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Quality Public Home Care and Home Support Services: It's All About Equality For Persons With Disabilities

The most vulnerable and poorest citizens of our society--people with disabilities and seniors--benefit the most from home care and home support services. However, the growing gaps and privatization of home care and home support services means less access to essential services for seniors and people with disabilities, and represents a step backwards in our struggle for equality.

According to Statistics Canada, 3.6 million people, 12.4% of our population, have a disability. Survey results confirm that the disability rate gradually increases with age--10% among adults aged 15 to 64, and then dramatically rises to more than 40% among persons aged 65 and over. More than half of Canadians who are 75 years of age (53.3%) report having a disability. Approximately 9.7% of adults [2.3 million] report having difficulty with everyday activities, such as getting dressed or undressed, or cutting one's food.

The Romanow Report on Medicare recognized the need to expand the Canada Health Act to include home care services. Unfortunately, the report distinguishes between home care services and home support services such as help with laundry, food preparation, and housekeeping services. For many persons with disabilities and seniors, these support services are critical to facilitate their active and full inclusion in Canadian society, as well as their ability to live independently in their communities.

Home support services are those services provided by other people and include personal attendant care, home making, respite, etc. It is these important services that support many people with disabilities in obtaining education, being employed and active in their communities. Home support services not only help ensure a stable level of health for people with disabilities, but provide them the same equal opportunity as all other citizens to participate in the social and economic fabric of our society.

Without adequate home support services, many of our citizens with disabilities are often forced to live at home under conditions that put health and well-being at risk, or live in an institution where they are segregated from the rest of society.

Many of the home care and home support services critical to the independent living of people with disabilities were once funded under the pre-1995 federal-provincial cost sharing arrangement known as the Canadian Assistance Plan (CAP), that was eliminated by the famous slash and burn federal budget of then Finance Minister Paul Martin in 1995. The elimination of CAP represented the biggest step backward in the struggle of persons with disabilities to live independently in their communities.

Canada's Medicare system needs to be strengthened and expanded to include a national and comprehensive public system of health and home support services that are unavailable or unaffordable to Canadians with disabilities. While these necessary supports are diverse, the most widespread and acute needs relate to three areas:

  • Personal support services of all kinds (such as self-directed attendant care, home support services, sign language interpretation, communication supports, and support workers);

  • Assistive devices and supplies (such as mobility aids, hearing aids and other communication aids, incontinence supplies, home oxygen, etc.);

  • Prescription drugs and related health needs (such as special diets).

A priority for improving our Medicare system should be a coordinated plan by the Federal/Provincial/Territorial governments in each of these areas, developed in consultation with disability rights activists, to ensure that Canadians with disabilities are guaranteed these supports.

Incorporating home care, home support, other health support services and Pharmacare into the Medicare system would go a long way to promote better health outcomes, greater equality and independence for Canadians with disabilities, and ensure our public universal health care system is strengthened, sustainable and equitable.

Disabilities Supports Policy: a Blindness Perspective

Editor's Note: Editor's Note: The following article draws upon a presentation by Marie White, Chairperson of the Council of Canadians with Disabilities (CCD) to the Board of the Consumer Organization of Disabled People of Newfoundland and Labrador (COD), SEPTEMBER, 2002, discussions at the Disability Supports Policy Forum in Ottawa March 2-4, 2003, and a Workshop held at the 2003 NFB:AE Conference in Montreal, May 16, 2003.

The Roeher Institute has defined the term "disability supports" as any good or service which assists a person with a disability to overcome barriers to carrying out everyday activities or to social, political, and cultural activities and economic participation. The goal is independent living as opposed to the older medical model goal of curing or rehabilitating a person with a disability.

There is no fixed list of disability-related goods and supports. A good or service becomes "disability-related" when it is used to assist a person or persons in overcoming barriers associated with a disabling condition.

The list of disability supports can include, but is not limited to:

Technical aids; Transportation; Job Coaching; Attendant support; Homemaking assistance; and respite and back up for family care givers.

