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"we Are Not Sick; We Know What We Need"

Editor's Note: The following article is reprinted from the Toronto Star, June 3, 2006.

"The consumer has the problem ... also the solution. What we need is somebody to enforce the solution so that I will never again be left lying in bed, helpless, neglected, and desperate."--Bridget Young

There's a lot more work to be done but it looks as if Ontario may take a step toward recognizing that people with disabilities are able and willing to take charge of their lives. The subject is at the heart of an inquiry into whether the province should move to regulate an increasing number of service professionals, including the men and women who help people who move and communicate differently go about the business of daily living.

Most personal care workers are respectful of the people they help with bathing, dressing, preparing meals and so forth. But the risk of abuse is always there. The question is would regulating the profession reduce that risk or merely increase the bureaucracy? A preliminary report from the Health Professions Regulatory Advisory Council suggests personal support workers will remain outside the constrictions of government regulation--which is good news for many people with disabilities who have made that point in submissions and appearances before public hearings.

"There is a large and distinct segment of the population, myself included, who are getting on with our lives whilst coping with severe physical impairment," Hazel Self, a former registered nurse who injured her spinal cord almost 30 years ago, wrote in a letter to the council. "We call it maintaining our independence, having choice and control and being in charge of our lives. We are not sick; we know what we need."

Self, a long-time advocate for independence and former president of the Centre for Independent Living in Toronto, wrote, "My attendants are highly qualified; they have a listening ear, they acknowledge my expertise, they have a pleasant attitude and a respectful manner, they are trustworthy and reliable.

"These attributes are not gained by having a (personal support worker) certificate or nursing training, as the sad litany of disciplinary actions attests to. I find these attributes in my neighbour, the salesgirl who helped me try on clothes, the daughter of the superintendent of my building, and others whom I have met over the years and hired as attendants."

That being said, no one would argue that there's a lot of room for improvement around the issue of attendant care and personal support. Ideally, people with disabilities would like to see a system in which they have some mechanism for quality control and an effective complaints system.

For many, a good first step would be the expansion of Ontario's direct funding project, which gives those who qualify the money to hire and schedule attendants of their choosing.

"We believe the key to reducing harm lies with empowering the service user," says Sandra Carpenter, program manager at the Centre for Independent Living. "Attendant services must be viewed as a disability accommodation, not a health service."

But the current direct funding program funds only a maximum of six hours assistance a day.

"We need that maximum raised to at least nine hours daily," Bridget Young told the advisory committee's public hearings in Toronto last week. "We all want higher quality," said Young, who also spoke on behalf of Anne Abbott, another determined advocate for improved attendant care services.

"If standardization of education and the certification process will result in better quality, then so be it. Certainly, at the very least an obligatory national registry of all (personal support workers) should be implemented so that they can be tracked, reported, rewarded, etc."

Young also emphasized the need for accountability and the right of people with disabilities to live without fear of reprisals if they complain about service. Current rules state "that I am allowed to participate in my service plan so that the plan is designed to suit my needs," she told the advisory council. "In reality ... if I try to complain or make changes, I am labeled the problem."

Last month, in its preliminary report to Ontario Health Minister George Smitherman, the Health Professions Regulatory Advisory Council said consultations with groups representing people with disabilities indicated that "dignity, independence and choice" were fundamental to their needs.

It indicated these fundamentals were better served if personal support workers were not regulated. But it also noted "a general interest in creating a registry of PSWs ... maintained by a central body, accessible to employers wishing to hire PSWs (and) a resource for employers performing reference checks."

The advisory council expects to make final recommendations in September. For more information, see: www.hprac.org (opens in a new window)

Email: hhenderson@thestar.ca Reprinted with permission--Torstar Syndication Services.

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