The Home and Community-Based Services Work Group.

partners with states, consumers, and others to advance the PAS agenda

The U.S. Department of Health and Human Services (HHS) is taking a leadership role in empowering people with disabilities--children, working age adults, and older people who need help with basic daily activities--and their families, by increasing their independence and quality of life. Under the direct guidance of the White House, HHS Secretary Donna Shalala has established a Home and Community-Based Services (HCBS) Work Group with the major goal of providing more opportunities for individuals to choose to decrease their reliance on nursing homes by increasing the available array of home and community-based services. The HCBS Work Group and other HHS activities to promote and expand home and community-based services and decrease unnecessary nursing home use are described in this article.

Approximately 11.6 million Americans who live in the community need assistance with routine activities of daily living, such as eating, going to the bathroom, getting in and out of bed or a chair, bathing, or getting around. (National Health Interview Survey, Disability Supplement, 1994.) Within this group are approximately 400,000 children, 5.3 million working age adults, and 5.9 million people over age 65. The range of disabilities experienced by these individuals includes mental retardation and other developmental disabilities, mental illness, cognitive impairment, musculoskeletal impairments, and others.

For many, long-term care is hands-on assistance with activities of daily living and associated tasks. For others, particularly those with cognitive impairments, long-term care takes the form of cuing or supervision. Most people get the help they need from family members or friends; estimates are that over three-fourths of long-term care is provided by such "informal care givers." However, many informal care givers could provide more services, and for a longer time, if they had some formal supports such as respite care or a limited number of hours of help per week.

For those who use formal long-term care supports, the federal/state Medicaid program is the primary public payer, covering 31 percent of long-term care expenditures. Only 1 percent is paid for by long-term care insurance. Approximately 39 percent of long-term care dollars are spent out of pocket by consumers each year. The remainder is covered by Medicare, VA insurance, and other sources.

Initially Medicaid covered long-term care only in institutional settings, such as nursing homes and intermediate care facilities for persons with mental retardation. The only long-term care service that Title XIX (Medicaid) of the Social Security Act mandates be in place in each state is nursing facilities. However, in attempts to provide more cost effective services and in response to clear indications that consumers prefer to receive services in integrated settings--at home, and in the community--the Medicaid law has been modified over the past few decades to allow a range of home and community-based services to be covered by state Medicaid programs. Key among these services are those covered under the section 1915 (c) home and community-based waiver program.

Medicaid is a partnership between the states and the Federal Government. The Congress and HHS set the broad parameters, but states have a lot of flexibility in terms of which services to cover, how much to offer, the number of people covered, and expenditures. More people receive Medicaid long-term care services in the community, but the lion's share of spending is on expensive, institutional services. In 1997, total federal and state spending for nursing home services was $32.5 billion; in the same year, spending for intermediate care facilities for people with mental retardation (ICF/MR) was $9.9 billion. Comparatively, Medicaid non-institutional long-term care spending that year was $13.5 billion (Burwell, Medstat analysis of HCFA 64 reports, April 1998). Most of the debate about long-term care focuses on some basic concerns about Medicaid, including an "institutional bias" in state long-term care spending, over reliance on medical models of care, and state long-term care inequities. The Administration's response to the challenges presented by this debate are discussed in detail in this article.

Activities Leading to Establishing the Work Group

Throughout the 1990's, HHS has taken several actions to make good on the Administration's commitment to expanding and promoting consumer-directed home and community-based services to enable people with disabilities to live the best lives possible. This position and these efforts are consistent with the Administration's views about the basic rights of all Americans to direct their own lives. It also is a natural extension of the Administration's rigorous support for equal rights for people with disabilities, as articulated in the Americans with Disabilities Act.

Secretary Shalala's Statement of Principles

In May 1995, after a series of meetings with individuals from the disability community, HHS Secretary Donna Shalala issued a set of principles supporting home and community-based care, reaffirming her support for home and community-based care and personal assistance services and offering consumers the maximum amount of choice, control and flexibility. Since then, HHS has significantly increased technical assistance to states to achieve these ends.

President Clinton's Meeting with Disability Community

In September 1997, President Clinton and Vice President Gore met with disability community representatives to discuss how to move forward on a long-term care agenda. The President has a strong interest in the challenges facing people with disabilities who need long-term care services. He expressed continuing commitment to increase the availability of home and community-based personal assistance services (PAS). He also said he appreciated that the Medicaid Community Attendant Services Act (MiCASA-H.R.2020) bill had been introduced to help focus attention on the issue. MiCASA is an important vehicle for fostering discussion about how to move more toward a system where "the money can follow the person," no matter what setting the person chooses to receive services. Finally, he noted that a lot of the activity and decision making regarding home and community-based care and personal assistance services is happening in the states and said that states should help each other move forward.

