Changes over the last several years to the way that funding is provided for individuals with developmental disabilities has created significant upheaval for many families. Special Services at Home (SSAH), which once followed the individual for life, no longer does so. Families benefitting from the SSAH are getting significant jolts as their children turn 18 and fall into deep system gaps.
As of April 1, 2013, at age 18, as the programming shifts from one ministry to another (Children and Youth Services to Community and Social Services), families need to reapply for service through the “Passport” program. At this point some people are being told that the original assessments which made them eligible for SSAH as children are no longer valid, even though the disability hasn’t changed. Vulnerable families have to pay out of pocket for new psychological assessments, costing thousands of dollars. These costs are significant for a middle-income family; for a lower-income family they can be impossible.
Should the new assessment make the individual eligible for ongoing SSAH or Passport funding, they are then entered onto a waiting list for service. The waiting lists that people find themselves on are daunting. The waiting list for a child to receive service through SSAH can stretch to 5 years – which seems even longer now that they are losing this funding at age 18. 1-3 year waiting lists for Passport funding is common, with both waiting lists growing.
In hard numbers, what does the current wait list situation look like? According to Community Living Ontario, there are 7000 families on the waiting list for SSAH, and 4000 more on with waiting list for Passport funding. Community Living states that the current funding for SSAH “is spread so thin that the average allocation to families is $4,200 a year. That translates into $350 per month or approximately 8 hours of support a week.” This funding, of course, is only for those who have made their way through a years-long waiting list.
There is very little movement in the SSAH waiting list. According to the Auditor General, “as of March 31, 2011, there was a waiting list of almost 9,600 people who met the eligibility criteria but were still waiting for SSAH funding.” The number of eligible people on the waiting list for Passport funding has consistently been greater than the number of people actually receiving funding.
With our aging population, many seniors are spending their golden years providing primary care. Community Living Ontario, through a random sampling of ridings across Ontario, found that over 1,450 parents over the age of 70 are still providing primary care to their adult child or family member. “80% of parents are between 70 - 79 years of age, 17% of parents are between 80 - 89 years of age, and 3% of parents are over the age of 90.”
The lack of support and service in Ontario is not only unconscionable; it also ignores the commitment Canada made to people with disabilities upon signing the UN Convention on the Rights of Persons with Disabilities. A couple of examples include:
• Article 19 - Living independently and being included in the community. Section B states: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.” SSAH and Passport would fulfil this requirement, were people able to access them in a timely fashion. Waiting 1, 3, 5 years for these supports are counterproductive to preventing “isolation or segregation to the community.”
• Article 26 – Habilitation and Rehabilitation, section 1 states: “1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes: a) Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths; b) Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.” Again, it is obvious that our significant wait lists fly in the face of the spirit of this article.
Saying that we aren’t living up to our international obligations may seem to be an abstract statement, but what this means in reality is that our children and families are not receiving the supports they desperately need. We must do better.
Tell the Ontario government that they must eliminate the waiting lists for supports through Special Services at Home and Passport.
For years now families with children with developmental disabilities struggled with waiting lists for Special Services at Home (SSAH) and Passport Funding. Despite their eligibility, these waiting lists could stretch for years.
On April 1st changes came into effect which exacerbated the situation. It’s embarrassing that in a province as prosperous as Ontario we are treating people with disabilities and their families with such disregard. We should be ensuring families have what they need for in-home support, and to ensure that we are creating opportunities for community building for all individuals.
[Your message will go here]
Ontario’s Ombudsman has begun to probe this issue, and with good reason. You do not need to wait for his findings to make progress on this issue. I encourage you to begin today. Some initial steps would be:
• To allocate funds for the SSAH and Passport programs so that the waiting lists can be fully eliminated in the short term;
• Ensure that the funds that are allocated are sufficient to provide the supports that families truly need;
• Stop cutting funding for SSAH at 18, or at least until people can transition onto Passport funding seamlessly (not onto a Passport waiting list); and
• Engage meaningfully with affected families and service providers to ensure that the services and funding offered are adequate to meet complex and individual needs so that all Ontarians can lead meaningful lives where they can fully engage in the community.
I hope that you will take immediate action on these steps.