as a "dual diagnosis." The Committee heard that individuals with a dual diagnosis have complex needs but often fall through the cracks: the developmental services sector is unable to accommodate their mental health needs, and mental health services are not equipped to accommodate people with developmental disabilities.

The Committee believes that when developing and providing services and supports for people with developmental disabilities it is vital to build capacity to address the specific needs of people with a dual diagnosis.

The Select Committee therefore recommends that:

20. Capacity for providing care be built that meets the specific needs of dually diagnosed individuals through increased programs and services, and professional training of primary care, dental care, and direct service providers.

21. The use of mental health courts and other alternative diversion mechanisms be encouraged for individuals with a dual diagnosis in the justice system.

22. The recommendations made in the Joint Policy Guideline for the Provision of Community Mental Health and Developmental Services for Adults with a Dual Diagnosis be implemented.[3]

Primary and Dental Care

The Committee heard from medical researchers and specialists who explained that people with developmental disabilities or a dual diagnosis face significant barriers to appropriate health and dental care. As a consequence, this population is less likely to receive preventative care and has unmet health needs.

The situation is compounded by a growing number of seniors with developmental disabilities or a dual diagnosis. The current geriatric care system has limited experience caring for patients with developmental disabilities, and the developmental services sector has difficulty meeting the needs of older people.

Medical experts explained that the standard of care is interdisciplinary care offered by inter-professional health teams. They noted the importance of building capacity in primary care and of the need for specific recognition of those with complex developmental needs in provincial health, mental health, and social services. It is equally necessary to have better access to early identification, diagnosis, and timely treatment and services for all Ontarians, with particular attention to those living in remote and smaller communities.

The Select Committee therefore recommends that:

23. The IMCDS develop an integrated provincial strategy to build capacity and coordinate services in primary and dental care for people with developmental disabilities or a dual diagnosis throughout the lifespan, from early diagnosis to geriatric care, including

a. benchmarks and targets for the number and types of health professionals required;

b. general knowledge of and training in developmental disabilities and dual diagnosis to primary care and dental care professionals;

c. more interdisciplinary, inter-professional health teams; and

d. collaboration between interdisciplinary health teams, early years centres, family health care teams, family literacy centres, children's treatment centres, schools, dental clinics, and health clinics at postsecondary institutions.

Fetal Alcohol Spectrum Disorder (FASD) and Autism Spectrum Disorder (ASD)

While all the recommendations in this report apply equally to FASD and ASD, the Committee heard from many presenters about some specific challenges posed by these diagnoses. We have therefore made some additional recommendations aimed at building capacity in these areas.[4]

FASD

A number of presenters focused on FASD which is one of the most common developmental disabilities (thought to affect an estimated 130,000 children and adults in Ontario). Caused by maternal alcohol use during pregnancy, FASD-unlike other developmental disabilities-is entirely preventable. Presenters from the Registered Nurses' Association of Ontario noted that Ontario is the only province without a strategy to tackle FASD and warned that it is important to act now before the rising rates of binge drinking among young people result in higher rates of this disorder.

The Committee emphasizes the importance of ensuring access to early diagnosis and intervention to all Ontarians, and of recognizing FASD as a developmental disability in all sectors including the education, health, and justice systems.

The Select Committee therefore recommends that:

24. There be a coordinated provincial strategy to address FASD through appropriate and timely support services in all communities and regions, including a province-wide public health campaign to raise awareness of the dangers and impact of maternal alcohol use.

25. The use of mental health courts and other alternatives be encouraged for individuals with FASD in the justice system.

ASD

ASD is also one of the most common developmental disorders, affecting an estimated one in 68 children according to the most recent research from the United States. The Committee heard evidence that early diagnosis and intervention is highly cost effective. It improves educational and social outcomes, and reduces the need for ongoing intensive services throughout the lifespan. However, many presenters noted that there is wide variation in the services and supports available to people with ASD depending on where they live in the province.

