How can the quality of life of people with disabilities be improved? This N.S. group is seeking answers

In Nova Scotia, where there's a important ratio of people living with disabilities, act is underway to appraise whether the responsibility is making progress on improving their lives.

In January, the Quality of Life Index for Persons with Disabilities was released by an advocacy organization called the Nova Scotia League for Equal Opportunities (NSLEO). The index is a set of 82 indicators measuring more than a dozen areas of well-being and accessibility.

The indicators will be used by the Nova Scotia government, disability organizations and others to monitor the well-being of those in the disability community and the implementation of Nova Scotia's Accessibility Act. The Act, passed in 2017, sets a goal of achieving an accessible province by 2030.

"We are focusing in specifically on the lived experience from …  cradle to grave for persons with disabilities," said Sherry Costa-Lorenz, executive director of NSLEO, which is leading the work.

The index was created by and with input from people with disabilities, who represented nearly 38 per cent of Nova Scotians aged 15 and older as of 2022. A 20-member advisory committee made up of different community organizations provided feedback. Community consultations were also held.

Costa-Lorenz, who is also part of the disability community, said there's a lack of understanding of what true accessibility means, adding that the index covers a holistic view of a person's well-being. 

For example, there are indicators on access to recreation and physical activity.

That's something Michelle Mahoney knows the importance of. She was born with a lack of muscle in various joints, clubbed feet and a dislocated hip due to arthogryposis — a rare set of conditions that can cause abnormal muscle development and stiff joints.

As a person with a disability, said Mahoney, "it's really important to stay active so that you don't lose your muscles."

In 2014, with the use of a piece of adaptive equipment called a sit-ski, Mahoney began downhill skiing. She said the sport has changed her life.

Her first time being able to ski was "exhilarating," recalled Mahoney, accessibility officer for the University of King's College.

"The smile on my face was just unbelievably amazing."

Growing up, Mahoney didn't have much opportunity to participate in sports because of a lack of adaptive equipment. 

"Now that I'm older, [I'm] … realizing that there are things out there," she said.

The quality of life index is believed to be the first of its kind in North America, Costa-Lorenz said. The next phase of the project is to collect baseline data for the indicators, so progress can be measured. 

A report with the baseline data is being targeted for completion by International Day of Persons with Disabilities on Dec. 3.

Some of that data will come from an upcoming survey in the fall.

Engage Nova Scotia is the organization administering the survey, which aims to provide governments and other groups with insight into the well-being of all Nova Scotians. 

The survey was last conducted in 2019 and contains over 200 questions on topics like health and experiences of loneliness.

This year, the head of Engage Nova Scotia said the survey will be sent to all households in the province. There will also be more questions aimed at people with disabilities.

"It's going to give us a much finer look at the stories across the province, and, in each region, about the prevalence of and the experiences of people across different disabilities," said Danny Graham. 

In 2022, more than one-third of Nova Scotians had one or more disabilities, according to Statistics Canada. It's the highest rate of disability in the country.

Costa-Lorenz expects information to not be readily available for some indicators. But she said that will identify areas where data collection is needed.

Mahoney said it's important that this data is being collected.

"People with disabilities are just people," she said. "We want to … have the same things as everyone else.

"We might just take a little longer to get there and we might need supports."

Reporter/Associate Producer

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