Why are programs a bad thing?

Over the course of the past few years, I have heard that offering programs for people who have an intellectual disability is a bad thing.

As a result, government funding to agencies and organizations that support people have not received any new funding for programs. The Government of Ontario has embarked upon a "Transformation of Developmental Services" with an emphasis on personal choice and individualized funding. It's supposed to be a way of responding to people more effectively and respectfully.

Yet with over 20,000 people in the province who have unmet needs and are on a waiting list for supports and services, how responsive is the new approach?

Families are tired. Families are stressed. In their mid-life and senior years, families want to know that support is available for their son or daughter. They don't want to quit their job and they don't want their son or daughter's disability to consume their whole life.

Guess what? The number one question that we are asked by parent that have teens graduating from high school is "What kind of program is available?" I can't tell you how difficult it is for me to repeatedly reply to families "there isn't one". Silence on the other end.

"Well, what am I supposed to do?" they ask. "Well, your son or daughter writes a personal plan and you apply for individualized funding" I reply. "But where are they going to go?" they continue to ask. "I don't know what I'm going to do...where are the programs?"

I try to explain to them that the current philosophy believes that programs are no longer considered to be a good thing. That support agencies no longer receive funding to offer a program for people and that we are moving toward more community based support.

"Well that's absurd" they reply. "I don't want my son or daughter to sit in one room and do piece work, but I certainly need the help of an organization to support my child and to help them have something to do and have a meaningful life." "I can't do this on my own."

"Why are programs such a bad thing?"

I explain that people are healthier and safer in their community and that the more community connections we have, the richer our lives will be; no different for people who have a disability. Parents usually agree. "I get it" they say, "but that's what an agency can do...connect my son with people in the community, and if he is having a challenging day, I know that he has somewhere to go." "I believe in all of that" they say, "but I don't want to quit my job to do it and he has multiple challenges and it's not so easy to support him all day." "And what about my life too?" "I am tired and I need a break."

They further explain that in their mind "a program is something that is offered according to what their son or daughter wants to do and that a few people with a similar interest may hang out together." They are very clear about the fact that they need assistance from an organization.

I empathize with the parent and then encourage them to fill out the application for funding, knowing that they will be placed on a very long waiting list and that it could take years for them to see any funding. I see the stress on their face and I hear the fear in the question "what am I going to do; what is he going to do?"

And then I ask myself "why are programs a bad thing?"