The Right to Live Independently in the Community is not Recognized nor Protected
The UN CRPD Article 19 recognizes the Right to Live Independently and be Included in the Community. The Ontario Act only prescribes 3 types of funded residential living arrangements, group homes, supported independent living, and home share. There is no provision for direct funding to allow people with intellectual disabilities to make their own choices on where to live and with whom.
People with Support Needs Are Excluded
People with Fetal Alcohol Syndrome, Acquired Brain Injury (ABI), schizophrenia and other conditions affecting people’s ability to go about activities of daily living are denied supports because they do not fit the narrow and exclusive definition of a person with a developmental disability under the Act.
Waiting Lists for Supports Continue to Grow
The number and type of waiting lists continues to grow. With every change in program structure, there is a new waiting list created. The amount spent on program administration (ie “waitlist administration”) takes away from resources to directly support individuals. Ontario is closing congregated settings such as sheltered workshops with good intentions to desegregate and encourage inclusion into mainstream employment and volunteer options but the province is not providing the funding to enable people to access the supports they need to make it happen. Now more people are left with no options.
Resources Are Wasted:
Resources go to indirect services such as eligibility testing, wait list management, property management, human resource management, administration and monitoring of resource management. Research is needed to discover how much of MCSS resources go into non-client services and overhead.
Parents & Siblings Expected to Become Life Coordinators
The average age of family caregivers is increasing . . . at the same time, family responsibilities for coordinating the lives of individuals are increasing. There is an assumption that people labelled with an intellectual disability have family support and that family members have the capacity, resources and know-how to coordinate their adult children’s lives. People receiving individualized funding such as Passport need support to manage their budget, coordinate their support staff and their daily activities. This “Life Coordination” work must be funded by the Province.
Disabled people without family members or those without the know-how to fight for resources rarely receive individualized funding such as Passport. They are left to depend on ODSP for income and are pressured to accept unsuitable placements in group homes, foster family models of support, long term care facilities, and nursing homes. Many of these individuals even end up living in hospitals and in psychiatric institutions. By assuming that families will be available and capable to coordinate supports and funding for the adult person with a disability, the 2008 Social Inclusion Act discriminates against people without family or other unpaid supports. In other words, the Act discriminates against the most socially isolated people making them more vulnerable.
Lack of Policy Coordination
It has been a year and a half since the Select Committee on Developmental Services reported to the Ontario Legislature. This report was a wake-up call to the need to urgently act to remedy the human rights crisis that families and society are facing.
Solutions to challenges like affordable housing, mental health/dual diagnosis, community integration, employment, all require an inter-ministerial and intergovernmental approach to ensure that individuals living with intellectual and developmental disabilities have the supports they need to live as full citizens.
MCSS is trying to juggle the pressures from many stakeholders – the voices of large agency stakeholders often take precedent over individual voices. Public sector unions disrespect the role of families in supporting family members.
Changing Rules and Precarious Futures
Families are not in crisis because of disability. They are in crisis because of government’s inability to properly allocate resources to enable the full social inclusion of disabled people.
People with disabilities and their families are told to plan for the future without expecting the support of public funds. Funding rules keep changing and are often misrepresented and misunderstood by the people administering the programs.
Planning initiatives such as Registered Disability Savings Plans, estate planning, and housing task forces, do not replace the urgent need to recognize the right to supports and services enabling full social inclusion for people with disabilities.