Presenters explained that individuals with ASD face some unique challenges. Because the features of this diagnosis may be subtle, people with ASD are sometimes described as an "invisible population." Many of these individuals are refused services by the developmental disability sector because they have an IQ over 70, and by the mental health sector because of their developmental disability. Presenters stressed that even with an IQ over 70 many people with ASD still need access to a range of developmental services and supports.[5]

The Select Committee therefore recommends that:

26. There be a coordinated provincial strategy to address ASD through appropriate support services for individuals in all communities and regions, including

a.  access to early diagnosis and interventions;

b.  professional accreditation for autism service providers; and

c. consistent evaluations and benchmarks for implementation of ASD therapeutic interventions.

Remote and Rural Communities

The Committee heard that there are too few services and supports available locally to people living in smaller communities. Many presenters noted the challenges presented by geography and costly transportation, including the seasonal costs of transportation for remote communities. Presenters highlighted the need for more day programs, respite care, and residential options to enable people with developmental disabilities to stay in their home communities.

The Select Committee therefore recommends that:

27. The IMCDS encourage the development of local support options to meet the needs of people with developmental disabilities living in northern and remote communities.

First Nations Communities

There is considerable overlap in the challenges faced by people living in northern, smaller, and remote communities and people living in many First Nations communities. The Committee heard that there are few formal developmental services and supports available at the community level, and no provision for community-based case management in remote and northern First Nations communities. Because there is no statistical information available to assess local needs, it is extremely difficult for communities to build a case for support. At the same time, organizations in regional centres serving the north do not have adequate resources to meet the developmental service needs of First Nations communities.

Without access to assessment and early diagnosis, people with developmental disabilities in remote First Nations communities are not eligible for services and supports such as ODSP, Special Services at Home, or Passport funding; special education programs, or other special needs accommodations in the community or in homes. The Committee heard that the impact of this lack of services is devastating to individuals and communities, resulting in a high rate of family and foster home breakdown, and in parents having to relinquish custody of their high needs children.

In Moose Factory, the Committee visited the Billy Bayou Program which provides one-on-one personal support workers for adults with developmental disabilities. The Billy Bayou Program is an example of a community-led initiative that enables people with developmental disabilities to stay in their home communities, near their families.

The Select Committee therefore recommends that:

28. The IMCDS work collaboratively with First Nations to design and implement a strategic and coordinated community-based response to developmental service needs.

Inclusion and Opportunity

Education (Primary and Secondary)

There is widespread support for the inclusion of children and young people with developmental disabilities in the educational system. Many schools offer special education classrooms. Educational Assistants (EAs) who provide one-on-one support make it possible for children with developmental disabilities to be included in mainstream classrooms. Some district school boards offer the option of specialized schools designed specifically to meet the needs of children with developmental disabilities.

Presenters identified a number of areas where inclusive education could be strengthened to ensure that children with developmental disabilities get the support they need to succeed in school. Many presenters noted that teachers, EAs, and other school administrators and staff need more awareness and understanding of developmental disabilities in general, and especially about the two most common developmental disabilities: FASD and ASD.

Parents expressed frustration with the transition their young children experience as they enter primary school. The Community Care Access Centres (CCAC) are currently contracted to offer in-school therapeutic interventions for children with developmental disabilities. This means that professionals from some Children's Treatment Centres are often not permitted to continue providing early intervention therapies to children in the classroom once these children enter primary school. This disrupts the child's pre-established relationships and continuity of care. The Committee heard from the Ministry of Child and Youth Services that in cases where Children's Treatment Centres are permitted through the CCAC to work in schools, there is a much smoother transition into school for young children and their families.

Further, while transition planning is a required component of Individual Education Plans, the Committee heard requests from many families for more assistance with planning for the transition out of secondary school.

The Committee therefore recommends that:

29. EAs be provided for all children assessed as needing an EA, and that EAs have knowledge and training appropriately matched to a child's individual needs.

30. Professional development and training be provided to EAs, teachers, and other school staff to increase awareness about developmental disabilities, including FASD and ASD, as well as about dual diagnosis.

31. The Ministry of Education definitions of "exceptionalities" be modified and updated to include FASD.

32. Direct care service providers and Children's Treatment Centres be permitted to provide in-school services to children.

33. Better information and resources about postsecondary opportunities be provided to school guidance counsellors, school staff, families, agencies and others involved in helping young people to plan for the transition out of secondary school.

