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Canada's Programs for Disabled Too Complex, Says OECD

Canadians with disabilities or health (issues) are caught in a complex web of federal and provincial programs that make it almost impossible for them to join or remain in the workforce, says a new OECD report. Few programs lift the disabled out of poverty and many seem to work at cross-purposes, says the report by the Paris-based Organization for Economic Cooperation and Development, which looked at the major disability benefits and services offered by Ottawa and the provinces.

To improve programs and make it easier for the disabled to get help, the report recommends better federal-provincial coordination and "one-stop shopping" offices.

The 85-page report comes on the eve of a promised Ontario review of social assistance and mirrors many of the recommendations of a provincial expert panel that called for more coordination of federal and provincial programs for vulnerable working-age people.

"Even with better coordination, there is considerable room for streamlining by making provinces fully responsible for all employment measures and programming," says the OECD report, released this week.

Like many OECD countries, the report notes Canada's benefits and services are focused on what the sick and disabled cannot do rather than on what meaningful work they are able to do. Before the recession, just 60 per cent of Canadians with health (issues) or disabilities were in the workforce and their unemployment rate of more than 16 percent was twice as high as the general population, the report says.

A spokesperson for federal Human Resources Minister Diane Finley said the Harper government has taken "unprecedented action to support Canadians with disabilities" including the new Registered Disability Savings Program, Employment Insurance sickness benefits for the self-employed, and the Working Income Tax Benefit.

Mary Marrone, of Ontario's Income Security Advocacy Centre, welcomed the report's recommendation that Canada and other countries need to focus on people's abilities, not their disabilities. But she is concerned about the report's suggestion that countries should tie disability benefits to a person's efforts to work, even part-time. "We need to be providing real opportunities for people to work through employment support and accommodation and not make work an obligation for people with disabilities," she said in an interview.

Michael Mendelson of the Caledon Institute of Social Policy said Canada would be unwise to adopt one-stop shopping for the disabled before reforming the various federal and provincial programs. "Creating an integrated service as a Band-Aid over a dis-integrated system would just create one more layer of bureaucracy," he said. "The issue is the coordination of programs," said Mendelson. "We need to try to develop our income security system as a whole."

Reprinted from The Toronto Star, October 3, 2010, courtesy of Torstar Syndication Services.

Canada's Social Policy - Positive Changes and Persistent Challenges

Editor's Note: Michael Prince is the Lansdowne Professor of Social Policy at the University of Victoria in British Columbia, and is a board member with the BC Association of Community Living.

For persons who are blind, deaf-blind and partially sighted, what in Canadian social programs has changed over the past 20 years that positively affects their quality of life and status of citizenship? And, just as importantly, what has not changed?

The specifics of reform no doubt vary by provincial and federal jurisdiction. In a political system of federalism, it is more useful to think of a multiplicity of policy records. Ideally, then, to answer the question of the Canadian record of progress, we would need a series of case studies that cast light on results spanning an array of government jurisdictions, communities, services and instruments of public policy. Moreover, the timeframe to assess changes in approaching disability issues, and the expectations for major changes, likely vary among interests within the Canadian disability community. Here, I can offer only a selective overview assessment.

Positive developments over the last few decades in advancing access and inclusion for Canadians with disabilities include:

  • New tax benefits recognizing additional needs and costs of persons living with prolonged or severe disabilities, and their families. Examples include the Child Disability Benefit, Disability Supports Deduction, and the Registered Disability Savings Plan.

  • Public education and social awareness campaigns by governments, employers and broadcasters that contributed, along with other factors, to a shift in discourse from a personal tragedy to a public participation viewpoint.

  • Changes to federal, provincial, and some municipal election laws and procedures, including outreach measures to improve the accessibility of voting for citizens with disabilities. From a survey of almost 200 associations representing people with disabilities about the 2000 federal election, 89 percent reported a positive impression of Election Canada's role, 75 percent were satisfied with services to Canadians with disabilities, and 72 percent were aware of these access services.

  • Technological advances in communication that include captioning of all national programming by Canadian television stations and some local programming, TTY (teletypewriter) access through telephones, video relay services and, most recently, wireless pagers and messaging services.

