Nine years after the U.S. Supreme Court issued the Olmstead decision, its impacts for persons with disabilities are decidedly mixed. The court ruled that “unjustified institutional isolation of persons with disabilities is a form of discrimination.” The Court rejected the State of Georgia’s argument that the Medicaid statute reflected a Congressional preference for “treatment in the institution over treatment in the community.”

The decision indicated that ending this discrimination wouldn’t occur immediately. In 1999, the high court permitted states to have “waiting lists” for community services as long as such lists “moved at a reasonable pace not controlled by the state’s endeavors to keep its institutions fully populated.”

For people with disabilities, this decision was a clarion call. Disability and elderly advocates believed people would no longer be institutionalized if they wanted to reside in the community. Obviously, where one resides should be one’s own choice.

We all know, however, that the availability and allocation of funds frequently determines the “choice.” Specifically, if you are on Supplemental Security Income, and/or your only source of income is either only Social Security Disability Income or Social Security Retirement, your “choice” may be limited to where your state spends its Medicaid funds—in nursing homes or in the community.

American Association of Retired Persons (AARP) surveys indicate that more than 90% of older Americans don’t want to reside in nursing homes. According to Minimum Data Set (MDS) reports, the national percentages of people in nursing homes who want to live in the community continues to increase steadily year by year. This has increased nationally from 18.7% in 2003 to 22.8% in 2008. Check out your state at www.cms.hhs.gov/MDSPub QIandResRep Click on MDS Activity Report and then Q1a)

One might think that amount Medicaid expenditures going to nursing homes would reflect the implementation of the Olmstead decision, national surveys and MDS data. But that is not always the case. Compared to the rest of the nation, how has your state done?

Using FY 1999/Olmstead as a benchmark, we have calculated, by state, what was the percentage of Medicaid’s long-term care expenditures that were allocated to services in the nursing institution versus in the community.

Obviously, the greater the percentage of Medicaid funds expended in the nursing home, the lower the percentage in the community. It’s like a scale; as one side goes down, the other goes up. While the following data is provided in percentages, it is critical to remember there are billions of dollars involved and the ratio of expenditures significantly impacts whether one has a meaningful choice. That is, the more your state spends on nursing facilities, the less it will have to spend on the community.

We receive numerous inquiries from people who do not want to be institutionalized in nursing homes or who are in them and want to live in the community. The only way to achieve real “choice” is to provide people with Medicaid services where they want them. “Waiting lists” for services are not services. Living in fear of being institutionalized or living with fear because one is institutionalized is not the type of a “choice” the ADA or the Olmstead decision intended.

Whether the promise of Olmstead will be achieved depends on the elderly and disability and their advocates! Those states that have moved the percentages to greater equality between the community and the institution must have terrific, effective self-advocates and understanding of what is right, administrators and elected officials.

For some states it is “Olmstead, happy ninth anniversary!” For many others, it is not.

In comparing Medicaid Long-Term Care expenditures state-by-state, Minnesota’s funds were spent in FY 1999 at a rate of 79.9 percent in nursing homes and 20.1 percent in the community. That was consistent with the trend seen nationally, at 80.8 expenditures in nursing homes and 19.2 percent in the community.

In Minnesota’s 2006 fiscal year, that dropped to 57 percent in nursing homes and 43 percent in the community. Nationally, the percentage of dollars spent on nursing home care was 71.4 percent. Spending in the community was at 28.6 percent. That’s a shift of 9.4 percent over seven years. The data for FY 2006 represents the most recent data available. The FY 2007 data will be available later this summer.

Using the data for each state, disability and elderly self-advocates and their advocates should ask whether the change between FY 1999 and FY 2006 is satisfactory, whether it reflects what the Supreme Court in the Olmstead decision intended, whether it provides elderly and disabled people in your state with a choice where they want to receive services, and what the self-advocates and advocates will do about the pace of change.

Steve Gold, The Disability Odyssey, continues. Information Bulletins are available online at www.stevegoldada.com; to contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.