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Fresh hope for people with disabilities?

Government promises more individualized approaches, closing of institutions

by Robert Devet

Jean Coleman, executive director of the Nova Scotia Association for Community Living, believes a new government report will dramatically improve lives of people with disabilities if recommendations are followed
Jean Coleman, executive director of the Nova Scotia Association for Community Living, believes a new government report will dramatically improve lives of people with disabilities if recommendations are followed

A new government report on Community Services Services for People with Disabilities (SPD) program represents a major turnaround in government's approach, and may bring significant improvements to services for people with disabilities and their caretakers.

The report, written by a joint group of civil servants and representatives of community organizations, calls for the phasing out of large institutions, a more individualized approach in terms of care and funding, and a new emphasis on changing mainstream services to better accommodate people with disabilities.

Jean Coleman, executive director of the Nova Scotia Association of Community Living (NSACL), an advocacy group for people with intellectual disabilities, thinks that the report is a major victory in the battle for equality.

"I really think that this is a huge shift in the government's way of doing and thinking. The most positive change I have seen maybe in my entire career," says Coleman, who worked on the report.

People with intellectual disabilities and their advocates have become increasingly frustrated with years of neglect by governments of every stripe. Less than a year ago they rallied in Sydney and at Province House in Halifax, demanding that large institutions be closed, and that Community Services finally deal with an ever-growing waiting list for community-based housing solutions.

Frustration and anger were also front and centre at a government consultation session in Dartmouth earlier this year, part of the province-wide Putting People First consultation. Speaker after speaker denounced Community Services for needless red tape, lack of action, and insensitivity to the individual needs of people with disabilities.

The new report agrees with the critics, and sketches out a five-year plan to transform the program.

Lorna McPherson is the civil servant in charge of the SPD program, the section within Community Services that is most affected by the proposed changes. She was part of the committee that shaped the report.

"The big change in direction is that it is person-directed and that is about choice," says McPherson. "To work with an individual to look at what the supports are that they need, rather than to assess an individual to fit in a box. What do they have, how can we complement that, how can we support individuals with their own decision making. That is entirely different from how we have been providing support."

Jean Coleman agrees. Asked for the three most significant changes, she lists recommendations around person-directed planning, individualized funding, and the move away from institutions and into the community.

"Person-directed planning means that instead of people with intellectual disabilities having to fit into a system, individuals [...] will be able to identify what their needs are. So person-directed means that it is what the person wants. We never had that. That part is extremely important," says Coleman.

Individualized funding implies that control over the money resides with the individual, rather than with an institution or service provider. Coleman points to British Columbia as a province where individualized funding is well established.

"You are going to have access to support funding, and that will give you to the opportunity to choose where you live, with who, and the supports you need for employment, recreation, just to live," she says. "It will go to the person, that was the plan, that is the intent of the report. If I choose to live in a group home, it [that money] will come with me, if I leave that group home, it will come with me."

The move away from institutions is the most dramatic change. The report recommends that further investments in larger residential facilities stop immediately (excluding investments required for upkeep), and establishes a moratorium on new admissions to take effect by April 2015.

"De-institutionalization has been our primary focus for probably 10 years. Across Canada we have been advocating for the closure of institutions. I do know that as far as NSACL is concerned any person with an intellectual disability should not be there, but should be back in the community with the proper support," says Coleman, emphasizing that she cannot speak for people with physical or mental disabilities.

"So I expect that institutions will close, because many [institutions] do house people with intellectual disabilities, and our goal is to have no one with an intellectual disability institutionalized, not one more placement, and the people that are there brought back to community, brought home," says Coleman.

It is clear that this is a very important issue to Coleman and the constituency she represents.

"I have been working in this field for over 30 years, and I have never met a person with an intellectual disability who has said I want to live in an institution. People may have been there since they were young, the evidence shows that [...] when individuals who have lived in a place for 25 years or so, are brought back into community, if you were to interview them a month or two later, they are happy."

Coleman and McPherson both mention the significance of the United Nations Convention on the Rights of People with Disabilities (CPRD) in shaping the new recommendations. MacPherson calls it a game changer. The Incompetent Persons Act, the Adult Protection Act, and the Homes for Special Care Act will all be rewritten.

Writing a nice report is one thing; following up on its recommendations is a very different matter. This may not be the first time that a government report ends up collecting dust.

One issue will be money. MacPherson agrees that implementation of the recommendations over the next ten years will be more expensive than business as usual, although ultimately the system will be more efficient. To what extent future governments will put their money where their mouth is remains to be seen.

Darrell Dexter has endorsed the report, but other parties have been silent. Only the Green Party responded to our email requests for a response, committing to the recommendations and expressing concerns about future governments' willingness to fund the transformation effort. Neither the Liberal nor the Progressive Conservative platforms mention the initiative.

Many people with disabilities live in abject poverty and rely on social assistance. Critics argue that the Community Services record in supporting low income Nova Scotians is deplorable. Cuts in special needs assistance, a shelter allowance that does not reflect what it costs to rent a half-decent apartment, and income assistance that falls far short of supporting families and individuals are all issues on which the report is silent.

"Many people with intellectual disabilities are on income assistance. It's not a living amount," said Coleman. "I see it as part of the moving forward, it has to be."

And then there is the sheer magnitude of the transformation. It's not just the SPD program in Community Services that is affected. The transformation will touch independent service providers who will be expected to change how they have been conducting business for decades.

"This is a huge change management process, said MacPherson. "We are talking about a decade of change. Doing it too quickly will result in chaos."

Despite all this, Jean Coleman remains optimistic.

"Absolutely, we have to be vigilant,, and we have to be strong. It is only the beginning," said Coleman. "We have a lot of hard work ahead of us. But it is exciting, it really is exciting. This is such a huge system upheaval, and people who have been allotting the money, that power struggle, that is all going to be challenged and it isn't going to be easy."

"This document is now a tool that individuals with disabilities and their families can use to make government accountable. They are the one, they have a strong voice, and if they use this document as a way to have a better future for their sons and daughters, then this is how this is going to keep moving forward and not sit on a shelve collecting dust."

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