THE WASHINGTON MEDICAID STATE PLAN PERSONAL CARE SERVICES PROGRAM

Transcription

1 THE WASHINGTON MEDICAID STATE PLAN PERSONAL CARE SERVICES PROGRAM Martin Kitchener, Ph.D Terence Ng Micky Willmott Charlene Harrington, Ph.D October 2005 Center for Personal Assistance Services Department of Social & Behavioral Sciences 3333 California Street, Suite 455 University of California, San Francisco Telephone: This project was funded by National Institutes on Disability and Rehabilitation Research (NIDDR) Grant No. H133B Government sponsorship of this research does not constitute endorsement of the results or the conclusions presented here.

2 Acknowledgements The State of Washington is participating in a broader CMS-funded 7-state collaborative study of its effort to rebalance long-term care and support programs, which is being conducted through a master contract with the CAN Corporation (Contract Number - RTPP CMS ). Rosalie A. Kane from the Division of Health Services Research, School of Public Health, University of Minnesota is the Principal Investigator; Charlene Harrington and Martin Kitchener from the University of California, San Francisco, are participating on the multi-organization study team. The Year 1 reports from this 3-year study are expected to be available from the investigators and CMS in the fall of 2005 and will provide fuller information and context for the material presented here. The authors acknowledge colleagues from the CMS project team who are working on the Washington report: Robert Mollica, Rosalie Kane, Robert Kane, Donna Spencer, and Reinhard Priester. The authors are also grateful for the research assistance of Brian Grossman and Amina Huda. ii

3 Table of Contents Introduction 1 Methods 2 Washington State Characteristics 3 Socio-Demographic, Economic, and Political Characteristics 3 State Medicaid Program 4 Washington Long Term Care 5 Organizational Structure 5 Medicaid LTC Participants and Expenditures 6 Medicaid 1915(c) Waivers 7 Personal Care Through Medicaid Waivers 10 Personal Care Through the Older Americans Act 11 Other Personal Care 11 Strategic Planning Activity 12 Litigation Related to the Olmstead Decision 12 Washington Medicaid State Plan Personal Care Services 13 Single Entry Administrative Program 13 Program Participants and Expenditures 13 Types of Clients 14 Types of Providers 15 Assessment Procedures 15 Assessment Tool 16 Need Criteria 17 Fast Track System 18 Case Management for Nursing Home Transition 18 Financial Eligibility 19 Services Available 19 Hours of Care 19 PCS Delivery Sites 20 Consumer Choice and Consumer Directed Care 20 Cost Controls 21 PCS Training 21 Quality Controls 22 Home Care Quality Authority 23 Provider Registry 24 Provider Rates, Wages and Benefits 24 Provider Supply 25 Future Plans 25 Summary 25 References 26 iii

4 List of Tables Table 1 Socio-Demographic (Need) Characteristics, Washington and US, and 2004 Table 2 Economic and Political Characteristics, Washington and US 4 Table 3 Medicaid in Washington and US, Table 4 Medicaid LTC Participants and Expenditures 6 Table 5 Washington Medicaid 1915(c) HCBS Waivers in Table 6 Medicaid 1915(c) Participants, Expenditures, and Services 8 Table 7 Medicaid Personal Care Waivers, Table 8 Personal Care in Older Americans Act Title III, Table 9 Other Sources of Personal Care Funding in Washington 11 Table 10 Washington Medicaid State Plan PCS Program, Table 11 Washington Medicaid State Plan PCS Client Groups Served, Table 12 Washington Medicaid State Plan PCS Enrolled Provider Entities, Table 13 Washington Medicaid State Plan PCS Need Assessment and Authorization, Table 14 Washington Medicaid State Plan PCS Financial Eligibility, Table 15 Washington Medicaid State Plan PCS Services, Table 16 Washington Medicaid State Plan PCS Delivery Sites, Table 17 Washington Medicaid State Plan PCS Cost Controls, Table 18 Washington Medicaid State Plan PCS Care Providers, Table 19 Washington Medicaid State Plan PCS Provider Benefits, Table 20 Washington Medicaid State Plan PCS Provider Rates, Table 21 Washington Medicaid State Plan PCS Provider Supply, iv

