Deinstitutionalization
Making a Difference article – Georgia Council on DD – October 2009 – Article By Bill Lewis
Deinstitutionalization
Major Issue as Funding Tightens Up As more studies become available about people with disabilities leaving large congregate settings and developing more person-centered, individualized and community-based lives, the same stories keep emerging.
With increases in independence being a continual theme those, at least, are the summarized findings of David Mank in an August 2009 article written for the ArcLink. Mank is the Director of the Indiana Institute on Disability and Community and Professor at Indiana University.
The trend toward deinstitutionalization is spreading nationwide. “Over 20 state institutions for people with developmental disabilities have closed since 1995… at least four other states have fewer than 300 people with mental disabilities in state institutions,” Mank reported.
Shelly Simmons, chair of Georgia’s Statewide Independent Living Council, concurs. “We are really trying to push for the Community Choice Act which will allow for the money to follow the person,” she explained. “That’s just a small slice of the CCA. Unfortunately, we still have a waiting list that doesn’t allow enough people to come out of nursing homes or institutions. has a grant of over $54 million in federal funds for the Money Follows the Person Initiative (MFP), which is helping to shift Medicaid Long-Term Care from its emphasis on institutional care to home and community-based services. The program began on September 1, 2008 and will run through 2011. Through August 31 (for the 2009 fiscal year), 91 people with developmental disabilities have transitioned into the communities according to Alice Hogan of the department of community health. “An additional 63 people who are either senior adults or have a physical disability or brain injury have transitioned as well,” Hogan confirmed. She continued to explain that they have benchmarks set for each year. As far as a more permanent solution that lasts beyond 2011, disability advocates remain hopeful. “We’re trying to get a lot of our senators and representatives on board to hopefully make a change. Georgia was the state where the Olmstead Act was enacted, but Georgia’s at the bottom of the list when it comes to actually allowing people to live in a community. We should be leading and in the forefront and we’re actually behind. So we have a lot of catching up to do,” Simmons emphasized. Seventy-six percent of Medicaid dollars are going toward nursing homes and institutions. If we could get to 50 percent, that would be a plus.”
The Community Choice Act is federal legislation that is for the development of a community-based alternative to nursing homes and institutions. This bill would also plan for the money to follow the person (rather than remain in one certain program and/or in a certain state), and allow people to choose how they receive services.
Robert Stack, president and CEO of Community Options, Inc. has put hard numbers to that equation on a national level. “If they took 50 percent of the people residing in the institutions the average cost savings would be over a billion dollars. And an equal amount would be saved by the states.” Community Options, Inc. is a national organization based in Maryland that embraces the philosophy of self- determination and provides housing, support services and advocacy assistance to empower thousands of people with disabilities.
Andre Cooper of Lilburn is a man who knows first-hand that the system needs changing. Cooper is 40 years old, and was paralyzed in an accident in 2005. He has no family nearby that can help, and currently lives in a nursing home. But, as he points out, there’s no need for him to be there. “I’m capable of staying in a hotel or a house or an apartment. I’m able to do pretty much everything [for myself].”
He knows it costs a great deal of money for him to remain in the nursing home, and he’s also well aware it would cost less for him to be out on his own. “If Medicaid is willing to help me in a nursing home, why can’t they help with an apartment or with some housekeeping?” he asks.
With a dearth of programs in Georgia, it’s difficult for Cooper to find help. “It just seems to me that the less you’re able to take care of yourself, the more they are willing to help,” he says. “If I tell people I can take care of myself, they think I don’t need any programs.”
Refusing to give up, Cooper – along with many others – echoes Simmons’ call to have the money follow the person. The state of Georgia currently has a grant of over $54 million in federal funds for the Money Follows the Person Initiative (MFP), which is helping to shift Medicaid Long-Term Care from its emphasis on institutional care to home and community-based services. The program began on September 1, 2008 and will run through 2011.
Through August 31 (for the 2009 fiscal year), 91 people with developmental disabilities have transitioned into the communities according to Alice Hogan of the department of community health. “An additional 63 people who are either senior adults or have a physical disability or brain injury have transitioned as well,” Hogan confirmed. She continued to explain that they have benchmarks set for each year.
As far as a more permanent solution that lasts beyond 2011, disability advocates remain hopeful. “We’re trying to get a lot of our senators and representatives on board to hopefully make a change. Georgia was the state where the Olmstead Act was enacted, but Georgia’s at the bottom of the list when it comes to actually allowing people to live in a community. We should be leading and in the forefront and we’re actually behind. So we have a lot of catching up to do,” Simmons emphasized.