People with disabilities require disability supports to achieve their social and economic potential. Data from the 1991 Health and Disability Limitation Survey (HALS), however, shows that one-half of the 44 per cent of people with disabilities who are not in the workforce cite barriers and disincentives as the reason;

25 per cent of Canadians with disabilities on income support programs cite loss of supports as a reason for not looking for work; and 36 per cent of people with disabilities had non-reimbursed out-of-pocket disability-related expenses.

Many existing supports are not portable across sectors. Supports that are provided in the home are often not provided in the school or workplace - making it impossible for a person to pursue training or employment options.

In other cases, supports are attached to specific forms of residential care, such as nursing homes or group homes. This creates problems for residents who wish to seek independent living arrangements.

For Canadians who are blind or partially sighted, the list of essential disability supports includes, but is not limited to: adequate orientation and mobility training; a nationwide Government-funded assistive devices programme, that includes adequate training on technology provided; full internet accessibility; availability of public transportation; access to regular community programs, including psychological support and counseling on disability-related depression; low vision clinics; universal design/usability of products and alternative format versions of product manuals; increased employment programs; paid readers at home and in the workplace to read print materials; Building Code standards that include adequate lighting and prevention of glare; standards for accessible vending machines; independence in voting; access to municipal recreation programmes and library services; accessible consultation methodology; and outreach/communications strategies to provide information on new initiatives.

The Council of Canadians with Disabilities (CCD) and the Canadian

Association for Community Living (CACL), through support from the Government of Canada's Voluntary Sector Initiative, have launched a new project, "Connecting People to Policy." This Initiative's overall aim is to build the capacity of the disability community to engage with federal and provincial/territorial governments in policy discussion and development related to disability supports.

Canada's disability consumer movement has identified achieving greater availability of disability supports a priority issue. there remain some jurisdictional and delivery issues to be resolved. The Disability Supports Policy Forum held in Ottawa, March 2-4, 2003, identified four key areas that require further research and discussion: federal / provincial / territorial / first nations transfer payments, mobility rights, use of tax policy, and information and reporting. A second Disability Supports Policy Forum is expected to take place in late 2003 or early 2004, at which the results of this research will be discussed and further recommendations developed.

Two Worlds Are Colliding: Social Policy Is Coming Up Against a Survival-of-The-Fittest Strategy

Editor's Note: Editor's Note: The following article is reprinted from the Hamilton Spectator, June 23, 2003.

There is a deep-seated clash of cultures between the worlds of trade policy and social policy. Trade policy is driven by the demand for economic growth and the interest of multinational corporations, where the competitive market rules supreme and the biggest and strongest tend to win.

Social policy seeks to even out inequalities, support those who have trouble getting their needs met by the market, and ensure services for all. It often does that by supporting non-profit groups responsive to the needs of the communities they serve.

The world of struggling non-profits may seem far removed from the world of international trade deals. Yet social services are affected by the North American Free Trade Agreement and even more so by the ongoing negotiation of the Free Trade Agreement of the Americas (FTAA) and General Agreement on Trade in Services (GATS.)

The danger is that public policy measures to support non-profit services could be considered, under the trade agreements, to unfairly affect the ability of foreign-owned firms to establish operations in Canada.

U.S. and other transnational corporations see social services as a new world of opportunities for profit, and trade rules as the means to gain entry.

They are likely to argue that, to have equal opportunity to provide services to Canadian governments and consumers, they should benefit from the same government support measures as the non-profit sector.

Such measures now include subsidies and tax supports; exclusive and preferential contracting regimes; and effective exclusion of commercial providers from social services markets.

For example, several provinces will not contract for-profit corporations to provide long-term or home care services for the elderly -- and the evidence clearly shows this is the best policy in terms of quality of care.

The not-for-profit sector includes thousands of social agencies which operate at arms length from the state, but are funded and supported by governments to help meet our social needs. They include providers of child care and elder care services, residential and community-based services, and services to people with special needs such as persons with disabilities and women fleeing domestic violence.