  • Legal developments regarding disability and political victories, such as the right to sign-language interpreters in health-care services; Québec legislation in 2004 to further secure handicapped persons their rights to achieving social, school and workplace integration; and passage in 2005 of the Accessibility for Ontarians with Disabilities Act.

  • A concerted effort by Statistics Canada since the 1980s to conduct surveys on Canadians with disabilities in order to identify their lived experiences, the barriers they face, and trends over time. Other federal departments and think tanks also have greatly assisted in the development, interpretation and dissemination of much disability information.

  • Adoption by the United Nations General Assembly, in 2006, of the UN Convention on the Rights of Persons with Disabilities. The Canadian government in 2007 signed the Convention and fully ratified on March 11, 2010. The Convention covers civil, political, cultural, economic and social rights--a multidimensional conception of citizenship--supported by a monitoring body to encourage the compliance of states to their obligations.

Hence, there have been many achievements in Canadian disability policy and practice in recent decades, but they have been uneven and incomplete.

There have also been setbacks. For example, in the mid 1990s, the federal government withdrew from cost sharing with the provinces the provision of core social services and social assistance across the country. In the late 1990s, the federal and most provincial governments approved reductions to CPP (Canada Pension Plan) Disability benefits. Federal expenditures on employment services for persons with disabilities remain modest and, more significantly, stagnant in real terms over the last decade. As grounds of discrimination, disability is by far the most common type of complaint brought to the Canadian Human Rights Commission.

Serious gaps persist in access to affordable, quality disability-related supports for a considerable number of Canadians with disabilities. The default is informal family care and charitable services where possible, and where not, social isolation and unmet basic needs with everyday activities.

The general picture in Canada on employment for persons who are blind, deaf-blind and partially sighted continues to be one of relatively high rates of unemployment and underemployment, with barriers to training and placement services, along with inadequate supports for employment preparation and accommodations in workplaces.

Large numbers of people with disabilities are not receiving the essential services they require because of cost, lack of availability and inaccessible environments. Entry to some supports are still tied to receipt of income benefits, most notably social assistance, which adds a barrier to gaining access to needed services.

As I point out in my recent book Absent Citizens: Disability Politics and Policy in Canada (University of Toronto Press, 2009), individuals and their families bear a disproportionate share of the costs, work and responsibilities associated with addressing the everyday needs of living with disabilities. As a consequence, they experience undue hardship and are restricted from full and active participation in economic, educational and social life.

Due to inadequate supports, attitudinal barriers, and insufficient employment opportunities, plus provincial government efforts at moving "able bodied" people off welfare, people with disabilities now represent between 40 to 70 percent of those on income assistance, the so-called "social safety net." This program of last resort has become the program of first resort for thousands of people with disabilities across the country--a program distinguished for minimal rights, complex rules, and the sting of stigma.

Most social policies in Canada still regard disability as specific impairments, diseases and disorders; programs are categorical rather than a continuum of services, with sharp distinctions and abrupt changes when a person experiences a life transition. Living with a disability in Canada remains a strong predictor of welfare dependence and poverty for individuals, families, and many of the agencies struggling to assist them. A critical need therefore exists for enhanced income security, personal supports and public services.

For younger Canadians who are blind, deaf-blind and partially sighted, a key social policy goal must be accessible school-based supports, and school-to-work transitions to employment preparation and placements.

For the current generation of older Canadians who are blind, deaf-blind and partially sighted, important social policy issues concern ensuring more adequate and dignified provision of financial support at the federal and provincial levels of government as well as encouraging social participation and inclusion through such local and municipal activities as adult education, community services, recreation and peer support.

For all Canadians, the necessity exists to raise awareness on an ongoing basis about the fact that people who are blind, deaf-blind and partially sighted are still among the most vulnerable citizens in our society.

Photo: Michael J. Prince

Even The Tiniest Snowbank Can Be a Tripping Hazard

Editor's Note: This article is reprinted from the Toronto Star, February 26, 2007.

A small snowbank can create big problems when you can't see it.

