Statewide Independent LivingCouncil of Illinois
Statewide Independent Living(Shifting to a System Driven by Individual Choice with Options)
Illinois continues to spend an inordinate amount of money unnecessarily institutionalizing people with disabilities. According to the Health Care Financing Administration-- in FFY '98 -- approximately 77% of the $2.3 billion Illinois receives in Medicaid funding goes towards the institutionalization of people with all types of disabilities (Gold, 2000).
This issue crosses all generations; including infants, children, young adults, adults and seniors. The Consortium of Illinois Disability Advocates (CIDA) believes that all residents of Illinois must have the opportunity and a choice in where they live, and a real choice among a variety of community based options must be made available to all.
Following passage in 1990 of the Americans with Disabilities Act (ADA), the Department of Justice issued regulations under Title II requiring state and local governments to administer their programs in the "most integrated setting" appropriate to meet the needs of people with disabilities (Taylor, 2000).
Two women with a dual-diagnoses of mental retardation and psychiatric disabilities were residents at a state-operated hospital in Georgia. Even though state treatment professionals for both women had determined them appropriate for community-based placements, both remained institutionalized. They filed suit under Title II of the ADA, alleging that the state had violated the integration mandate (Milsk, 2000 & Taylor, 2000).
The Supreme Court found that the unwarranted institutionalization of people with disabilities is a form of discrimination that is actionable under the ADA. The Court explained that segregation perpetuates unjustified assumptions that institutionalized persons are incapable or unworthy of participating in community life. It also found that institutional confinement severely diminishes individuals' everyday life activities, including family relations, social contacts, work, educational advancement and cultural enrichment (Taylor, 2000).
The Court ruled that a state can meet its obligations under Olmstead if it has a comprehensive, effectively working plan for evaluating and placing people with disabilities in less restrictive settings, and a waiting list that moves at a reasonable pace and which is not controlled by the state's endeavors to keep its institutions fully populated. The Court's ruling includes individuals who have not been institutionalized but are at risk of institutionalization due to a lack of community services (Taylor, 2000).
In January, 2000 the Health Care Financing Administration (HCFA) sent a letter to all state Medicaid directors indicating that the "recent Supreme Court decision in Olmstead v. L.C., 119 S. Ct. 2176 (1999), provided an important legal framework for our mutual efforts to enable individuals with disabilities to live in the most integrated setting appropriate to their needs. The Court's decision clearly challenges us to develop more opportunities for individuals with disabilities through more accessible systems of cost-effective community-based services" (HCFA, 2000).
The letter further states . . . "that no one should have to live in an institution or a nursing home if they can live in the community with the right support. Our goal is to integrate people with disabilities into the social mainstream, promote equality of opportunity and maximize individual choice" (HCFA, 2000).
At the end of the Spring '00 legislative session, HR #0765 was passed. It identified the Department of Human Services to become the lead Department by directing DHS to:
Analyze current policies and service delivery systems for persons with disabilities including, but not necessarily limited to intake, admission, assessment, eligibility criteria, resource allocation, community-based supports, and demonstration programs.
Serve as the lead agency in developing a comprehensive effective working plan that includes:
Procedures for avoiding unnecessary institutionalization of persons with disabilities;
Procedures for placing qualified persons with disabilities in the most integrated setting appropriate for the individual with appropriate supports;
Provisions for services and supports along a full continuum from the most integrated setting appropriate at a reasonable pace that is not driven by the need to keep the state's institutions fully populated.
Involve appropriate stakeholders as integral participants in the process of developing, implementing, modifying, and reviewing the comprehensive effective working plan, including; Advocates, Consumers, Department of Public Aid, Department of Aging, State Board of Education, other state departments and agencies.
File a report with House of Representatives by January 9, 2001.
As approved in the FY '01 Illinois state budget (2000), the average annual cost to institutionalize one of the 2,957 people with a developmental disability in a state-operated Developmental Center is $91,599 (Moss, 2000).
Several thousand people with psychiatric disabilities are institutionalized in long-term care facilities known as Institutes of Mental Disease (formerly know as Intermediate Care Facilities - Mentally Ill). Medicaid does not reimburse the state for any of the costs associated with maintaining these people. In addition, to institutionalize one of the 1,825 people with a psychiatric disability in a state-operated Mental Health Center is $140,144 per person per year, another expense which is borne entirely by the state.
For people with disabilities institutionalized in long-term care Nursing Homes, the Illinois Department of Public Health (1997) reports that there are 9,893 people between the ages of 18 and 59 living in institutional facilities paid by state and federal programs that provide assistance to persons with disabilities.
Too often, it is said that state-operated or supported facilities are viewed as valuable economic assets for many communities. Whether or not this is true, it is not an acceptable rationalization for inappropriately keeping people of any age or with any disability type in institutions. The state must take the necessary steps to begin "shifting" those resources to expand its community based services and programs for people with disabilities so people who do not need or want an institutional environment can transition into a community based setting.