5 INTRODUCTION Although the majority of long-term care (LTC) in the United States is still provided informally (unpaid, usually by family and friends), policy-makers face mounting pressure to expand access to formal (paid) home and community-based services (HCBS). The main aim is to allow consumers to live as independently as possible rather than in institutions such as nursing homes. The pressure on states to broaden access to HCBS increased in 1999 when the Supreme Court ruled in the Olmstead case that unjustified institutionalization of persons on public programs constitutes discrimination in violation of the 1990 Americans with Disabilities Act (ADA). Subsequent consumer litigation against certain states has provided further impetus for change (Kitchener et al., 2005). HCBS programs have become increasingly popular over institutional care as a model for providing LTC. Despite these mounting pressures for HCBS, studies report that the development of HCBS funded by Medicaid (the largest single payer of LTC) remains uneven across the states and limited by factors including policies that commit 64.5 percent of the program s LTC expenditures to institutions (Burwell et al., 2005). Previous studies of HCBS development have given limited attention to personal care services which involve non-medical assistance with activities of daily living (ADLs), such as bathing and eating, and instrumental ADLs (IADLs), such as shopping and preparing meals (LeBlanc et al., 2001). In the US, formal personal care is paid by a combination of private sources (out of pocket expenses and the limited indemnity and employer-based insurance markets) and governmental programs. While Medicaid is the main program for providing personal care, it is also funded through a variety of other federal and state programs including: Older Americans Act (OAA) Title III, the U.S. Department of Veterans Affairs Housebound and Aid and Attendance Allowance Program, the Medicare home health benefit, and Title XX Social Security Block Grants. Many elderly and disabled persons rely on formal personal care services (PCS) to remain independent, especially Medicaid programs delivering community-based personal care (Stone, 2001). Although states have had the option of providing PCS as a Medicaid state plan benefit since 1975, 22 states reported no commitment of funds to the benefit in 1995 (Winterbottom et al., 1995). Since then, the PCS benefit has become the major funding mechanism for personal care used by the elderly and by younger, physically disabled persons living in the community (LeBlanc et al., 2001). While the Medicaid program allows states considerable discretion in defining PCS, care must be approved by an authority recognized by the state (e.g., a physician) and cannot solely involve ancillary tasks (e.g., housekeeping or chores). The PCS benefit must be made available to all categorically eligible groups statewide although it may (at the discretion of states) include the medically needy (those who spend down to the state standard because of medical expenses). By 2002, 30 states operated Medicaid PCS programs with 683,099 participants and total expenditures of $5,593,540,432 (Kitchener, et al., 2005b). Nationally, the PCS program represented 63% of public personal care expenditures. Studies of PCS programs indicate wide variation in policies including: hours provided per day, services provided outside the participant s residence, and hiring independent providers not employed by licensed agencies (Mollica, 2001; Kitchener, et al., 2005b). An increasing number of state PCS programs provide 1

6 care with the aim of expanding consumer-directed services either in traditional home care or personal attendant agencies or by use of independent providers (Summer and Ihara, 2004). Consumer direction aims to give clients greater control over funds (e.g., cash allowances) and the management of care attendants. A study of California s PCS program indicated that allowing participants to hire relatives, friends, and neighbors may increase client satisfaction and help address the limited supply of attendants (Benjamin, 2001). To address the information gap about state PCS programs, this study selected states that had promising practices in their Medicaid PCS optional state plan program for more in-depth study. Washington was selected as one of these states for two primary reasons. First, it was known for having invested in its Medicaid HCBS programs. In 2004, the state spent 54.7 percent of its Medicaid long term care expenditures on HCBS and only 45.3 percent on institutional services, giving it a rank of 6 th in the country for its distribution of HCBS expenditures to the total (Burwell et al., 2005). Second, the state reported allowing for independent providers and consumer directed care in its PCS program. This report first presents an overview of the Washington state socio-demographic characteristics, economic and political factors, and budget. The report then reviews the state Medicaid program and the administration and management of its HCBS programs. Specifically, it reviews the state personal care programs including the personal care in waivers, the Older Americans Act, and other programs. The primary focus is on the organization and management of the Medicaid PCS optional state plan program. The main features of its program are described. METHODS The purpose of this in-depth study was to describe selected Medicaid State Plan PCS programs and to understand the factors that facilitated or created barriers to the development of better PCS practices. From a systematic review of the research literature, a list of better practices concerning the following three aspects of PCS programs was compiled: planning, structure/content, and review/monitoring. Better practices within each category involve issues concerning consumer perspectives. Evidence of better practices among PCS programs was collected from two sources: (1) the PAS Center advisory panel; and (2) the researchers study. The final selection of case sites involved three further criteria: (1) each program must have been operational for at least one year, (2) there must have been some quantitative or qualitative program data even if this information was not collected as part of an organized evaluative design, and (3) the set of programs was designed to include variation along dimensions including: state size, region, per capita income, population density, and various other attributes. The information on this and the other six cases was obtained from multiple sources including: secondary data, face-to-face and telephone interviews with state officials and various consumer and professional organization representatives conducted in the state. In addition, statistical data on the PCS programs were collected for l

7 WASHINGTON STATE CHARACTERISTICS As background to this study of the Washington Medicaid State Plan PCS Program, this section presents information on the following four sets of state characteristics shown to be important within the research literature: (1) socio-demographics, economics, and political characteristics, and (2) the state Medicaid program. Socio-Demographic, Economic, and Political Characteristics Washington is a northwestern state with a 2004 population of 6.2 million people, ranking 15 th largest in population in the U.S. (US Census Bureau, Population Division 2004). (See Table 1). While almost 11 percent of the population is aged 65 and over with a growing population of age 85 and over, these rates are slightly lower than the national average. The state population is predominantly white (81.26 percent) but it has the 5 th highest population of American Indian and Alaska natives in the 50 states (1.8 percent). Table 1. Socio-Demographic (Need) Characteristics, Washington and US, 2003 and 2004 WA US Total Population (2004) 1 6,203, ,655,404 Percent of Persons Age 65+ (2003) % 11.98% Percent of Persons Age 85+ (2003) % 1.25% Percent of Population Minority (2003) % 23.84% Percent of Persons with Disabilities (2003) % 14.8% Percent of Persons with Difficulty in Self-Care (2003) 3 2.5% 2.7% Percent of Persons with Difficulty in Self-Care Living Alone (2003) 4 27% 23.5% Sources: (1) U.S. Census Bureau Population Division (2004); (2) U.S. Census Bureau, American Community Survey (2004d) Population and Housing Profile; (3) National Center for Personal Assistance Services (2003); and (4) State Disability Statistics from the 2003 American Community Survey. Washington has an average level of disability (Table 1). An estimated 832,000 (14.9 percent) persons over 5 years old have a disability. Of these people, an estimated 2.5 percent have difficulty performing self-care activities such as bathing, dressing, or eating. Of adults (18-64 years) with difficulty in self care in Washington, 27 percent live alone. Despite a budget deficit of about $6.5 million in 2004, Washington is one of the wealthier states in the nation in terms of per capita income, ranking 15 th nationally in 2002 ($32,793 per capita) (Smith, 2004) (See Table 2). Washington has had serious fiscal constraints since 1995, in part, related to state ballot initiatives in 1994 and 1999 (Weiner and Lutzky, 2001). In 1994, Initiative 601 limited the rate of growth in state general fund expenditures to the sum of the change in inflation and population growth. Initiative 695, passed in 1999, eliminated the state motor vehicle excise tax and replaced it with an annual vehicle fee, causing a large loss in revenues. These two measures placed serious cost controls on the state and resulted in a focus on limiting Medicaid and long term care budgets (Weiner and Lutzky, 2001). 3