The significance of a strong non-profit sector for social development has been formally recognized by the federal government through the Voluntary Sector Initiative.

In some provinces, notably Quebec, governments have seen non-profits as key partners for the delivery of high quality social services.

In other provinces, notably Ontario, funding for non-profits has been cut deeply under a privatization agenda. The federal government has publicly committed to safeguard our ability to support, regulate and deliver social services as we see fit.

But these safeguards tend only to apply in sectors purely not for profit -- which is not necessarily the case for the social service sector.

In the context of privatization of social services, existing safeguards may not be adequate protection for a government that decides to shift direction by expanding not-for-profit delivery or by forging partnerships with the for-profit sector.

NAFTA has shown us that trade obligations have unintended consequences, and that trade panels favour very limited exceptions for public programs.

And the current NAFTA exemption for social services -- delivered for a public purpose -- is vague and unlikely to count for much if private for-profit delivery becomes entrenched.

Yet this is precisely what is happening in the delivery of home care and long term care services for the elderly.

In our study, we present a detailed analysis of what might happen if a future Ontario government tried to establish a Quebec-style partnership of public and not-for-profit providers in home care, excluding the commercial sector.

A successful NAFTA challenge from commercial providers could significantly increase the cost to Ontario taxpayers. More insidiously, the threat of such a challenge could deter future governments from pursuing any approach that favours non-profits over existing commercial providers.

Our study also uncovers prospective dangers from developments now being considered at the GATS and FTAA negotiating tables. Government preferences to not-for-profits in the tendering of contracts could be threatened by GATS provisions on national treatment, market access and domestic regulation if social services were to be scheduled by Canada, or by possible changes to the WTO Agreement on Government Procurement, or by FTAA procurement provisions.

Grants and contributions to not-for- profits could be undercut by GATS or FTAA rules on subsidies.

The dangers of a conflict between social policy and trade policy are real, unless the federal government maintains, clarifies and strengthens the current reservations and exclusions for social policy purposes.

Let us hope that International Trade Minister Pierre Pettigrew and his officials are listening, before the two worlds of policy collide.

Andrew Jackson and Matthew Sanger wrote the book, When Worlds Collide: Implications of International Trade and Investment Agreements for Non-Profit Social Services, published by the Canadian Council on Social Development and Canadian Centre for Policy Alternatives.

A Pan-Canadian Approach in Providing Accessibility Devices

Editor's Note: The following brief article describes the mandates of the National Coalition on Vision Health (NCVH). Robert Fenton, NFB:AE President, has been asked to represent the interests of blind and vision-impaired consumers through his involvement with the Coalition.

The effort to ameliorate the living conditions of persons with disabilities, including those who are visually impaired, has been, broadly speaking, carried on at three interdependent levels: attitudinal change (both at the individual and societal level), the acquisition of skills, and the development and provision of accessibility devices to compensate for whatever functional barriers impairments may cause.

The degree to which accessibility devices are available to visually impaired Canadians was examined recently in a paper entitled "Toward Implementing In Unison". (The term "visually impaired" includes totally blind persons, persons who experience a significant degree of vision loss, and persons who are deaf blind.)

Notwithstanding considerable efforts by various jurisdictions in Canada to provide accessibility devices to visually impaired persons, the research data indicate that significant gaps remain. These gaps concern adequacy within existing programs, inconsistency and inequity across programs and jurisdictions, and the absence of programs in some jurisdictions altogether.

Visually impaired Canadians obtain accessibility devices in various ways. The particular way depends on the type of device, the purpose for which it is intended (for example, school, work, or leisure), the part of the country wherein the person resides, etc. Some visually impaired Canadians, as shown by the data, may be completely unable to obtain certain devices, unless they are in a position to cover the entire cost themselves. In addition to government programs, the charitable sector provides some assistance.

