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Alzheimer's Providers, Caregivers, Appeal for Help

Editor's Note: Pinecrest is a primary provider site affiliated with the Southern Illinois University Memory and Aging Network. Pinecrest staff gathers data assessment information for their research center. The university asked Pinecrest, among other organizations with which they partner, to help spread the word about state budget cuts impacts to regional memory care services. A post from their website is reported in its entirety, below, with links.

April 9, 2015
'Dementia Patients and Their Caregivers Will Suffer'
Alzheimer's Providers, Caregivers Appeal to Citizens for Help
Thousands of Illinoisans could soon lose access to care and resources provided by the Memory and Aging Network, a system of providers who care for Alzheimer's disease and dementia patients, led by the Southern Illinois University School of Medicine's Center for Alzheimer's Disease and Related Disorders (CADRD). Proposed state budget cuts totaling $1.5 million and the end of a three-year transitional payment would end clinical services for thousands of patients and educational programs to families, caregivers and health providers in extremely rural areas in 93 southern, central and northern counties.
"Without funding, not only will our dementia patients throughout Illinois suffer, but our caregivers will lose as well," said Tom Ala, MD, interim director of the SIU School of Medicine's Center for Alzheimer's Disease and Related Disorders in Springfield. "When our caregivers don't receive the support or training they need, patients are more likely to end up in costly assisted living or elder care facilities, which cost nearly eight times more than home health or adult day services."
Illinois residents can contact their legislators to ensure Illinois' continued support for Alzheimer's care and research. To find the names of state representatives and senators representing your area, visit http://goo.gl/tTyBDx. For more information, visit www.siumed.edu/news/actnow/alzillinois.

Cuts in Training, Programs
Serving 93 rural Illinois counties, the Memory and Aging Network is made up of 37 sites, including those in Springfield, Carbondale, Hillsboro, Pontiac, Champaign, Mattoon and Danforth. The network informs patients of clinical research opportunities and provides caregiver training, diagnostic services and consultations, and continuing education for health care providers. In the last decade, the network has sponsored nearly 5,000 educational events, attracting more than 127,000 Illinois residents.
Unless funding is preserved for the SIU Center for Alzheimer's Disease and Related Disorders as well as for the other two state-designated Alzheimer's centers throughout Illinois, including Rush Alzheimer's Disease Center and the Cognitive Neurology and Alzheimer's Disease Center at Northwestern, both in Chicago, Illinoisans can expect:
• Loss of the 37 network sites in rural Illinois where patients may be assessed and followed according to the SIU Center's guidelines. To receive specialized evaluation in the future, patients and their caregivers would have to travel to centers in Springfield, Chicago, St. Louis or Indianapolis
• Cuts in Alzheimer's disease training, educational and therapeutic programs for health care providers, caregivers and patients
• Fewer clinical trial and research opportunities
• Closing of the SIU School of Medicine Dementia Brain Autopsy Program
• Increased Medicaid costs related to a rise in hospital and nursing home admissions
Patient Impact
To caregivers and their loved ones affected by Alzheimer's disease, an illness that affects more than 210,000 Illinoisans, the implications of the proposed cuts could be devastating.
The cuts would affect Springfield couple Ilda and Philip McFadden, who receive help from the staff and resources provided by the Memory and Aging Network. Because of the network, Philip, 85, has been able to live at home with his wife since he was diagnosed with Alzheimer's disease more than four years ago. "Dr. Ala and his staff have been a tremendous support," said Ilda. "I have no idea what we'd do without the network." Philip, a Decatur native, was in his 70s and had already survived cancer when he and his wife learned he had dementia.
While Ilda says family and friends can often provide support, caregivers and patients are often left with many questions that can only be answered by experts. "Philip sees Dr. Ala only about twice a year, but I must talk to Ann (Jirmasek) and Amy (Richey), two of the clinic's staff members, almost weekly," said Ilda. "With this network, you just know you have help."
History of State Support
The state of Illinois has made Alzheimer's disease and related dementias a priority since 1985 when an 11-bill Alzheimer's Initiative legislative packet was passed by the Illinois General Assembly and signed into law by the Governor. Since then, Illinois' three Alzheimer's centers, including SIU CADRD, have been reliant on state funding to provide an array of services and programs to the more than 200,000 Illinois residents living with Alzheimer's disease. The state's investment of $3.3 million each year to support this system of care has resulted in over $17 million in external funding for research— much of it from federal agencies, which means that for every $1 that Illinois spends on the centers, an additional $5.15 in new grant funds is brought into the state.
Two years ago, however, the Illinois General Assembly voted to reform hospital payments, which eliminated the state budget's line item providing direct state funding for the three Illinois Alzheimer's disease centers. This reform lumped state support for the Alzheimer's centers into the state's Medicaid payments to hospitals. As part of the state's hospital payment reform, lawmakers enacted a three-year transitional payment program to ensure that hospitals would not lose money from the previous year.
Because of state budget cuts now proposed for next year's budget, this transitional payment program will expire in June 2015, and with it, the $1.5 million SIU School of Medicine uses each year to provide clinical services and educational programs to southern, central and northern areas in Illinois, where care of Alzheimer's disease remains especially critical. Such a reduction would effectively eliminate the Memory and Aging Network and many services provided to Alzheimer's patients, their families and caregivers by the CADRD.
For more information about the Memory and Aging Network visit www.siumed.edu/alz. For a copy of this letter, go here: http://www.siumed.edu/news/Releases%20FY15/Alz_Funding_4-9-15.html

 

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