OP-ED: Disabled beware of proposed Medicaid rules

Imagine this headline: "Federal Government Creates Blueprint for Lives of Women." Imagine it's followed by an opinion written by me – a man – saying that I think women need this blueprint and that only this blueprint can let them be who they really are. To boost my credibility, I say I have three daughters and a wife and proclaim myself a "professional advocate" for women. I say that this blueprint is not only best for the women in my life, but for all women. Where you'll work, how much you'll earn, how you spend your day, even how you'll spend your own money – the blueprint will decide for you and all women.

Reading between the lines, you see: "There, there, now sweetie, don't worry your pretty little head about it. I'll take care of all those mean, old, hard decisions for you."

A completely justifiable call for tar and feathers would follow.

Substitute the word "women" with "developmentally disabled" and you'll have the gist of the Aug. 19 opinion on proposed changes to Medicaid rules for people living with disabilities.

In that piece, three self-proclaimed professional advocates pushed a federal "blueprint" for the lives of millions of Americans and said Wisconsin must get in line. We know what is best for all people with disabilities, they are saying, and we will make these decisions for them.

The move away from an antiquated "father knows best" attitude toward the disabled began some years ago. Because people living with disabilities have long been deemed unworthy of even second-class status in society, paternalistic, condescending attitudes are deeply engrained in people and institutions. Changing them is not easy, but we've made progress. We must resist all uninvited crusaders who would wrench us back into the bad old days and diminish the right of self-determination.

Today, the right of self-determination is sacred. Self-determination is the idea you -- not others -- should make decisions about your life. A vital part of self-determination for people with disabilities is control of their human service funding. This is a hallmark of the self-determination initiatives emerging over the past 20 years.

When professional advocates and state and federal workers say they are drawing up a "blueprint for the future for all people with disabilities" the sounds we hear are a battle cry against self-determination. The sound we should hear next is the rest of us shouting: "No, no, no! You don't get to create blueprints for other people's lives! You don't get to decide what is best for them! You don't get to eliminate choices for people you've never even met!"

In addition to the attack on self-determination, the editorial builds a false implication that the developmentally disabled are forced to work in "sheltered workshops" that are both "isolating" and "expensive." Sounds horrible, doesn't it? The fact is that people in those workshops legally have the choice of whether to work there – the have the right to say "No." The fact is that in many rural parts of Wisconsin, unemployment is high, competition for jobs is fierce, and were there no workshops for them, people with disabilities would likely find no work. The fact is that this "blueprint" will subject tens of thousands of people now working to the soul-crushing isolation of sitting at home, day after day, as the years roll by. This "blueprint" will strip them of the chance to earn a paycheck while enjoying the pride, camaraderie, and sense of accomplishment that comes from having a job. The fact is that workshops are far less expensive than community jobs, because they require fewer job coaches per worker and much less travel.

I agree with the advocates that "A full range of options that include choice about home and work currently does not exist for families like ours across Wisconsin," but disagree that taking away one of those options is an acceptable, much less desirable, response. One less choice does not equal one more choice. Bureaucrats and advocates deciding what's best leaves you with fewer options, not more.

At the Madison Area Rehabilitation Centers, we emphasize the importance of choice, the joy of work, and the power of compassion. MARC is Dane County's premier provider of services to the developmentally disabled, has served the county for more than 60 years, and has some insight into what enhances and what diminishes the self-determination of our participants. MARC provided integrated, community-based job coaching before it was cool (one of our current participants is about to reach 30-years at the same job), and we offer a host of services to enhance and enrich lives, including jobs at some of our facilities, pre-vocational training, micro-enterprise support, educational and recreational activities, and vital day services.

One of the threats to self-determination is budgetary: Act 10, famous for its effects on organized labor, also limited local governments' ability to raise funds to pay for essential services. Unable to create a bigger budgetary "pie," counties are forced to annually shrink each slice of pie for each of those in the growing number of people at the table.

Another threat to self-determination is prejudicial: The myopic view that everyone -- despite their disability, interests, and desires -- must work is pushed by some advocates and already written into or presumed by some policies. All other choices for what to do with your day are of lesser importance, even expendable. This rather illiberal value system denies both self-determination and the benefits non-work activities bring, and it's peculiar that it would dominate in arenas that are otherwise so humane and so progressive.

Finally, self-determination for people with disabilities is limited by a lack of political will. If our state and federal political leaders (pick a party) were serious about wanting people with disabilities to work in community jobs, they would build real tax incentives and serious outreach programs to attract employers, prioritize spending to actually meet the human service needs, and clamp down on managed care organizations that play damaging games with definitions and funding. Without these changes, life's garden of choices for people with disabilities will more resemble a frozen wasteland.

Russell King is the executive director of the not-for-profit Madison Area Rehabilitation Centers.

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