The HCBS Work Group is Established

As a result of the meeting, and in an ongoing effort to pull together activities in this area, two HHS officials--Bob Williams, Deputy Assistant Secretary for Disability, Aging, and Long-Term Care Policy, and Sally Richardson, Director of the Center for Medicaid and State Operations in the Health Care Financing Administration--took on the task of establishing and co-chairing a Work Group on Home and Community-Based Services. The goals of the group are to:

* address the "institutional bias" in spending for Medicaid long-term care services and reduce reliance on medical models of care;

* enable consumers and their families to choose the setting in which long-term care services are received, with increased flexibility for the "money to follow the person," as opposed to the financing determining the setting in which a person receives supports; and

* promote consumer direction of home and community-based personal assistance services.

Related Development

During the initial phases of the HCBS Work Group's activities, the President signed an Executive Order on the Employment of People with Disabilities. People with disabilities report that the fear of losing essential health and long-term care services covered under Medicare and Medicaid is an important factor in preventing them from leaving the federal income support programs--Supplemental Security Income (SSI) and Social Security Disability Income (SSDI)--and trying to work. Offering incentives that provide the necessary long-term care and personal assistance services could have a significant impact on helping these people enter the work force.

Not all people who need and use PAS will work; however, the concerns of SSDI and SSI beneficiaries who need PAS and want to work overlap with the focus of the HCBS Work Group. With secure, affordable availability of PAS, experts believe that many individuals with disabilities will be able to go to work. Thus, the HCBS Work Group has added to its areas of interest the question of work incentives for those on the SSI and SSDI rolls, to address their PAS and long-term care needs.

How is the Work Group Organized?

HCBS Work Group members include HHS and other Administration officials. Agencies represented include the Departments of Education, Labor, Housing and Urban Development, Transportation, and others. To ensure that the group's efforts are responsive to consumers, providers, and state officials, Deputy Assistant Secretary Williams and Director Richardson also established an expanded network of "constituency partners" with whom group members consult, in order to take multiple perspectives into account. The partners have been particularly helpful in guiding group members to model practices in the field; they have also served as a "reality check," commenting on how various proposals might play out in the states and for individuals.

HCBS Work Group activities are predominantly accomplished through subgroups, each focused on specific goals. Three of the subgroups have been especially active in addressing the goals of the work group: the Demonstration Subgroup, the Model Practices Subgroup, and the PAS Workers Subgroup.

Activities of the Work Group and the Subgroups

The HCBS Work Group has undertaken the following tasks:

* Identifying sources of Medicaid policies which promote an institutional bias, overmedicalization of certain services and inhibit consumer direction of services through the analysis of Medicaid (and applicable Medicare) provisions in statute, regulations, transmittals, and other documents and proposing remedies to address these issues. HCFA contracted with the University of California, San Francisco, (UCSF) to conduct this independent analysis. The UCSF team, led by Charlene Harrington, Ph.D., reviewed federal Medicaid statute and regulations, as well as HCFA guidance on interpreting the rules, and came up with over 70 policy options to promote greater use of home and community-based services and consumer-directed models. The options range from providing technical assistance to states to regulatory and statutory reforms. In some cases, the proposed reforms are already allowable under current law, but not well known in the field. An independent Blue Ribbon Panel on PAS, led by Lex Friedan, served as the Advisory Group for the UCSF report.

* Analyzing current proposals for home and community-based services reform (e.g., the CASA bill the Feingold bill) and options for improving the cost effectiveness and programmatic feasibility of reform proposals.

* Examining options for linking the need for increasing the supply of qualified attendants with the work requirements of state welfare reform programs. A report that reviews past research and demonstration activities designed to train welfare recipients to serve as personal assistance workers has been completed. The HCBS Work Group will be discussing "next steps" to promote additional activities to train and employ new PAS workers.

* Identifying demonstration and research options to test alternative strategies for restructuring the financing of home and community services to meet the goals stated above. The group is exploring demonstration strategies, including opportunities that can be offered to states to modify their Medicaid programs and try some new ways of helping people who want to and are able to live in the community. It is anticipated that states will be given the opportunity to submit proposals to develop programs to identify individuals who want to and can successfully move out of nursing homes into the community and to build the infrastructure to serve them in the community. This activity is in response to the Congressional directive in the Appropriations Bill.

