Editor's Column - January 2013

After last month’s editor’s column and our article concerning the Olmstead decision, I’ve been asked what “least restricted environment or setting” means, and what “most integrated setting” means. They should be easy questions to answer but they’re not. The United States Supreme Court has struggled with them as much as you and I. The Olmstead decision sets the higher standard with its language requiring the “most integrated setting,” so it’s the most important one to understand. That definition, according to the US Department of Justice, is: “a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.” Integrated settings are those that provide individuals with disabilities opportunities to live, work, and receive services in the greater community, like individuals without disabilities. Integrated settings are located in mainstream society; offer access to community activities and opportunities at times, frequencies and with persons of an individual’s choosing; afford individuals choice in their daily life activities; and, provide individuals with disabilities the opportunity to interact with non-disabled persons to the fullest extent possible. Evidence-based practices that provide scattered-site housing with supportive services are examples of integrated settings. By contrast, segregated settings often have qualities of an institutional nature.

Even now there’s discussion about adding different verbiage to “most integrated setting” so that it applies more easily to educational settings, and housing and community living plans. But we hope any such changes will not water down the definition or make the determination more subjective.

The fiscal cliff dilemma has been resolved for now, without much damage to Medicaid, Medicare or Social Security, all long-standing programs that people with disabilities depend upon. Initially, the opposition argument was that there should be “shared sacrifice,” or service cuts equal to any tax increases. It seems to me, though, that over the last eight to 10 years, essential services for the disability community have already taken on more than their fair share of sacrifice. The government has been cutting programs every way they could to save money, with decreased reimbursement rates to all service providers, changed eligibility requirements for many programs and deep cuts on most waivered services.

One provision of the Affordable Care Act that was repealed in the new Jan. 1 “fiscal cliff” legislation was the Community Living Assistance Service and Support program. CLASS had been championed by the late Sen. Ted Kennedy as a voluntary public long-term insurance care option that would have addressed a number of issues, including many related to personal care attendants. What we got instead was a bipartisan commission. Its charge is to establish high-quality systems that ensure the availability of long-term services and supports for the elderly, individuals with substantial cognitive and functional needs and for those who require assistance to perform activities of daily living. The commission will be 15 people appointed by the White House and leaders from both parties in both Houses of Congress. With any luck, a couple appointees will be from Minnesota. Issues addressed will include fostering personal responsibility, ensuring flexibility in choice of long-term services, providing supports for the healthcare workforce and for family caregivers, and expanding community-based services for our senior citizens. The commission is to be formed within the first month of enacting the law, and must present their findings within six months to the White House and Congress.

It’s discouraging that the administration decided that they could not, as Health and Human Services Secretary Kathleen Sebelius said, “see a viable path forward for CLASS implementation at this time,” and kicked the ball down the road to a not-yet-existent commission. My first reaction was, “Really? Another commission, again?” and I’m not alone in being concerned that a commission’s findings will just end up on some shelf never visited. Still, I hope that the commission will resist institutional bias, and that soon some part of the billions of dollars spent in state and corporate nursing homes will go into community-based services where our smaller independent medical provider businesses can prosper off these shifts in government spending. We should probably write members of the commission to make sure they know that “most integrated setting” definition.

I hope to see you at the capitol during the 2013 Legislative session. Remember, our future depends on our involvement and self-advocacy there and in Washington DC. Send those emails and letters, and come on down to the halls of power.

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