"Where We Are and How We Got Here" Allan I. Bergman President & CEO Brain Injury Association PUBLIC POLICY IS VALUE-BASED CIVIL RIGHTS 1848... TO 1998 "Prejudice and superstition are an ancient disease; in some ways, they may be counted among the most distinguishing features of the Homo sapiens." Omer Bartov 11/99 Grass Roots Political Activity "A popular government without popular information, or the means of acquiring it, is but a prologue to a farce or a tragedy or perhaps both. Knowledge will forever govern ignorance, and a people who mean to be their own governors must arm themselves with the power which knowledge gives." James Madison 1822 AMERICANS WITH DISABILITIES ACT A.D.A. ! Title I: Employment ! Title II: State and Local Government Services ! Title III: Public Accommodations ! Title IV: Telecommunications A.D.A. - DISABILITY The term "disability" means, with respect to an individual: ! A physical or mental impairment that substantially limits one or more of the major life activities of such individual; ! A record of such an impairment; or ! Being regarded as having such an impairment. MAJOR LIFE ACTIVITIES ! Caring for oneself ! Performing manual tasks ! Walking ! Seeing ! Hearing ! Speaking ! Breathing ! Learning ! Working ADA - NON DISCRIMINATION TITLE II Subject to provisions of this title, no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity. ADA Integration Mandate "A public entity shall administer services, programs and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities" 28 CFR Section 35.130(d) "A public entity shall make reasonable modifications in its policies, practices, or procedures when modifications are necessary to avoid discrimination, unless...modification would fundamentally alter the nature of the services, program or activity." 29 CFR 35.130(b)(7) LUCILLE C. and ELAINE W. Olmstead v. L.C. 11th Circuit - "...the state (Georgia) discriminated against L.C. and E.W. by confining them in a segregated institution rather than in an integrated community based program - ...the state's actions in this case constituted discrimination... - ...the state has violated the core principle underlying the ADA's integration mandate..." THE QUESTION PRESENTED IN OLMSTEAD "Does Title II of the ADA compel a State to provide treatment for mentally disabled persons in a community placement, when appropriate treatment can also be provided to them in a state hospital?" OLMSTEAD vs. L.C. & E.W.: 1. What Did the Supreme Court Say? A. The ADA is a fundamental civil rights statute! B. The Court acknowledged that Congress found that discrimination against people with disabilities includes segregation, isolation and institutionalization. OLMSTEAD vs. L.C. & E.W.: C. Under ADA, a legal right to be served in the most integrated setting. Not open to state's discretion. D. Unnecessary isolation and institutionalization is discrimination and requires community placement, if: OLMSTEAD vs. L.C. & E.W.: - "State's treatment professionals" have determined community placement appropriate for specific individuals; - Transfer to the community is not opposed by "affected individual;" and - Community placement can be "reasonably accommodated, taking into account resources available and needs of other people with ...