People who are blind face difficulty in accessing visually presented information, such as the printed word without the assistance of another person or a device. Over the years, various devices have been developed that enable people with visual impairments to read and write. These devices range from Braille typewriters and magnifying aids to sophisticated voice equipped computers and optical character recognition machines.

The importance of accessibility devices for persons who are blind or visually impaired cannot be overstated. Simply put, accessibility devices that enhance or substitute for vision are to blind people what ramps are to people who use wheelchairs. In the United States, the National Council on Disability investigated the role and potential of accessibility technology for persons with disabilities. They concluded, quoting Radabaugh (1988) that "For Americans without disabilities, technology makes things easier. For Americans with disabilities, technology makes things possible."

Notwithstanding the occasional Luddite ostrich, individuals with disabilities have long recognised that assistive technology is as cost-effective as it is necessary. The National Council on Disability found that, as a result of technology, 62% of working-age persons with disabilities were able to reduce dependence on family members, 58% were able to reduce dependence on paid assistance, and 37% were able to increase earnings.

When asked to estimate the impact of equipment on their quality of life, assistive technology users reported that without the equipment, their quality of life on a scale from 1 to 10 was around 3; as a result of the equipment, it jumped to approximately 8.4. Clearly, for independence and quality of life, accessibility devices are essential, and the increased independence for the individual results in lowered costs to society as a whole. People who are visually impaired become more independent, productive members of society, who in turn contribute to the economy, rather than being dependent on social assistance in the long term.

As already indicated above, the current approach of providing accessibility devices in Canada is seriously inadequate. (These inadequacies are documented in greater detail than can be accommodated in this short article in "Toward Implementing in Unison", which can be obtained in every format and in both official languages by contacting Dawnelee Klomp at 613-562-0000 ext. 158) or by e-mail at klompd@cnib.ca.

Only four provinces (Alberta, Saskatchewan, Ontario and Quebec) provide public coverage for accessibility devices, and none of these provide full access for visually impaired persons to affordable low vision, low technical and high technical accessibility devices. In other provinces, and for those who do not qualify for existing provincial programs, blind Canadians often do without the equipment that could assist them in their lives. The mobility of Canadians between provinces, a fundamental Canadian principle, is restricted, by reason of inequitable services, for persons who are visually impaired.

This situation clearly goes against numerous recent government reports on "disability supports" that have encouraged the establishment of programs to assist Canadians with disabilities in obtaining needed supports, including accessibility devices. At the federal level, support for accessibility devices has been demonstrated in various ways, including some compensation for the costs of disability provided through income tax relief. As well, through Human Resources Development Canada programs (and related, cost-shared provincial programs), funding for devices to be used in employment is often provided. The need, however, is greater than existing funding.

Aside from the provincial programs, there is some assistance available for children and for working age adults. However, seniors, who are the fastest growing segment of the population, and the group most likely to be visually impaired, have very few options for obtaining accessibility devices. First Nations Peoples (who have an extremely high rate of disability in general, and of vision impairment in particular), are even more disadvantaged than their fellow Canadians. For them, each funding source tends to see itself only as a last resort, with the result that a person can be shuffled back and forth for long periods of time without receiving services.

My research has revealed a patchwork of services. A consistent funding program for accessibility devices/technology does not currently exist in Canada. The programs that do exist vary widely. Depending upon the jurisdiction, there are variations in eligibility criteria, type of device covered, permitted uses of provided devices, ownership of the device, and cost to the client. None of the programs or jurisdictions provides a comprehensive service for all visually impaired persons of all ages, who require devices for a variety of purposes. These inconsistencies, inadequacies and gaps affect adversely the quality of life of many visually impaired Canadians. They thus undermine their efforts to contribute fully and independently to Canadian society.

Existing programs are extremely complex, and people have difficulty understanding the systems. Visually impaired Canadians are often unaware of the options available to them, and the variation in coverage between jurisdictions. Many seem to have given up attempting to navigate this complex system.

