Independent Living Centers: Experienced Local Partners for Medicaid Home and Community-Based Services

Transcription

1 The Institute for Health, Health Care Policy and Aging Research DISCUSSION BRIEF: Independent Living Centers: Experienced Local Partners for Medicaid Home and Community-Based Services Roger Auerbach Henry Claypool June

2 This document was prepared by: Roger Auerbach of Auerbach Consulting, Inc., available at: and Henry Claypool, Disability Policy Consultant, available at: Prepared for: Leslie Hendrickson Robert L. Mollica The Community Living Exchange at Rutgers/NASHP provides technical assistance to the Real Choice Systems Change grantees funded by the Centers for Medicare & Medicaid Services. We collaborate with multiple technical assistance partners, including ILRU, Muskie School of Public Service, National Disability Institute, Auerbach Consulting Inc., and many others around the nation. Rutgers Center for State Health Policy 55 Commercial Avenue, 3 rd Floor New Brunswick, NJ Voice: Fax: Website: This document was developed under Grant No. 11-P-92015/2-01 from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. However, these contents do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not assume endorsement by the Federal government. Please include this disclaimer whenever copying or using all or any of this document in dissemination activities. 2

3 Table of Contents SUMMARY.4 BACKGROUND... 7 GROWTH OF HOME AND COMMUNITY-BASED SERVICES (HCBS)... 8 INTRODUCTION... 8 FEDERAL FUNDING FOR LONG-TERM CARE SYSTEMS CHANGE... 9 CIL INVOLVEMENT IN SYSTEMS CHANGE GRANT ACTIVITY HISTORY OF INDEPENDENT LIVING THE 1978 AMENDMENTS TO THE REHABILITATION ACT OF COMMUNITY LIVING SERVICES FUNDED BY MEDICAID CASE MANAGEMENT/SUPPORT COORDINATION PERSONAL ASSISTANCE SERVICES NURSING FACILITY TRANSITION SERVICES EQUIPMENT AND HOME MODIFICATION FUTURE ROLES IN COMMUNITY LIVING SERVICES CONCLUSION APPENDIX A CMS REAL CHOICE SYSTEMS CHANGE GRANTS ( ) APPENDIX B PROFILES OF CENTERS INTERVIEWED Arizona Bridge to Independent Living (ABIL)...24 Alpha One...25 Atlantis 26 Center for Disability Rights...27 Endependence Center...28 Metropolitan Center for Independent Living (MCIL)...30 Paraquad...31 Topeka Independent Living Resource Center, Inc REFERENCES

4 Summary Centers for Independent Living (CILs) have been providing important services to individuals with disabilities since the 1970s. Their services have always focused on education and skills training to support individual independence. These services have included supports for living at home and working and socializing in communities. State Medicaid programs across the country have acknowledged these important services as they have worked to create greater home and community-based service (HCBS) opportunities and have contracted with CILs to provide Medicaid-funded services. This paper examines four important HCBS provided by CILs and funded by Medicaid: case management/support coordination; personal assistance services; nursing facility transition services; and equipment and home modification. State Medicaid agencies have contracted with CILs because they have a rich understanding of the community living infrastructure used by individuals with significant personal assistance needs. CILs provide a unique understanding of the strengths and weakness of the current HCBS system and help Medicaid agencies build more effective services for enrollees with long term services needs. This relationship also creates an environment for information exchange and strengthens sometimes strained relationships with advocacy organizations. State governments across the country continue their work developing home and community-based long-term care services (HCBS) as alternatives to institutional care for individuals with disabilities of all ages. While leading states initiated their own state-funded programs earlier, opportunities for greater development began with a 1981 amendment to Medicaid law allowing states to request federal waivers to substitute HCBS for mandatory nursing facility services. 1 The Section 1915 (c) waiver authority gave states a major option in responding to the demand that long-term care services be delivered somewhere other than in a nursing facility. States applied for and received HCBS waivers, but spending on HCBS was not even 10% of total Medicaid expenditures by The early 1990s brought growth in the amount of Medicaid spending on HCBS. This increase was certainly due, in part, to demand for cost-effective services due to state revenue issues. By the year 2000, over 28% of Medicaid LTC spending was for HCBS. In 1999, the United States Supreme Court ruling in the Olmstead case created continued incentive for states to move in the direction of creating HCBS for all individuals with disabilities. States used this decision to further enhance their development of HCBS. The most recent expenditure reports publicly available show Medicaid HCBS spending near 40% of total Medicaid LTC spending. The federal government, led by the Centers for Medicare & Medicaid Services (CMS), began awarding Real Choice Systems Change grants to states in 2001 to develop the necessary infrastructure to support integrated community living for individuals with disabilities of all ages. There was a clear message from the federal government that it wanted to assist states in complying with the mandates of the Americans with Disabilities 1 These waivers were called 1915(c) waivers after the section of the amended Social Security Act. 4