8 Table 2: Economic and Political Characteristics, Washington and US WA US Economic Characteristics State Fiscal Status (net state revenue,2003) 1 ($6,564,885) Percent of Population in Urban Area (2000) % 79.01% Percent of Population in Poverty (2003) 3 11% 12.7% Personal Income Per Capita (2002) (constant 2002 dol.) 4 $32,793 $30,906 Percent of Population Unemployed (2004) 5 5.7% 5.4% Percent Persons Not Covered by Health Insurance (2003) % 15.1% Political Climate ADA Senator liberalism rating 7 90% N/A Sources: (1) U.S. Census Bureau (2005) (State revenue minus state expenditures), (2) US Census Bureau (2004), (3) U.S. Census Bureau American Community Survey, (2004a), (4) US Bureau of Economic Analysis (2005), (5) US Dept of Labor (2004), (6) De Navas et al (2004), and (7) Americans for Democratic Action (2005). Even though the state is relatively affluent in terms of income, 11 percent of the state s population lives in poverty (less than the national average of 12.7%) (Table 2). The percentage of people with disabilities living in poverty is, however, greater than in the general state population - about 18 percent of people with disabilities and about 23 percent of people with difficulty performing self-care activities live in poverty. The percentage of Washington residents not covered by health insurance is smaller than the national average (14.3 percent vs percent) (DeNavas et al., 2004). Although the percentage of Washington residents living in urban areas was greater than the national average (81.96 percent vs percent), the state has a sizeable rural population in need of services. In 2005, Democrat Christine Gregoire became the Governor of Washington. In 2005, both Washington s Democratic US Senators (Maria Cantwell and Patty Murray) had a combined Americans for Democratic Action (ADA) liberalism rating of 90 percent. Senator Cantwell had been in the office for 5 years and Senator Murray had been in the office for 17 years. Washington has 9 U.S. Representatives; 3 Republicans and 6 Democrats. The Democrats had ADA scores ranging from 85 to 100 percent, while the combined Republican ADA scores primarily range from 5 to 10 percent. The Washington House of Representatives was comprised of 55 Democrats and 43 Republicans, the state Senate was comprised of 26 Democrats and 23 Republicans. Overall, the state has a reputation for liberal politics. State Medicaid Program In 2002, Washington s Medicaid program provided services to over 1 million participants with expenditures of over $5 billion. The number of Medicaid participants per 1,000 population in Washington was just below the national average (see Table 3). 4

9 Table 3: Medicaid in Washington and US, 2002 Medicaid WA US Participants 1 1,039,070 49,754,619 Participant per 1,000 population Expenditures 2 $5,053,403,005 $243,496,863,000 Expenditures per capita $ $ Federal match %. Managed care No Financial Eligibility for NFs (% SSI) 1 300% 209b Rules 4 No State Supplemental Payment (SSP only) 5 Yes ($25.90) Sources: (1) Centers for Medicare and Medicaid Services (2005), (2) National Association of State Medicaid Directors (2003), (3) Centers for Medicare and Medicaid Services (2005), (4) Social Security Administration (2005) and (5) Social Security Online (2004). In 2003, the federal government matched the Washington state Medicaid expenditures for both mandated and optional services at the rate of percent. Supplemental Security Income (SSI) eligibility automatically qualified individuals who were aged, blind and disabled for Medicaid services as categorically eligible individuals. In 2005, the federal SSI standard for an individual was $579 per month. In 2004, Washington offered state supplemental payments (SSP) to 29,367 people and a medically needy program was also offered. Thus, Washington had fairly generous eligibility criteria for the Medicaid program compared with other states. WASHINGTON LONG-TERM CARE As background to this study of the Washington Medicaid State Plan PCS Program, this section presents information on the organizational structure for LTC. In addition, four aspects of the publicly funded LTC in Washington are described: (1) Medicaid LTC participants and expenditures by provision type, (2) personal care delivered through Medicaid waivers, (3) other programs delivering personal care, and (4) Community Integration (Olmstead) activity. Organizational Structure Washington has a number of departments that are involved in health care services. The primary department that has responsibility for long term care services is the Washington State Department of Social & Health Services (DSHS). DSHS has 8 major divisions including Children s Administration, Health and Rehabilitation, Health and Recovery Services, and Aging and Disability Services Administration (ADSA). In 1987, the Aging and Adult Services Administration was formed. In 2003, the aging and developmental disabilities programs were brought together administratively under the Washington State Aging and Disability Services Administration (ADSA) designed to assist children and adults with developmental delays or disabilities, cognitive impairment, chronic illness and related functional disabilities to gain access to needed services and supports (WA State DSHS, ADSA, 2004). 5

