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People with developmental disabilities in Ontario more likely to die young, report suggests

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People with developmental disabilities are more likely than the non-disabled to encounter problems with Ontario’s health-care system regardless of age, sex or class, a new study suggests.

The research from the Institute for Clinical Evaluative Sciences found those with developmental disabilities were significantly more likely to die young, languish in hospital without plans for appropriate aftercare, spend time in long-term care, or have repeat hospitalizations and emergency room visits than their non-disabled peers.

The study, compiled by researchers from ICES, the Centre for Addictions and Mental Health and the University of Ontario Institute of Technology, said the findings held true regardless of what disability was specifically at play. They also transcended a variety of boundaries that usually serve as strong predictors of poor health outcomes, such as age and socioeconomic status.

Elizabeth Lin, CAMH scientist and co-lead author of the study, which was released Thursday, said the data suggests the presence of a developmental disability is the factor that leaves people most vulnerable.

“There’s something about developmental disabilities in and of itself that appears to be contributing to these higher rates of the outcomes that we looked at,” Lin said in a telephone interview.

The researchers surveyed the medical records of more than 64,000 Ontario residents with a range of developmental disabilities, including autism and Down syndrome, and analyzed data compiled between 2010 and 2016.

Disproportionate impact 

In each of the negative health outcomes the researchers analyzed, they found a disproportionate impact on the developmentally disabled population.

Lin said what shocked her the most during the course of the research was the early mortality rate, which researchers defined as dying before the age of 75.

Across all age groups, income brackets and sexes, the early mortality rate of 1.6 per cent prevailing in the non-disabled population soared to 6.1 per cent for the developmentally disabled. That number doubled to 12.3 per cent for those with Down syndrome.

The study found 34.5 per cent of disabled people had to visit an emergency room more than once in a 30-day stretch compared to 19.6 for the non-disabled. The pattern held for repeat hospital stays in a 30-day period, where the findings showed 7.4 per cent for the disabled and 2.3 per cent for those without a disability.

The data indicates a phenomenon known as alternate level of care, in which someone spends at least one day in hospital despite being medically cleared for release, only impacts 0.7 per cent of the non-disabled population. That figure jumped to 4.6 per cent for those with developmental disabilities.

In the age groups included in the survey, which ranged from 19 to 64, only 0.2 per cent of non-disabled people spend at least a day in a long-term care home. For the disabled, that figure was 3.5 per cent.

One of those impacted was Teresa Pocock, who spent a brief stint in an Ontario nursing home despite being just 49 at the time.

“It was terrible,” said Pocock, who now lives with family and pursues art in Vancouver. “I don’t like it.”

The report did not explore the causes of the numerous gaps in care, but researchers and those with lived experience of navigating the health system with a developmental disability said the reasons are complex.

Yona Lunsky, director of CAMH’s Azrieli Adult Neurodevelopmental Centre, said there’s widespread ignorance in the medical field about the ways developmental disabilities manifest themselves.

In sessions she’s conducted with emergency room staff, for instance, she’s repeatedly heard that disabled patients are rare arrivals. After viewing teaching videos of common scenarios, however, session participants say they come across such situations more often than they realized.

‘I don’t think we’ve been as accommodating as we can’

Lunsky said society’s disproportionate focus on developmentally disabled children may be at the heart of some of the misconceptions.

Health-care professionals are not trained to recognize developmental disabilities and provide appropriate care in adulthood, she said, adding they often expect their patients to show symptoms and behaviours based on stereotypes they’ve long grown past.

But stigma also plays a role, she said, adding people with invisible disabilities may not be willing or able to communicate their situations in environments they’ve found unsupportive in the past.

“I don’t think we’ve been as accommodating as we can to give that message to people that says, ‘we want to know about what your unique needs are so that we can accommodate them,” she said. “Some people, at least, are thinking, ‘I’m going to be treated worse if I make it obvious that I have this disability, or I’m not going to get the care that I need.”‘

The report contains numerous recommendations for the health-care and social sectors, including:

  • Giving people with disabilities a more prominent voice in their own care.
  • Establishing more supports to keep people out of long-term care for longer.
  • Setting up reviews in early mortality cases to determine the causes.

Such actions would be welcome to Alex Haagaard, who is autistic and uses a wheelchair. She, too, noted that stereotypes across the spectrum of abilities can lead to lasting harm.

“When you’re perceived as not competent, you’re denied autonomy and the ability to take control over your own decisions in relation to your health,” she said. “If you try to assert your own control, they assume you don’t actually need support.”

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Virtual farmer’s market comes to Ottawa

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Ottawa first-ever virtual farmer’s market has begun delivering food from local farms straight to people’s homes.

Farm to Hand is making it easier for people who cannot access their local farmer’s markets to find local, fresh organic food by bringing ordered food right to their doors. 

“The difference between us and the farmers market is really just the convenience and the on-demandness,” Sean Mallia, the co-founder of the business, told CBC Radio’s In Town and Out.

“[Often times a] person wants to make the purchase but they don’t have the time on Saturdays to go to the farmers market. Everyone wants to eat local … so when it’s easy for them to do it, it just happens.” In Town and Out No time to drive to the farmer’s market but really want to eat local?

Connecting farmers with people 

The online platform allows farmers to list all their own products, and buyers can have the goods delivered. 