[ ]" OLMSTEAD vs. L.C. & E.W.: 2. Court said "the reasonable-modifications standard would be met," if State has: - A comprehensive, effectively working plan for persons [in community], and - a waiting list that moved at a reasonable pace not controlled [by the State]...to keep institutions fully populated..." OLMSTEAD vs. L.C. & E.W.: 3. "Fundamental Alterations" allow state: - To maintain a range of facilities and - To administer services with an even hand..." OLMSTEAD vs. L.C. & E.W.: E. What judgments did supreme court say show that "unjustified institutional isolation...is a form of discrimination"? - "Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life." - "Confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contracts, work options, economic independence, education advancement, and cultural enrichment." ...No American should have to live in a nursing home or state institution if that individual can live in a community with the right mix of affordable supports... - Donna Shalala Secretary of Health and Human Services @ NCSL Annual Meeting. July 28, 1999 Conclusions from Olmstead: - ADA applies to all people with disabilities across the age span - Title II is not only for Medicaid beneficiaries - Title II is not only for Medicaid services - Title II is really about how states organize services and supports - Title II is about informed consumer choice - Title II does not require the closure of all institutional facilities - Olmstead is about planning and systems change Board of Trustees of University of Alabama vs. Garrett - U.S. Supreme Court, February 21, 2001 - 5 to 4 Decision - 11th Amendment expanded to preclude ADA Title I Damages Litigation against a state for employment discrimination - Individuals can still sue states for injunctive relief under Title I of the ADA for injunctive relief - No direct impact on Olmstead under Title II - No impact on employment discrimination under Title I against local government and private employers 1994 Disability Survey - New data set - First national comprehensive disability survey - All ages included - Only includes community population - Poverty and program participation data are unimputed Board of Trustees of University of Alabama v. Garrett ! U.S. Supreme Court, February 21, 2001 ! 5-4 Decision ! 11th Amendment expanded to preclude ADA Title I Damages Litigation against a state for employment discrimination ! Individuals can still sue states for injunctive relief under Title I of the ADA for injunctive relief ! No direct impact on Olmstead under Title II ! No impact on employment discrimination under Title I against local government and private employers Major Disability Definitions ! Work disability (limitations in or inability to work due to disability) ! Disability program recipient (SSI, SSDI, Special Education, Part H, Veterans' Day Disability Pension, Disability Retirement) ! Perceived disability (ADA) - ("Do you consider yourself or do others consider you to have a disability?") Functional Disability -- Children ! Physical activities (e.g., running, playing, climbing stairs, ADLs) ! Mental activities (e.g., getting along with other children, behavioral, service use) ! Development in cognitive, learning, speaking ! Special health needs (e.g., excessive utilization, special equipment to breathe) ! Children under 5 (age-appropriate - sitting up, walking, talking) Functional Disability -- Adults ! Functional disability includes limitation or inability to perform age-appropriate activities for at least 12 month, e.g. ! Physical activities (e.g., walk 3 blocks, lift 10 lbs.., grasp, climb stairs) ! Sensory impairments (e.g., see, hear, communicate) ! Mental impairments (e.g., symptoms, service use, prescription drugs) ! Assistive devices (e.g., wheelchairs, scooters) ! ADL (e.g., bathe, dress, get out of bed or chair) ! IADL (e.g., prepare meals, manage money) Alternative Disability Definitions: 1994 (in millions) Functional - Work - Disability - Perceived - Functional OR Work OR Programs OR Disability Disability Program Disability Perceived Recipient Long-Term Care Definition ! Needs help of another person in order to perform ADL or IADL For under 5 - sit up by 2, walk by 3, special equipment to breathe Disability and Long-Term Care Needs in General Population Prevalence of Disability Proportion with LTC Needs 47.6 million 11.6 million