The cleanup following the last snowstorm to hit us before today's dump resulted in the usual piles last week on street corners and at transit stops.

If a snowbank is in the way, most of us can just clamber over it or go around.

It's no big deal.

But for people who are blind or must use a wheelchair or scooter, the same snowbank can amount to an impassable obstacle.

It becomes a perilous tripping hazard or a reason to detour into the street--where drivers may not be able to see them.

David Swiderski, who is blind, called last week to ask about a snowbank on the southeast corner of Dentonia Park and Thyra Aves., near Danforth and Victoria Park Aves.

Swiderski was having trouble getting over the snowbank when crossing from the southwest to the southeast side of Dentonia Park, forcing him out into the roadway, which he said he found scary.

We agreed to meet him at the corner, on a sunny day when warm temperatures had considerably reduced the pile of snow. Swiderski soon appeared with his guide dog Marty, at the point where Thyra comes to a dead end, near the Crescent Town housing development. A large mound of melting snow had created a huge puddle, which he could not see and waded into.

He showed us how he'd earlier stumbled over the snowbank and had to walk out into traffic to go around it.

Even though the pile of snow was much smaller due to the thaw, it was still slippery and he couldn't see it.

Just then, a front-end loader from a city contractor came roaring down the street.

Perfect timing, we thought. He can get rid of it in one scoop. We tried to flag him down.

He looked at us as if we were Martians, then kept going.

We didn't think there was enough snow left to call anybody at the city about it, but what to do?

Snow shovels abounded on the porches of nearby homes, so we borrowed one and cleaned it up ourselves in 10 minutes.

Problem solved.

Who got it fixed: We did.

Reprinted courtesy of Torstar Syndication Services.

Abuse of Disabled High

Editor's Note: The following article is reprinted from the Starphoenix (Saskatoon), December 28, 2005.

The Saskatchewan Voice of People with Disabilities is gearing up to appeal to provincial politicians to better help women with disabilities escape abuse.

The move comes after the organization did a study on abuse that found 83 percent of women with disabilities in the province are being abused.

"I knew that it was going to be high, but I didn't think it was going to be that high," Voice's executive director Bev Duncan said.

The abuse is physical, verbal, sexual and emotional, and often comes from the woman's primary caregiver or spouse, Duncan said.

Women with a disability are also less likely to report an abusive spouse than women without a disability, she said.

What's keeping many women silent is isolation and fear, Duncan said.

"It's the whole idea of retaliation," she said. "It still happens. A family (member) could be a caregiver for an individual and if they don't do as they're told, maybe they won't get them out of bed. They might not provide them with things that are required for them, say, catheterizing someone, as they should be.

"This then leads to a criminal act, because that's a life-threatening thing. Yet, it's still not being dealt with. And people are afraid to say something because it's their family."

There's also the challenge of logistics. If a physically challenged woman wants to leave her home, she's got to find reliable transportation to a safe place.

That safe place may also require wheelchair ramps, elevators or low counters. Since 74 percent of Canadian women with disabilities are unemployed, many have no source of income to live independently.

"And then, of course, the person is thinking, 'Well I deserve this, because I'm disabled, and with my disability, this person is being such a great guy by being with me,' " Duncan said.

Women who live in remote areas have even fewer choices. The only police in town may be related to the abuser, Duncan said.

She relayed one anecdote where a woman who uses a wheelchair decided to leave her home and was wheeling down the road when her husband caught wind of the plan. He tried to run her off the road with his truck.

For people with an intellectual disability, often if they are in an institution or receiving care from a home-care worker, the victim can't communicate what has happened, and if she does report it, the authorities may not believe her, Duncan said.

The study found that when women with disabilities do look for help, they embark on a bureaucratic journey of referrals. The information they need isn't often in accessible forms like large print, audio and braille, and few shelters are able to house or care for disabled women.

Joanne Crofford, the minister responsible for disability issues and the minister of community resources and employment, said services are there to help women with disabilities. What needs work, she said, is how the government gets the information to them.

"I was wondering myself when I reviewed this (file) whether there's enough direct communication with persons with disabilities," Crofford said. "I don't know . . . how easy it is to identify those with disabilities in our caseload, but that's certainly something we could look at doing, making sure they receive some information directly."

