The State of Illinois' Community Care Program (CCP) currently assists an average of 76,000 seniors each month with essential activities of daily living, such as getting dressed, going to appointment, and household chores. The CCP's home and community-based services and care coordination maintain individuals at home with services that allow for ongoing engagement and opportunity to observe, act and intervene to prevent or minimize incidents, like falls, that result in more costly levels of care.

According to the Centers for Disease Control, of those older adults who take a fall each year, over 60% are hospitalized and approximately half require intensive care. Preventing such unnecessary medical episodes, as well as premature facility-based care, is an essential component of Illinois' strategy to manage Medicaid expense. To illustrate, CCP services cost, on average, approximately $10,000 per client per year; in contrast, Medicaid nursing home cost is approximately $150 per day ($55,000 annualized), an emergency room visit costs between $5,000 and $20,000 per episode, and a day in the hospital costs on average $1,500.

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The proposed budget cuts for Fiscal Year 2016 include reducing access to the CCP by increasing the current minimum Determination of Need (DON) score of 29 to 37.
The current DON tool and minimum score of 29 are validated indicators of an individual's need for long-term care (i.e., facility-based) services; furthermore, it is the understanding of the CCP Coalition that a state must have federal approval prior to implementing a change to the state's definition of need for long-term care services. Individuals with lower DON scores have lower monthly costs (monthly Service Cost Maximums for DON scores 29 through 36 are $429 to $789, while monthly utilization averages $175 to $400 per month, respectively).

Of the current 76,000 seniors who receive CCP services each month, no less than 23% have DON scores between 29 and 36 - these most cost-effective clients account for only 9% of CCP spending. Many clients have no involved family (e.g., over 40% of clients with emergency home response systems or have no responder who can go to the home during an incident), or family members who work and rely on the support provided by CCP services; an assumption that lower DON score clients will find ways to manage on their own is flawed.

The typical Sandwich Generation member is a 48-year-old woman. She maintains a paying job and spends an average of 20 hours a week providing care for a parent(s).

Sandwich Generation support groups have begun to populate on the Internet. Websites like allow members to ask questions and share their experiences about caring for their parents.

"Sandwichers" can also gain support from the community. In July, Sandwich Generation Month, caregivers should be on the lookout for local events spotlighting this specific generation.

"In coming years and as public awareness grows, the community and families together will heighten understanding of the special needs of the Sandwich Generation, as well as to spotlight community support available to those working so hard to maintain multi-generational families," said Fiona Middleton, Vice President of Sandwich Generation Month national sponsor. "We will also celebrate the hard work, compassion, patience and dedication of the Sandwich Generation members, those actively providing care for both children and their aging parents."

Recent numbers collected by the Case Coordination Unit (CCU) of Southern Illinois show that if the DON Score is raised from 29 to 37, the following number of seniors would be affected in the following counties: Bond (58 clients), Clinton (72), Madison (730), Monroe (30), Randolph (106), St. Clair (683), Washington (36).

One local resident lives alone with no family members to assist in everyday duties.
She is able to live independently through use of the Community Care Program.

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"After retiring in 2000, I was isolated and never left my apartment. I couldn't drive anymore due to my health history and I started becoming very confused with my medical paperwork, dealing with insurance and my finances. In 2011, the Community Care program became available and my life changed because I can stay in my own home without worry."

Although the resident will be strongly affected by the proposed funding cuts for FY2016, attention should also be provided to the Community Care Program Aide who works for the resident on a daily basis.

"Since I started working for the Community Care Program, I have been there to keep my client socially active, and provide her with a safe, healthy environment. At the end of the day, I feel better about what I have accomplished because she has no one else to care for her. This is not just a job to me because my client is my friend. Life is better for her, and that's exactly why I am here."

No less than 50,000 Illinoisans are employed to provide CCP services: a reduction in hours equates to reductions in earnings, taxes paid, and places the lowest-earning workers at risk of eligibility for state-funded benefits

A potential across-the-board service reduction of 6 hours per month (1.2 hours per week) for every client has been proposed. There are challenges in implementing such a reduction to affect actual services delivered on average, as compared to authorized services; as such, an across-the-board reduction in hours is not a reliable cost-reduction strategy.

There are inherent inequities with across-the-board service reductions: a loss of one homecare hour per week for a low-hour care plan client will result in specific tasks not being completed, escalating an individual's potential risk; eliminating 6 hours per month of adult day services means two missed meals, one more day alone, one less day of nursing care, increasing the likelihood of complications of medical conditions that are monitored and stabilized through regular nursing care, socialization, exercise, and nutrition.

CCP providers have ongoing contact with senior clients and provide the opportunity to identify and report changes in health conditions.

One final aspect of Governor Rauner's proposed budget for FY2016 is adding a maximum annual personal income limit of $17,500 to CCP's current eligibility criteria. Of the current 76,000 monthly CCP clients, approximately 20% have annual income greater than $17,500. Illinois' Medicaid income limit for the elderly and disabled is $981/month for an individual ($11,770 annual). A CCP income limit of $17,500 provides a "buffer" of $477/month, which when used to private pay for long-term care supports, will quickly deplete personal resources to Medicaid levels and expedite an individual's reliance on Medicaid funded services.

According to the CCP Coalition, "they could support adding an annual income limitation for those persons representing the highest income levels but is adequate to safeguard against an imminent spend-down to the poverty level (specific recommendation pending additional data from the Illinois Department on Aging) provision of lower-cost preventive medical services.

What can you do? Before July 1, 2015, individuals are able to call local and state legislatures and express your opposition to the 2016 Fiscal Year proposed budget. If it's only possible for you to make one call, please call the Governor's office. "I am strongly opposed to the Fiscal Year 16 proposed budget cuts to the Community Care Program."

All individuals are encouraged to make a phone call, send letters or go online and inform the senators and representatives how the Community Care Program is making a difference. Simply informing the office of an opposition to the funding cuts for CCP will allow them to see how strongly community members feel toward the effects of the cuts.

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