The Green Light

 

Pilot Project will Allow Consumers to Manage Their Own Attendant Services

On a sunny June afternoon in the beautiful, natural setting of Woodeden Camp near London, Ontario, over 100 people, most with disabilities, focused their attention on one person. A sense of anticipation was nearly tangible. The speaker was Ontario Health Minister Ruth Grier, and what she was about to announce would affect every individual present.

“Today I am very, very happy to tell you that our Direct Funding Pilot Project has received approval and is going ahead immediately,” Grier declared. “Government committed close to $4.5 million for the two-year project, 82 per cent of which is in direct funds to participants.”

An explosion of applause and delighted cheers obliterated the rustic quietude. This was no usual moment. For a great many people, years of dreams, planning and undaunted hard work had just come to fruition.

“I’m delighted to give this initiative the green light,” Grier continued. “A special feature of this program is that consumers will have control over government funds to purchase and manage the services they need. They will be able to hire their own attendants. The relationship between consumer and attendant will be based on an employer/employee model. More importantly, it gives consumers independence and dignity they said the system did not allow them in the past.”

Independence and dignity. It’s not a lot to ask for. But for many Canadians with disabilities who use attendant services in their lifestyle, maintaining independence and dignity can be a daily challenge.

Starting in 1975, attendant services in Ontario have typically been provided to consumers through agencies, often in designated buildings. With services tied to specialized housing units, the consumer has had little or no control over who helps, where they help, or how the help is made available. It is difficult to arrange services on short notice, because many other consumers in the building will have scheduled time with the same attendants. Out-of-town travel is often impossible. And unresolveable personality conflicts, which can arise from any human interaction, may persist for months — even years — between a consumer and an attendant or management.

The limitations meant that this form of service was quite unworkable for many people. At first, some individuals were able to obtain Orders-In-Council (OICs), mechanisms used by the government to dispense funds in “exceptional circumstances,” when existing programs are not appropriate. When in 1984 the Outreach program was devised for people who already had their own housing in place, the government prepared to cancel the OICs — even though Outreach still did not meet the needs of some individuals.

This threat prompted the creation in the mid-1980s of the Attendant Care Action Coalition (ACAC), a convergence of longtime consumers who aimed to protect OICs and expand them to a direct funding program of self-managed attendant services. They envisioned a system whereby individuals would have full control over their own services: interviewing and hiring attendants themselves, arranging their unique schedules, and generally custom-designing arrangements to their own needs.

In spring of 1993, Bill 101 provided for a direct funding option; from there, ACAC, the Centre for Independent Living in Toronto (CILT), the Canadian Association of Independent Living Centres (CAILC), other consumers, and government worked together to refine policy and guidelines for such a model. When in June of this year the Ontario Health Ministry officially announced its approval of the Self-Managed Attendant Services Pilot Project, it was, for many consumers, the gratifying end of a long, arduous journey — and the beginning of a passage towards a new way of life.

The two-year pilot project will enable 80 to 100 people with physical disabilities to manage their own attendant services as employers. In lieu of services provided by an agency, they will receive funds to pay the wages of people they hire themselves. An evaluation process will follow the project.

Program Director Ian Parker has been involved in achieving this goal for many years. He has worked at the current service system from many different angles, including serving on several boards of directors. He has been instrumental in starting new projects, but has also learned that “there’s a limit to the changes you can make to individualize group service delivery systems. There needed to be an additional option.

“This is going to make such a difference to so many people’s lives,” Parker says. “We’ll be able to move to new housing, travel, start families — and have normal control over who helps us with our daily personal routines.” He adds, “People are going to find that being an employer will be a great experience in honing management skills and raising self-esteem.”

This effect has already been seen in Manitoba, where in 1991 the government implemented a two-year Self-Managed Care Pilot Project with 29 participants which proved highly successful and is now scheduled for expansion. (For more information, you can call the Independent Living Resource Centre in Winnipeg at (204) 947-0194.)

Alberta operated a one-year pilot in what the health units termed “self-managed care,” and it received such positive evaluation that this is now an option for anyone in Alberta who meets the eligibility criteria (call Brenda Hannah of Calgary Health Care, (403) 228-7480). Quebec has had some direct funding in place for certain services (contact a CLSC (Centre local des services communautaires) in your area for more information), but the criteria are strict and funds are diminishing.

Still other provinces have been setting up projects or committees of consumers to liaise with government and look into options. This includes the Direct Funding Program in New Brunswick (for information, call l’Association des personnes handicapées de la Péninsule acadienne, (506) 727-6095). Halifax, Nova Scotia’s Metro Resource Centre for Independent Living (phone: (902) 453-0003) got the go-ahead in March of this year for eight to twelve local consumers to receive direct funding for attendant services. And British Columbia announced in April that it, too, has initiated a pilot project that similarly will provide funds directly to consumers to hire their own services (see article by Brian Cruikshank). To find out more about what’s happening in your province, you should contact your local Independent Living Resource Centre.

It is important to note that the various programs across Canada can differ dramatically in flexibility, eligibility criteria and degree of self-management offered. Taking into account potential limitations of other programs, the Ontario pilot project aims for fundamental consumer control and optimal independence.

The project will be administered through CILT. The Ontario Network of Independent Living Centres (ONILC) will also play a key role as resource organizations in the selection process for their regions and in providing support to consumers. This network includes: the Independent Living Centre in Thunder Bay, (807) 345-6157; the Kapuskasing Action Centre, (705) 335-8778; Collingwood Breaking Down Barriers, (705) 445-1543; the Independent Living Centre of Waterloo Region, (519) 746-2700; the Niagara Centre for Independent Living in Welland, (905) 734-1060; the Independent Living Centre London, (519) 672-3380; the Kingston Independent Living Resource Centre, (613) 542-8353; the Ottawa-Carleton Independent Living Centre, (613) 761-8082; and CILT.

CILT Executive Director Vic Willi explained how the Independent Living philosophy is put into practice with this pilot project. The three founding principles of this movement, as first laid out in the mid-1960s in Berkeley, California, are that people with disabilities best know their own needs and how they can be met; that their needs can be met most effectively by programs that provide a variety of services; and that people with disabilities should be integrated as fully as possible into their communities. These principles are wholly captured in the project, which has been designed and will be run by people with disabilities in their communities. The current operating principles that ensure programs are community-based, non-profit and cross-disability are also fully encompassed in this design.

The government approval of the pilot project, says Willi, represents “the culmination of years of effort using what, for most social action groups, is a different tactic — a non-victim approach. We used what’s called the ’rights-bearing’ approach. The IL Movement is of the mind that things such as attendant services are civil liberties issues. It’s better to avoid trying to be a victim but instead take the stance of a citizen of Canada. This approval has confirmed the veracity of that approach. I believe that’s what we’ve achieved with this pilot project.”

Applications for participation in the project are currently being accepted from consumers across Ontario. You must be age 16 or over, need attendant services for activities of living as a result of a permanent disability, and be willing and able to assume full responsibility as an employer, managing and administering your own attendants. Participants selected will be funded for approximately 60 to 180 hours of service per month.

“I was one of the first people in the attendant service programs back in 1975,” says Parker, “and while it was appropriate for me for a while, I’ve become increasingly frustrated by the lack of choice and flexibility that other Canadians automatically have — and that I was accustomed to in my lifestyle before my accident. It’s time I was able to control my own life without somebody else managing my services for me.”

For more information about participating in the Self-Managed Attendant Services Pilot Project, call CILT at (416) 599-2458.

(Lisa Bendall is an ABILITIES staff writer.)

 

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