10 The ADSA mission is to manage long term care and supportive services that are high quality, cost effective, and responsive to individual needs and preferences. The ADSA is divided into four divisions: Home and Community Services, Developmental Disabilities, Residential Care Services, and Management Services. In , the ADSA budget was $2.3 billion (WA State DSHS, ADSA, 2004), which represented 15 percent of the total Department s budget. The program served over 60,000 individuals annually during that period. The mission of the Home and Community Services (HCS) Division is to promote, plan, develop, and provide long term care services responsive to the needs of persons with disabilities and the elderly with priority attention to low-income individuals and families. (WA State ADSA, 2004). The Developmental Disabilities Division has a similar mission to provide supports and services to about 33,000 individuals with DD and their families. Almost 96 percent of the DD clients live in the community in their own homes with parents or other family members (WA State ADSA, 2004). Medicaid LTC Participants and Expenditures Table 4 shows LTC 2002 participants and 2004 expenditures in Washington. Table 4: Medicaid LTC Participants and Expenditures WA US Participants (per 1,000 population) in 2002 Nursing facility 1 18,737 (3.09) 1,346,686 (4.68) ICF/MR 1 62 (0.01) 117,497 (0.41) Total Institutional 1 18,799 (3.10) 1,464,183 (5.08) Home Health 2 3,410 (0.56) 722,257 (2.51) PCS 3 11,000 (1.81) 683,099 (2.37) Waivers 4 39,191 (6.46) 920,833 (3.20) Total HCBS ,601 (8.83) 2,326,189 (8.08) Total Medicaid LTC 72,400 (11.93) 3,790,372 (13.16) Expenditures $ (per capita) in Nursing facility $593,061,233 ($97.75) $45,835,646,786 ($159.17) ICF/MR $124,232,182 ($20.48) $11,761,206,072 ($40.84) Total Institutional $717,293,415 ($118.23) $57,596,852,858 ($200.01) Home Health $28,097,569 ($4.63) $3,445,549,127 ($11.96) PCS $245,940,905 ($40.54) $7,028,041,064 ($24.41) Waivers $592,076,506 ($97.59) $21,244,610,417 ($73.77) Total HCBS $866,114,980 ($142.76) $31,718,200,608 ($110.14) Total Medicaid LTC $1,583,408,395 ($260.98) $89,315,053,466 ($310.15) Sources: (1) CMS (2005a) (2) Kitchener, Ng and Harrington, UCSF Annual Survey Home Health (2004), (3) Kitchener, Ng and Harrington, UCSF Annual Survey PCS (2004), (4) Kitchener, Ng and Harrington, UCSF Annual 372 reports (2004), (5) Burwell et al (2005). 6

11 Washington residents were one-third less likely to use nursing facilities than the national average (3.09 per 1,000 population vs per 1,000 US population) and 98 percent less likely to use ICF/MRs (0.01 per 1,000 vs per 1,000). In 1992, the state Medicaid nursing home caseload was 17,710 and this was reduced to 14,500 in 1997, and it steadily declined to 13,400 in January 2003 (WA ADSA, 2004d). Washington residents are more likely to use a combination of home health services or HCBS waiver programs than participants nationally. Of the total number of Medicaid LTC participants in Washington, the majority (74.03 percent) were home health, personal care, or HCBS participants, percent were nursing facility residents and 0.09 percent were ICF/MR residents. Overall, the state spent more on combined HCBS ($866,114,980) than on institutional care ($717,293,415). Nursing facility residents received percent of all Medicaid LTC expenditures, despite constituting just over one quarter of all Medicaid LTC participants. The national average for ICF/MR expenditures per capita ($40) was more than double Washington s ($20), even though the state s ICF/MR expenditures per participant ($68,740) were nearly three-quarters the national average ($92,571) (Burwell et al., 2004). The percentage of Medicaid LTC dollars spent on HCBS (54.70 percent) was more than two thirds that spent nationally (30.6 percent). Washington spent more than one third the amount on Medicaid HCBS per participant than the national average ($14,622 vs. $10,881) despite the fact that Washington s HCBS waiver expenditures per participant were only about three-quarters of the national average (Burwell et al., 2004). This is primarily due to Washington s PCS expenditures per participant, which were 150 percent higher than the national average. Medicaid 1915(c) Waivers Washington was one of the first states to develop Medicaid 1915(c) HCBS waivers. The Washington State Division of Developmental Disabilities Community Alternatives Program (CAP) waiver was implemented in 1983 along with its Community Options Program Entry System (COPES) waiver for the aged and disabled. In 2004, Washington operated 7 Medicaid 1915(c) waivers, providing a range of population groups with HCBS. Table 5 describes these waiver programs. Table 5. Washington Medicaid 1915(c) HCBS Waivers in 2004 Waiver Community Options Program Entry System (COPES) Medically Needy Residential (MNRW) 390 Description This waiver allows persons with physical disabilities & those aged 18+ who meet the nursing facility level of care to remain living at home & in the community. Services offered under this waiver include: personal care, emergency response, assisted living & adult family home care. This waiver allows persons with physical disabilities & those aged 18+ who meet the nursing facility level of care to remain living at home & in the community. Services offered under this waiver include: adult family home, boarding home care, skilled nursing, specialized medical equipment, transportation, & client training. 7