Disability and Long-Term Care Needs in the Medicaid Population by Age Percentage of U.S Population Over 6Percentage of U.S Population Over 65 Years of Age 25 20 15 Percentage of U.S. Population over 65 10 * Projections 5 0 1950 1970 1990 *2010 *2030 *2050 *2070 Aged Population/ Projected 1998 2000 2025 2050 2075 2100 In Millions 65 Years and over 34.9 35.3 60.7 75.3 85.8 93.2 75 Years and over 16.1 16.7 24.9 39.7 46.8 52.1 85 Years and over 4.2 4.2 6.2 14.5 16.8 20.4 SOURCE: Social Security Administration, Office of Programs: Data from the Office of the Actuary FAMILY CAREGIVING ACROSS THE AGE SPAN ECONOMIC ISSUES ! Family Caregiving Value: $196 Billion/yr. ! Nursing Home Care Spending: $83 Billion (1998) ! Home Care Spending: $32 Billion (1998) Federal Budget Outlays FY '99 $1.703 Trillion Source: OMB Federal Budget Outlays-Mandatory Programs FY '99 $951.731 Billion Source: OMB Medicare Reform Legislation ! Maintain as a social insurance program and do not convert to a market driven system ! People with disabilities of all ages must be protected in access to health care ! Oppose mandatory enrollment of the "dually eligible" population into state Medicaid managed care health plans ! Access to affordable and appropriate prescription drug coverage ! Medicare is not just for Americans over 65 years of age Medicare Homebound Clarification Act of 2001 ! Representative Edward Markey ! Change antiquated home care criteria which focuses on frequency, duration and purposes under which Medicare beneficiaries may leave their home ! An issue of freedom and community access/ participation ESTIMATED MEDICARE BENEFIT PAYMENTS, BY TYPE OF SERVICE, FISCAL YEAR 1999 Skilled Nursing Facilities 6% Home Health A 6% Other Part B Benefits 6% Hospital Inpatient 40% Hospital Outpatient 8% Physicians 15% Home Health B 1% Hospice 1% Managed Care Plans 17% Total $212 billion* *Exclude administrative expenses SOURCE: Congressional Budget Office, An Analysis of the President's Budgetary Proposals for Fiscal Year 2000, April 1999. Number of Medicare Beneficiaries Fiscal Years 1967-2027 80 60 40 20 0 1967 1977 1987 1997 2007 2017 2027 *Includes beneficiaries whose eligibility is based solely on end-stage renal disease (96,000 in 1997) SOURCE: Health Care Financing Administration, Office of the Actuary, April 1998 Social Security Reform ! Trust Fund solvent until 2038 ! 38% of Social Security benefits do not go to retired workers ! General Accounting Office report, January 2001 to Senator Tom Harkin ! All privatization proposals would reduce cash income for beneficiaries with disabilities compared to current law Social Security Reform ! People with disabilities must be included in any reform proposal development and discussion. Social Security Reform ! Individual investment accounts (IA's) would produce less for beneficiaries with disabilities because of typically shorter work histories and less time to accumulate money in their accounts. ! S.S.D.I. often is the only income source for people who have experienced a brain injury in their adult life. TITLE XIX-GRANTS TO STATES FOR MEDICAL ASSISTANCE PROGRAMS [42 U.S.C. Sec. 1396] Sec. 1901. For the purpose of enabling each state as far as practicable under the conditions in such State, to furnish (1) medical assistance on behalf of families with dependent children and of aged, blind or disabled individuals, whose income and resources are insufficient to meet the costs of necessary medical services, and (2) rehabilitation and other services to help such families and individuals attain or retain capability for independence of self-care, there is hereby authorized to be appropriated for each fiscal year a sum sufficient to carry out the purposes of this title. The sums made available under this section shall be used for making payments to