I should be working, but I saw this in the Toronto Star, and I thought of something...

It's an article about a family with a disabled child who was forced to relinquish custody of their 14-year-old son because they couldn't afford to care for him. The boy, who has a brain injury and is autistic, is now in a juvenile group home.
Ontario's new ombudsman is investigating complaints from parents who say they must give up custody of their severely disabled children to get them the care they need.

"If that is the case, it is simply unacceptable," André Marin told a news conference yesterday, promising results from a team of seven lawyers and investigators within weeks.

"This urgent and pressing issue demands our immediate attention."

Marin said parents have complained they are forced to give up their children under the "false pretense or artifice that the child is in need of protection or has been abandoned by the parents."

He urged any parents in this situation to contact his office, which has already heard from the parents of six children.

"As ombudsman of Ontario, I intend to be a voice for children and their families who've been treated unreasonably, unjustly or oppressively by the provincial government."
By contrast, many people with disabilities in the United States have no such recourse.

One of the long-running fights in the disabled activist community is the passage of the Medicaid Community Attendant Services and Supports Act, known as MiCASSA.

Right now, Medicaid pays for nursing home care, but not long-term personal attendants. People with disabilities who could live in their own homes, go to school and work, if they had a personal attendant - but who can't afford one - are often forced to live in nursing homes. This includes children and teenagers.

Personal attendant care would be less expensive for the state. More importantly, it would give people with disabilities control over their care and their lives.
Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly want their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice. . . .

MiCASSA, the Medicaid Community Attendant Services and Supports Act, is that alternative! Instead of making a new entitlement, MiCASSA makes the existing entitlement more flexible.

MiCASSA establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now have the choice where and how these services are provided. The two million Americans currently residing in nursing homes and other institutions would finally have a choice.
My favorite MiCASSA activist is Kyle Glozier, a young man I interviewed as a "roll model" for the KOW book. When Kyle was 14 years old, he testified before Congress and debated anti-disability-rights activist Clint Eastwood. From there, he was chosen to address the 2000 Democratic National Convention in L.A. In front of 35,000 people, with another 1.5 million watching on TV, Kyle brought down the house.

Kyle, who has cerebral palsy, uses a Liberator communication device, which converts typed words into spoken speech. He's in college now, planning to go to law school, and is a full-time activist. He says, "There's no distinction between my regular life and my life as an activist. I'm in this 24/7."

Kyle is one of the coolest young people I've ever met. He is truly a future leader of his movement.

Photos of Kyle addressing Congress and the DNC here and here, and tons of information about MiCASSA on this website.


David Cho said...

Even though I am against the concept of the welfare state, society is obligated should protect truly disabled people and there are many who fall into that category. The system is subject to a lot of abuse and misuse, but that still does not preclude us from protecting the truly needy.

laura k said...

It benefits society to enable more people to be healthy and productive. It's actually cheaper to provide a home attendant than to institutionalize people.

To me, the whole point of society is to provide these kinds of services. You might not need them now, but you could tomorrow. Disability is the one minority that anyone can join.

laura k said...

"The system is subject to a lot of abuse and misuse..."

Everything human is subject to abuse. Be it government, corporations or social programs, they are all products of humans, and so are open to fraud and abuse.

I suspect the abuse in all social programs combined is but a tiny fraction of the abuse in, say, Enron, WorldCom or Adlephia. And no one talks of dismantling capitalism because of it.

David Cho said...

Great point about corporate America which has come to represent the worst of capitalism. I hope those involved in fraud with pay dearly.

BarbaraFromCalifornia said...

Thank you for bringing this article to our attention. Sadly, those who suffer from mental illness or disability seem to be denied more and more services all the time. It is truly a horror story that our society, which can fund a war outside of our own country, cannot take care of those with disabilities at home. It makes me pause and wonder why.

laura k said...

"It is truly a horror story that our society, which can fund a war outside of our own country, cannot take care of those with disabilities at home. It makes me pause and wonder why."

Why: $$. War is profitable. Caring for people is not.

That's my perspective, anyway. This country doesn't seem to give a shit about taking care of people. It's too busy making money and acting tough.

Thanks for appreciating the post and commenting, Barbara.

David Cho said...

I have a question, Laura. Did you support Clinton's action in Kosovo? Why/Why not?

laura k said...

No I did not.

I supported very little that Clinton did. (Which does not mean I thought he should be persecuted for private issues which are legion in Washington.) I voted for Clinton in 1992 but did vote for his re-election, nor did I vote for Gore.

Living in NY State, which is a lock for the Dems, it has been easy to vote my conscience without helping Republicans get elected.

Why I was against the war in Kosovo. Short answer: based on a lie, politically motivated, made the situation worse, non-military strategies not exhausted. People died for things over which they had no control.

Sorry I don't have time to write more, or enough memory of the details to be more precise.

TJ said...

Disability is the one minority that everyone can join.

Sadly, most Americans are unwilling to face this possibility, just like they are unwilling to face their own death (thus the Schiavo nightmare).

This was an excellent post, btw. An issue more people should be aware of.

laura k said...

Thanks so much, TJ. Your comment helps answer Barbara From California's question. Our society won't face the necessity of these issues, except in these cases that become celebrities in the media. Then all of a sudden we need to pass a law.