12 Medically Needy In home Waiver (MNIW) 419 Basic 408 DD Basic Plus 409 DD Core 410 DD Community Protection DD This waiver allows persons with physical disabilities & those aged 18+ who meet the nursing facility level of care to remain living at home & in the community. Services offered under this waiver include: personal care, emergency response, skilled nursing, & home delivered meals, transportation, & home health aide. This waiver allows DD persons who live with family or in their own homes & meet the ICF/MR level of care to remain living at home & in the community. Services offered under this waiver include: personal care, respite, emergency assistance, & specialized medical equipment & supplies. This waiver allows DD persons who live with family or in another setting (including adult family home or adult residential care facility), meet the ICF/MR level of care, & who are at high risk of institutionalization to remain living at home & in the community. Services offered under this waiver include: all of the services offered under the Basic waiver as well as skilled nursing, adult foster care, & adult residential care. This waiver allows DD persons who require residential habilitation or live at home who meet the ICF/MR level of care, & who are at immediate risk of institutionalization to remain living at home & in the community. Services offered under this waiver include: residential habilitation, skilled nursing, behavior management & consultation, specialized medical equipment/supplies, & therapy. This waiver allows DD persons who live in or are moving to the community & meet the ICF/MR level of care & meet the 'community protection' criteria, to live in the community. The program is designed for those who are transitioning from a state hospital, prison or juvenile correction facility. Services offered under this waiver include: residential habilitation, skilled nursing, behavior management & consultation, specialized medical equipment/supplies, & therapy. Source: Kitchener, Ng, & Harrington (2005). Waiver Descriptions. Of the seven waivers, 3 are for adults age 18 and over with physical disabilities who meet the nursing facility level or care; two are for living at home, one for categorically needy participants who meet Medicaid criteria (COPES), and another for the medically needy who have higher incomes (Medically Needy In-Home waiver). The third waiver is for individuals living in residential settings which include: adult family homes, adult residential care (boarding care), enhanced adult residential care (has limited nursing services), and assisted living facilities. Four of the current waivers are for persons with MR/DD, which replaced one single waiver (CAP) in These are: (1) a basic waiver to live at home, (2) a basic plus waiver for those who meet the ICF/MR criteria and are at risk of institutionalization who need additional services, (3) a core waiver for those who need residential habilitation and are at immediate risk of institutionalization, and (4) those are transitioning from a state hospital, prison or juvenile correction facility and need services. Table 6 provides a description of participants and services provided in all Washington waivers. Table 6: Medicaid 1915(c) Participants, Expenditures, and Services Waiver name (identifier) Community Options Program Entry System (COPES) ( R4) Medically Needy In- Home (MNIH) Population served Aged/Physically disabled adults Aged/Physically disabled adults Participants Expenditure Services provided include: Personal care 30,128 $286,701,452 Personal care, emergency response, assisted living, Yes (2003) (2003) adult family home care. Not available Not available Personal care, emergency response, skilled nursing, home delivered meals, transportation, home health aide. Yes 8

13 Waiver name (identifier) Population served Participants Expenditure Services provided include: Personal care Medically Needy Aged/Physically 39 (2003) $19,084 Assisted living No Residential Waiver (MNRW) ( ) disabled adults (2003) Community DD 8,684 (2003) $244,151,977 Personal care, habilitation, respite, therapy, nursing, Yes Alternatives ( R2) (ended July 03 ) (2003) home modification and day healthcare Basic (0408) 2003 DD Not available $13,933,861 Personal care, respite, emergency assistance, and Yes (2004)* specialized medical equipment and supplies Basic Plus (0409) DD Not available $10,184,224 All services offered under the Basic waiver plus skilled Yes 2003 (2004)* nursing, adult foster care, adult residential care. Core (0410) 2003 DD Not available $89,184,936 (2004)* Residential habilitation, skilled nursing, behavior management & consultation, specialized medical equipment/supplies, therapy. Yes Community Protection (0411) 2003 DD Not available $15,025,830 (2004)* Residential habilitation, skilled nursing, behavior management & consultation, specialized medical equipment/supplies, therapy. Source: Kitchener, Ng and Harrington, UCSF Annual 372 reports (2004); * Figures from Burwell et al. (2005) as these are very recently introduced waivers. The largest Washington waiver is the COPES waiver which served over 30,000 people and total expenditure of $281,740,399 in A 1.1 percent growth cap was imposed on this waiver in the 2003 legislative session but has not been implemented because growth has stayed below this level. The waiver for DD (Community Alternatives) was approved for 11,746 slots, but it was closed in 2003 and was replaced by the four MR/DD waivers (Basic, Basic Plus, Core and Community Protection). All Washington waiver programs include personal care except for the Community Protection waiver which was designed for DD clients who are transitioning from a state hospital, a prison, or a juvenile correction facility, and the Medically Needy Residential waiver that provides assisted living services to adults age 18 and over with physical disabilities. Previously, individuals who were medically needy were not eligible for COPES and only considered for nursing home placement. DSHS requested legislation to authorize waiver services for medically needy and this led to the establishment of the Medically Needy In-Home waiver for the physically disabled. This change led to the settlement of the Townsend lawsuit (2004). Up to 200 clients can be served on the In-Home waiver and up to 600 people can be served on the Residential waiver. There is ongoing evaluation of the demand for these waiver services and while the Residential waiver is being renewed in 2005, there was less demand for the In-Home waiver due to the high amount that participants would have to pay toward the cost of their care (Washington Program Descriptions, 2005). A total of 51 people were reported as being on waiting lists for 3 of the Washington waivers in FY2004; the Basic, Basic Plus and Core waivers (USCF survey data, 2005). In 2005, state officials reported a waiting list of about 8,500 people for those with MR/DD (Interviews with state officials, 2005). A new waiver is being introduced to develop a 3-year pilot program (through September 2007) in two counties. This New Freedom (Cash and Counseling) Waiver will enable the No 9