34. Parent representatives be allowed to sit on their local Special Education Advisory Committee (SEAC) without having to be members of local associations.[6]

Postsecondary Education and Skills Training

The Committee heard that many young people with developmental disabilities want postsecondary education and skills training. Presenters spoke positively of the many benefits of Community Integration through Co-operative Education (CICE) programs, which enable adults with developmental disabilities to attend college. They asked for more CICE programs in colleges across Ontario, and more spaces for students in these programs.

The Select Committee therefore recommends that:

35. The Ministry of Training, Colleges, and Universities fund a sufficient number of spaces in CICE programs to meet regional demand; actively promote the benefits of CICE programs to Ontario colleges and potential students; and ensure that students have assistance with transportation and other supports they need for successful participation in CICE programs.

Employment

The Committee heard that many people with developmental disabilities are eager to participate in the workforce but that their rate of unemployment is high, even for those individuals with skills training and postsecondary credentials. At the same time we heard a strong business case in favour of hiring employees with developmental disabilities from employer Mark Wafer, a member of the federal Panel on Labour Market Opportunities for Persons with Disabilities.

We strongly believe that many barriers to employment in this area are attitudinal and that employer education and engagement is necessary to taking down these barriers. We recognize that government has a role to play in promoting these activities. Above all, young people must have opportunities to obtain co-op placements and summer jobs, so that they can develop job skills and build their résumés early.

The Committee was also interested to hear about a number of social enterprises that employ people with developmental disabilities or a dual diagnosis.

The Select Committee therefore recommends that:

36. A formal program be developed by the Ministry of Economic Development, Trade and Employment, in concert with the Ministry of Training, Colleges and Universities and Infrastructure Ontario, to educate employers about the economic benefits of hiring employees with developmental disabilities, support private and public employer engagement programs, support social enterprises, and provide online job resources to help match potential employees and employers.

37. The Ministry of Economic Development, Trade and Employment, the Ministry of Education, the Ministry of Training, Colleges and Universities, and Infrastructure Ontario include people with developmental disabilities in youth summer employment and support co-op placements for young people with developmental disabilities during secondary school.

The Committee was concerned to hear that systemic barriers sometimes discourage people from seeking employment. If individuals earn an income their Ontario Disability Support Program (ODSP) may be clawed back or lost altogether. If individuals leave a day program in order to take a job, and then lose the job, they have to return to the bottom of the waiting list for a day program. Given that employment is a vital element of social inclusion we believe that people should not be penalized for seeking employment and that the disincentives for those who wish to work must be removed.

The Select Committee therefore recommends that:

38. The IMCDS assess the interaction of ODSP, Employment Insurance (EI), and developmental services programs with a view to eliminating disincentives and barriers to employment for people with developmental disabilities.

Housing

Of all the issues falling within this Committee's mandate, the lack of appropriate housing for adults with developmental disabilities is one of the most critical, causing a chain reaction reaching far beyond the developmental services sector. The urgency of the housing shortage for people with developmental disabilities or a dual diagnosis is recognized in the Housing Study Group's Ending the Wait report and related recommendations.[7]

Without supported housing options, aging parents are pushed to the breaking point of physical and emotional exhaustion as they continue to care for adult children at home. Individuals who are ready to go home after a hospital stay remain in a hospital bed-sometimes for years-because there is nowhere else for them to go. Long-term care homes are pressured to accommodate young and middle-aged people with developmental disabilities without any medical need for this type of care or any training to support this group of clients. A lack of supported housing also means that some individuals are trapped in a cycle of homelessness and repeated incarceration.

These situations undermine the principles of person-directed planning and social inclusion. The Committee also notes that it costs much more to accommodate people in inappropriate long-term care or hospital beds than it would to provide supported housing options, and removes the bed from those who need the specialized care.  

Individuals and families told the Committee that housing is a transition issue and it is very important to ensure they can plan and prepare for a gradual and safe move out of the family home into an independent or supported living arrangement. The Committee was pleased to hear about a number of innovative housing solutions developed by families and agencies. The Committee believes that such solutions, where they embody the principles of inclusion, person-directed planning, and individual choice, should be supported rather than discouraged.

The Committee notes that prior to the dissolution of the Legislature in May 2014, an inter-ministerial Housing Task Force was appointed to seek solutions for individuals with developmental disabilities.[8] We have specific suggestions regarding the mandate of this Task Force.

