Making Sense of Support Programmes for People with Disabilities

By Fran Vargo

People with disabilities want to live independently in the community. To do this, many of them need supports that substitute or compensate for certain abilities. Even people who do not typically think of themselves as having a disability sometimes need these same kinds of assistance because of age, illness or fragility.

Over the last 20 years or so, ingenuity, doggedness, some liberal-mindedness and plenty of hard work have resulted in a plethora of government programmes designed to satisfy emerging needs. Canadians in general, and those with disabilities in particular, might be surprised to find out just how much money is spent each year by federal and provincial programmes to support people with a variety of disability-related needs. Unfortunately, a reliable figure is not available. In Alberta, we have guesstimated that in excess of $500 million of provincial funding alone is allotted annually to support programmes for people with disabilities, excluding income support. The Neil Squire Foundation estimates that $700 million is expended in B.C. annually.

What do people with disabilities get from all this money? In most provinces, people with physical disabilities get access to some form of home care/home support/attendant care service. Except where economies of scale dictate group home or other congregate living arrangements, this support allows them to live outside an institution in most cases.

In some provinces, technical aids ranging from wheelchairs to elastic support stockings to raised toilet seats may be obtained by some people under certain conditions (i.e. financial status, nature of disability and/or age). Home adaptations to accommodate a disability, computer adaptations, Braille texts and medical supplies are variously available to those who meet sometimes narrow and arbitrary criteria.

People with developmental disabilities may have a somewhat different selection of supports available to them, including job coaches, dedicated vocational training programmes, residential and day support workers and various day programmes. Those with chronic mental illness have a smattering of programmes focused on medication compliance, daily living skills and sometimes even employment. Compared to the other two groups, access to supports for independence is minimal.

Community supports, as they are collectively referred to, tend to be provincial rather than federal in origin. This means they are developed and administered by provincial governments according to their willingness and ability to provide. There are no federal standards, not even those global ones dictated by the canada Health Act: universality, accessibility, portability and comprehensiveness. Prosperous provinces tend to have a broader range of support programmes with more generous benefits than poorer provinces.

Even Vocational Rehabilitation of Disabled Persons (VRDP), which is governed by the Federal VRDP Act, places no requirements on provinces. This is because it is enabling legislation only -- if provinces spend a dollar in any of the activities described in the Act, they can get 50 cents back form Ottawa.

Within provinces, the system of support programmes is fractured. Beneficiaries under Worker’s Compensation Board or motor vehicle accident claim funds frequently have access to supports that others only dream of. People who are born with a disability or acquire it through disease or non-compensable injury often find their access to equipment and personal support tied to a need for income support. If an individual qualifies for welfare assistance, supports can also be provided at government expense; otherwise, the individual must find the means to pay for his or her own supports.

This link between income support and personal support is unfair and counterproductive. It is a strong disincentive to seeking employment. The financial independence that becomes possible with work is frequently offset by the extra costs that must now be borne by the individual. Tax deductions notwithstanding, employment can be very costly for the person with special equipment, support, medication or housing needs. Small wonder people with disabilities remain among the poorest of the poor.

Are there solutions? There are at least two proposals out there right now, one from the Premier’s Council on the Status of Persons with Disabilities in Alberta, and the other form the Neil Squire Foundation in B.C. Although remarkably similar in philosophy, each advocates a somewhat different approach.

The Neil Squire Proposal
This Vancouver-based organization conducted a cross-Canada survey of personal support/attendant programmes for people with disabilities in 1989-90. Information learned about the fragmentation and frustration people experienced prompted the development of a proposal for a different approach. Called the Participation Enhancement Plan for Canadians with Disabilities (PEP), it proposes to merge federal and provincial disability-related benefit programmes into one comprehensive, federally administered plan. Basic income support is not included in PEP, thus separating the need for income support from the other costs of disability.

The following are the guiding principles for PEP:
- financial compensation is for disability-related costs;
- disability, not financial need, will be the criterion for eligibility;
- cause of disability is irrelevant for determining eligibility;
- payments will not be deemed income for the purpose of determining eligibility for income security programmes;
- payments will be in the form of individualized direct funding (dollars to the individual);
- the programme will be national in scope;
- the plan will be portable (available to all eligible Canadians); and
- disincentives to participation in activities such as education and employment will be eliminated.

Payments to individuals would be based on an assessment of disability-related needs and would come from the federal government. The money would be used to purchase the technical equipment and personal supports needed to remove barriers to independence created by the disability.

In its most recent draft (August, 1992), eligibility would be extended to people of all ages with permanent moderate to severe disabilities in the community (not in institutions), but excluding people with mental illness. Estimates are that between 1.1 and 1.25 million Canadians would receive benefits under the programme.