Sates which have submitted, and had approved by the Secretary, State plans for medical assistance. MEDICAL "MODEL" VS PSYCHOSOCIAL "MODEL" MEDICAID EXPENDITURES BY SERVICE, 1997 ICF/MR 6% Mental Health 1.7% Home Health 8.8% Nursing Facilities 20.4% Inpatient 15.3% Physician, Lab & X-Ray 48% DSH Payments 9.9% Outpatient/Clinic 7.1% Payments to MCOS 9.7% Drugs 6.3% Payments to Medicare 2.8% Other Acute 7.2% Total = $161.2 billion SOURCE: Urban Institutes Estimates, 1999. MEDICAID ENROLLEES AND EXPENDITURES BY ENROLLMENT GROUP, 1997 Elderly 10.1% DSH Payments** 9.9% Blind & Disabled 16.8% Elderly 27.6% Adults 21.2% Blind & Disabled 37.5% Children 51.8% Adults 10% Children 15% Enrollees Expenditures* Total = 40.6 million people Total = $161.2 billion * Total expenditures exclude administrative expenses ** Disproportionate share hospital payments SOURCE: Urban Institute Estimates, 1999. E.P.S.D.T This act requires that any service which you are permitted to cover under Medicaid that is necessary to treat or ameliorate a defect, physical and mental illness, or a condition identified by a screen, must be provided to E.P.S.D.T participants regardless of whether the service or item is otherwise included in your Medicaid plan. Medicaid and Long-Term Care ! Pays for half of all nursing home spending ! Accounts for 80% of public dollars spent on nursing home care ! Pays for 15% of total home care spending ! Limited to the poor/ "spend-down Evolution of Medicaid Long Term "Care" (services & supports) 1965 Title XIX Enacted with S.N.F. Entitlement 1967 I.C.F. Option 1971 I.C.F.M.R. Option 1981 Home & Community-Based Services Waiver Option 1982 Katie Beckett Waiver 1986 Home & Community-Based Services Amendments ! Supported Employment ! Respite Care 1987 Nursing Home Reform ! Federal Standards ! PASARR 1990 Community Supported Living Arrangements (CSLA) Option 1991 Frail Elderly Services Option 1992 Personal Care Amendment 1995 CSLA Expired Medicaid Expenditures for Long-Term Care Services 1987-1997 (in thousands of dollars) 1987 1997 ACRG 1987-1997 Personal Care 1,178,031 3,207,381 10.5% HCBS Waiver 451,061 8,107,233 33.5% Home Health 439,655 2,189,562 17.4% Frail Elderly 0 91,516 NA ICF 7,599,393 SNF 5,966,181 32,532,667 18.5% ICF-MR 5,501,832 9,996,224 6.2% Total Long-Term Care 21,136,153 56,124,583 10.3% Total Medicaid 46,955,851 160,256,207 13.1% THE CHALLENGE IS "EQUITY" DEVOLUTION CONTINUES: THE CHANGING ROLES OF FEDERAL AND STATE GOVERNMENT GOVERNMENT "TRENDS" PRIVATIZATION... OUTSOURCING... DOWNSIZING... FROM A CONTINUUM OF CARE TO AN ARRAY OF INDIVIDUAL AND FAMILY SUPPORTS Nursing Home Residents All families-1997 Total: 1,608,700 Age Distribution: Under 65 years-8.5% 65-74 years-12.3% 75-84 years-32.8% 85 years and over-45.9% Doe v. Chiles (2/26/98) 11th CIRCUIT COURT OF APPEALS ! PROMPTNESS-WAITING LIST NO LONGER THAN 90 DAYS ! "ENTITLEMENT" TO ICF-MR WAIT-LIST LITIGATION ! 14 filed in MR/DD Area: 5 settled ! 1 case filed in aging RESIDENTS IN PUBLIC MR/DD INSTITUTIONS 1977-149,892 1988-91,531 1992-77,600 1996-59,726 No State Operated Large ICF's-MR As of 6/30/99 Alaska D.C. Hawaii Maine New Hampshire New Mexico Rhode Island Vermont West Virginia 300 or Fewer Residents of State Operated Large ICF's-MR as of 6/30/99 Arizona 92 Colorado 152 Delaware 264 Idaho 112 Michigan 272 Minnesota 72 Montana 130 Nevada 165 North Dakota 139 Oregon 173 South Dakota 195 Utah 250 Wyoming 120 ICF-MR Residents as a Proportion of All Residents of State and Nonstate Settings by Size on June 30, 1999 250000 200000 150000 1000000 5000 0 1-6 7-15 16+ 1-6 7-15 16+ STATE NONSTATE Federal Medicaid Expenditures for ICF-MR and HCBS Programs for Persons with MR/DD as a Proportion of All Federal Expenditures Year Total Federal Medicaid Expenditures Total Federal ICF-MR and HCBS Expenditures