Only 11 percent of people with disabilities are using the government services available to them, Crofford said.

Government-funded institutions and group homes must also have strict policies on abuse, she said, including staff training and a formal reporting process. The government also relies on staff to report abuse of people who have multiple disabilities that impede their ability to communicate, she said. This policy is currently under review, she added.

"A person's in a pretty vulnerable situation," Crofford said. "So, even though they can disclose it, they could not be aware that they can, and also, they could be worried about repercussions if they report it."

Any person who suffers abuse and needs shelter, but is getting shunted around, should call her office directly, Crofford said.

Two Saskatoon women's shelters say although they never turn anyone away, their facilities are not designed to house women with disabilities for the long term.

Barb Macpherson, executive director of the YWCA, said although the shelter is fully wheelchair accessible, it's designed for women who can live independently.

"When someone phones and they're in crisis, our first goal is to get her into safety," Macpherson said. "It may not be somewhere she can stay for any length of time, but to get her out of the sense of emergency and into a safe place and then work with the rest of it."

Possible places the women can go include social housing or a health region facility, she said.

Although Interval House is not wheelchair accessible, the shelter doesn't turn people with disabilities away, executive director Sharon Cunningham said. The shelter staff will phone around to find the right place for that person to live and receive care if necessary, she said.

Cunningham said home-care workers can come to care for clients at Interval House, and in longer-term shelter Adele House, just as they would in a person's home.

Cunningham said Interval House is planning to open a newer, wheelchair-accessible shelter in the future. What she wants most of all is more public awareness about the abuse.

"It's hard for the general public to understand how anybody could rape a woman in a wheelchair," she said. "How anybody could rape and rob a blind woman. How anybody could steal from a deaf, 83-year-old lady. That's all happened here in my tenure. The public doesn't understand, because most of them are good people."

The Saskatchewan Voice for People with Disabilities is currently choosing three or four priority recommendations from their report to present to the government in hopes of preventing further abuse.

FAMILY HARMONY

Above is Ruth with two of her children

Finding a Home With Love-Adult Foster Care The Right Fit For Daughter With Special Needs

Editor's Note: This article is reprinted from the Chronicle-Herald, December 17, 2004.

Nine years ago, Lorraine Bartlett was a widowed mother struggling to care for her severely mentally and physically disabled daughter of 22.

She was near the end of her rope, unable to provide the needed care for Tracy, who has a rare disease that left her blind and mentally challenged, with a cleft palate and webbed fingers.

"I just couldn't do it," she said.

Tracy spent time in a group home, then a special options home, but neither offered the right fit.

"What I was looking for was somebody who would love her the way I love her, and that's what I have," she said.

Tracy went to live with Patricia and Lloyd Mansfield under the Alternative Family Support program, a foster care program for disabled adults.

Mrs. Mansfield said Tracy has blossomed in their Dartmouth home.

"It's the greatest joy in the world," she said.

Community Services Minister David Morse said Thursday the province wants to expand that program beyond the 120 homes in metro and the Annapolis Valley, starting in late 2005.

"This can offer a long-term family situation," Mr. Morse said at a news conference in Halifax.

But New Democrat MLA Maureen MacDonald, a social worker, said the province's emphasis on foster homes for adults is a fundamental shift in thinking.

"For years we've talked about treating those people respectfully as adults who happen to have a disability," she said. "How many adults do you know who want to go live in a foster home in foster care?"

Ms. MacDonald said she understands some want this as an option but expressed concern about who decides whether a disabled person goes into foster care or lives independently.

Mr. Morse also announced the province plans to have more supported apartments across Nova Scotia for those who require minimal support and supervision. People in these types of homes require various levels of help, ranging between two to three hours a day and two to three hours a week.

"This is one of the least intrusive options of support," the minister said. "Maximum independence is encouraged through this program. They work and live on their own."

He said right now some people are getting 24-hour care when it really isn't necessary.

"It's a shame to provide them with all these extra resources when they just need someone to look in on them," Mr. Morse said.