“What we really are trying to do is build that connection between farmer and consumer,” Mallia said. “When people fill up a cart … they’re not just filling a cart full of food, they’re filling a cart full of farmers and farms and their stories.”

Mallia said the aim is to connect people to the “vibrant food ecosystem” around them, and to local support farmers.

The virtual market is currently limited to the Ottawa area as a pilot project, but Mallia, 21, said the company is looking to expand.

“[We chose Ottawa because] Ottawa really cares. Ottawa really thinks about local [food] and thinks about sustainability,” he said. “It just made sense to come out of Ottawa.”

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Denley: Stonebridge and Mattamy show compromise is possible over development in Ottawa

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In Ottawa, development proposals too often end up in acrimony and trips to the provincial planning tribunal. That’s why it’s so refreshing to see Mattamy Homes and residents of the south Nepean suburb of Stonebridge work together to resolve a dispute in a way that’s likely to lead to a victory for both sides.

A little over a year ago, Mattamy created an uproar in the golf course community when it announced a plan to build 158 new homes on golf course lands and alter the Stonebridge course to make it shorter and less attractive to golfers. To residents, it looked like the first step in a plan to turn most, or all, of the course into housing.

It’s easy to see why residents were upset. When people pay a premium for a lot backing onto a golf course, there is certainly an implication that the lot will continue to back onto a golf course, but without a legally binding guarantee, it’s no sure thing.

Mattamy’s situation was understandable, too. This is a tough time to be in the golf course business in Ottawa. There are too many courses and not enough golfers so it’s no surprise that golf course owners would find the idea of turning a course into a housing development to be attractive, doubly so when the golf course is owned by a development company.

This is a tough time to be in the golf course business in Ottawa. There are too many courses and not enough golfers so it’s no surprise that golf course owners would find the idea of turning a course into a housing development to be attractive.

In the face of the local opposition, Mattamy withdrew its development application. When things cooled down, the company, the neighbours and the city started to work together on finding a solution that would satisfy everyone.

With the city-sponsored help of veteran planning consultant Jack Stirling, they came up with an unusual idea that will still let Mattamy develop its desired number of homes, in exchange for a promise to operate the course for at least 10 years and redesign it so that it remains attractive to golfers.

At the end of the 10 years, Mattamy can sell the course to the community for $6 million. To raise the money, the community working group is proposing a special levy to be paid by Stonebridge homeowners starting in 2021. The amount will range from $175 a year to $475 a year, depending on property values.

If the deal is approved by a majority of homeowners, Mattamy gets its development and a way out of the money-losing golf business. Homeowners get certainty about no future development. They can choose to keep the course going or retain the 198 acres as green space. It’s not a cheap solution, but it keeps their community as it is and preserves property values.

If a majority of homeowners backs the deal, both the levy and redevelopment will still need to be approved by the city, something scheduled for late this fall.

Stonebridge Community Association president Jay McLean was part of the working group that prepared the proposal and he’s pleased with the outcome. The community’s number one goal was preserving green space, and the deal will accomplish that, he says. Mattamy division president Kevin O’Shea says the deal “gives the community the certainty they are looking for.”

As useful as this deal could be for Stonebridge residents, it doesn’t provide a template to resolve a somewhat similar dispute in Kanata North, where the owner of the Kanata Lakes golf course wants to work with a group of local developers to replace the course with housing. In Kanata, a longstanding legal agreement saying the community has to have 40 per cent open space strengthens residents’ situation. In Stonebridge, there was no legal impediment to developing the whole course.

Golf course communities have become an anachronism in a city intent on intensifying within the urban boundary. Redeveloping those lands for housing is in sync with the city’s planning goals, but it’s not politically saleable to homeowners who thought they had a deal. If it goes ahead, the Stonebridge plan shows there is a reasonable middle ground.

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City eyes five big themes for Ottawa’s new official plan

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As Ottawa maps out its future for the next 25-plus years, city staff propose focusing on five major areas, including the places we live and the ways we move around the capital.

A staff report to the city’s planning committee lays out five themes for future public consultations, before city council finalizes the plan.

1. Growth Management: City staff say Ottawa should focus on building up, rather than out. Staff also suggest the city provide direction on the type of new housing developments, rather than focusing on the number of units in a development, to encourage a wider variety of housing types.

2. Mobility: Staff say the city should encourage active transportation — like walking and cycling — and transit use by better co-ordinating land use and transportation planning. The report also encourages designing streets to better accomodate pedestrians and cyclists, as well as improving connections to the O-Train and Transitway.

3.  Urban and Community Design: Because Ottawa is a major city and the nation’s capital, staff say the design of our city’s buildings and skyline should be a higher calibre to reflect that status. Staff also suggest the city provide high-level direction for better designed parks and public spaces.

4. Climate, Energy and Public Health: Staff say residents’ health must be foundational to the city’s new official plan, with policies contributing to creating more inclusive, walkable, and sustainable communities.

5. Economic Development: Because much of Ottawa’s employment is knowledge-based, the city suggests those employment spaces could be better integrated into neighbourhoods and along main streets and transit nodes, instead of being isolated in business parks. City staff also suggest the city encourage more business incubation and identify opportunities to increase local food production.

The city’s new official plan will map out the city’s growth to 2046. The five themes and the plan’s high-level policy direction will go before the city’s planning committee, next week.

Public consultation and fine-tuning is expected to happen before city council approves the final version of the new official plan in 2021.

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