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Congressman Peter Roskam (IL-06) joins advocates at a barbecue organized by the Illinois Ambassador’s Team as part of The Longest Day.

Advocates with Tammy

Advocates and Alzheimer’s Association staff meet with Representative Tammy Duckworth (IL-08) about critical Alzheimer’s legislation in Congress.

Mike Quigley

Representative Mike Quigley (IL -05) wears a Walk to End Alzheimer’s T-shirt while he works out in the Congressional gym in Washington D.C.

Mark Kirk

Alzheimer’s Association advocates meet with U.S. Senator Mark Kirk.


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Veto of House Bill jeopardizes services for seniors with Alzheimer’s – Calls for swift override by General Assembly

Governor Bruce Rauner vetoed House Bill 4351 on Friday, July 29, which would have protected seniors by prohibiting any governor, Democrat or Republican, from reducing access to the Community Care Program (CCP) arbitrarily. The Alzheimer’s Association, Illinois Chapter Network is urging members of the Illinois House to protect seniors and swiftly override the Governor’s veto.

CCP provides in-home and community-based care services for low-income Illinois seniors and was created specifically to care for those with Alzheimer’s and other dementias, helping to prevent unnecessary, premature, and more costly nursing home care.

 “The news that Governor Rauner chose to veto House Bill 4351 today is extremely disappointing,” Erna Colborn, President and CEO, Alzheimer’s Association, Greater Illinois Chapter and Central Illinois Chapter said. “Putting a program like CCP - which benefits so many while preventing more costly outcomes - into limbo is not a solution to our state’s fiscal dilemma, in fact it only adds to Illinois’ fiscal woes,” Colborn continued. “The moral and financial stakes are just too high to not maintain a program that many Illinois seniors with Alzheimer’s depend on for care and dignity.”

Currently there are 590,000 Alzheimer’s and dementia caregivers in Illinois providing 671 million hours of unpaid care at more than $8.2 billion. The number of people living with Alzheimer’s disease in Illinois is expected to grow by 40,000 in the next nine years alone.

Community Care Program under Governor Rauner

To determine an individual’s level of need for care services, the State of Illinois uses an assessment tool known as the Determination of Need (DON) Score. Shortly after taking office in January 2015, Governor Rauner proposed raising the threshold DON Score for CCP eligibility from 29 to 37 - eliminating services for over 24,000 Illinois seniors. On behalf of those seniors, the Alzheimer’s Association’s Illinois Chapter Network, AARP Illinois, and numerous other organizations worked with state Senator Daniel Biss, D-Evanston, and state Rep. Greg Harris, D-Chicago, to pass House Bill 2482 in response to the governor’s proposal.

Despite having retracted his proposal and leading members of the Legislature to believe he had no intention of changing eligibility for low-income seniors to receive in-home care services after the bill was introduced, Governor Rauner vetoed House Bill 2482.

Alzheimer’s advocates joined thousands of concerned seniors from across the state in pushing the General Assembly to override the governor’s veto, which failed to pass the House by one vote November 2015. The governor has since proposed even more drastic reductions to CCP, this time in the face of data from Comptroller Leslie Munger, an appointee of Gov. Rauner, indicating that the average annual cost to taxpayers per CCP client is $10,000, rather than the $30,000 average annual cost of maintaining residents in nursing homes through the state’s Medicaid program.  In response to this, Biss and Harris passed House Bill 4351 in May 2016, which Governor Rauner vetoed today.

This action comes after disagreement between the Governor and leaders of the Illinois General Assembly over healthcare for Illinois seniors and could be the final step before the implementation of a drastic $200 million cut to in-home and community-based care. This will jeopardize the quality of life and eliminate services for 44,000 seniors, many of whom are living with, or caring for someone with, Alzheimer’s disease or a related dementia.


Amazing Advocates Are Achieving Amazing Things!

ALZ lobby

Alzheimer’s Association advocates are caregivers, parents, husbands, wives, professionals and students, who despite busy lives and all of the obstacles that the world throws up, find the time to help make a difference in the lives of others. It should be no surprise then that when people who embody selflessness in its purest form come together and push for change, they accomplish amazing things.

Last year, 34 advocates traveled with the association to our nation’s capital for the 2015 Advocacy Forum and nearly 200 made the trip to Springfield for the Illinois Action Summit. After meeting with state and federal lawmakers, sharing personal stories and demonstrating how Alzheimer’s Association initiatives would improve the lives of thousands of Illinoisans, Congress increased federally funded Alzheimer’s disease research by 59.7 percent and the Illinois General Assembly unanimously passed Silver Search, which will create a comprehensive coordination, awareness and search program for missing adults believed to have Alzheimer’s disease or a related dementia.

This April, 53 ambassadors and team members got on airplanes and headed for Washington D.C., a record number from Illinois! After two days of interactive workshops, teambuilding and training, advocates stormed Capitol Hill, urging elected officials to further invest in Alzheimer’s disease research and support the association’s main federal public policy priorities: the HOPE for Alzheimer’s Act (H.R. 1559/S. 857), which would require documentation of dementia diagnoses and provide Medicare coverage for post-diagnosis care planning; and a new measure, the Palliative Care and Hospice Education and Training Act (H.R. 3119/S. 2748), also known as PCHETA.

PCHETA would expand the availability of hospice and palliative care by providing federal grants for education and training in these fields of medicine, which reduce unnecessary hospitalizations and improve patients’ quality of life. As of May 12, less than six weeks after we departed, eight of Illinois’ 20 member congressional delegation had signed on as cosponsors!

One week after the Advocacy Forum, record numbers of advocates then met in Springfield for the Illinois Action Summit to continue the work of making Illinois a dementia-capable state. Every day, families across Illinois are faced with the daunting task of finding compassionate, qualified care for loved ones suffering from Alzheimer’s disease or a related dementia. These families should not have to worry about whether those claiming to be qualified actually are they have enough to worry about.

State Sen. David Koehler from Peoria, who recently lost a loved one to Alzheimer’s disease, and state Rep. Deb Conroy joined the Alzheimer’s Association in leading a coalition that passed Senate Bill 2301, the Illinois Alzheimer’s and Dementia Services Act, unanimously through the General Assembly. When signed into law by the governor, this will put in place minimum training standards for employees of long-term care facilities and residential or community-based programs that advertise dementia-specific services, helping to ensure people living with Alzheimer’s receive the care they deserve.

None of these recent successes, or the victories that are sure to come, would be possible without our amazing team of advocates sharing the common dream of a world without Alzheimer’s® and coming together to make it happen!

Learn more about how you can make a bigger impact.


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