As well, a new program called Direct Family Support, starting early next year, will help individuals to remain at home and under the support of Community Services, rather than falling under the Health Department's auspices once they turn 19.

These three programs come under Community Supports for Adults, which provides residential help to about 3,100 Nova Scotians. About $1 million that has already been budgeted will be spent, mostly for the Direct Family Program.

Lorna MacPherson, acting manager of the program, couldn't say how many people are in the wrong type of residential setting. But she said by adding and expanding programs, the province hopes to free up some bottlenecks in the system, getting more people the care they need.

But Ms. MacDonald said she didn't hear anything about the people who are waiting to get into the system.

"It's frankly almost embarrassing what the minister announced here today and how little concrete information they could provide us," the Halifax Needha MLA said.

"The real crisis in Community Supports for Adults is the fact that there are people who aren't already in the program at any level and can't get in."

Liberal MLA, Manning MacDonald, said the Tories seem to have a strategy of making announcements with money that isn't new.

"The money was in the budget already," the Cape Breton South MLA said.

While he said any help for people with disabilities is a good thing, Mr. MacDonald questioned the province's motivation.

"When David Morse talks about program enhancements, you know an election is on the way."

Courtesy of The Halifax Herald Limited.

"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.

Assistive Devices in Sight For British Columbians

Editor's Note: Linda Bartram is President of AEBC's Victoria, British Columbia, Chapter. The following article is adapted from â

British Columbia currently has no universal equipment and assistive devices program for people with disabilities. British Columbians who need access to these vital personal supports must try and find their way through a myriad of programs with different eligibility criteria, whether this is through a variety of provincial ministries or through service organizations. If a person with a disability does not fall into a particular population or category of disability served by these programs, then they fall through the cracks. Accordingly, Statistics Canada reports that people with disabilities in British

Columbia have the highest level of unmet need in Canada for equipment and assistive devices (Statistics Canada, A Profile of Disability in Canada, 2001;

2001 Participation and Activity Limitation Survey, Catalogue No. 89-577-XIE, December 2001).

The Provincial Equipment and Assistive Devices Committee

(PEADC) is a coalition of more than 35 community organizations that has been working together since 2004 to try to change this situation. In a Briefing

Note to government entitled Equipment and Assistive Devices for British Columbians with Disabilities, PEADC argued that the provision of equipment and assistive devices needed to be better coordinated and better funded, and urged government to enter into a partnership with the community in order to achieve this goal.

In October 2005, Claude Richmond, Minister of Employment and Income Assistance, recognized the importance and urgency of the need and took the leadership to initiate the Personal Supports Working Group, which brings representatives from PEADC together with representatives from five government ministries (Health, Education, Advanced Education, Children and Family Development, Employment and Income Assistance), and one crown agency (Community Living BC). The goal of the Working Group is to develop a provincial plan for the provision of personal supports with equipment and assistive devices (EAD) as the starting point. Personal supports are an integral part of the government's disability strategy, which is aimed at achieving the third of its great goals--the best system of support in Canada for people with disabilities, seniors, those with special needs and children at risk.

One of the first tasks of the Working Group was to forge a vision and shared values base for personal supports. The vision, values and principles that have been developed reflect the aspirations of people with disabilities and the ideals of both the community and government. PEADC has developed a Participation Model for the delivery of personal supports that borrows some of the most promising practices from other parts of the world, and creates some brand new ones based upon the direction in which our vision, values and principles led us. Here are some of the key features of the proposed Participation Model:

The model is a description of a dynamic process with the person with the disability as the driving force. The desired outcome is participation, to whatever degree the individual desires.

The model describes a process that begins with the individual. Each individual has goals and a plan for achieving those goals. A goal can be as straightforward as wanting to go shopping once a week, or as complicated as travelling the world in order to participate in educational or sporting events.

An individual plan becomes the doorway into assessment. The assessment focuses on what functional supports are needed to achieve the goal. It is guided by the user, in partnership with family and EAD practitioners, and it considers the social and physical environment within which equipment and assistive devices will be used.