 

 

The Select Committee therefore recommends that:

39. The recommendations from the Ending the Wait report be fast-tracked.

40. The Housing Task Force collaborate with the IMCDS, Infrastructure Ontario, municipalities across the province, and concerned individuals, families, and community groups.

41. The Task Force begin work immediately to explore innovative, individualized, affordable, and flexible family- and community-led housing solutions for persons with developmental disabilities and/or a dual diagnosis, with a strong focus on the specific housing needs of older adults. This includes

a. developing both short-term and long-term supporting housing models;

b. developing support and capital funding for purchase and ongoing maintenance of existing residences; and

c. developing successful pilot programs for supported housing.

42. The Task Force report its findings publicly within 12 months and every 12 months thereafter.

43. ODSP reductions for unrelated individuals with developmental disabilities who share accommodation be eliminated.

Respite

The Committee heard from many parents who care for their children (including adult children) on a full-time basis and need some respite support in order to continue doing so. Access to local respite care options, even for a couple of hours a week, may mean the difference between stability and crisis for many families. The Committee heard that flexible and readily available respite care is critical in avoiding family breakdown, income loss, unnecessary hospitalizations, and inappropriate placements in long-term care.

We were concerned to hear that along with facing extremely limited affordable respite options, some presenters felt stigmatized for even requesting respite support. The Committee believes that there should be no stigma in using respite care which provides a much-needed break for parents and families.

For many young adults with developmental disabilities, respite helps to ease the eventual transition out of the family home. In the Committee's view, it is important to extend respite options as part of a housing solution. Presenters told the Committee about a range of individualized respite solutions they would like to see, such as week-on week-off respite, overnight weekend respite, and month-on month-off respite. Building capacity for these kinds of flexible models is essential.

 

 

The Select Committee therefore recommends that:

44. The IMCDS build more capacity for affordable, flexible, age-appropriate, and needs-appropriate respite care spaces; and collaborate with families and community agencies in the development and support of locally-based respite initiatives.

45. Families be able to access respite programs through referrals from professionals such as educators and family physicians.

Day Programs

The lack of affordable day programs for young adults transitioning out of secondary school was identified as another serious gap by families. For those individuals who do not enter postsecondary education or the workplace, there must be opportunities to continue their social, physical, emotional, and intellectual development in their community taking into consideration their age, interests, and abilities.

The Committee was encouraged to hear about successful day program initiatives in communities across the province. We believe in removing barriers to the development of more community-led day programs offering meaningful activities in an inclusive environment.

The Select Committee therefore recommends that:

46. The IMCDS collaborate with families and community agencies to develop and support locally-based day programs. These programs must be affordable and regionally available, and tailored for a range of age groups, interests, activity levels, and needs.

Conclusion and Follow-up

In closing, we wish to express our sincere gratitude to the many individuals, families, agencies, and organizations who generously shared their experiences and suggestions with the Select Committee. We share their expectation that the crisis in the developmental services sector must be addressed immediately. We look forward to the progress that will be made by the Inter-Ministerial Committee on Developmental Services as it implements the recommendations in this report.

 

 

Consolidated List of Recommendations

The Select Committee recommends that:

1. A new Inter-Ministerial Committee on Developmental Services (IMCDS) be created with the mandate of implementing the recommendations in this report.

The Minister of Community and Social Services be answerable for the progress of the IMCDS and the implementation of the recommendations in this report.

In addition to the Minister of Community and Social Services, the IMCDS be comprised of the

a. Minister of Child and Youth Services;

b. Minister of Health and Long-Term Care;

c. Minister of Education;

d. Minister of Municipal Affairs and Housing;

e. Minister of Aboriginal Affairs;

f. Minister of Community Safety and Correctional Services;

g. Minister of Training, Colleges and Universities;

h. Minister of Economic Development, Trade and Employment; and

i. Attorney General.

The IMCDS convene immediately and as its first task eliminate all waitlists for developmental services and supports within 12 months, and outline an achievable plan, including goals and timeframes, for the implementation of the other recommendations in this report.

The IMCDS report on its progress to the Legislative Assembly within 18 months and every 12 months thereafter; and that these reports be permanently referred to the Standing Committee on Social Policy.