Community based services are long-term support services for people who need assistance with activities of daily living in their own homes and communities outside of state institutions or nursing homes. Community based services originated as an outgrowth of the idea of meeting the needs of people with disabilities by emphasizing quality of life issues; presence in the community; health and safety; personal growth and opportunity; and self-determination (Paulauski, 2000). Community based services may include:
Supported living, residential alternatives like group homes, supervised apartments.
Personal assistance services for people of any age who require help with activities of daily living and health maintenance.
Case management, including comprehensive assessments and care planning.
Day programs, including activity centers, habilitation, adult skills programs and adult day care.
Vocational services including supported employment, vocational evaluations, job training and job placement.
Family supports and services aimed at keeping the family member at home.
Other quality of life services such as recreation, transportation, early intervention programs, and the like (Paulauski, 2000).
The "Olmstead Opportunity" stresses the need for opportunities of choice. However, CIDA also believes that significant efforts must be made to create and/or expand the necessary community based supports, services and other assistance options that allow individuals with disabilities full access to the community and residence of their choice.
According to Newcomer, et al. (2000, May), in their comprehensive (55 page) report funded by HCFA on Medicaid Home and Community Based Long Term Care in Illinois, the following nine barriers to expansion in Illinois are briefly described:
Certificate of Need program has not stemmed the oversupply of long-term care "beds" and regulation appears ineffective.
Universal screening may not be effective resulting in unnecessary nursing facility placements, and is exacerbated by the lack of available community based services.
Medicaid income eligibility is kept low in the Community Care Program, and the Program has not kept pace with the proportionate increased need for service slots.
State-only funded programs do not maximize federal matching dollars but allows the state to restrict expansion of critical programs as a cost saving measure.
Alternatives to institutional care are not maximized.
Pay schedules for home care workers were low, ranging from $7.00-10.30 per hour.
Service cost maximums were restrictive, and the state has kept its reimbursement rates for all types of providers below the national average to control costs.
Illinois' waiver programs and their advocates are not established enough to compete with the nursing home industry as a politically influential industry.
Various HCFA waivers and competition for limited funding create division and fragmentation among advocacy groups for community based services.
The members of the Consortium of Illinois Disability Advocates (CIDA) feel strongly that making the shift to a system driven by choice with options will involve the commitment and collaboration of all stakeholders. This includes consumers, families, advocates, the Governor, members of the General Assembly, state Departments and Offices. CIDA also feels strongly that representatives of the Aging Network are critical partners in this process.
On a state level, CIDA calls for the development of a comprehensive plan-- with a timetable for implementation-- the reallocation of state financial resources or the commitment of new funds, maximizing the recovery of all federal financial assistance available, and expanding the Medicaid waiver programs. At the federal level, CIDA is looking for more vigorous enforcement of the Olmstead requirements, a larger financial role in the Medicaid program, and increased financial assistance to help states develop community based resources for people with disabilities.
Americans with Disabilities Act (1990). Washington, D.C.
Gold, S. (2000, March 13). Presentation at Consortium of Illinois Disability Advocates meeting. Springfield, IL.
Health Care Financing Administration. (2000, January). Letter to State Medicaid Directors (RE: Olmstead). Washington, D.C.
Illinois Department of Public Health. (1997). Long Term Care Facility Profiles. Springfield, IL.
Illinois House of Representatives. (2000, Spring). House Resolution #0765. Springfield, IL.
Illinois State Budget. (2000). Fiscal Year 2001. Springfield, IL.
Milsk, P. (2000). Fact sheet: Coalition of Citizens with Disabilities in Illinois. Supreme Court Supports Community Based Placements. Springfield, IL.
Moss, D., & Foss, A. (2000, August). Fact sheet to selected members of the General Assembly: Don Moss & Associates. Comparative Costs of State vs. Community Residential services for people with Developmental Disabilities. Springfield, IL.
Newcomer, R.J., Tonner, M.C., Crawford, C.S., LeBlanc, A.J., & Harrington, C. (2000, May). Medicaid Home and Community Based Long Term Care in Illinois. HCFA Contract No. 500-97-0002. University of California at San Francisco.
Olmstead v. L.C. Ex Rel. Zimring, 119 S. Ct. 2176 (1999). Washington, D.C.
Paulauski, T. (2000, April). Fact sheet: The ARC of Illinois. Community Based Services for Individuals with Developmental Disabilities. Homewood, IL.
Taylor, B.C. (2000, April). Fact sheet: Equip for Equality, Inc. Summary of the United States Supreme Court's Decision in Olmstead v. L.C.. Chicago, IL.
This white paper was prepared by John M. Eckert for the Consortium of Illinois Disability Advocates (CIDA). For a complete listing of the current CIDA 17 member organizations, please contact the Illinois Assistive Technology Project at 800/852-5110 (v/TTY). (Rev.10/26/00).