5 Act. CMS grants have continued to the present and have totaled approximately $280 million. In addition to working with the U.S. Administration on Aging to create 43 Aging and Disability Resource Centers for consolidated access to long-term care services, CMS is currently funding a Money Follows the Person Rebalancing Demonstration in the amount of $1.5 billion to assist states to move people from institutional to community living and implement long-term care systems changes. Centers for Independent Living (Centers) have been active in supporting and leading systems change activities since the first Center for Independent Living was founded in Berkeley, California in The history of independent living is closely tied to other civil rights struggles, as individuals with disabilities were discriminated against in crucial areas including education, employment, housing, and transportation. Individuals with disabilities did not want to be cared for in institutions, but wanted to live with others in community settings and receive services and supports of their choosing as others did. The early work of Centers focused on securing supports for community living, as Centers continue to do today. In 1978, Congress passed amendments to the Rehabilitation Act of 1973, which included a new Title on Comprehensive Services for Independent Living. The Title authorized grants to states to provide comprehensive independent living services and to provide for the establishment and operation of independent living centers. To be funded, Centers must be consumercontrolled, community-based, cross-disability, nonresidential, private, nonprofit agencies that are designed and operated within local communities by individuals with disabilities. The purpose of their programs, according to the federal funding entity Rehabilitation Services Administration (RSA), is to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities and to integrate these individuals into the mainstream of American society. Even though the amendments defined these independent living services broadly, today the Rehabilitation Services Administration requires Centers to at least provide the following four (4) core services: information and referral; independent living skills training; peer counseling; and, individual and systems advocacy Centers have developed targeted programs within these four core service areas. Independent Living Skills Training can include: finding affordable, accessible housing; finding the right mobility and other assistive devices; food preparation; money management; job preparation; consumer-direction training; and utilizing public transportation. Peer Counseling can include: individual support; group counseling; benefits counseling for income, housing, employment, and food stamps. Individual and Systems Advocacy can include: advocacy for an individual with other entities for appropriate services and service delivery; and systems advocacy in doing community outreach and education. Information and Referral usually provides assistance with whatever needs may be important for successful independent living. Centers provide valuable services that have built upon the core and are providing necessary community living services funded by Medicaid. Centers provide: 5

6 Case management/support coordination services for both Medicaid state plan and waiver services and for state-funded programs that include initial point of entry, functional and person-centered assessments, developing plans of care, arranging for services, ensuring service delivery, monitoring participant health and welfare, revising plans of care as needed, and annual reassessments. Centers deliver these services to a wide range of populations. Consumer-directed personal assistance services (PAS) including training consumers as managers and program participants, assisting in recruitment and hiring, providing payroll and tax reporting, providing ongoing case management, and ensuring quality. Centers are also direct service providers and employ personal care attendants to deliver PAS. Nursing facility transition services that include identification of individuals who want to move back to the community, training on independent living skills, locating housing, arranging for services, assisting with the move, and counseling after the move back to the community. Only two Centers interviewed were paid by Medicaid; one expects Medicaid payment shortly, and one has private funding. Equipment and home modification services that include selling and repairing durable medical equipment and mobility devices, home modification programs where contractors build the modifications, and building and contracting for ramps. Centers are Medicaid vendors for equipment and provide home modification services for clients on Medicaid waivers. Centers for Independent Living continue to demonstrate value in assisting individuals with disabilities of all ages to gain needed skills and obtain needed supports to live independently in integrated community settings. Centers have proven to be effective partners in helping government comply with the Americans with Disabilities Act and save money by supporting individuals with disabilities to live in less-costly community settings. The services provided have evolved from the vital core training and support services into more direct services, often funded by Medicaid, such as support coordination, personal assistance, nursing facility transition and home modification. More Centers could provide these services in more locations throughout the country and Medicaid could help pay for these crucial services that keep government in compliance with the law and are cost-effective. In addition to the services discussed in this paper, there may be other roles that Centers may develop in the future with the similar goals of supporting individuals to live independently in integrated community setting. These services, which could be financed at least in part by Medicaid, could be: Intensive community integration services (training and supports brokerage) after inpatient rehabilitation and nursing facility discharges, preventing re-admission to institutional care; Chronic care education and management; Options counseling for primary, acute, and long-term care services; Assistive technology counseling and sales, aimed at enhancing independence and minimizing costs; and, Telemedicine equipment to avoid the unnecessary expense of medical appointments. 6

