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FOR IMMEDIATE RELEASE: 9/4/17
Inclusion PAC Begins Fighting Against Institutionalization in Illinois
New Political Action Committee Formed for Illinois Citizens with Disabilities
Batavia, Illinois: A grassroots group of citizens has launched Inclusion PAC, a non-partisan political action committee thought to be the first PAC in Illinois designed to promote home and community living for citizens with disabilities.
Today, Illinois institutionalizes vast numbers of people with developmental, physical, behavioral, and age-related disabilities. Institutionalization removes people from their communities, families, and social networks that are vital for a healthy and fulfilling life.
Deb Hamilton, co-founder and treasurer of Inclusion PAC, says “Despite Illinois’ budgetary woes, we remain the fifth wealthiest state in the union. However, we rate 40th on spending for programs that support people in their homes and communities. Historically, institutions and nursing facilities have divorced people with disabilities from social networks that provide essential emotional and physical support. Inclusion PAC seeks to influence policymakers away from this dangerous model, and towards programs that bring citizens with disabilities back into their communities.”
Inclusion PAC seeks to elect and re-elect legislators who support inclusive living for Illinois citizens with disabilities. Inclusive living means that people with disabilities can choose to live in their own homes and/or their own communities, instead of being isolated in large institutions or nursing facilities situated away from home.
About Inclusion PAC: Inclusion PAC advocates for programs, policies, and funding which support inclusive living for all ages and types of disabilities.
Visit the Inclusion PAC website for more information (www.inclusionpac.org).
The Americans with Disabilities Act (ADA), which Senator Tom Harkin called the “emancipation proclamation for people with disabilities,” was built upon four pillars: Equality of Opportunity, Independent Living, Economic Self-Sufficiency, and Full Participation in Community Life. Illinois citizens with disabilities have experienced structural obstacles in their quest to live independent lives in their communities. Many of these obstacles stem from public policy that is unique to the Illinois political landscape.
Medicaid services fill a gap for Illinois residents with disabilities by providing Long-Term Services and Supports (LTSS) not offered by Medicare or private insurance. LTSS helps seniors and people with a variety of physical, developmental, and behavioral disabilities meet their daily needs.
There are two primary ways that states can apply LTSS. The first is in institutional settings, including nursing homes and large institutions. The second way is to pay for Home and Community-Based Services (HCBS). Because states are required to cover nursing facility benefits, while coverage of most HCBS is optional, there is a built-in "institutional bias" at the federal level that is exacerbated by philosophies and policies in certain states.
HCBS spending patterns vary significantly from state to state, ranging from 31% to 81% of total LTSS spending. Illinois spent just 46% of its total Medicaid LTSS on HCBS in 2015, well below the national average of 55%. Illinois ranks 40 of 50 states on measures of fiscal effort for HCBS.
What does this mean for people with disabilities in Illinois? It often means that people can't stay in the homes and communities of their choosing, exchanging privacy, dignity, and self-determination for necessary care. What does it mean for the state of Illinois? It means expensive institutional models instead of more modest home and community care solutions.
Together we can change this. The institutional bias that exists in Illinois is policy choice made by the people we elect. Other states have taken advantage of new authorities and federal demonstrations to enhance their HCBS programs and rebalancing efforts. These programs include Money Follows the Person (MFP), Balancing Incentive Program (BIP), Health Homes, and Medicaid Waiver programs such as Community First Choice. States have successfully braided two or more of these creative strands to deinstitutionalize their citizens with disabilities. Illinois is not among them.
State laws and administrative policies matter for Illinois residents, disabled or not. Together we can elect lawmakers who have the will to craft more inclusive policies which will allow people to live in homes and communities of their choosing.
Henry J Kaiser Family Foundation
Medicaid and LTSS: A Primer
Henry J Kaiser Family Foundation
Medicaid in Illinois Fact Sheet
Mathematica Policy Research
Money Follows the Person
Truven Health Analytics
Medicaid Expenditures for LTSS in FY 2015
Contributed by the committee officers of Inclusion PAC.