Part of the complexity stems from jurisdictional confusion. Particularly in the case of First Nations Peoples, but evident elsewhere as well, multiple, uncoordinated programs claim to be the provider of last resort. The result is that required services are not provided in a timely manner.

While there is clearly no pan-Canadian program for accessibility devices, the Canadian government has already indicated that provision of such services can be part of the federal mandate, as there is currently a federal funding presence. There is clearly a commitment to ensuring that visually impaired Canadians, whose well-being and fulfilment of citizenship is a shared responsibility, be provided with some devices. (This, of course, applies equally to persons with other disabilities. While I examined accessibility devices in relation to visually impaired Canadians, I recognise that any systemic response must take into account the needs of people who require accessibility devices due to other disabilities.)

Seniors receive the most inadequate services. As the fastest growing group of persons with visual impairments, seniors have an incredible need for accessibility devices that is, at present, unmet, and that will continue to grow with the senior population.

Children's service provision, particularly for educational purposes, is more advanced than that for other age groups. This shows the investment by many levels of government in ensuring that visually impaired children are able to learn along with their peers. Still, however, there are gaps, especially for post-secondary education.

Much of the criticism directed at the current approach focuses on the fact that persons and their needs are served through inflexible systems, creating, thereby, the impression that systems do not serve but rather constrain. There is a need for a functional approach, focusing on improved quality of life and independence. Through some of the systems, devices are provided under such inflexible conditions that the positive impact of the device is lessened; for example, by restricting its use to work or home, or requiring that it be "medically necessary".

"Toward Implementing In Unison" suggests that the current approach has serious negative implications for visually impaired Canadians, especially those who reside in provinces without an accessibility device program. A consistent Canadian approach would recognise the value of these devices in the life of an individual with a disability. Access to such devices is often a necessity for inclusion and independence, and thus for full citizenship.

Achieving a coherent and equitable Canadian system presupposes a number of political factors, not all of which can be addressed here. At the inter-governmental level, two recently concluded Agreements, the Social Union and In Unison, contain the public policy instruments and modalities by which this issue can be handled. In my view, undoubtedly, the most important factor in bringing change are the actions or inactions of those of us who are concerned about our future well-being, as well as that of our brothers and sisters. The critical question is: can concerned organisations and individuals act in concert in response to this challenge? Our future actions will tell. Let this be a beginning.

A national vision. A national dream.

Who are we?

A group of stakeholders that includes ophthalmic professionals, educators, researchers, consumers and associations that are interested in improving communication and co-ordination of efforts between partners.

Mission

The National Coalition on Vision Health is a coalition of Canadian organisations and service providers of vision care, research, education, rehabilitation and consumers. The Coalition will provide leadership for the improvement of vision health and eye care. They will provide this leadership through research and public awareness, by supporting public and professional education and information, vision-loss prevention initiatives, vision health, and related advocacy.

History

The National Consultation on the Crisis in Vision Loss, held in Toronto in 1998, was a momentous opportunity for diverse groups of Canadian stakeholders to come together and do something remarkable. They agreed that there is a current crisis in vision loss and they decided that they needed to form a National Coalition to identify priorities and take a multi-disciplinary approach to addressing these priorities. They agreed that action must be taken immediately. In the closing address the Assistant Deputy Minister of the Health and Programs Branch of Health Canada, Ian Potter, said "Health Canada understands the need for collaboration and is prepared to make a contribution to support the collaborative efforts of this meeting."

The Result

With support from Health Canada, the National Coalition on Vision Health has financial support for three years to establish themselves and develop a national eye care program that will be recognised at all levels. The Coalition committee has met on two occasions and several subcommittees have been established. We are in the process of developing an extensive database of information sources and contacts within the field of vision health.

If you would like to receive additional information regarding the Coalition's activities, please contact: Dr. Don Farrell, Chair, National Coalition on Vision Health, E-mail:drdoom@nbnet.nb.ca Phone: (506) 634-8484

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