7 Centers for Independent Living provide services that are good investments for the health and well-being of individuals and deliver current and future cost savings for government. State and federal health policy decision makers and Medicaid officials should look for additional ways to use existing services and seek new ways to support a partnership with these valuable community-based organizations. Background State governments across the country continue work developing home and communitybased long-term care services (HCBS) as alternatives to institutional care for individuals with disabilities of all ages. Regardless of whether the motivation is responsiveness to consumer preferences, cost containment, or compliance with federal law, they are focused on providing cost-effective, community-integrated services and supports. To be successful, states have employed mechanisms to support HCBS options: single-entry point systems to deliver information and referral to community services; rapid eligibility determination for publiclysupported long-term care (LTC) programs; LTC options counseling delivered in hospitals and nursing facilities; flexible funding to support consumer choice of services; consumer-directed and controlled services; and, quality assurance and improvement systems. Developing reform and restructuring plans has been a challenge. State and local governments each have entities responsible for delivering services to different populations of individuals with disabilities. Individuals with disabilities, their advocacy groups, and their families must be included as the customers of the services. Services providers need to be involved to contribute knowledge of service development and delivery and because they are wary of changes that affect their businesses. Getting agreement from these diverse parties on goals, programs, and priorities has been extremely difficult, and it may take years to complete the reform process. Developing financing for these plans adds another set of complicated negotiations and is likely to bring new participants to the table, such as state budget staff, with new variables to consider. Home and community-based program and services development not only need excellent planning and proper financing, but also need diverse groups and individuals to design, implement, and deliver the required services. At the state and local levels, there are entities that plan, develop, and fund needed community services. These entities represent Medicaid, aging, intellectual and developmental disabilities, physical disabilities, mental health, employment, housing, transportation programs, and potentially more. Although states have developed excellent programs over the last forty years with stateonly funding, Medicaid is still by far the largest financier of home and community-based services. Since the 1981 law change allowing funding for HCBS waivers, Medicaid financing has been at the core of new services development. Because Medicaid did not allow all populations with disabilities to be served within the same waiver program, service development grew separately with specific focus on the needs of each group, not the groups as a whole. Older adults services and those for individuals with physical disabilities were allowed to be combined under one Medicaid waiver, but were not allowed to be integrated with services for individuals with intellectual and developmental disabilities. States have chosen varied paths in combining populations for services and program development and financing. 7

8 State governments have also chosen varied methods to administer HCBS programs both at the state and local level. States have delegated total responsibility to the state Medicaid agency or to a combination of the Medicaid agency and an Aging or Disability agency. At the local level, states have delegated the responsibility to determine eligibility and manage programs to counties, local state offices, area agencies on aging (AAAs), and other public entities. States have also relied on nonprofit and for-profit entities to deliver needed services. Centers for Independent Living (CILs) have often been overlooked as potential managers and providers of home and community-based services. The historical reasons why CILs were not initially part of the management and delivery of HCBS include: federal funding from a non- Health and Human Services agency; linkage with a state entity focused on employment; Medicaid reluctance to contract with local non-profit agencies; CILs focus on core services for which they were funded; and CILs philosophical conflict between advocacy and provider roles. This paper demonstrates that Centers for Independent Living all over the country are managing and delivering both Medicaid and state-funded HCBS programs, in addition to delivering valuable independent living services. Although the authors chose to focus only on four service areas, which are often funded by Medicaid and state government, Centers for Independent Living are a rich resource for supporting all individuals with disabilities to live independently in integrated community settings. Introduction Growth of Home and Community-Based Services (HCBS) The cost and financing of long-term care for individuals with disabilities of all ages has recently become an even more important public policy issue. As the baby boom generation continues to age and the challenges of funding Medicare and Social Security into the future presents significant concerns, policy makers are focusing on how to provide long-term services and supports, and they are seeking to determine who will pay for them. Recent data show Medicaid is paying for 49% of the country s long-term care expenditures and Medicare is paying for 19%. 2 Data also show that the number of people who will need long-term care will grow by about 30% from , while the working-age population will grow by only 0.3% per year between the years In addition, there will be markedly fewer adult children per parent. 3 Nursing facility services have been the only required Medicaid long-term care service since Medicaid was enacted. Home health services were made mandatory in 1970 for those who require a nursing facility level of care and are now regularly counted as community-based longterm services. However, by 1980, almost all long-term care services paid by Medicaid were still being delivered in nursing facilities. 4 2 Komisar, H. & Thompson, L. (2007). 3 Friedland, R. (2004). 4 ASPE (2000). 8

9 In 1981, Congress passed an amendment to the Medicaid law that allowed states to submit requests to the Secretary of Health and Human Services to waive the requirement for nursing facility services and substitute alternative home and community-based services. This amendment and waiver, referred to as a Section 1915 (c) waiver, gave states the opportunity to respond to the demand for long-term care services received somewhere other than in a nursing facility. States applied for and received home and community-based services (HCBS) waivers, but spending on HCBS was not even 10% of total Medicaid expenditures by The early 1990s brought much larger growth in the amount of Medicaid spending on HCBS. This increase was certainly due, in part, to demand for cost-effective services due to declining state revenues. However, there was also increased consumer demand for community alternatives to institutional care and increased demand that public intermediate care facilities for people with mental retardation (ICFs/MR) be downsized or closed. By 1995, over 19% of Medicaid LTC dollars were being spent on HCBS. This trend continued throughout the late 1990s and by the year 2000, over 28% of Medicaid LTC spending was for HCBS. 6 In 1999, the United State Supreme Court ruling in the Olmstead case created continued incentive for states to move in the direction of creating HCBS for all individuals with disabilities. A concise statement of the decision is that individuals with disabilities who are covered under the Americans with Disabilities Act cannot be institutionalized if they want, and are able, to receive appropriate support services in a community setting, subject to the reasonable financial limitations of a state. States used this decision to further enhance development of HCBS. States were also sued after this decision and had to increase services because of court decisions or lawsuit settlements. The most recent expenditure reports publicly available show Medicaid HCBS spending at near 40% of total Medicaid LTC spending. 7 Federal Funding for Long-Term Care Systems Change In 2001, the Centers for Medicare & Medicaid Services (CMS) began awarding Real Choice Systems Change grants to states to develop the infrastructure needed to support integrated community living for individuals with disabilities of all ages. These grants were a part of President Bush s New Freedom Initiative and they were viewed as a direct response to the 1999 Olmstead decision. There was a clear message from the federal government that it wanted to assist states in complying with the mandates of the Americans with Disabilities Act. CMS grants to states have continued to the present. A recent announcement from CMS states that Real Choice grants, totaling approximately $280 million, have been awarded to 50 states, Guam, the Northern Mariana Islands, and the District of Columbia. 8 Listed in Appendix A are the grant type and number of grants awarded since Beginning in 2003, CMS and the U.S. Administration on Aging co-sponsored an initiative to create Aging and Disability Resource Centers for consolidated access to long-term care services for both public and private pay individuals. That initiative has funded 43 states, territories, and the D.C. 5 ASPE (2000). 6 Burwell (2004). 7 Burwell (2007). 8 CMS Compendium (2007). 9

