"Gaining an independent life" by Laurie O'Meara

Dear Ms. Gretzky,
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I am writing to express my concerns over the proposed cuts to independent facilitation in Ontario.  Our nephew, Dan Balind of Harrow, has benefited from these services and is on his way to gaining an independent life away from his parents as his two sisters have done before him.

Dan Balind was born in February, 1988 with a team of experts gathered around for a C-section.  Prenatal testing had determined that Dan had some type of brain damage (“myelomeningocele?”) that would need immediate surgery at birth.  Doctors and therapists were not sure what type of damage or delays Dan would have, but the doctors in London were prepared to operate and give him the best chance possible because of the wonders of the prenatal screening that was available.

Dan has always been a kind, thoughtful and caring relative.  His memory puts aunts, uncles and grandparents to shame; his recall of detail is phenomenal.  Physical and cognitive impairments have not diminished the outstanding person that he is to friends and family who have watched him bloom since childhood.

Along with being part of Dan’s “circle of support”, I have experience “in the States” advocating for my own son with special needs.  In 1992 our second son Matthew was born as an emergency C-section in distress.  Matt was without oxygen for 7-8 minutes before the doctors got to him and resuscitated him. We knew from the beginning that much of Matt’s brain had been compromised, but we would not know until later how much of his development would be impacted. 

Dan’s parents, Karen and Rick Balind, were the first to come see us at the hospital.  They assured us that whatever happened, we could handle it; they had been working with Dan for four years.  Not only is Dan an example of the collaboration between families, doctors and service providers, he is an ambassador to family, friends, and their Harrow community of someone who was “different”, “impaired” or “challenged” and still as important to our family and his community as any of our other nieces and nephews.

In trying to learn about advocating for MY son with special needs, I participated in a program called “Parent Leadership Program” sponsored by the Arc Michigan in Lansing, Michigan in 1997-1998.  This program brought in service providers, legislators, advocates, and persons with disabilities to let us know procedures to access services and how to approach those in power.
The most dynamic speakers we had during this training were Jack Pearpoint and Marsha Forest.  In the mid-90’s, Toronto was seen as the model of inclusion and advocacy.  Jack and Marsha were training people IN THE STATES to try to implement Canada’s models of inclusion and service to all citizens.  Programs such as MAPS, PATH, and “circle of support” are now used in community mental health programs across Michigan and across the U.S.  Jack and Marsha brought these “new concepts” from Toronto to enlighten American service providers about more humane, cost-effective plans while the institutions that had often been the only choice were being closed down.

In Michigan, the laws for special education provide services for students with disabilities through age 26.  My husband and I knew that we had time to prepare for transition and “what would come next” after Matt was ‘aged out’ of his school/life skills program.
Due to his complex physical problems and weakened immune system, our son Matt died at age 16 in 2008.  We were never given the opportunity or the challenge of what happens after school…

On the other hand, when Dan’s schooling ended, his parents worked tirelessly to find him job training, job skills, paying work, volunteer work, and confidence to begin going out into the community on his own – starting with riding his bike or walking to the houses of relatives and friends.  That has increased to working with independent facilitation to enable him to make his OWN decisions about job placements, recreation choices, and housing choices now that he is 30.

I would hate to see that Ontario, the leader and example for the world in promoting independence and success for those with disabilities, would cut funding to such important services.  I know others can cite statistics about the cost of full-time care for those who cannot care for themselves.  For the cost of these supportive services, Ontario citizens can enjoy a productive life as participating members IN THEIR COMMUNITY.
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Please reconsider ending these valuable services March 31.  The rewards and successes far outweigh the costs.

Sincerely,

Laurie O’Meara