January 25, 2001
Governor George H. Ryan
207 Statehouse
Springfield, Illinois 62706
Re: State of Illinois Compliance with the U. S. Supreme Court's Decision in Olmstead
Dear Governor Ryan:
I am writing to request that you take specific steps to ensure that the United States Supreme Court's decision in Olmstead v. L. C. is fully implemented in Illinois. This letter is written on behalf of the Consortium of Illinois Disability Advocates (>CIDA@). CIDA is a membership organization comprised of seventeen (17) statewide Illinois disability groups, and its mission is to positively influence Illinois public policy as it affects people with disabilities and their families through education, empowerment, and advocacy.
In Olmstead, the Supreme Court held that the unjustified institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act ("ADA") The Court said the ADA requires placement of people with disabilities into the community if:
treatment professionals have determined that community placement is appropriate;
transfer from the institution is not opposed by the person; and
placement can be reasonably accommodated taking into account the resources available to the state and the needs of others with disabilities.
The Olmstead decision is particularly significant in Illinois in light of a large number of people with disabilities living in state-operated hospitals and nursing homes who could be served in the community. The Supreme Court held that a state could meet its obligations under the ADA if it has in place a comprehensive, effectively working plan that provides people with disabilities with placement in the most integrated settings appropriate to their needs, and a waiting list that moves at a reasonable pace and is not controlled by the state's endeavors to keep its institutions fully populated. The Court's interpretation of the ADA is consistent with other civil rights laws, including the Rehabilitation Act of 1973.
In response to H.R. 765, the Department of Human Services ("DHS") was designated as the lead agency to address the implementation of Olmstead in Illinois. In August, 2000, DHS gathered Stakeholders, consisting of people with disabilities, family members, advocates and service providers, to provide input on how Illinois could modify its disability service systems to comply with ADA. Many members of CIDA participated in the DHS process. On January 11, 2001, DHS submitted the Stakeholders' recommendations to the General Assembly.
Now that the Stakeholders' Report has been submitted to the General Assembly, it is incumbent upon the State to move forward expeditiously to implement the principles of Olmstead in Illinois. Although DHS has been designated as the lead agency, we believe it is crucial for your office to be directly involved to ensure coordination of all the state agencies that provide services to people with disabilities including DHS, the Department on Aging, the Department of Public Health, and the Department of Public Aid. CIDA strongly urges you to assume active leadership on the issue by taking the necessary steps to ensue that a quality plan is developed from the recommendations of the Stakeholders, that realistic funding levels for implementation are determined and incorporated into the budget and that executive agencies are held accountable for bringing Illinois into compliance with the integration mandate of the ADA. Otherwise, the civil rights of people with disabilities in Illinois will remain compromised.
Accordingly, CIDA requests that you take the following actions:
Schedule a meeting as soon as possible with leaders of the disability community to discuss how Olmstead can be implemented in Illinois, and the steps your administration will be taking to accomplish this task.
Integrate Olmstead implementation into the budget you will be submitting to the Illinois General Assembly.
Expressly affirm the State's commitment to Olmstead implementation in both your State of the State address and your Budget address. This will send a clear signal to people with disabilities and the Illinois legislature that you are committed to enforcing the ADA in Illinois.
Once you have had an opportunity to review this letter, please contact Barry Taylor at Equip for Equality at 800-537-2632 x317.
Sincerely,
John M. Eckert, Chair
Consortium of Illinois Disability Advocates
cc:
Senator Steven Rauschenberger
Senator Donne Trotter
Representative Monique Davis
Representative Rosemary Mulligan
Representative Sara Feigenholtz
Ms. Linda Renee Baker, DHS Secretary
Ms. Ann Patla, Director, Dept. of Public Aid
Dr. John R. Lumpkin, Director, Office of Public Health
Ms. Margo Schreiber, Director, Dept on Aging
Ms. Jackie Garner, Senior Advisor
Ms. Michelle Piel, DHS Olmstead Coordinator
ARC of Illinois - (Tony Paulauski); Coalition of Citizens with Disabilities - ( Matt Abrahamson); Equip for Equity, Inc. - (Murray Manus & Barry Taylor); Family Resource Center on Disabilities - (Charlotte Des Jardines); Family Support Network - (Charlotte Cronin & Holly Taylor); Family T.I.E.S. - (Deb Kunz); - Great Lakes Disability Business Technical Assistance Center - (Robin Jones); Illinois Assistive Technology Project - (Willie Gunther & Donna Hutchenson); Illinois Association of Rehabilitation Facilities - (Steve Marvel); Illinois Network of Centers for Independent Living - (Ann Ford); Illinois Counsel on Developmental Disabilities - (Sheila Romano & Kerry Flynn); Mental Health Association of Illinois - ( Jan Holcomb); National Center for Latinos with Disabilities - (Everado Franco); SSI Coalition for a Responsible Safety Net - (Barbara Otto & Courtney Snyder); Statewide Independent Living Counsel of Illinois - (John M. Eckert); UCP of Illinois - (Don Moss & Alice Foss); CIDA Consultant - (Phil Milsk)
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