Where to Turn... Your Guide to Federal Disability Policies and Programs Authors Patrice Drew, Esq. Cathy Ficker Terrill Anne C. Parrette, Esq. Project Coordinator Janna Starr Editors Larry H. Hoffer Lisa Ward Monique Marino Brain Injury Association US Department of Health and Human Services HRSA Health Resources and Services Administration Maternal and Child Health Bureau Disclaimer The Brain Injury Association shall not be held liable for content changes made by unauthorized parties, including but not limited to: alterations of text, images or other information within Where to Turn: Your Guide to Federal Disability Policies and Programs (the Guide.) The Guide contains general information. It is not an authoritative legal document, nor shall it be construed as legal advice. The Guide shall not be relied upon as a legal authority for acting or refusing to act. The information contained in the Guide may change as Federal polices and programs are amended periodically. The Brain Injury Association is not responsible for notifying the Public of these changes. Individual and Family Supports Home and community-based waivers My family member has disabilities and is Medicaid-eligible, but I want him to be able to live at home, not in a nursing home facility or other institution. Do I have any options? Your family member may be able to get services at home through a "home and community-based waiver" (1915(c) waiver) through your state's Medicaid program. What are Home and Community-Based Waivers? Medicaid home and community-based service (HCBS) waivers grant exceptions to certain Medicaid rules. While federal funding streams and regulations have traditionally favored congregate, institution-based services, waivers can be granted by the federal government to states to develop and implement creative community alternatives to placing/or leaving Medicaid-eligible people in hospitals, nursing facilities or Intermediate Care Facilities for People with Mental Retardation (ICFs-MR). Waivers allow programs designed by states to be supported with a match of federal funds. What is the purpose of the HCBS waivers? The HCBS waiver program recognizes that many people with disabilities are at risk of being placed inappropriately in an institutionalized setting, when they may be better off receiving services at home and in their communities. Why would a home or community setting be better? A person who receives services and supports at home in his or her community is often better able to preserve his or her independence, productivity, ties to family and friends and mental and physical health at a cost no higher than that of institutional care. Where does the HCBS waiver program get its authority? The HCBS waiver program is found under section 1915(c) of the Social Security Act. Under this section, states may request waivers of certain federal requirements in order to develop Medicaid-financed community-based treatment alternatives. What federal requirements may states request to be waived? There are three requirements that the states may request to be waived. They are found in section 1902 of the Social Security Act. The requirements deal with: Statewideness: A state can design a service for a specific geographic locale, rather than being bound by the general Medicaid rule that any services provided must be provided in all parts of the state. Comparability of services and community income: States have more flexibility in offering a range of services. Resource rules for people who are "medically needy": States can set rules for how Medicaid will consider the assets of people who have extremely high medical costs. What can be included in HCBS waiver programs? The Social Security Act specifically lists seven services that may be provided in HCBS waiver programs: 1. Case management 2. Homemaker health aide services 3. Home health aide services 4. Personal care services 5. Adult day health 6. Rehabilitation 7. Respite care What else can be included in HCBS waiver programs? Other services may be requested by a state because they are needed by waiver participants to avoid being placed in a medical facility. Some examples are of these other services are: Non-medical transportation In-home support services Special communication services Minor home modifications Adult day care Treatment for people with chronic mental illness, including day treatment, partial hospitalization services and psychosocial rehabilitation services What about room and board? Is it included? No. Room and board is excluded from coverage, except under certain limited circumstances. Who designs a state waiver program? States have flexibility to select and design the mix of waiver services that best meet the needs of the population they wish to serve, to select eligibility characteristics of the population to be served and to provide services statewide or in specific geographic locations. What groups of people can the HCBS waiver programs serve? Under federal regulations, HCBS waivers are permitted to serve the following groups of people: People who are elderly People with physical disabilities People with developmental disabilities People with mental retardation People with mental illness People with traumatic brain injury or other specified conditions People with specified services needs, such as technology-dependent children These HCBS waivers sound great. How can a state get one? In general, states have one or more Medicaid waivers in place already. States must obtain HCBS waivers with the cooperation of State Medicaid Agencies even though other state agencies, such as the ones that serve seniors or people with disabilities, may administer the program. To receive approval to implement HCBS waivers, the State Medicaid Agency must assure the Health Care Financing Administration (HCFA) that, on an average per capita basis, the cost of providing home and community-based services will not exceed the cost of services for the identical population in an institution. The State Medicaid Agency also must document that there are safeguards in place to protect the health and welfare of beneficiaries. If my state is granted an HCBS waiver, how long will it last? HCBS waiver programs initially are approved for 3 years. They may be renewed perpetually at 5-year intervals. How can I find out more information about my state's home and community-based services waiver program(s)? You may check with your State Medicaid Agency or another state or local agency that oversees or provides services for people with disabilities. For a list of the State Medicaid Agency offices, go to the HCFA website at: www.hcfa.gov/medicaid. You also will find the number for your State Medicaid Agency in the blue section of your local phone book. OLMSTEAD V. L.C. I've heard a lot recently about the famous Olmstead case. What is it and how can it help my family? In the Supreme Court's 1999 Olmstead decision, the Court ruled that under the Americans with Disabilities Act (ADA), people cannot be placed or retained in institutions or nursing homes if the placement or retention is unjustified and if the placement would severely limit the person's exposure to the outside community. One of the most important outcomes of the Olmstead decision is the strong message that the unjustified placement of a person in an institution potentially constitutes discrimination against people with disabilities under the ADA and should not be supported by any state. What problems did the Olmstead decision address? The Olmstead decision addressed: The lack of access and availability of home and community-based services and supports for people with disabilities Violations of the ADA's integration mandate due to the unjustified placement of people with disabilities in an institutional setting What did the Court tell states to do to comply with Olmstead? There are several things the states must do to comply with Olmstead: States must operate publicly-supported programs in a non-discriminatory manner. States must offer services in the most integrated settings possible. States must provide community-based services for people with disabilities who would otherwise be entitled to institutional care. Under what circumstances are community-based services required under Olmstead? Community-based services are required when: A treatment professional decides that community placement is appropriate The person affected by the placement or the person's main caregiver do not oppose the placement The placement of the person can be reasonably accommodated, taking into consideration the resources available to the state and the needs of others who are receiving state-supported disability services What does "reasonably accommodated" mean for the states? The Supreme Court has said that under the ADA, the states must make "reasonable accommodations in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability," UNLESS... Unless what? Unless "making the modifications would fundamentally alter the nature of the [state's] service, program, or activity." So, how does the state decide whether a modification would alter a state's program? The Supreme Court said to look at 3 factors: 1. Cost 2. State resources 3. Effect on the state's ability to meet the needs of other people with disabilities What else do the states have to do? Under Olmstead, a state must prove that its programs are "even-handed" and that the programs ensure a "full range" of services. How does a state show it is in compliance with Olmstead and Title II of the ADA? A state must demonstrate that it has: An effective working plan for placing qualified people with disabilities in less restrictive settings A waiting list that moves at a reasonable pace and is not influenced by the state's interest in keeping its institutions fully occupied. How close are most states to complying with Olmstead? Most states have a long way to go. A full range of services currently does not exist in most states. The Medicaid funding and payment systems still favor institutional placement. Available community services and supports are often "cookie-cutter" and unimaginative. How is the Department of Health and Human Services (HHS) monitoring state compliance with Olmstead? On January 14, 2000, HHS sent a letter to all Medicaid State Directors, encouraging states to develop equitable plans and to involve actively people with disabilities and their representatives in the design, development and implementation of a comprehensive working plan. Endnotes Health Care Financing Administration www.hcfa.gov