10 Finally, CMS is currently funding a Money Follows the Person Rebalancing Demonstration to which it has made a five-year, $1.5 billion commitment to 31 states to assist people to move from institutional to community living and implement a variety of other longterm care systems changes. CIL Involvement in Systems Change Grant Activity Centers have been actively involved in the Systems Change grant activities funded by CMS. In the first two rounds of grants, CMS directly grant-funded Centers to implement Nursing Facility Transition programs. For example, of the 16 grants issued in 2002, five went to centers for independent living. 9 Centers were also active in working with state agencies on community-integrated personal assistance services and supports, Independence Plus initiatives, Money Follows the Person and other rebalancing initiatives, Aging and Disability Resource Centers, and systems transformation grants. Because independent living for individuals with disabilities of all ages has always been at the core of their mission, it was natural for Centers to become partners in these systems change community living initiatives. History of Independent Living Understanding the history of the independent living movement helps one appreciate the evolution of Centers for Independent Living. Although there is not much written about the history of the disability rights movement, below are important factors to consider. 10 The history of independent living is closely tied to the civil rights struggles of African Americans during the 1950s, 1960s, and 1970 s. Individuals with disabilities were being discriminated against in crucial areas, including education, employment, housing, and transportation. This discrimination was often based on erroneous stereotypes that the disability rights movement worked to break. One major stereotype was that individuals with disabilities were not capable of living rich lives integrated with people without disabilities and that the best place for their care was in an institution. Individuals with disabilities argued that they did not need a medical system that continually segregated them and tried to fix them; they needed to live with others in community settings and receive services and supports of their choosing as others did. The first Center for Independent Living was founded in Berkeley, California by Ed Roberts and others in Ed Roberts is considered to be the father of independent living. The new Center, although it started as a modest apartment, had a clear philosophy and goals: People with disabilities know best how to meet the needs of others with disabilities; Comprehensive programs with a wide variety of services most effectively meet the needs of people with disabilities; and, The strongest and most vibrant communities are those that include and embrace all people. 9 See 10 The authors thank Gina McDonald and Mike Oxford for their work, from which most of this is summarized. See McDonald, G. & Oxford, M. (1995). 10

11 The Center became a support network for people with disabilities, giving people the knowledge and tools to assert their civil rights. Advocacy was central to this work. One of their first victories was the establishment of curb cuts in the City of Berkeley. In 1974, Wade Blank founded the Atlantis Community in Denver, a model for community-based, consumer-controlled independent living. Blank had worked in a nursing facility and tried to improve the quality of life for the younger residents by seeking their inclusion in community activities. These efforts were clearly at odds with the prevailing philosophy of the time that individuals with disabilities needed to be cared for in nursing facilities and other institutional settings. One of the first services provided by the Atlantis Community was personal assistance services that were primarily under the control of the consumer within a community setting. Among the first consumers were the young residents who moved from the nursing facility with Blank s help, after he was fired by the facility. The Atlantis Community still provides personal assistance services and home health services (see below). Atlantis also realized that access to public transportation was a necessity if people were to live independently in the community, and in 1978 twenty disabled activists held a public transit bus hostage in demanding accessibility. That was the year that the American Disabled for Accessible Transportation (ADAPT) was founded, and disability advocates across the country were fighting for access to public transit. However, it wasn t until 1990, 20 years after a federal law was passed mandating lifts on new buses, that federal regulations were issued implementing the law. After the passage of the Americans with Disabilities Act in 1990, ADAPT shifted its mission and changed its name to the American Disabled for Attendant Programs Today, fighting for a national system of community-based personal assistance services and the end to segregating individuals with disabilities in institutions. The 1978 Amendments to the Rehabilitation Act of 1973 In 1978, Congress passed amendments to the Rehabilitation Act of 1973 that included a new Title on Comprehensive Services for Independent Living. The Title authorized grants to states to provide comprehensive independent living services and to provide for the establishment and operation of independent living centers. To be funded, Centers must be consumercontrolled, community-based, cross-disability, nonresidential, private, nonprofit agencies that are designed and operated within local communities by individuals with disabilities. The purpose of their programs, according to the federal funding entity, the Rehabilitation Services Administration (RSA), is to maximize the leadership, empowerment, independence, and productivity of individuals with disabilities and to integrate these individuals into the mainstream of American society. Even though the amendments defined these independent living services broadly, today the Rehabilitation Services Administration (RSA) requires Centers to at least provide the following four (4) core services: information and referral; independent living skills training; peer counseling; and, individual and systems advocacy. 11