2. The mandate and operations of the DSOs be realigned to emphasize system navigation, building connections between families and community agencies, and information dissemination.

3. As system navigators, the DSOs must work closely with youth developmental service providers so that young adults are seamlessly connected to transitional and long-term support before they age out of the school system.

4. As part of the realigned DSO mandate, the Quality Assurance Measures (QAM) include evaluations of efficiency and client-centred effectiveness, and a new mechanism be established for public reporting of regular Quality Assurance reviews.

5. An appeals process be established so that DSO decisions regarding an individual's diagnosis, eligibility for support, and allocation of funding can be appealed.

6. The Ministry of Community and Social Services resolve outstanding operational issues affecting the DSOs immediately.

7. The Ministry of Community and Social Services resolve operational issues with the provincial database immediately and provide appropriate training to DSO staff in use of the database.

8. Comprehensive data related to the demand for and provision of developmental services from across Ministries, DSOs, and service agencies be collected, harmonized, and shared within and beyond the sector.

9. The annual collection of data from the entire province (especially northern and remote communities) specifically include the following:

· the number of adults with developmental disabilities;

· the number of adults with a dual diagnosis;

· the number of children with developmental disabilities;

· the number of children with a dual diagnosis;

· the length of waitlists for specific services and supports;

· the number of people with developmental disabilities or dual diagnosis who are incarcerated;

· the number of people with developmental disabilities inappropriately housed (for example, in hospital or long-term care beds); 

· the number of "abandonment" cases; and

· the cultural and linguistic diversity needs of the province.

10. The IMCDS develop an implementation plan for the Law Commission of Ontario's recommendations with respect to supported decision-making once they are released.

11. The Ministry of Community and Social Services support independent planning organizations whose role is to guide individuals–with the help of their families, friends, and support network–through key transition points so that the individual is supported throughout the course of his or her life.

12. The definition of developmental disability and eligibility for support be based solely on an assessment of adaptive functioning and not on cognitive functioning or IQ.

13. The IMCDS ensure that recipients of SSAH funding not lose that funding before Passport funding is in place and an individualized life plan has been completed with the independent planner.

14. There be more flexibility in allowable uses of Passport funding to meet individual needs.

15. The implementation of full direct funding options be fast-tracked.

16. A plan be developed to ensure that legal pay equity obligations are met.

17. A framework be developed to evaluate the QAM applying to service agencies with a view to increasing their relevance, practicality, and flexibility.

18. Best practices for staffing ratios in long-term care and group homes be evaluated to ensure the safety of residents and staff.

19. The MCSS implement long-term multi-year funding commitments to service agencies.

20. Capacity for providing care be built that meets the specific needs of dually diagnosed individuals through increased programs and services, and professional training of primary care, dental care, and direct service providers.

21. The use of mental health courts and other alternative diversion mechanisms be encouraged for individuals with a dual diagnosis in the justice system.

22. The recommendations made in the Joint Policy Guideline for the Provision of Community Mental Health and Developmental Services for Adults with a Dual Diagnosis be implemented.

23. The IMCDS develop an integrated provincial strategy to build capacity and coordinate services in primary and dental care for people with developmental disabilities or a dual diagnosis throughout the lifespan, from early diagnosis to geriatric care, including

a. benchmarks and targets for the number and types of health professionals required;

b. general knowledge of and training in developmental disabilities and dual diagnosis to primary care and dental care professionals;

c. more interdisciplinary, inter-professional health teams; and

d. collaboration between interdisciplinary health teams, early years centres, family health care teams, family literacy centres, children's treatment centres, schools, dental clinics, and health clinics at postsecondary institutions.

24. There be a coordinated provincial strategy to address FASD through appropriate and timely support services in all communities and regions, including a province-wide public health campaign to raise awareness of the dangers and impact of maternal alcohol use.

25. The use of mental health courts and other alternatives be encouraged for individuals with FASD in the justice system.

26. There be a coordinated provincial strategy to address ASD through appropriate support services for individuals in all communities and regions, including

a. access to early diagnosis and interventions;

b. professional accreditation for autism service providers; and

c. consistent evaluations and benchmarks for implementation of ASD therapeutic interventions.

