Monday, August 11, 2008

OM 21 Response to Bill 77

Opportunities Mississauga for 21+

Remarks to the Standing Committee on Social Policy, Queens Park
August 5, 2008

Ron Pruessen:
On behalf of Opportunities Mississauga for 21+, we appreciate this invitation to speak to your committee. Our grassroots organization is 8 years old and represents an ever-increasing number of Mississauga families – 150 families by this point. We are the mothers, fathers, siblings, and grandparents of young and middle aged adults with developmental disabilities. In my own case, I am the father of a 31-year old daughter – Caroline – who is both physically handicapped and intellectually disabled.

Our identity as family members is important. Because of who we are, we have profound experience with developmental disabilities: between us, our 150 families have more than 6000 years of experience dealing with people with developmental disabilities. Yes: 6000 years of 24/7 experience. This gives us a special vantage point from which to consider Bill 77 and we have given the bill our close attention.

Our interest is an extension of our serious engagement with the entire “transformation of services” effort. The Honourable Sandra Pupatello, then Minister of Community and Social Services, announced the “study and review” process that has helped to generate Bill 77 at our Annual General Meeting in 2004. We then participated extensively in the public forums that led to the publication of the Ministry’s “Opportunities and Action” document. Indeed, we met several times with previous Parliamentary Assistant Ernie Parsons as that study was being prepared and met, as well, with the Honourable Madeleine Meilleur.

What does our personal experience and our organizational engagement lead us to see?

We want to emphasize two components of our thinking here: On one hand, praise and appreciation; on the other hand, the way in which our positive feelings are being restrained by concerns and doubts.

Positive feelings deserve initial emphasis. Our families were struggling with the severe shortcomings of Ontario’s programs for adults with developmental disabilities before the present government was elected. We know – we really know – how bad the problems were in the 1980s and 1990s. We remember all too well how carefully gathered evidence and clearly reasoned pleas for attention to long-neglected needs were met with callous indifference or empty words. To its great credit, this government has admirably replaced closed doors with open ones and has been gradually convincing many of our members that its heart is genuinely in the right place. Bill 77 suggests the possibility that more recently minted words do not have to simply float away on the wind. We extend our heartfelt thanks for this and say “Well done – so far.”

The “so far” in this praise brings us to the “concerns and doubts” that complicate our appreciation. As we look at Bill 77, our members are quite worried about what we see as elements of vagueness and incompleteness.

We would highlight two examples that are particularly important to us:

Barb Ashcroft:
First, we strongly believe that a milestone piece of legislation like this should include a preamble that clearly identifies the rights of Ontario citizens with developmental disabilities.

My name is Barb Ashcroft and as a member of the Retired Teachers of Ontario (District 39 Peel) Political Action Committee I am here to support OM 21. Our organization is advocating on behalf of seniors and aging parents who find themselves in great stress without sufficient support for residential and respite services for their adult children with developmental disabilities. The adult children of these parents are citizens – no one in this government would deny that – and a bill that seeks to initiate more serious action addressing the problems of this especially vulnerable group of citizens should clearly declare that they are entitled to minimum standards of care and support in key areas. Through the Education Act these young people were entitled to programs and services without prioritization and waiting lists. We wonder why this kind of entitlement no longer exists after age 21 when the individual's disability continues. Given the needs and vulnerabilities of this group Ontario citizens, their right to things like appropriate housing supports should be declared.

Without an explicit recognition of rights, Bill 77 would lack an appropriate grounding – as well as the standards against which progress can be measured.

Ron Pruessen:
Our organization’s second concern with Bill 77 is the absence of budget information – the absence even of words about more abstract budget targets or a projected trajectory for improvements. Problems that have been profoundly neglected for decades cannot be solved without the provision of significant new resources: our 150 families know that – as do thousands of other families like ours across this province.

We would frankly have preferred to have Bill 77 accompanied by budget information. If the budget details are going to come later, as seems to be the case, we have no choice but to be patient – as we have been patient so many times before. But you need to be aware of the fact that we will be watching carefully to see what substantive life will be breathed into this bill. You have brought us to a moment where we now expect meaningful, real progress on the road you have encouraged us to chart with you…meaningful, real progress, in particular, on matters like respite and residential supports for the thousands of families who did not institutionalize children 20, 30, or 40 years ago…the thousands of aging families struggling with the strains and even health problems produced by decades of exceptional responsibilities.
Sheila Swinton:I’d like to help you understand why respite and residential supports and funding are so important to the caregivers. In many of our cases our loved ones are stronger and more energetic than ourselves. Due to the nature of behavioural variances that can and do result in crisis situations we are often left physically and mentally drained. Also due to the aging process of ourselves we have less physical energy to deal with the physical demands required to care for our family members. Often there is a very despairing and emotional strain as well from being constantly trapped because we cannot leave them unattended. Our every move has to be carefully planned and calculated in advance. For example, to do something as simple as step out to the store briefly. And then, of course,having to pay someone just to do that. Also due to our aging it is a concern who will take care of all these responsibilities when we can no longer do it, and we worry about when we are no longer here at all. We desperately need the services related to respite and residential support. We already have in place an assessment process regarding all this, and direct funding or service funding models are already in place, so we don’t need to start over again regarding these areas, but we need to expand funding so that newrespite and residential facilities can be created. These are our main concerns.

Ron Pruessen:
It is a wonderful thing that you have worked with families and agencies to chart a road forward – but it is an achievement that now carries serious responsibilities with it. Do not imagine that the admiration that has been generated by the “transformation” effort will either linger or quietly fade away if words do not translate into deeds. There will almost surely be a whirlwind of disappointment and anger if the government sees the essentially preparatory provisions of Bill 77 as sufficient – or if the government believes the template or the “shell” conceptualized in this bill will allow the “transformation” effort to quietly come to rest on a backburner. Do not imagine, either, that tiny funding increases will allow achievement of a necessarily ambitious vision – especially if minimalist new funding is dedicated primarily to administrative procedures, application centers, and the like. If this happens, then the template or “shell” that Bill 77 is designed to create will be seen as the set-up for a “shell game” – and “shell game” will be a fair and loudly proclaimed label.

To conclude: We urge the government to continue as it has begun – to continue boldly as it has admirably begun. Take the splendid impulse to transform the services provided to Ontario citizens whose needs and vulnerabilities have been neglected for decades and match fine words with powerful actions.

For our part, we will continue to work and to offer praise if you also continue. Families like ours are as ready as we have always been to help devise quality programs that are efficient and cost-effective. We are anxious, in fact, to pair community energies and resources with government resources to create services and opportunities that neither of us could create on our own. (Opportunities Mississauga, for example, has designed a transitional respite and residential program that would allow a group of 12 adults with developmental disabilities to receive significantly improved services with the same dollars that would ordinarily support 4.) We do not expect you to do this alone, in other words – indeed, we do not want you to do this alone – but you must be prepared to go beyond words and administrative changes if partnerships are to succeed in solving very serious problems. What a wonderful achievement it would be to solve those problems. What a terrible failure it will be if you do not now move across the threshold on which you are poised.

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