Improve care for disabled? We all have a role

  • Article by: SANDRA GERDES
  • Updated: July 25, 2014 - 7:03 PM

Consider four key points as the state moves toward a person-centered approach.

An organization just outside the Twin Cities has served people with disabilities for 117 years. I’ve been its director for 17. So when a federal court monitor upbraided Minnesota’s Department of Human Services for poor progress on improving services for people with disabilities (“State not meeting needs of disabled,” July 13), I sighed.

 

I have a stake in the process at DHS. And by the way, so do you.

We’ve been undergoing reform for decades now, and accelerated reform for the last two years. The pendulum swung away from atrocious institutions in the 1970s and ’80s — a much-needed correction at a time when people with developmental disabilities were shut away, and had no say in their own lives. It continues to swing toward community-based care.

Like any pendulum, it can take us too far.

The Nonprofit Quarterly’s “People as Pendulums” is an excellent analysis of what’s gone wrong across the United States as we closed government-run institutions and released people with intellectual and developmental disabilities (called “I/DD”) into the community. It says, in part, that this resulted in “the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of ‘progress.’ ”

The U.S. Supreme Court’s Olmstead Decision gave the pendulum a mighty push: “Masterful messaging by nonprofit organizations and federally funded lawyers with mission statements and funding aimed squarely at eliminating all ‘institutional’ options quickly (and incorrectly) characterized Olmstead as a deinstitutionalization ‘mandate’ requiring ‘community integration for everyone.’ ”

So that’s where we are right now.

As Minnesota moves forward with its Olmstead Plan and pursuit of “person-centered” care, here are four points to deepen this important conversation.

One solution won’t fit everyone. Every person with disabilities should choose for him- or herself where to live, work and play — just as you do. That’s person-centered planning, and it’s good. The minute society decides “Here are the options we should offer,” it eliminates person-centered planning. That’s true for housing, employment, education, transportation and community engagement.

It’s better to begin with the outcome a person wants, then design the solution — rather than start with existing services and try to fit the person into the service. That’s what this reform is all about.

Every individual brings unique challenges to the system. It takes a range of services to meet varied needs. Some people need modest support; others need intensive supervision. The spirit of an Olmstead Plan is to provide community integration and community access for all individuals. To achieve this, Minnesota must maintain a spectrum of options.

Big change, on a big scale, takes time. Minnesota’s system is huge, and change is happening. It’s important to acknowledge the scope of this reform and that DHS is working hard on it. So are the rest of us in the service system. This is a complex issue that warrants deeper discussion — especially at the community level, where deeper integration will change neighborhoods. We need to have conversations in our own communities about how change will impact our lives, before expecting change to happen. Each community will have its own perspective — Northfield, after all, is very different from Minneapolis or Cambridge. Integration won’t succeed unless the neighbors embrace it. Keep in mind that simply living in a house in a neighborhood doesn’t mean someone is integrated.

Communities, not just counties, need to buy in. When a person with autism or schizophrenia (or both) wants to move in next door, will NIMBY rear its ugly head?

A young man who lives on our campus (a small-scale community where he thrives) has a county social worker who was pressured by DHS to move him out of this “institution” into a community home. He wouldn’t do well in his own apartment; his outbursts would scare the neighbors. So the social worker, doggedly following policy, suggested an empty house out in the country with no close neighbors to bother. He would be far more isolated there than he is on our campus.

Counties see how the policies from DHS — based on principles of the Olmstead Plan — really play out in people’s lives. As DHS brings county managers on board (that’s 87 statewide — a lot of passengers for one pendulum), it’s important to hear their perspective and the perspective of the people themselves (or their representatives) on how people are faring under new standards.

At the same time, society as a whole must be willing to give people control over their own lives. Often, the public feels entitled to choose which options people with disabilities can have. Are you willing to quit judging other people’s life choices?

Good intentions must be well-funded. We expect major changes to a system whose funding has been cut, cut, cut for 15 years. We are well past the point of being able to do more with less. The Star Tribune reported that DHS’s 2012 survey found significant gaps in the delivery of services for people with disabilities. Yet the need is even greater than what the system currently holds. Pew Research reports that nationwide, 80 percent of people who need long-term services are living at home, cared for by family … $450 billion worth of care for free. That’s more than all of Medicaid spending for a full year (2009). There is way more need than what we’re seeing in the system. It’s staggering.

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