Health care for disabled Ontarians fails to measure up

By Louise Kinross

Ontario adults with developmental disabilities are nearly four times more likely to die early than their non-disabled peers, and fare worse on four other health indicators, finds a study released by the Institute for Clinical Evaluative Sciences today. 

Researchers from ICES, the Centre for Addictions and Mental Health and the University of Ontario Institute of Technology looked at the medical records of over 64,000 Ontario residents with a range of developmental disabilities, including Down syndrome and autism, between 2010 and 2016.

In addition to dying earlier, the population-based study found adults with developmental disabilities were over six times more likely to spend at least one day stuck in hospital when ready to be discharged; nearly two times more likely to have repeat emergency-room visits; over three times more likely to be readmitted to hospital within 30 days of discharge; and 17.5 times more likely to spend at least one day in long-term care.

Adults with developmental disabilities faced these problems regardless of their age, sex, or the income level of the neighbourhood they lived in.

The study defined premature mortality as dying before the age of 75. In the general population, the rate of premature mortality was 1.6 per cent. In those with developmental disabilities, it was 6.1 per cent. For people with Down syndrome, the rate was 12.3 per cent.

BLOOM interviewed study co-author Dr. Yona Lunsky, director of the Health Care Access Research and Developmental Disabilities Program and the Azrieli Adult Neurodevelopmental Centre at CAMH.

BLOOM: Why was there a need for this study?

Yona Lunsky: The study is part of our ongoing program to look at how to improve the health of adults with developmental disabilities in Ontario. We wanted to take indicators of health care that are used in the general population and look at them together, in this population, to bridge silos that exist now. These indicators were chosen because they’re issues that have been flagged as concerns. When we’re thinking of hallway medicine, we may get an image of an older person in a hospital bed in the hallway who needs to get into longer-term care. But the person we’re talking about may be 25 years old with a developmental disability and need something different.

BLOOM: What were the key findings?

Yona Lunsky: The main finding is that across health-care outcomes this large group of adults with developmental disabilities fares worse than adults who don’t have developmental disabilities. That means we need to do something that impacts all of those areas of care, and not just one of them. 

We’re also learning that not every single person with a developmental disability is the same. That’s why we studied different groups. How is it different if you’re a man or a woman, young or old, or living in a lower versus higher income neighbourhood? How is it different if you have Down syndrome or autism? By looking at subgroups, we see that there isn’t one solution that will fit everyone. There are unique issues.

BLOOM: Is there a reason why race wasn’t considered?

Yona Lunsky: That’s a great question. We didn't have data on race available to us through ICES. We were working with existing administrative health data and that information is not available at the population level.

BLOOM: How would you describe health care for this population in Ontario?

Yona Lunsky: Our study gives us a big picture of the type of things that are extremely stressful and difficult for people, and costly, and that are happening at higher rates than in the general population. This is a big problem. This isn’t a study of why. We can’t say how much is due to a person’s disability or how much is due to health-care training gaps, or stigma, or non-health related services.

BLOOM: When you looked at early deaths, were these deaths considered preventable?

Yona Lunsky: That’s a really good question. We didn’t look at the causes of death, and that’s something we need to do. In the U.K. and Australia, where they have looked more closely at mortality data for this population, they’re finding many causes are preventable.

BLOOM: We’ve seen in other countries people with developmental disabilities dying of completely treatable conditions like constipation.

Yona Lunsky: It's possible that could happen here as well, but we didn't look at why the deaths happened. We need to do that and then ask whether any of these are preventable deaths.

BLOOM: How did the health-care outcomes differ based on whether the person had Down syndrome, autism, or any developmental disabilities with a mental illness and/or addictions diagnosis?

Yona Lunsky: I think the bigger message is that there are things we can do to benefit the entire population, but there can also be value in understanding the unique needs of subgroups. If you’re walking into a health-care setting, you want your disability to be recognized so you can have appropriate accommodations. And the transition from one health setting to another has to be a good, smooth supported transition, regardless of the disability you have.

But then, are there specific things we can do for adults with Down syndrome who have a higher premature mortality rate or a greater likelihood of living in long-term care?

BLOOM: We’ve heard about how youth with all kinds of disabilities fall into a care gap when they graduate from pediatric to the adult system. Why is this problem so striking for adults with developmental disabilities?

Yona Lunsky: You work at Holland Bloorview, which is the most family-centred place on the planet. You’re used to talking to the family and the person with a disability at the same time. You make the space fun: Your floor lights up when you step on parts of it. Everyone says hi, and everyone is friendly.

Adult-care settings are not designed to be family-friendly, or to address different developmental stages. No one says hi in the elevator. If you’re an 18-year-old patient, you give the consent to the person you talk to, and health-care providers are less accustomed to including the family or other carers in the same way.

Crystal Chin has spoken about how we have developmental pediatrics, but we don’t have developmental medicine. So in pediatrics, there’s a whole area where people are trained to work with different disability groups. But in adult care, we don’t have that. There isn’t a Holland Bloorview for adults to go to. We don’t have specialized settings that are more accommodating to the unique needs of people with disabilities. And in the adult world, you’re not trained to work with people with disabilities and their families.

BLOOM: How does the devaluation of people with developmental disabilities influence care?

Yona Lunsky: If a person with a disability is going to Canada’s Wonderland, they know that if they make their disability known, they receive accommodations. Maybe they won’t have to stand in line for so long. But what incentive do people have in adult care to make their needs known? What if from the patient perspective, you believe you won’t be taken seriously if you have a certain kind of disability? What if you think providers will attribute your problems to behaviour? What if the attitudes of professionals may make your care worse?

BLOOM: I guess even if the person does self-identify, does that mean they will receive what they need?

Yona Lunsky: It’s the first step. Once I say ‘I have this disability’ we need staff who have skills and resources, and knowledge of what to do. From our study, we can't tell how much a lack of skills, resources and knowledge—or negative attitudes—impacts the health-care interaction.

BLOOM: How likely is it that new resources will be brought to bear on this problem given your study?

Yona Lunsky: I can’t predict how likely it is. But in a perfect world, numbers are part of what informs decision-making.

BLOOM: What advice would you give people with developmental disabilities and their families?

Yona Lunsky: We’ve developed some resources in partnership with adults with developmental disabilities and their families. It would be great if people could look at these resources and tell us what works, and what doesn’t work well. It’s important to look at what is already there, and if something isn’t there, to be part of the solution. We also need to learn when things go right. Everyone should have a voice.