12 Centers have developed targeted programs within these four core service areas: Independent Living Skills Training can include: finding affordable, accessible housing; finding the right mobility and other assistive devices; food preparation; money management; job preparation; consumer-direction training; and, utilizing public transportation. Peer Counseling can include: individual support; group counseling; and, benefits counseling for income, housing, employment, and food stamps. Individual and Systems Advocacy can include: advocacy for an individual with other entities for appropriate services and service delivery; and, systems advocacy in doing community outreach and education. Information and Referral usually provides assistance with whatever needs may be important for successful independent living. Centers provide valuable services that have built upon the core. Centers have adopted nursing facility transition services as a core service and that service promises to be added to the core once the Rehabilitation Act is reauthorized. Centers are involved with housing services, whether helping to find housing, modify housing, or building ramps. They work with transportation issues, whether it is to facilitate vehicle purchases or modifications, selling new or used mobility devices, or advocating for better accessibility in public transit. Centers are also actively working to ensure an adequate supply of qualified personal care attendants and training consumers on how to recruit and direct their attendants. If there is a need in their community for a service for individuals with disabilities, Centers usually find a way to deliver that service, either by doing it themselves or finding reputable service providers. Below is a description of the major Medicaid-funded services that Centers provide in addition to the core services. These services are a logical extension of those already provided, which support individuals with disabilities to live independently in integrated community settings as required by law. Community Living Services Funded by Medicaid As stated above, Centers have developed additional services that go beyond the described core functions in supporting independent living for individuals with disabilities. These services led to the development or advancement of Medicaid programs for individuals with disabilities, like consumer-directed personal assistance services. Centers for Independent Living have been providing federally funded services for individuals with disabilities since 1978, even though services were provided before then. States began using Medicaid waivers to provide HCBS in Although there were and currently are strict criteria to receive and maintain approval of these waivers, states have employed them to provide an increasing amount of long-term services and supports to individuals with disabilities of all ages. Centers have been providing Medicaid-funded community living services for years and have contributed to the movement for home and community-based services. Four service areas were chosen to illustrate the type of work that is being done by Centers all over 12

13 the country: case management/support coordination; personal assistance services; nursing facility transition services; and, equipment and home modification. Listed in Appendix B are the Centers interviewed for this report along with a profile for each Center based on the four service areas of focus. Case Management/Support Coordination The Centers interviewed provide traditional case management services, such as arranging for services, monitoring service delivery, and supporting consumers to receive the services they need. They provide these services within HCBS Waiver programs and within the personal assistance services programs described below. 11 The Topeka Independent Living Resource Center, Inc. delivers a service, under the Medicaid Physical Disabilities Waiver, called independent living counseling. The goal is to foster and maximize a consumer s independence through his/her individual strengths by providing accurate information regarding the available choices. Responsibilities include: Serving as a point of access for Medicaid services, including making necessary referrals, providing information on covered services, and assistance with completing the Medicaid application; Determining functional eligibility by completing the assessment process including conducting in-home visits and completing the Uniform Assessment Instrument, annual reassessments, and assessments needed when there is a change in condition or living condition that leads to a change in the plan of care; Developing the consumer s Plan of Care and updating as needed including assuring that all other options have been considered before the waiver becomes the payer, assuring that the consumer s choice of providers is considered, educating the consumer on the difference between needed and wanted services, and ensuring that the plan of care is changed due to an increase or decrease in the need for services; Ensuring that the consumer s Plan of Care is cost-effective and meets health and welfare needs including evaluating what other members of the household can do as opposed to waiver services, assuring that waiver services are not completed for other household members, and looking for attendants that can perform more than one task at a given visit; Ensuring that consumers have full and unbiased access to a variety of services and service providers to meet their specific needs including educating consumers about self-direction and the choices of payroll agents and independent living counseling agencies; Advocating for consumers by arranging for services with individuals, businesses, and agencies for the best available service within limited resources; Participating in the quality assurance process including communicating with the consumer to assure that services in the Plan of Care are being provided, monitoring attendant hours to determine if changes need to be made, and providing information 11 The authors did not analyze the impact of the recent CMS case management regulations (March 2008) on the provision of these services. 13