14 provision of personal care (and other LTC services) to adults over 18 years with physical disabilities. Services are set to start in 2005 and targets are for 100 enrollees by September 2005, 400 by September 2006 and 750 by September The state was one of 11 recipients of the second round of Cash and Counseling infrastructure grants of $250,000 in 2004 from the Robert Wood Johnson Foundation (with CMS match of $250,000). They are starting to develop the procedures for this with two pilots. Personal Care Through Medicaid Waivers After the Washington State Plan PCS program, the second largest Medicaid program delivering personal care is the state s 1915(c) HCBS waivers. Table 7 shows that the number of people receiving personal care through HCBS waivers in Washington increased nearly 9 percent between 1999 (18,251) and 2002 (19,832), despite a decline between 2001 and State officials reported that the decline was primarily related to improved oversight and review of participants, and not related to a policy to reduce the number of participants (Interviews with state officials, 2005). Table 7: Washington Medicaid Personal Care in Waivers, % Change Participants Raw 18,251 20,438 20,703 19, % 5 Per 1, Rank % 5 population US ave. per 1,000 population % n/a Expenditures ($) Raw 121,720, ,793, ,566, ,279, % 4 CPI-adjusted 131,437, ,849, ,405, ,279, % 4 (2002) Per capita % 7 Per participant 6,669 7,721 8,673 9, % 28 US ave. per capita % n/a US ave. per participant 8,562 8,974 9,580 9, % n/a Source: Kitchener, Ng and Harrington, Survey of State Medicaid Personal Care Programs. Data includes Community Alternatives (ended 2003) and COPES waivers. Absolute waiver expenditures rose by nearly 50 percent in this same four year period. When adjusted for inflation, this increase is reduced to about 38 percent. Expenditures per participant increased by 37 percent between 1999 ($6,669) and 2002 ($9,141), while expenditures per capita rose 43 percent in that same time frame (from $21 to $30), even though they remained static between 2001 and Therefore, while more money was spent per participant in 2002 than before, less people received services through the HCBS waiver program. Personal Care Through the Older Americans Act 10

15 The federal Older Americans Act (OAA) is authorized until FY Title III of the Act enables states to provide services to support older people to remain independent in the community, including through providing personal care. Washington State s Unit on Aging is the Washington Aging and Disability Services Administration and is divided into 13 Area Agencies on Aging. The funds for the OAA allow for programs to provide personal care services. Table 8: Washington Personal Care in Older Americans Act Title III, % Change Participants Raw 1,788 1,647 1, % Per 1,000 population % Expenditures ($) Raw 135, , , , % Per capita % Per participant % CPI-adjusted (2002) 145, , , , % Source: Kitchener, Willmott, & Harrington (2004b), using Administration on Aging (2003) data In Washington, the number of people receiving personal care through Title III OAA funds continually decreased between 1999 and 2002, with the greatest decrease (31 percent) occurring between 2001 and (See Table 8) In contrast, expenditures continuously increased, with the largest increase (17 percent) occurring between 2001 and Expenditures per participant increased 188 percent between 1999 and 2002, with the largest increase (123 percent) occurring between 2001 and Other Personal Care Washington has had three state-only funded programs and of these, two (the Chore Services Program, Residential Care Program) provide PC. (See Table 9). Table 9: Other Sources of Personal Care in Washington State-only funded programs Title of Program Expenditure (year) Chore Services Program $2,800,000 (FY00) Residential Care Program $300,000 (FY00) Respite Care Program $3,700,941 (FY03) Source: Kitchener, Willmott & Harrington (2004a), (2004c) and (2004e). The Chore program was designed for individuals not eligible for the Medicaid PCS program. State officials reported that the program was being phased out because of budget 11

16 constraints but those individuals already in the program were being provided services (Interviews with state officials, 2005). In addition, Washington participates in the National Family Caregiver Support Program and received $2,580,579 in federal funding in 2003 from the Administration on Aging (Administration on Aging, 2005a). Since 2001, Washington has received a total of $2,813,000 in Systems Change Grants from CMS, comprising of a Real Choice Systems Change grant, a Nursing Facility Transition grant (2002) and a Money Follows the Person grant (2003). The Nursing Facility Transition grant supported transitions from psychiatric hospitals to the community and training and education for individuals with developmental disabilities. The Money Follows the Person grant was to enhance the ability to assess the needs of adults and children with DD. Other grants have included a Medicaid Infrastructure grant and a Department of Labor grant for employing people with disabilities (Fox-Grage et al., 2004). Washington also operates a Program of All-Inclusive Care for the Elderly (PACE) in King County. Strategic Planning Activity States have been encouraged by the Centers for Medicare and Medicaid Service (CMS) to develop Olmstead Plans. The federal Supreme Court Olmstead ruling suggested that states demonstrate compliance with the ADA integration mandate by producing formal plans for increasing community integration. In 2002, Washington completed a state Olmstead plan (WA DSHS, 2002) after a two year long planning process that involved a wide group of consumers, state officials, and other stakeholders. The planning process identified a number of actions that were needed and stated a need to be active in seeking external funding for new initiatives to address problems that were identified. The state has implemented programs aimed at addressing the institutional bias in longterm care. In 2002, Washington initiated the Personal Assistant Recruitment and Retention (PARR) program which has developed a statewide registry of personal assistants who are available for hire to people using personal assistants. Additionally, Washington has relocated a number of psychiatric patients from state hospitals to the community, reduced the number of people in nursing homes, and allocated funds to support people with developmental disabilities to succeed in the community (NCSL, 2003). Although Washington has been praised for its success in reducing the use of nursing home services for the elderly and disabled, the state has focused efforts on meeting the demand for HCBS for those with DD and mental illness (Gran et al., NCSL, 2003). Litigation Related to the Olmstead Decision There have been 6 Olmstead-related legal cases in Washington relating to community integration and Medicaid which have been brought and/or decided since 1999 (the date of the Supreme Court Olmstead decision). Four of these cases are closed or settled and two related to HCBS waivers remain open. There was also, however, an earlier case, decided in 1994, (Bosteder v. Soliz, No ) which is relevant to personal care. In this case, the State 12

