Anyone who has been institutionalized—whether that’s in group homes, long-term care homes or other residential-medical institutions—knows that conditions inside the institutions are miserable for people who live in them.
In Ontario alone, over 30,000 adults that the government labels with intellectual or developmental disabilities live in, or are on the waitlist to live in, state residential facilities.
Decades of budget cuts have created a situation where institutionalized people pay for the lack of food, programming, and basic necessities of life––like toilet paper, bus passes, and Wi-Fi. Instead of accessing social assistance programs like ODSP or Disability Assistance to cover these costs–which they might be eligible for if they lived in the community– institutionalized people instead receive personal need, comfort, or care “allowances.”
These monthly allowances pass through bureaucrats, social workers, business owners, and personal support workers before a disabled person living in a group home, long-term care facility, or some other variation of a residential treatment facility eventually receives them. They range from $91 in PEI to $179 in Ontario and $380 in Manitoba.
In Toronto, $179 buys you a monthly bus pass and a pack of cigarettes. In St. John’s, $150 might cover the cheapest available internet plan and a couple bags of chips. But institutionalized people are supposed to stretch these allowances to cover the costs of cellular mobility plans, personal support workers for getting to the doctor, clothing, wireless internet, over-the-counter pharmaceuticals, recreation activities, hairdressing, menstrual products, specialty diet products, and all other monthly personal needs beyond basic food and shelter.
These institutional allowances are more than inadequate—they’re immiserating. As the federal government works on implementing the new Canada Disability Benefit, it’s more urgent than ever that lawmakers fix policies that are trapping institutionalized people in deep poverty.
Provincial Income Supports
Policy—both federal and provincial— forces most people with disabilities in Canada to live in chronic, abject poverty.
Over 75 per cent of adults with intellectual disabilities in Canada who live outside their family home live in poverty. Chronic poverty serves as a barrier to community involvement and to the development and maintenance of social relationships. People with disabilities, particularly intellectual and developmental disabilities, are most likely to live in institutional settings. Chronic poverty for persons with intellectual/developmental disabilities who are institutionalized is correlated with higher levels of mental illness and development of comorbidities.
Poor people with disabilities—regardless of where they live—rely on government and transfers for a larger share of their total income compared to poor people without disabilities across Canada. Despite often being framed as a system of “last resort”, provincial social assistance programs targeted for disabled people are often lifelines for recipients, especially those who are unable to work full-time, in the long-term or permanently.
Government transfers and social assistance make up, on average, about 65 per cent of poor disabled people’s total income (compared to about 29 per cent of total income for non-disabled poor people). For about 35 per cent of poor people with disabilities in Canada, social assistance is their primary source of income, compared to only 6.3 per cent of non-disabled poor people. Almost half of poor disabled people who live alone rely on social assistance as their primary source of income.
Given that social assistance is the primary source of income for so many people, it is especially important that policymakers and academics monitor the inadequacy of these programs. Some scholars have paid attention to the adequacy rates of income supports for disabled people in Canada who live in community or family-based non-institutional settings. Other researchers have found that disabled adults who rely solely or primarily on any provincial social assistance program are destined to live in chronic poverty.
Researchers tend to agree on the importance of monitoring income supports for disabled people living in communities—it’s time to apply that sense of importance to institutional income as well.
For residents of institutional facilities like group homes, personal needs allowances may be their only source of income. Policies often claw back working income, and sometimes require residents to use up all their savings before becoming eligible for the allowances.
Measly allowance rates make it impossible for people with disabilities living in institutions to afford personal effects and maintain an adequate quality of life. The rates of monthly allowances for people with disabilities living in institutions are abysmal compared to the the Market Basket Measure—Canada’s poverty line—which covers shelter, food, clothing, transport, and other necessities.
Although the rates vary between $91 in Prince Edward Island to $380 in Manitoba, none of them come anywhere close to being sufficient. Allowance rates across the provinces don’t come anywhere close to the poverty lines, even when you take out the food and shelter components.
Policymakers justify the extremely low rates of support because food and shelter costs are paid directly to the institutions, so supposedly, residents’ basic needs are met. This justification does not stand up to scrutiny––living conditions documented by residents in institutions describe overcrowding, cockroaches, bedbugs, and moldy food.
Residents are responsible for providing their own cell phone plans, clothing, internet, over-the-counter pharmaceuticals, recreation activities, hairdressing, menstrual products and other essential personal needs—all on $380 a month, if you’re lucky enough to be eligible for Manitoba’s allowance.
Across Canada, governments continue to unjustly institutionalize people they label with intellectual disabilities. Disabled people should not be forced to live in congregate residential settings because social and health care services aren’t available in their communities. Institutionalization, with the isolation, lack of autonomy, and constant surveillance can be a depriving experience for disabled people, which is only furthered by the abject poverty of these social assistance schemes.
In the longer term, governments need to improve community supports so people are not forced to live in institutions in the first place—but for institutionalized disabled people today, policymakers need to address the inadequacy of monthly allowances. Personal needs allowances are typically the only income support that eligible residents receive, and they are supposed to use those paltry payments to pay for everything beyond basic food and shelter.
Policies that rely on the assumption that institutionalized people have their basic needs met by institutions are fundamentally flawed. Rates of monthly allowances for residents of group homes and long-term care facilities are woefully inadequate at addressing even the cost of basic comforts they are intended to cover.
Lawmakers need to pay attention to the poverty of institutionalized people with disabilities in Canada and the inadequacy of existing income supports.
While provinces can and should raise the rates of institutional allowances, the federal government has a window of opportunity to address this issue now. Federal investments in disability support which seek to address inadequate rates of income across the country should include people with disabilities living in institutional settings—including the recently enshrined Canada Disability Benefit (CDB), which is now undergoing regulation consultation.
In addition to complementing provincial assistance rates for people living in community, the federal income supplement should top off monthly allowances for institutionalized people to ensure that their income does not fall below the poverty line. To ensure that the support actually makes it into disabled people’s pockets, the new CDB should include protections against clawbacks from private insurance companies and punitive asset restrictions.
Setting federal supplements to a minimum rate of $1000/month would support people with disabilities who live in institutions to access the internet, basic cable, cellphones, transit, menstrual and reproductive health products, clothing, dietary supplements, and over-the-counter medication. Lawmakers must not leave institutionalized people behind as governments work to address disability poverty.