Our most vulnerable people deserve a full chance in life

“My boy is going to have the same opportunities as everyone else.”

Mama Gump, from “Forrest Gump”

When my Pierce was born six years ago, it took less than a half hour for his dad to look at me, fear in his eyes, and say those words: “Something is wrong.” Pierce looked dazed; he didn’t want to nurse; he wasn’t interested in us and, worst of all, he seemed to be in pain, a memory that haunts me even now.

We began an odyssey through the developmental disability and medical systems, and we’re better for the experience. Our son, thanks to well-funded and progressive county and state programs, is thriving. Pierce’s care will always be more complicated than that of his typical peers, and he will always be medically fragile and socially vulnerable. But he is lucky to have had the best-odds start.

As he ages, though, the system gets less responsive. We’re applying for services through our Community Developmental Disabilities Organization. Once we have everything turned in, the wait for the services to which he is entitled will be years.

It doesn’t matter that the law mandates services for children and adults with disabilities; the resources simply aren’t there.

The good people who work in the system are not to blame. It isn’t my place to assign blame to any one person or group of people.

We all bear the responsibility for this inequity. Pierce is everyone’s baby. People like Pierce are all our children, all our aunts, uncles, brothers, sisters, neighbors, friends, fellow human beings.

There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.

The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities — the big ones and the little ones — are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.

As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus. So, for now, we’re gathering our documentation for Pierce. We will take our place in line behind other deserving Kansans and their families.

In the meantime, I will keep pushing, keep protecting, keep advocating. I hope that by the time Pierce is grown up, disability rights will have gotten a stronger foothold in our culture and that he, along with other special needs people, won’t be so invisible anymore.

Everyone has the power to make this so — please, let legislators know that you support bills like the Invisible Kansans bill, which died in committee. Please open your mind and see the exquisite, unquantifiable beauty and enrichment children and adults like Pierce bring to their families and communities. We all have the enviable opportunity to be on the right side of history this time. Let it be.

Lisa Cannady is a social services counselor at Lakemary Center in Paola and “Mom to Pierce.” She lives in Olathe.

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Fiscal neglect in Kansas

Kansas’ fiscal neglect of its mentally retarded and developmentally disabled citizens is a disgrace. More than 4,000 families are waiting for services. Some have been on hold for more than four years.

Workers who help severely disabled Kansans live in the community receive a paltry average wage of $8.83 an hour.

Lawmakers of all political persuasions agree that the long waits and low wages are a problem. It’s a complicated situation, they say.

That’s only because the Legislature has allowed the problem to get out of hand. Lawmakers, along with then governor Kathleen Sebelius, made services for developmentally disabled Kansans a low priority.

Even with the state’s miserable budget picture, the remedy isn’t very complex. The Legislature’s own research has shown that a $70 million infusion over three years would greatly ease the strain on the home- and-community-based system.

The choice shouldn’t be between money for disabled citizens and money for public education, as some lawmakers frame the situation. Kansas has handed out hundreds of millions of dollars in subsidies and tax breaks over the last 10 years.

In recent weeks, a commission has recommended phasing out two state hospitals that care for people with developmental disabilities. Members proposed first moving clients out of the Kansas Neurological Institute in Topeka, and then downsizing and eventually closing the Parsons State Hospital and Training Center in Parsons, Kan. Clients at the hospitals would move to smaller care facilities in their home communities.

Though financial considerations prompted the discussion, many advocates support the move to community-based settings.

But any decision to downsize the two hospitals must be accompanied by an inviolate commitment that freed up money would be used for services for the developmentally disabled.

But no single cost-saving measure will solve the problem the Legislature has brought upon itself and the state’s disabled citizens. Lawmakers this session must do the right thing and find substantial money to help this group.

Posted on Sat, Nov. 07, 2009 10:15 PM

 

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Fiscal neglect in Kansas

Kansas’ fiscal neglect of its mentally retarded and developmentally disabled citizens is a disgrace. More than 4,000 families are waiting for services. Some have been on hold for more than four years.

Workers who help severely disabled Kansans live in the community receive a paltry average wage of $8.83 an hour.

Lawmakers of all political persuasions agree that the long waits and low wages are a problem. It’s a complicated situation, they say.

That’s only because the Legislature has allowed the problem to get out of hand. Lawmakers, along with then governor Kathleen Sebelius, made services for developmentally disabled Kansans a low priority.

Even with the state’s miserable budget picture, the remedy isn’t very complex. The Legislature’s own research has shown that a $70 million infusion over three years would greatly ease the strain on the home- and-community-based system.

The choice shouldn’t be between money for disabled citizens and money for public education, as some lawmakers frame the situation. Kansas has handed out hundreds of millions of dollars in subsidies and tax breaks over the last 10 years.

In recent weeks, a commission has recommended phasing out two state hospitals that care for people with developmental disabilities. Members proposed first moving clients out of the Kansas Neurological Institute in Topeka, and then downsizing and eventually closing the Parsons State Hospital and Training Center in Parsons, Kan. Clients at the hospitals would move to smaller care facilities in their home communities.

Though financial considerations prompted the discussion, many advocates support the move to community-based settings.

But any decision to downsize the two hospitals must be accompanied by an inviolate commitment that freed up money would be used for services for the developmentally disabled.

But no single cost-saving measure will solve the problem the Legislature has brought upon itself and the state’s disabled citizens. Lawmakers this session must do the right thing and find substantial money to help this group.

Posted on Sat, Nov. 07, 2009 10:15 PM