Personal Supports Centers are a mainstay of the process. They are places both virtual and real that provide information, peer support, assistance with making plans, training, exhibits and access to EAD practitioners. These centres build on community capacity by co-locating with existing services and community centres, and by coordinating all personal supports service provision under one unifying delivery philosophy and framework.

The model envisions that each of the functional areas has a series of credits attached to it that translate into purchasing power for equipment, assistive devices, delivery, installation or fitting, training, maintenance and repairs. The number of credits that are given to individuals will depend upon their plan and the assessment of their functional needs.

Although the Personal Supports Centers provide many physical and virtual doorways to enable users, wherever they live, to make plans and get assistance with assessing functional needs, they are unified by the same philosophy and policy framework. However, there is only one doorway to funding. Financing the credits will happen outside of the view of the user through coordination of all of the existing funding sources. Users who have no other available payer are funded through a new stream of expenditure that is dedicated for the purpose of equipment and devices. The model envisions an eventual integration of all of these funding sources.

Once credits have been assigned, individuals are free to use their credits in the marketplace with dealers and distributors who are prepared to abide by a set of standards. The marketplace is constrained as little as possible so that users can meet their unique needs and the market itself can be free to innovate. Credits can be banked for an extended period of time. This enables users to manage their credits in order to take advantage of technological change or to save credits. For example, the purchase of recycled equipment may lead to credit savings, which could then be applied to other equipment needs.

Education, training and peer support are as important as the equipment and devices themselves, and every user is guaranteed access to these resources through the Personal Supports Centers.

The process is dynamic with feedback loops that enable people to re-enter the planning process when needed.

For example, follow-up and evaluation with EAD users may indicate modifications to equipment and devices are needed, as well as further training. For some individuals, as they achieve their goals and participate more fully in the community, their goals will change and Individualized Plans will need to be revised, while for others changes in their disability may necessitate changes in the individual plan and the EAD.

The Participation Model for Personal Supports transforms service delivery by anchoring every component of the process to individual goals, and by freeing the users to access the marketplace and make decisions about how best to meet their functional needs. It is focused on choice, including the choice that some users may make to let an EAD professional, like an occupational therapist or a speech pathologist, make their equipment and devices decisions on their behalf.

For more information about PEADC or for a copy of the full report, contact Linda Bartram, PEADC co-chair, at: labartram@shaw.ca

Public Forum Tackles Abuse of The Disabled

Editor's Note: The following article is reprinted from the Toronto Star, June 11, 2005.

Some 120 people crowded the halls of the Law Society of Upper Canada last week to talk about dignity, respect and the rights of people with disabilities to live free from abuse.

What can you do if you are being maltreated by service workers or others responsible for helping with personal care?

What happens if you report that abuse? What can authorities do?

These questions were central to last week's public forum presented by the Law Society and ARCH, a legal resource centre for people with disabilities. It followed a story in the Star in which artist Anne Abbott spoke out about a widespread pattern of emotional abuse against people with disabilities.

Abbott, who has cerebral palsy, is quick to point out that many personal care assistants are sensitive, considerate and respectful of dignity. But others are abusive in many subtle and not so subtle ways.

Among other things, they may handle fragile bodies roughly, use unnecessary force doing simple things like brushing hair, leave people stranded on the toilet for hours, threaten, shout or otherwise try to intimidate.

So what do you do if you are the victim of neglect, harassment or emotional or financial bullying?

How do you go about telling someone you feel scared and humiliated? How can you be sure that telling won't put you or your pets at greater risk?

"It may be hard to decide if you should tell someone," says ARCH, which offers a range of advice pamphlets. "You might be scared of what people will say or do if you tell ... of how your abuser will react or that you will lose some of the supports you need."

But reporting abuse may be the only way to stop it, to restore your sense of dignity, the group notes. It also may protect other people from being abused.

Speakers at the forum, moderated by Jos Bouchard, equity adviser for the Law Society, included ARCH staff lawyer Lana Kerzner, Fran Odette, project coordinator for the women with disabilities and deaf women's program at Education Wife Assault, Nevina Crisante, counsel to the Ontario Victim Service Secretariat at the Ministry of the Attorney General, and Gwen Reid, an abuse counsellor and sexual assault survivor, who spoke about her experience as a witness at the criminal trial of her assailant (where the witness box was inaccessible to her wheelchair.)