27. The IMCDS encourage the development of local support options to meet the needs of people with developmental disabilities living in northern and remote communities.

28. The IMCDS work collaboratively with First Nations to design and implement a strategic and coordinated community-based response to developmental service needs.

29. EAs be provided for all children assessed as needing an EA, and that EAs have knowledge and training appropriately matched to a child's individual needs.

30. Professional development and training be provided to EAs, teachers, and other school staff to increase awareness about developmental disabilities, including FASD and ASD, as well as about dual diagnosis.

31. The Ministry of Education definitions of "exceptionalities" be modified and updated to include FASD.

32. Direct care service providers and Children's Treatment Centres be permitted to provide in-school services to children.

33. Better information and resources about postsecondary opportunities be provided to school guidance counsellors, school staff, families, agencies and others involved in helping young people to plan for the transition out of secondary school.

34. Parent representatives be allowed to sit on their local Special Education Advisory Committee (SEAC) without having to be members of local associations.

35. The Ministry of Training, Colleges, and Universities fund a sufficient number of spaces in CICE programs to meet regional demand; actively promote the benefits of CICE programs to Ontario colleges and potential students; and ensure that students have assistance with transportation and other supports they need for successful participation in CICE programs.

36. A formal program be developed by the Ministry of Economic Development, Trade and Employment, in concert with the Ministry of Training, Colleges and Universities and Infrastructure Ontario, to educate employers about the economic benefits of hiring employees with developmental disabilities, support private and public employer engagement programs, support social enterprises, and provide online job resources to help match potential employees and employers.

37. The Ministry of Economic Development, Trade and Employment, the Ministry of Education, the Ministry of Training, Colleges and Universities, and Infrastructure Ontario include people with developmental disabilities in youth summer employment and support co-op placements for young people with developmental disabilities during secondary school.

38. The IMCDS assess the interaction of ODSP, Employment Insurance (EI), and developmental services programs with a view to eliminating disincentives and barriers to employment for people with developmental disabilities.

39. The recommendations from the Ending the Wait report be fast-tracked.

40. The Housing Task Force collaborate with the IMCDS, Infrastructure Ontario, municipalities across the province, and concerned individuals, families, and community groups.

41. The Task Force begin work immediately to explore innovative, individualized, affordable, and flexible family- and community-led housing solutions for persons with developmental disabilities and/or a dual diagnosis, with a strong focus on the specific housing needs of older adults. This includes

a. developing both short-term and long-term supporting housing models;

b. developing support and capital funding for purchase and ongoing maintenance of existing residences; and

c. developing successful pilot programs for supported housing.

42. The Task Force report its findings publicly within 12 months and every 12 months thereafter.

43. ODSP reductions for unrelated individuals with developmental disabilities who share accommodation be eliminated.

44. The IMCDS build more capacity for affordable, flexible, age-appropriate, and needs-appropriate respite care spaces; and collaborate with families and community agencies in the development and support of locally-based respite initiatives.

45. Families be able to access respite programs through referrals from professionals such as educators and family physicians.

46. The IMCDS collaborate with families and community agencies to develop and support locally-based day programs. These programs must be affordable and regionally available, and tailored for a range of age groups, interests, activity levels, and needs.

Appendix A

Preceding Developments and Committee Meetings

 

 

Preceding Developments

The Committee appreciates the important research and reports that have preceded its own consideration of developmental services in Ontario. Recent relevant work includes the 2007, 2011, and 2013 Annual Reports of the Office of the Auditor General of Ontario; the Ministry of Community and Social Services report, Opportunities and Action: Transforming Supports in Ontario For People Who Have a Developmental Disability, released May 2006; the 2010 Final Report of the Select Committee on Mental Health and Addictions, Navigating the Journey to Wellness: The Comprehensive Mental Health and Addictions Action Plan for Ontarians; Rethinking Disability in the Private Sector (Report from the Panel on Labour Market Opportunities for Persons with Disabilities), released in January 2013; the Initial Report of the Housing Study Group (Developmental Services Sector–Ministry of Community and Social Services Partnership Table), Ending the Wait: An Action Agenda to Address the Housing Crisis Confronting Ontario Adults with Developmental Disabilities, released in September 2013; and Yona Lunsky et al., Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario (Centre for Addiction and Mental Health & Institute for Clinical Evaluative Services), released in December 2013.