PEP funding is proposed to come from the elimination of existing federal and provincial programmes that provide disability-related benefits other than basic living costs. This means that while basic social assistance would not be included, any disability benefit coming to persons with disabilities receiving social assistance would be added to the pot. What is not clear is how the reverting of provincial funds to a federal programme would be accomplished. Veterans’ Affairs department is proposed to administer the programme.

The Alberta Premier’s Council Proposal
In 1989, when this fledgling Council undertook an extensive review of provincial government programmes and policies affecting people with disabilities, it was struck by the regularity with which the lack of appropriate and affordable supports was preventing people from living and working in the community. The situation in Alberta is possible better in some respects than other provinces, simply because of a healthy economy in the 1970s and early 1980s when many new programmes were established. But the system is still fragmented and frustrating.

The solution proposed by Council in its Action Plan involved consolidation of existing programmes (comprised of 22 programmes in seven departments) into one programme with a single administrative unit. Ideally, an independent commission could take responsibility for administration. Realistically, one existing department would likely become the home for the proposed Community Supports Programme.

A single administrative unit with one philosophy would eliminate the varying eligibility criteria found in existing programmes and would function primarily as a policy and planning entity. Service to individuals would be delivered through existing community facilities, such as health units located throughout the province, using funds allocated by the central administration. Individuals requiring and of the range of supports available through this programme would contact the local health unit (or other community site) for assessment.

Delivery of personal or technical supports would be partly a matter of individual choice, with the options of direct funding to the individual to purchase services/equipment; direct service delivery by the health unit; contracted services from other community agencies; or other options that might be developed. Supports would be provided on the basis of need for the support rather than on the basis of age, disability type or cause, or financial need, as is now the case.

Both of these proposals involve fundamental change in the way governments currently operate. For this reason at least, both will be a hard sell and both are each flawed in its own way. However, there emerges from these two approaches a framework for a workable national solution.

Elements of a Workable Solution
Placing responsibility for national standards on the shoulders of the federal makes some sense. Our entire health care system is governed by the Canada Health Act, so why not include personal and technical supports within this system? Some will argue that attachment to the health care system will mean a continuation of the medical model of patient care (a hierarchical, doctor-led approach in which the focus is on curing), but health units are already leaving that model behind.

The programme must be provincially administered in order to be manageable, and it must be locally delivered to give individuals the kind of say they want and need in service delivery. A "one stop shopping" approach would be feasible at the local level, in much the same way that the single point of entry model works for accessing long-term care in Alberta. An individual seeking a long-term care bed is assessed by Home Care and only approved for admission when all community resources available are still not enough to keep the person independent at home.

Flexibility is also an important ingredient. Many people with disabilities, especially those with few informal supports through family and friends, often do not want the responsibility of hiring attendants or negotiating the bets price on a piece of equipment. They prefer to have the service arranged and delivered by others. A community supports programme needs to accommodate both desires.

Separation of support needs from income needs is essential. People with disabilities will never achieve a level playing field without this. The question of whether individuals should ever share in the cost of their supports is a tough one. On principle, these supports should be treated liked other health care benefits, but the staggering growth in health care costs seems to foretell the demise of universality as we have known it.

Finally, the supports to help people live independent lives must be available to all those with an assessed need. Part of the present fragmentation is a result of programmes developed to satisfy interest groups seeking solutions to their problems without consideration of common needs across interest groups. If we are going to campaign for a new system of community supports, let us not repeat the mistakes of the past by making artificial divisions between deserving and non-deserving groups.

What Will it Take?
The trade show at the Independence 92 conference lats April was both wonderful and frightening. Examples of high-tech solutions to mobility and communication problems deliver two messages: 1) technology can solve most problems; and 2) it costs a lot of money to do so. Imagine the fear that would strike at the hearts of politicians and bureaucrats if they believed that people with disabilities would settle for no less than $20,000 van conversions or $30,000 computerized wheelchairs!

To accomplish the transformation that is envisioned in "barrier-free" access to supports, the following must happen:
- people with disabilities must campaign for change. Special interest groups must continue to come together over this issue as they have over the Constitution and the Omnibus Bill;
- politicians must be convinced of the "Right"-ness and the "rightness" of such change. Provision of community supports is viewed as a long-term investment in people and becomes cost-effective rather than costly. It is no longer fair or just to deny citizens the opportunity to live in the community because of a disability;
- once convinced of the need for change, action is required by government that does more than tinker with the details of existing programmes; and
- finally, with these barriers removed, people with disabilities must embrace the concept of social and economic integration with all the responsibility that it entails.

Along the way to a rational and equitable community supports system, many will ask, what are the risks? This is the wrong question. We ought to be asking, instead, are we satisfied with the way things are now? If the answer is yes, the battle for independence is already lost.

(Fran Vargo is the Director of Research and Policy Review with the Alberta Premier’s Council on the Status of Persons with Disabilities.)