14 for annual reviews; and, Documenting including maintaining a case file on all consumers, documenting all contacts with the consumer, family members, legal representatives and service providers, and documenting all billable hours and information regarding changes in service providers. 12 The Topeka Independent Living Resource Center served about 700 people in this Waiver as of February The Center for Disability Rights (CDR) in Rochester, N.Y. provides case management services to individuals in two different Medicaid HCBS Waivers: Traumatic Brain Injury and Mental Retardation/Developmental Disability. CDR case managers gather information and develop goals with waiver participants, develop an Individualized Service Plan, and oversee the Individualized Service Environment. The case manager acts as a liaison between the participant and the service providers to ensure that the individual s goals, preferences, and needs are followed to the greatest extent possible. Case managers maintain ongoing contact with participants and ensure that service plans are adjusted if needs change. CDR maintains a 24/7 emergency contact capability. As of February 2008, CDR served 133 individuals in the two waivers. Alpha One, an independent living center with two offices in Maine, provides case management and skills training to establish and maintain consumer-directed personal assistance services for three distinct programs in the state of Maine: Medicaid Medical Physically Disabled Waiver Program Medicaid Consumer-Directed Assistance Services Program (optional state plan service) Home Based Care Physically Disabled Program (state-funded) Alpha One has been involved with the state-funded Home Based Care Program since its inception in 1979 and has provided services in both Medicaid programs since they began. As of February 2008, Alpha One served about 515 individuals in the Medicaid programs and 110 in the state-funded program. The Endependence Center, an independent living center in South Hampton Roads, Virginia, has provided support coordination to individuals in the Medicaid Individual and Family Developmental Disabilities Support Waiver since The support coordinator is responsible for developing a plan of care with the individual and family that includes an estimated annual cost for services. After Medicaid approves the plan of care, the support coordinator arranges for the services from providers selected by the consumer. Services must begin within 60 days, and support coordinators are responsible for ensuring that services are delivered in accordance with the plan of care. Support coordinators are responsible for a face-to-face meeting with Waiver participants at least every three months and are responsible for completing an annual reassessment. As of March 2008, the Endpendence Center was serving 102 individuals in this Waiver and another 37 Medicaid enrollees on the Waiver waiting list. 12 Kansas HCBS Physically Disabled Waiver Policies and Procedures,

15 Paraquad, an independent living center in St. Louis, Missouri, provides case management services for about 66 people in the Medicaid Independent Living Waiver, as of March It has been providing these services for years, beginning when the services were being provided under a state-funded program. Summary of Case Management/Support Coordination Services Centers for Independent Living provide case management/support coordination functions for both Medicaid state plan and waiver services, and for state-funded programs. Services range from being the initial point of entry, administering functional and personcentered assessments, developing plans of care which meet service needs and cost controls, arranging for services, ensuring service delivery, monitoring participant health and welfare, revising plans of care as needed, and conducting annual reassessments. Centers serve individuals with disabilities including: individuals age 6 and above with a developmental disability and their families; individuals with HIV/AIDS; individuals of all ages with physical disabilities; older adults needing personal care and those with a nursing facility level of care; individuals with traumatic brain injury; and, individuals with mental retardation/developmental disability. Personal Assistance Services Centers are working with Medicaid agencies to deliver services that support individuals who need personal assistance with activities of daily living and instrumental activities of daily living. State Medicaid agencies have recognized the unique skills of Centers and have chosen them to perform this work. All of the Centers interviewed for this paper are involved in personal assistance services (PAS). They work with consumers on consumer-directed PAS and directly deliver PAS through their own agencies. Below are the functions that Centers perform in the PAS programs in their states. Training Consumers and Families on Managing Personal Care Attendants (PCAs) and Complying with Program Requirements Alpha One, the Center for Disability Rights, the Endependence Center, the Metropolitan Center for Independent Living in Minneapolis, Paraquad, and the Topeka Independent Living Resource Center all train consumers on how to recruit, employ, and supervise an attendant as part of a Medicaid consumer-directed PAS program. They also train consumers on how to fill out and submit the required timesheets and other program forms, and where to send them. Recruiting and Hiring Personal Care Attendants All of the Centers referenced above in the training function also assist consumers in recruiting and hiring personal care attendants, if consumers want their assistance. Alpha One maintains an internet-based PCA registry. The Center for Disability Rights maintains a telephone voice mail system to help match consumers with workers and also maintains a referral list. Paraquad maintains a registry with PCAs who have been screened with a criminal background check. Topeka Independent Living Resource Center also maintains a registry and ensures that criminal background checks are conducted. 15

16 Ongoing Case Management/Support Coordination Centers monitor the health and welfare of participants in consumer-directed PAS. Alpha One meets face-to-face with consumers at least every four months and likely more frequently, during an individual s first six months in the program. The Center for Disability Rights makes at least quarterly visits with all participants. People who require additional attention are visited as often as needed. The Endependence Center visits the participant twice in the first 90 days and at least twice a year thereafter, but can always be called for assistance. Paraquad contacts participants on a monthly basis to provide ongoing monitoring of service delivery. The Endependence Center provides training and service facilitation in three (3) consumer-directed Waivers and served 221 participants as of March Payroll Services and Tax Reporting Centers involved in consumer-directed PAS provide PCA payroll and tax reporting for consumers, including as a designated employer-of-record for the program participant. In 1989, Alpha One created a wholly owned subsidiary, Attendant Services, Inc., to provide payroll services and tax reporting for the participants in three separate state programs. The Center for Disability Rights serves as an employer-of-record, responsible for maintaining personnel and payroll records, billing Medicaid, and completing tax reports. Paraquad verifies the accuracy of timesheets and ensures that employment and other taxes are paid in a timely manner. The Topeka Independent Living Resource Center also provides payroll services and tax reporting for participants. Number of Participants Served (February 2008) Alpha One people in three programs Center for Disability Rights - 411, with 65 additional in process Paraquad people in one program Topeka Independent Living Resource Center in four programs Personal Care Agencies Centers have organized to be providers of PAS, employing their own PCAs. The Arizona Bridge to Independent Living (ABIL), a Center headquartered in Phoenix, recruits, screens, trains, and employs over 1,500 PCAs in Maricopa County. It contracts with four health plans to provide PCA services for older adults and individuals with physical disabilities served by the Medicaid Arizona Long-Term Care System. It also provides services to Native Americans living outside of a reservation that are Medicaidenrolled and receiving services through a Native American community health center. In addition, it serves individuals with a developmental disability who qualify for long-term services under Arizona s Division of Developmental Disabilities. ABIL monitors the health and welfare of the people it serves through field representatives in three offices who do home visits with clients, develop and review care plans, and ensure quality service delivery. 16