Abbott, whose courage to speak out has helped focus renewed attention on preventing abuse, says little has changed with the personal assistants supplied to her by Tobias House Attendant Care. But she intends to keep fighting for justice. As does ARCH.

"This is only the beginning," says executive director, Phyllis Gordon.

If you are in danger, the Assaulted Women's Helpline has a 24-hour crisis line for both men and women. Call 1-866-863-0511 (voice) or 1-866-863-7868 (TTY).

Other sources for information include:

ARCH: See http://www.archlegalclinic.ca (opens in a new window) or call 416-482-8255 (voice) or 416-482-1254 (TTY) or write 425 Bloor St. E., Toronto, Ont. M4W 3R5.

Community Legal Education Ontario, which offers simple, clear booklets on everything from elder abuse to consumer rights. Most are free. See http://www.cleo.on.ca (opens in a new window) or call 416-408-4420 or write 119 Spadina Ave., Suite 600, Toronto, Ont. M5V 2L1.

National Clearinghouse on Family Violence: See http://www.phac-aspc.gc.ca/ncfv-cnivf/familyviolence/or (opens in a new window)or call 1-800-267-1291 or write 1907D1 Jeanne Mance Building, Tunney's Pasture, Ottawa, Ont. K1A 1B4.

Education Wife Assault: See http://www.womanabuseprevention.com (opens in a new window) or call (416) 968-3422 (voice), (416) 968-7335 (TTY) or write Suite 220, 215 Spadina Ave., Toronto, Ont. M5T 2C7.

The Advocacy Centre for the Elderly: See http://www.advocacycentreelderly.org (opens in a new window) or call 416-598-2656 or write 2 Carlton St., Suite 701, Toronto, Ont. M5B 1J3.

The Ontario Network for the Prevention of Elder Abuse: See http://www.onpea.org (opens in a new window) or call 416-978-1716 or write 222 College Street, Suite 106, Toronto, Ont. M5T 3J1.

Reprinted with permission--Torstar Syndication Services.

Home Supports: Hearing From Consumers

Editor's Note: April D\'Aubin lives in Winnipeg, Manitoba, where she is research analyst for the Council of Canadians with Disabilities (CCD).

Disability supports have been identified by disability rights organizations as a key priority, and home supports is a component of disability supports.

CCD's Health Reform Committee undertook a research project with Dr. Kari Krogh to investigate home support policy issues and develop solutions. As CCD is a consumer driven organization, the research sought to hear from home support users throughout Canada.

Consumers had many ideas on how to improve home support for people with disabilities. Some of the suggestions were as follows:

Direct Funding Programs Universally Available--Direct funding programs need to be available in all parts of Canada for all home support users who want to be self-managers, and these programs need to be flexible so that they meet the needs of consumers. For example, consumers want to be able to hire family members, and direct funding programs need to have a safety net for both consumers and workers to address temporary lay-offs, such as when a consumer is in the hospital.

Emphasize Independent Living (IL) Principles--Consumers were anxious to see IL principles influence the training of home support workers.

User Fees--The research participants reported that it was difficult for them to pay user fees. They recommended that these fees be eliminated or reduced.

National Standards--Many participants called for home support programs to be governed by a set of national standards. Some consumers would like to see home support programs follow the principles outlined in the Canada Health Act. These principles are as follows:

Portability--Consumers want home supports attached to the user and not tied to a particular location.

Assessment Procedures--Participants found that the assessment procedures used by home support programs to be problematic. They suggested that such procedures should focus on how to provide consumers with the supports necessary to achieve personal goals, self-determination, the consumer's desired lifestyle and full and equal participation in Canadian life.

More Inclusive Programs--Consumers recommended that home support programs be inclusive of persons with chronic illnesses.

Appeal Mechanisms--The participants recommended that all home support programs have appeal mechanisms attached to them.