When the transformation of developmental services was first announced in 2004, a Joint Developmental Services Partnership Table was established to represent both the Ministry of Community and Social Services  and the Ministry of Children and Youth Services, as well as associations of self-advocates, families, and service providers in the sector. Some of those who made presentations to the Committee have been involved in the Partnership Table.

On May 16 2013, a motion by Christine Elliott (Whitby–Oshawa) that the Legislative Assembly immediately establish a Select Committee "to develop recommendations on a comprehensive developmental services strategy to address the needs of children, youth and adults in Ontario with an intellectual disability or who are dually diagnosed with an intellectual disability and a mental illness" was debated during Private Members' Public Business. The motion carried unanimously.[9]

Committee Meetings

The Committee met for the purpose of organization and to discuss business matters in October and early November 2013. Public hearings were held in Toronto and other locations around Ontario beginning on November 13, 2013 and ending on January 21, 2014.

The November hearings included presentations by government ministries involved in delivering services and supports to people with developmental disabilities, including the Ministry of Community and Social Services, the Ministry of Children and Youth Services, the Ministry of Education, the Ministry of Municipal Affairs and Housing, the Ministry of the Attorney General, the Ministry of Training, Colleges and Universities, the Ministry of Community Safety and Correctional Services, the Ministry of Health and Long-Term Care, the Ministry of Aboriginal Affairs, and the Ministry of Economic Development, Trade and Employment. The Committee also heard from the Provincial Advocate for Children and Youth.

Representatives of stakeholder groups also attended as invited guests. In the weeks following, the Committee heard from people across Ontario with a range of perspectives including self-advocates (people with developmental disabilities), family members, health care and social service professionals, advocates for people with developmental disabilities, and many representatives of stakeholder organizations.

The Committee heard from agencies and organizations that provide a wide range of services including respite care, residential care, day programs, intensive therapy for autistic children, and advocacy and support to families.

Some stakeholder organizations focused on the needs of those with specific conditions such as Autism Spectrum Disorder (ASD) or Fetal Alcohol Spectrum Disorder (FASD), and people with a dual diagnosis. Clinicians, parents, and advocates urged that Ontario develop provincial strategies on ASD and FASD.

A number of medical professionals spoke to the Committee about a lack of capacity in the system to address the needs of those with developmental disabilities or a dual diagnosis.

During its travels, the Committee also made a site visit to the Billy Bayou Centre in Moose Factory, where the Moose Cree Education Authority operates a day program for adults with developmental disabilities.

Along with written submissions, many individuals and organizations sent the Committee reports and studies that they feel relate to the Committee's work, and many also brought to the Members' attention examples of jurisdictions that have managed to eliminate waitlists and provide inclusive education, meaningful apprenticeships, and better social integration for people with developmental disabilities and/or a dual diagnosis.

 

 

Appendix B

Schedule of Public Hearings

List of Witnesses and Submissions

 

 

Schedule of Public Hearings

Public hearings were held in Toronto and various other locations on the dates listed below.

Toronto                      October 30; November 13, 20, and 27;

December 4, 11, and 18, 2013;

January 20 and 21, 2014

London                       January 13, 2014

Thunder Bay                         January 14 and 15, 2014

Ottawa                        January 17, 2014

The Hansard transcripts of the proceedings for each Committee meeting are public documents available through the Legislative Assembly.

 

 

List of Witnesses and Submissions

 

 

 

Appendix C

List of Developmental Services Ontario Offices

 

 

List of Developmental Services Ontario Offices

DSO Hamilton-Niagara Region

Administered by Contact Hamilton

DSO South West Region 

Administered by Community Services Coordination Network

DSO South East Region

Administered by Extend-A-Family

DSO North East Region

Administered by Hands – TheFamilyHelpNetwork.ca

DSO North Region

Administered by Lutheran Community Care Centre

DSO Eastern Region

Administered by Service Coordination services

DSO Central West Region

Administered by Sunbeam Residential Development Centre

DSO Toronto Region

Administered by Surrey Place

DSO Central East Region

Administered by York Support Services Network