17 The Metropolitan Center for Independent Living (MCIL) employed about 220 PCAs as of February 2008, serving about 100 Medicaid-enrolled consumers. MCIL offers consumer-directed services to those who want them and offers consumers the opportunity to hire, set wages, train, schedule, and supervise their PCAs. MCIL staff is available to assist consumers with any of these activities. MCIL will work with a consumer to negotiate fair and competitive wages and facilitates recruitment, hiring, and screening for consumers who desire those services. It coordinates face-to-face interviews for the consumer, with the consumer making the final decision. It also maintains a list of on-call PCAs and has an emergency staffing phone line available on weekends. In 1975, the Atlantis Community created the first home health agency in the state of Colorado that accepted Medicaid. It became both a certified Medicaid and Medicare service provider. Atlantis offers homemaking, personal care, certified nursing assistant, LPN and RN services. As of February 2008, it was serving about 50 people. Summary of Personal Assistance Services Centers for Independent Living provide services that support Medicaid state plan and waiver PAS programs as well as state-funded programs. Centers interviewed were involved in consumer-directed PAS and provided a broad range of services, including training consumers as managers and program participants, assisting in recruitment and hiring, providing payroll and tax reporting, providing ongoing case management, and ensuring quality. In addition, Centers are direct service providers and employ PCAs to deliver PAS. Almost all of this work is supported with Medicaid funding. Nursing Facility Transition Services All of the Centers interviewed for this paper were involved in helping people move from nursing facilities back to living independently in the community. Centers were normally not paid for this work, but all considered it to be important work. Alpha One has worked on assisting people to move from nursing facilities since its early days as a Center, but does not receive financial support for this work. The Endependence Center also does this work, but receives no money. Paraquad employs three people to assist individuals who want to transition from an institution, but receives no state or federal funds for this work. The Topeka Independent Living Resource Center has helped many people move from nursing facilities under the state s money follows the person program, but receives no money. The Center for Disability Rights has been helping people transition from nursing facilities since 2000 and is training five staff to do this work in anticipation of a soon to be implemented new Medicaid Nursing Home Diversion and Transition Waiver. ABIL employs two staff to work with people who want to transition. It was working with people a year, but is now working with fewer people. ABIL also does early intervention at rehabilitation hospitals in the area and visits each of them on a weekly basis. United Way helps fund this program, but it receives no state or federal funding. Atlantis Community runs a Nursing Facility Transition Project funded through Medicaid Community Transition Service. It provides outreach to facility residents and guidance to assist those who are interested in living in the community. Program participants 17

18 are involved in the entire transition process from conducting a housing search, ensuring any available benefits, and choosing providers. Atlantis is paid a one-time fee for helping a Medicaid enrollee transition after the person has lived in the community for 30 days. Enrollees must be eligible for the Medicaid Elderly, Blind and Disabled Waiver. Atlantis assists about 20 people per year move from a nursing facility to community living. Atlantis has helped people transition from nursing facilities since it began and was an active stakeholder in Colorado s nursing home transition grant awarded in 1998 by the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. 13 The Metropolitan Center for Independent Living (MCIL) of Minneapolis has contractual arrangements with both Hennepin and Ramsey counties to do nursing home relocation. The counties use Medicaid targeted case management funds to pay MCIL and other entities to relocate individuals from institutions. MCIL has relocated over 100 individuals since 2001 and is in the 4 th year of its contract with Ramsey County and in its 2 nd year with Hennepin County. MCIL is paid on an hourly basis. The average length of time for relocation is 112 days. MCIL uses resources from different funders to help pay for needed household goods. Summary of Nursing Facility Transition Services All Centers interviewed performed nursing facility transition services. Only two were paid by Medicaid and one additional Center expects Medicaid payment shortly. One half of the Centers received private funding while the other half received no funding for this work. All centers believe this is extremely important work. Equipment and Home Modification Seven of the eight Centers interviewed are involved in either selling and repairing equipment or providing home modification services, or they are doing both. Equipment In 1986, Alpha One created a subsidiary called Alpha One Medical that sells a full line of durable medical equipment and mobility services. It has technicians to provide full equipment servicing at two locations and provides 24/7 emergency service within 30 miles of each location. In addition, staff will work with consumers on financing options. The Atlantis Community has a durable medical equipment program, which it began in It has a repair shop for wheelchairs and sells motorized as well as manual chairs. It also sells shower benches, walkers, and seating and positioning devices. Atlantis is reimbursed by Medicaid, Medicare and private insurance for its services and sales. Paraquad has a Repair Service Program for mobility devices and accessories. It provides evaluations and repairs for both new and used equipment. It accepts Medicare, both Missouri and Illinois Medicaid, and payment from one insurance company. The Topeka Independent Living Resource Center sells and repairs durable medical equipment including manual and power wheelchairs, scooters, hospital beds, shower chairs, benches, 13 Holtz & Eiken (2003). 18