for Persons with MR/DD Federal iCF-MR and HCBS Expenditures for Persons with MR/DD as Proportion of All Medicaid Expenditures 1995 $86.684 billion $7.5057 billion 8.7% 1996 $88.294 billion $8.171 billion 9.3% 1997 $91.826 billion $8.88804 billion 9.7% 1998 $96.049 billion $9.762 billion 10.2% 1999 $102.949 billion $10.143 billion 9.9% SOURCE: HCFA, Office of State Financial Management Percent of Medicaid Long-Term Care Clients Served in Community Based Care Percent of Long-Term Care Cases by Type of Service R.W.J. Foundation Cash and Counseling Demonstration ! Arkansas ! Florida ! New Jersey ! New York (University of Maryland) ELDER PHILOSOPHY ! AUTONOMY, DIGNITY, PRIVACY ! PROMOTE AGING IN PLACE ! DECISION MAKING/ CHOICE PERSON/ FAMILY CENTERED PLANNING PRINCIPLES OF SELF DETERMINATION (Shumway & Nerney) ! FREEDOM to plan a real life ! AUTHORITY to control a limited amount of resources ! SUPPORT for building a life in one's community ! RESPONSIBILITY to give back to one's community Family Opportunity Act S.231/ H.R. 600 ! Senators Grassley/ Kennedy ! Representatives Sessions/ Waxman ! Medicaid buy-in for families with children up to age 18 ! Incomes up to 300% Federal poverty level (approximately $51,150/yr for a family of 4) ! Fund information and outreach centers for families ! Estimated cost, $2 billion over 5 years HOMEOWNERSHIP: ! HUD issues final regulations for use of Section 8 vouchers for homeownership ! Issued October 12, 2000 ! At the discretion of local public housing authorities/agencies Successful Community Life ! Housing ! Healthcare and Appropriate Medical Services ! Transportation ! Employment ! Leisure/ Recreation ! Friends/ Relationships ! Choice ! Community Supports ! System Infrastructure ! Quality Assurance 1992 Rehabilitation Act Amendments ! Presumptive Eligibility ! "Choice" STATE V.R. PROGRAM "(3) It is the policy of the United States that such a program shall be carried out in a manner consistent with the following principles: "(A) Individuals with disabilities, including individuals with the most severe disabilities, are generally presumed to be capable of engaging in gainful employment and the provision of individualized vocational rehabilitation services can improve their ability to become gainfully employed. "(B) Individuals with disabilities must be provided the opportunities to obtain gainful employment in integrated settings. In The Work Force 29.4 Million Americans with Disabilities in the Work Force Source: National Organization on Disability/ Harris Survey of Americans with Disabilities, 1998. LIMITED USE OF SSI WORK INCENTIVES ! Only 6.2% of SSI recipients worked in June, 1999 -- 337,928 of 5,293,829 individuals ! Worker earning remain limited -- 71% earned below SGA ($700/month) -- 28% earned $65/ month or less ! Use of Work Incentives by workers remain low -- PASS .3% -- IRWE 3.0% -- BWE 1.2% DISABILITY PROGRAMS' ESCALATING COSTS Disability Insurance Supplemental Security Income Total 1960 $ 0.5 $-- $ 0.5 1970 2.8 -- 2.8 1980 14.9 5.7 20.6 1990 24.4 11.5 35.9 1997 47.2 27.2 74.4 2002 68.3 36.2 104.5 S.S.A. ESTABLISHES OFFICE OF EMPLOYMENT SUPPORT PROGRAMS THE GOOD NEWS: Integrated Employment is Rising THE BAD NEWS: Facility-Based & Non-Work Services Keep Rising Ticket to Work And Work Incentives Improvement Act of 1999 Initial "Ticket" States February 2001 ! Arizona ! Delaware ! Illinois ! Massachusetts ! Oklahoma ! South Carolina ! Wisconsin ! Colorado ! Florida ! Iowa ! New York ! Oregon ! Vermont Unemployment rate: 3.9% April 2000 Lowest since January 1970 (peaked @ 7.8%-Mid 1992) Increase the minimum wage EXPANDED AND ENHANCED ROLE OF AND FOR TECHNOLOGY ACCOUNTABILITY FOR VALUED OUTCOMES DATA ARE ESSENTIAL Health Outcomes ! Health Status ! Functional Capacities ! Community Participation ! Quality of Life ! Consumer