17 Supreme Court held that the policy of refusing to provide Medicaid personal care to individuals with psychiatric disabilities violated the ADA Title II. This case was significant because it interpreted that the ADA not just prohibited the less favorable treatment of people with disabilities, but that it prohibits the less favorable treatment of people with one disability compared with people with a different type of disability (LaCheen, 2001). WASHINGTON MEDICAID STATE PLAN PCS Washington s Medicaid state plan provides for the optional personal care services (PCS) benefit. The distinctive features of this program are described in this section. Single Entry Administrative Program As noted above, the Washington state Medicaid PCS program is administered at the state level in the Home and Community Services (HCS) Division of the Aging and Disability Services Administration (ADSA) of the Department of Social and Health Services (DSHS). The PCS program is administered as a single entry program along with the 1915(c) waiver, nursing home, residential care, and other long term care programs. ADSA has 6 regions and 41 state field offices which operate as the single entry point. ADSA contracts with 13 local Area Agencies on Aging (AAA) to provide specialized senior information and assistance; case management of home care clients; nursing services for vulnerable adults; other community services such as family caregiver support, nutrition, transportation, home modification, and legal services; and training for in-home caregivers. The ADSA program has 700 field employees and 450 AAA employees under contract, and these are primarily social workers and nurses (WA State DSHS, ADSA, 2004d). Although 40 percent of the PCS clients are disabled and under age 65, state officials report there has not been a problem using the AAA for service delivery, even though the AAAs have historically served the older population. The Division of Developmental Disabilities (DDD) operates with a different structure. There are six regions but the program has a single entry system. The DDD program has 398 field employees and 44 employees in the headquarters office. All DDD employees are state workers and there are no contracts for the program. Program Participants and Expenditures Washington s Medicaid state plan for PCS showed an increase in both participants and expenditures between 2000 and 2002 as seen in Table

18 Table 10. Washington Medicaid State Plan PCS, % Change Rank out of 30 States in 2002 Participants Raw 6,514 7,208 11, % 10 Per 1, % 17 population US ave. per 1, % n/a Expenditures ($) Raw 39,500,000 51,600,000 83,200, % 13 CPI-adjusted (2002) 41,266,260 52,415,810 83,200, % 13 Per capita % 17 Per participant 6,064 7,159 7, % 12 US ave. per capita % n/a US ave. per participant 8,072 9,261 8, % n/a Source: Kitchener, Ng and Harrington, UCSF Annual Survey of Medicaid State Plan PC Programs, The number of participants in the Washington state plan PCS program increased 69 percent between 2000 and Total PCS expenditures increased by 111 percent between 2000 and 2002 ($39.5 million to $83.2 million) and expenditures per capita more than doubled in the same time frame ($6.68 to $13.71). Participants in the COPES waiver whose personal care needs could be met by the state plan program were shifted onto the state plan PCS program. Between 2000 and 2002, the state s PCS expenditures per participant increased by $1,500. Types of Clients Eligible The PCS program serves all types of clients with disabilities that meet the need and financial eligibility criteria. (See Table 11). This includes individuals who are aged and younger age groups, including individuals with mentally illness, brain injury, and drug abuse. The DD services program covers all individuals with DD needs. Table 11. Washington Medicaid State Plan PCS Clients Groups Served, Children Y Y Y MR/DD Y Y Y Elderly Y Y Y Mental Health Y Y Y Physically disabled Y Y Y Other Y Y Y Source: Kitchener, Ng and Harrington, UCSF Annual Survey of Medicaid State Plan PCS Programs,

19 Washington Medicaid State Plan PCS program delivers services to people who are categorically needy whereas the Medicaid waiver programs provide care for medically needy individuals. Types of Providers Washington gives clients a choice of using an agency provider or an independent provider. Table 12. Washington Medicaid State Plan PCS Enrolled Provider Entities, Medicare certified home health agencies Y Y Y Licensed home health & personal care agencies Y Y Y Independent providers (no agency affiliation) -- state Y Y Y pays providers directly Persons legally responsible for client (using state only N N N money) (spouses and parents of minor children) Other family members & friends, not legally responsible Y Y Y for client Facilities such as foster care/residential/assisted living Y Y Y Source: Kitchener, Ng and Harrington, UCSF Annual Survey of Medicaid State Plan PCS Programs, A number of entities can qualify to be service providers under Washington s State Plan PCS, including: (1) Medicare certified home health agencies, (2) licensed home health and personal care agencies, (3) independent providers with fiscal intermediary, (4) family members and friends who are not deemed to be legally responsible for the client (this category includes siblings and close relations but excludes spouses and legal guardians of minor children), and (5) facilities such as foster care, residential or assisted living. The state does not use Centers for Independent Living as providers. In 2004, the following numbers of providers by type were reported: 16,950 independent, 9,773 agency providers, and 5,713 in residential settings. For those individuals living at home, 64 percent had independent providers and 36 percent had agency providers in The percent of independent providers increased from 59 percent in 2000 (Interviews with state officials, 2005). Assessment Procedures As part of the Washington state plan PCS, state social workers and nurses in field offices conduct the assessments of clients and authorize the PC hours of care. (See Table 13). After the assessments are complete and care is authorized, the AAA is under contract to implement a plan of care for the aged and disabled and to provide case management and other services. 15