19 grab bars, and other adaptive equipment. It accepts equipment donations and cleans, repairs, and safety checks all equipment for re-sale at a much-reduced cost. Home Modification In 1991, the Metropolitan Center for Independent Living, the Minnesota Department of Rehabilitative Services, and the Multiple Sclerosis Society cooperated to develop modular wooden ramps and stairs that were reusable and adaptable to a variety of sites. This work led to an instructional manual and step-by-step plans on how to build the ramps, and recommendations on how to implement strategies for community participation and using volunteers. This was later developed into a video. MCIL currently develops about 60 ramps a year. Alpha One borrowed the concept from MCIL and is now using a dedicated fabrication plant to build ramp components for assembling by trained contractors. Often funders do not want to pay for ramps that are cemented in place and cannot be moved to another location. Because these ramps are manufactured as components and assembled as needed, they can also be taken apart and moved. 50 ramps will be built and installed this year with 100 planned for next year. The Arizona Bridge to Independent Living (ABIL) provides home modification services for Phoenix, Glendale, Peoria, Mesa, and Scottsdale residents living with disabilities. The program expects a 10% consumer contribution toward the cost of the home modification either in cash, in kind, or volunteering. Licensed contractors provide the modifications such as widening doorways, building ramps, installing grab bars, and other needed structural modifications. The program is funded by Community Development Block Grant money and other resources. ABIL also has a contract with a health plan to do Medicaid-funded home modification work. ABIL has completed 150 projects and has seven contractors available to do this work. Atlantis Community runs a Multifamily Access Modification Program for people who are not eligible for assistance from any other modification program, such as Medicaid. Funded by the city of Denver, a person must live in the city and county of Denver. Modifications include ramps, electrical changes, widened doorways, lowered cabinets and roll-in showers up to a $5,000 limit. Paraquad also runs two programs that provide accessibility modifications to homes and apartments in the St. Louis area that are funded with state and local resources. The Center for Disability Rights has an affiliation with another Center, the Regional Center for Independent Living, which does home modification work under two N.Y. Medicaid Waivers, with a third expected to be implemented soon. Case managers at the Endependence Center assist consumers in getting quotes for environmental modifications, as well as assistive technology. The MCIL also provides referrals to known contractors who do home modification work. Summary of Equipment and Home Modification Centers are active in the delivery of equipment and home modification services. They have built programs to sell and repair durable medical equipment and mobility devices. Centers have developed home modification programs where they arrange for contractors to build the modifications. They build ramps and refer clients to experienced contractors. Centers are Medicaid vendors for equipment and provide home modification services for clients on Medicaid waivers. 19

20 Future Roles in Community Living Services Centers for Independent Living continue to demonstrate their value in assisting individuals with disabilities of all ages to gain needed skills and obtain needed supports to live independently in integrated community settings. This paper outlines services that Centers provide. These services are financed by both public and private funds. All services benefit both the individual receiving services and all levels of government. Individuals with disabilities have richer lives through the empowerment of freedom and independence. Government not only supports what individuals need and want, but it uses fewer resources to achieve those goals. Centers have proven to be effective partners in helping government comply with the Americans with Disabilities Act and save money by supporting individuals with disabilities to live in less-costly community settings. State Medicaid agencies have contracted with CILs because they have a rich understanding of the community living infrastructure used by individuals with significant personal assistance needs. CILs provide a unique understanding of the strengths and weakness of the current HCBS system and help Medicaid agencies build more effective services for enrollees with long term services needs. This relationship also creates an environment for information exchange and strengthens sometimes strained relationships with advocacy organizations. The services provided have evolved from the vital core training and support services into more direct services, often funded by Medicaid, such as support coordination, personal assistance, nursing facility transition, and home modification. More Centers could provide these services in more locations throughout the country and Medicaid could help pay for these vital services that keep government in compliance with the law and are costeffective. In addition to the services discussed in this paper, there may be other roles that Centers may more fully develop in the future with the similar goals of supporting individuals to live independently in integrated community setting. These services, which could be financed at least in part by Medicaid, could be: Intensive community integration services (training and supports brokerage) after inpatient rehabilitation and after nursing facility discharge, preventing re-admission to institutional care; Chronic care education and management; Options counseling for primary, acute, and long-term care services; Assistive technology counseling and sales, aimed at enhancing independence and minimizing costs; and, Telemedicine equipment to avoid the unnecessary expense of medical appointments. Of course, this is only a partial list of possibilities, but government officials should be creative in thinking about funding Centers to do certain functions to assist individuals to remain independent. 20