Satisfaction "All providers, regardless of size, must be able to say this is what we do, this is how we do it, and here is the durability of the outcome." Christine MacDonell CARF "QUALITY" MALCOLM BALDRIGE AWARDS ! LEADERSHIP 110 POINTS ! STRATEGIC PLANNING 80 POINTS ! CUSTOMER FOCUS/ 80 POINTS SATISFACTION "QUALITY" MALCOLM BALDRIGE AWARDS (CONTINUED) ! INFORMATION ANALYSIS 80 POINTS ! HUMAN RESOURCES 100 POINTS ! PROCESS MANAGEMENT 100 POINTS ! BUSINESS RESULTS 450 POINTS President George W. Bush's New Freedom Initiative ! February 1, 2001 ! "I am committed to tearing down the remaining barriers to equality that face Americans with disabilities today." ! Spoke positively about his commitment to the ADA and to IDEA Competing Priorities for "Surplus" ! Tax Cuts ! Save Social Security and Medicare ! Pay down national debt ! Increase spending Political-Economic Context State Government ! Congressional redistricting based on 2000 Census ! Surpluses are over ! 20 states face revenue shortfall ! States provided tax cuts of $34 billion from 1995-2000 ! Medicaid budgets soaring ! National Governors' Association debates Medicaid reform and institutional bias MICASSA-S. 1935 Senators Harkin and Specter "Medicaid Community Attendant Services and Support Act of 1999" "...and who requires such community attendant services and supports based on FUNCTIONAL need and WITHOUT regard to age or disability," DISABILITY POLICY FOR THE NEW MILLENIUM RIGHTS RESPONSIBILITIES "(3) disability is a natural part of the human experience and in no way diminishes the right of individuals to- "(A) live independently; "(B) enjoy self-determination; "(C) make choices; "(D) contribute to society; "(E) pursue meaningful careers; and "(F) enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society New Opportunities for the Disability Community in 2001 ! $50 million in "Real Choice" grants to states ! $20 million in nursing home transition grants ! $50,000 starter grants to states ! TWWIIA Regulations ! HUD Section 8 vouchers for homeownership ! Older Americans Act (PL 106-501) ! National Family Caregivers Support Program ! New Office of Disability Employment Policy at the Department of Labor *INNOVATION *CREATIVITY *INITIATIVE *FLEXIBILITY *RISK ACTION STEPS *Clarify Your Values *Become Market Driven *Be Customer Responsive *Fund Strategies and Activities *Implement the Values *Measure Outcomes collaboration. 1. to work together, especially in some literary, artistic, or scientific understanding: 2. to cooperate with an enemy invader. WEBSTER'S NEW WORLD DICTIONARY BELONGING be-long, v. 1: to feel and be a part of ...i.e. of a community, a workplace, a neighborhood or school 2: to enjoy a sense of contribution, value, self-worth 3: to truly believe one is a natural and equal part of the whole 4: comfortable, safe, cared for, welcome. OPPORTUNITY IS MISSED BY MOST PEOPLE BECAUSE IT IS DRESSED IN OVERALLS AND LOOKS LIKE WORK Thomas Edison "If you can't afford to leave the public housing project, you're not free. If you don't know how to find a job and you don't know how to create a job, you are not free. If you can't find a place that'll educate you, you're not free..." Speaker of the House Newt Gingrich January 4, 1995 Acceptance speech in House of Representatives Freedom- (1) the condition of being free of restraints; (2) liberty of the person from slavery; oppression or incarceration; (3) profession of civil rights; (4) immunity from the arbitrary exercise of authority; (5) the capacity to exercise choice or free will; (6) the right of enjoying all of the privileges of membership or citizenship. The American Heritage Dictionary Allan I. Bergman President & CEO Brain Injury Association 105 N. Alfred Street Alexandria, VA 22314 Phone: (703) 236-6000 Fax: (703) 236-6001 Page Page Page