U.S. District Court Judge Sharon Johnson Coleman decided today that the State of Illinois has not been providing adequate resources for citizens with developmental disabilities, in direct violation of the Ligas Consent Decree.
Set up as a settlement agreement between the state and class members made up of Illinois residents with developmental disabilities, Ligas has allowed both parties to stay out of costly litigation. The consent decree was set to expire this year but the State of Illinois has failed to uphold its end of the decree. Ligas is premised on the Olmstead Supreme Court decision of 1999, an ADA case which ruled in favor of plaintiffs Lois Curtis and Elaine Wilson to assert their right to live in the community instead of in an institution.
Stanley Ligas and eight other individuals with developmental disabilities brought suit against the State of Illinois in 2005, noting that the state had violated their Olmstead rights. The case became a class action suit brought by people who were either not receiving any services, after being placed on a waitlist, or who were receiving services in restrictive institutional settings. Settled in 2008 with the current consent decree, Ligas gave the state time to show some progress.
Judge Coleman ordered Governor Rauner's administration to devise a plan to restore services before the next status hearing, scheduled for October 27th of this year. Illinois, which has been embroiled in a budget impasse, has not provided resources "of sufficient quality, scope, and variety" to people with developmental disabilities. The judgement notes that they have "suffered substantially" from a reduction in services.
The state argued that Illinois could not afford to provide adequate services. The current budget gives caregivers their first hourly rate hike since 2008, an increase of 75¢ per hour. Service providers, noting staff attrition and hiring difficulties, know the wage hike is insufficient to retain workers. Providers have not been able to sustain or expand their home and community-based programs. Low rates have created a staffing crisis situation, which forced providers to decrease staff ratios and focus on minimum standards of safety as opposed to having enough staff to take people out of the house to build skills and practice independence.
Inclusion PAC is pleased that Judge Coleman has ruled to continue to hold the State of Illinois accountable for pro-inclusion practices and policies.
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.