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. ![end of story]()
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.