20 The state field offices of the DDD program conduct the assessments for the DD program. The same rules and assessment procedures are used for both the aged and disabled and the DD programs. Clients are eligible for the DDD program if they had a disability present at the age of 18 and the disability is expected to last throughout a person s lifetime. IQ is not the only measure of disability, and needs range from minimal supports to live independently to 24-hour intensive supports. The DDD program includes both children and adults. Table 13. Washington Medicaid State Plan PCS Need Assessment & Authorization, Non-physicians assess client s needs (e.g., nurses and Y Y Y social workers) Need assessment is based on a scoring system such as Y Y Y ADLs After assessment, non-physicians authorize State Plan Y Y Y PC Specific criteria used for the authorization decision Y Y Y State tracks unmet needs, that is, services (e.g., respite) or extra hours of care that are needed by clients Y Y Y Source: Kitchener, Ng and Harrington, UCSF Annual Survey of Medicaid State Plan PCS Programs, In 1995, a Joint Legislative Task Force Committee recommended that DSHS develop a more objective assessment tool that provided more consistent results across clients and settings. In 1997, the state had its PCS program audited by the Centers for Medicare and Medicaid Services and this resulted in $90 million in disallowed services (Interviews with state officials, 2005). This was the motivating factor for the state to establish its comprehensive assessment and information tracking system for clients. Building upon the assessment system established by Oregon, Washington designed its own assessment system. Assessment Tool In 2000, Washington State established the Comprehensive Assessment Reporting Evaluation (CARE) instrument (WA State DSHS ADSA, 2004a). This tool is used for all clients in the PCS program as well as those who are seeking waiver services, nursing home or residential care. The tool was designed and tested for reliability and then limited to a payment algorithm. Deloitte Consulting developed the software program in 2002 and this was implemented in The CARE tool is an automated, client-centered assessment that is compatible with the congressionally mandated Minimum Data Set (MDS)/ Resident Assessment Instrument (RAI) used for nursing homes. The CARE tool goes beyond the MDS by adding new elements and much greater detail. The CARE tool is comprehensive in covering functional status problems, and measures activities of daily living, skilled nursing, medical treatment and/or rehabilitation needs, cognitive functioning, and other aspects of care needs. The tool is used for data collection, decision making, development of a care plan, implementation of the plan, and evaluation of the 16

21 plan goals, interventions, and client outcomes. The tool is required for initial assessment, annual reassessment, and for any significant changes in status. It is used to include all authorizations for services and determines a set of hours of services authorized. The tool is also used for referrals. It takes approximately 3 hours to conduct the initial assessment using the CARE tool (WA State DSHS ADSA, 2004a,c). The system has structured text but also room for notes by the assessor. The assessments are entered into a laptop computer. The data are then updated so that changes in client needs and services authorized over time can be tracked. The database also allows the assessor to determine if a client is already getting services. All clients must be reauthorized on an annual basis. The CARE assessment determines the hours of PCS authorized using 14 different levels. The maximum hours are 420 per month, but additional hours can be authorized if necessary. The billing for hours of care by providers is a separate system. Need Criteria Generally, the need criteria for PCS require an individual to have limitations in 3 or more ADLs including cuing or supervision requirements in order to receive services. In the past, the criteria were need for help with 1 of 10 tasks but this was changed. In 2004, one of the components of the CARE assessment was changed from 1 unmet need to 1 substantial unmet need as a means of restricting access to personal assistance services. Unmet need is monitored through the CARE assessment (WA State DSHS ADSA, 2004b). The criteria are grouped into four broad categories that are not ranked: clinically complex, mood and behavior, cognitive performance, and activities of daily living. Clinically complex include diseases and conditions such as: diabetes, emphysema, Parkinson s disease, pressure ulcers, quadriplegia, rheumatoid arthritis, incontinence, swallowing problem, edema, pain, dialysis, nutritional support, hospice care, injections, and other nursing needs. Mood and behavior problems include conditions such as: assaultive, combative, delusions, depression, hallucinations, repetitive complaints, sexual acting out, spitting, wanders, yelling, unsafe smoking and others. Cognitive performance includes: comatose, decision making problems, able to be understood, memory problems, and eating problems Activities of daily living score range from 2 to 28 and these include: personal hygiene, bed mobility, transfers, eating, toilet use, dressing, locomotion in room, locomotion outside room, and walk in room. Each area is given a score from: 0 for independent, 1 for supervision, 2 for limited assistance, 3 for extensive assistance, 4 for total dependence, 4 did not occur because no provider, 4 did not occur because client not able, and 0 for client declined. For locomotion, only the highest score for the three categories is used. 17