This is just a brief account of the recommendations made by consumers. The complete results of the home supports research project will be published on CCD's website: http://www.ccdonline.ca

Pilot Project Uses Video, Voice to Deliver Home Care

Editor's Note: The following article is reprinted from the Toronto Star, March 5, 2004, courtesy of Torstar Syndication Services.

Chronic care may just be the start

When John Langworthy gets short of breath, he doesn't worry the way he used to.

Langworthy, 73, has chronic obstructive lung disease. That makes shortness of breath a major concern. But a pilot project that could change the face of home care is giving him almost instant access to a nurse and peace of mind.

"I govern my health now," says Langworthy, who monitors his own oxygen intake.

As part of a $2.3 million, three-year experimental telehomecare program in the East York area of Toronto, Langworthy's home is equipped with a compact two-way voice and video system linked to nurses who provide home care.

If the system fulfils expectations, it could dramatically ease pressure on a seriously overstretched system, saving trips to emergency and allowing home care nurses more flexibility.

Before he got the system, Langworthy had to go to his doctor's office just to have his blood pressure taken. Now he has a blood pressure cuff, stethoscope and pulse oximeter in his home. When he uses them, the information is fed into a computer located with the nursing group. The readings are stored and reviewed regularly.

Online sessions are held once or twice a week.

Depending on how things have been going, Langworthy has a scheduled face-to-face live video consultation with nurse Kristen deSouza of Comcare Health Services. They talk about how he has been doing and go over his vital signs.

At any other time, day or night, if he's feeling short of breath, he can contact a nurse on call by phone. By asking what he was doing and how he was feeling just before the incident, the nurse can assess the seriousness of the situation.

Just knowing he can contact someone "gives us a great feeling of comfort," says Langworthy's wife Joan, who recalls only too vividly the build-up of anxiety before her husband became part of the telehomecare pilot.

"Anxiety makes anyone's oxygen intake even less," says deSouza, who finds the high-tech system allows her much more flexibility in caring for patients.

"It will never replace nurses and the personal visits many people need," she notes. But for many seniors, people with disabilities and those with chronic, manageable conditions, such as diabetes, congestive heart disease or chronic lung obstructions, "it's the way of the future," deSouza predicts.

That's certainly the hope of Centennial College, which developed the equipment Langworthy is using and is leading the East York pilot project. By 2006 the group hopes to have 200 homes with hi-tech health care links that should relieve pressure on seriously overburdened services, reducing trips to emergency and delivering quality care more efficiently.

Major partners on the project include: Comcare, which supplies nursing services; Toronto East General Hospital; the East York community care access centre; Clinidata, which operates Ontario's 24-hour Telehealth phone consultation service; and Montreal's Centre Hospitalier Anna-Laberge, also running a pilot project.

"We hope to demonstrate that it's sustainable and that the ministry of health will support it," says Renee Kenny, Centennial's dean of applied arts and health sciences. The college, already known for its online nursing telepractice post-graduate program, aims to expand E-learning related to health care, she adds.

Telehomecare isn't new. It's up and running in St. John, N.B. And it is a growing phenomenon in the U.S., where American TeleCare says it pioneered the concept a decade ago and the Mayo Clinnic is even testing it to help people with Alzheimer's.

The East York project is focusing on chronic care but it's also got an eye on ways of expanding the concept, says Barb MacFarlane, manager of service operations at the East York Access Centre.

"We hope eventually to use it to help some cancer patients whose immune systems have been repressed," MacFarlane says. "For them, a trip to a clinic in flu season can be dangerous and it's tiring at the best of times.

"And we might be able to use it in the area of mental health, when clients may not want to go to a drop-in clinic."

Telehomecare also could help streamline case management, MacFarlane says, allowing doctors, nurses and pharmacists to access data and communicate via the internet.

"We are expecting cost savings," MacFarlane says.

The high-tech voice, video and monitoring units placed in homes cost about $5,000; the units at health care offices are double that, she notes. But with trips to emergency running at $500 and a day in hospital costing $600 to $1,000, savings should add up.

"Just knowing they can call someone really helps our clients," she says. In homes where the systems have been set up, "we haven't had any after-hours calls or trips to emergency."

For more information, check: www.telehomecare.ca

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