KJIPUKTUK (Halifax) – This story is about human decency, collaborative planning, construction and hope.
You may not know it, but almost 2,000 families like mine with a developmentally challenged loved one are supported by our department of Community Services through a thing called the “Flex Program”.
This in part allows us to have a beautiful but frugal life with our son and we are genuinely grateful for the support we get. Many families like ours are not able to work full time in order to do what we have to do. We do not get paid what professionals are paid to do in long term care facilities or small option homes.
This support has enabled our son to grow up happily in community and has allowed us time to give back as volunteers supporting others through nonprofit social initiatives like the Alexander Society for Inclusive Arts and the Community Association of People for Real Enterprise.
We like to think we have been a good investment. We are relatively inexpensive compared to the costs of staffing and maintaining large and small residential care facilities. All this got me wondering how much more it will cost to support my son when we die and whether or not our government is setting money aside for that eventuality.
To find out, I spoke with Joe Rudderham, the executive director of the Disability Support Programs for Community Services. I wanted to find out if they measured the average age of parents in order to make plans. He said no. He then admitted there has been a problem with data collection and transparent public access to this sort of demographic information for a long time.
This lack of solid intelligence compromises proactive planning within all levels of government as well as the nonprofit and private sectors. To their credit, Community Services recognizes this problem and has hired a consulting firm to help.
But I still wanted to know what happens to people like my son who have never known institutional care – who have always been part of community.
So I asked Joe Rudderham, “What age is appropriate for a person who requires intensive care to leave the home they have known all their life?” This is a difficult question. Rudderham said it is a matter of choice and it varies from family to family. Many resist allowing anyone other than family to care for their developmentally challenged loved ones. Advanced age, accidents, illness and death often make the decision for them, he said.
Rudderham seemed proud to say Community Services is prepared to handle these crises when they happen and that no person would be abandoned. This made me wonder why so many families hang on until the last minute. What are families afraid of? I know personally of two practical reasons: 1) not enough qualified support workers and 2) not enough small option homes. We have had long waiting lists for disabled people for years and years and now we have them for seniors too! It’s scary and stressful! Something has to give.
How can we gently and humanely transition thousands of people like my son to continue living happily in their familiar home communities with their friends and neighbours if there are no homes for them to move to and not enough fair wages for qualified support workers?
What about those who have never known community living -who have been institutionalized and now are confronted with deinstitutionalization? Why do we procrastinate on building the infrastructure and social capacities our communities obviously need now? Lack of money is no excuse.
Nova Scotians should know that Community Services began this process of transforming Disability Support Programs almost thirty years ago when the province took over jurisdiction of Municipal Rehabilitation Centres. At that time everyone agreed we had to end congregated institutionalized custodial care and move to a variety of inclusive, community embedded residential, work and play options.
All three political parties have failed to move this forward in a timely manner. Successive departments of finance have failed to lead and inspire our business community to embrace these very real opportunities for community development and construction. No wonder we now have a serious poverty problem in Nova Scotia.
Joe Rudderham told me transformation of Disability Support Services in Nova Scotia will be a slow process expected to take at least ten years. This is outrageous.
People like Jean Coleman, past Executive Director of The Nova Scotia Association for Community Living, and the many members of People First Nova Scotia who have been advocating for change for at least twenty years already! The Community Homes Action Group has given DCS failing marks for moving this process forward.
Rudderham argues that a large part of the holdup is lack of public awareness. He says more communities still need to build capacities and overcome stigma. He says his department will work to provide more transparent information, better communication and public education.
Our villages and towns are important and these represent diverse opportunities for genuine social and economic renewal in rural Nova Scotia. All government departments would have to collaborate. Health, Education, Finance, Heritage and Culture all have to work with Community Services in partnership with municipalities, families and service providers.
Transportation is a huge issue. Imagine being able to walk or wheelchair to work or the store or the doctor rather than having to use a car every time. We can rethink and renew our neighbourhoods. Make them more accessible, walkable and inclusive.
This could mean converting existing houses into group homes, building new ones or even develop new mixed residential and commercial neighbourhoods with professional centres as hubs that local small businesses, doctors, nurses, and personal caregivers could work in. We can partner with each other to create new local manufacturing jobs, value added agriculture, tourism and cottage industries. Our local Farmers’ Markets are showing the way.
In short, if Community Services and Housing Nova Scotia were properly funded, it would create a building boom in communities all over Nova Scotia while waiting lists for disabled people or seniors would shrink.
As for the developmentally challenged and elderly, we are definitely heading toward a monumental iceberg and time to act is running out. We do not have to crash and sink in poverty and illness… We can rise up and help each other prosper. Nova Scotia can be a world leader in community development and green accessible construction.
The time for timid thinking is over. Developers and politicians with intelligence and chutzpah can be market leaders and build now. Who knows? If we do this right, it will encourage more young people to put down roots and grow their families and businesses in towns and villages all over Nova Scotia.
Kimberly Smith is a community activist, videographer, actor, and facilitator of video improv teams who lives in Canning. Check out his website.
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