In addition, HCBS Work Group members have recognized that in order to address concerns about unnecessary or inappropriate institutionalization, more knowledge is needed about the demographics and characteristics of people who live in nursing homes. The Minimum Data Set (MDS), a rich source of data on people in nursing homes, offers a unique opportunity to gain insight into certain nursing home residents. The HCBS Work Group is supporting an analysis of the numbers and characteristics of nursing home residents who may be good candidates for moving back to the community and what they would need in the way of supports. Using this information, HCBS Work Group leaders anticipate being better able to help the states design strategies that succeed.

* Identifying best practices in consumer direction of PAS in the states and establish a strategy to disseminate this information. Members of the HCBS Work Group are developing strategies to address the President's charge that states should learn from each other how to support and promote home and community-based services. Some states are much further along than others; constituency partners, state officials, and others have provided much positive feedback about the value of a "state-to-state" technical assistance strategy. The HCBS Work Group is undertaking some technical assistance activities.

Model Practices Subgroup members have interviewed a range of experts, as well as representatives of numerous states, to learn about innovative approaches in locating individuals in nursing homes and assisting them to move to community-based settings and establishing and operating dynamic home and community-based service systems, particularly for individuals who need the level of care provided in nursing homes.

In discussions with constituency partners, state officials, and others, HCBS Work Group members learned that some states and some consumers are not fully aware of the flexibility available to them today. The members take seriously the need to clarify some of the things that states can do right now to reduce reliance on unnecessary nursing home care. HHS has contracted for a primer that explains to state officials and consumers what is possible under the personal care option, home and community-based waivers, and other Medicaid services and gives examples of states that have tried different strategies.

Related Activities to Expand Choice for Consumers Flexibility for States

The HCBS Work Group is active on many fronts exploring ways to push the agenda steadily forward toward the goals of expanding choice, promoting community services, and decreasing unnecessary reliance on nursing homes. However, even before the HCBS Work Group was established, a number of activities were underway (or completed) to address similar ends. The forum of the work group unifies the full force of all these activities and initiatives, combining efforts into a comprehensive, strategic approach. Following is a description of recent legislative, regulatory, policy, and research initiatives that HHS has generated to increase the availability of home and community-based and PAS services.

Legislation to Ensure That Certain Workers with Disabilities Keep Their Health Coverage

In the Balanced Budget Act (BBA) of 1997, Congress included an Administration proposal to allow certain workers with disabilities to purchase Medicaid. Losing health coverage can devastate anyone. Losing healthcare and personal assistance services is even more devastating for some people with disabilities--to the point where they are afraid to even try to work, because if they lose SSI or SSDI eligibility and, thus, healthcare, they lose their lifeline. The new BBA provision should enable many individuals with disabilities to go to work and become self-sufficient.

Soon after the enactment of this proposal, the Health Care Financing Administration mailed state Medicaid directors guidance on this new provision. That was followed by a letter that made the eligibility standard for the provision much more generous. It is anticipated that in states adopting this optional Medicaid service, personal independence, and productivity will increase for participants and a whole new group of taxpayers will be created. This step forward is truly a win-win for all the American people.

Regulatory and Policy Advances

The Clinton Administration has been very supportive of expansions in home and community-based services. With 226 approved home and community-based waivers (authorized under Section 1915 (c) of the Social Security Act), all states are now operating at least one and sometimes several such programs, which offer an array of services to people who would otherwise be eligible for institutional or nursing home services. Thirty-nine states offer personal care as a waiver service and 13 offer attendant care. All services are offered at home or in other community-based settings. Under President Clinton's leadership, the waiver program has and will continue to flourish.

HHS continues to provide extensive technical assistance and guidance to states, enabling them to realize the largest increase in home and community-based waiver spending ever. State support and interest in the waiver program is at an all time high; between 1996 and 1997, total U.S. waiver spending increased by over 44 percent, while nursing home spending was up only 4.8 percent. (Burwell, MedStat tabulations of HCFA 64 data, April 1998.)

HHS has also taken a number of administrative steps to promote the use of waivers and to encourage consumer-directed services. For instance, last summer, Sally Richardson wrote a letter to state waiver officials in support of these ideas. In addition, a few years ago, HCFA sat down with state Medicaid officials and revised the state waiver application process, significantly streamlining it and, most importantly, removing the complex formula that required states to close a nursing home bed for each person served under the waiver. Today, because this "cold bed" rule is gone, states are able to simply specify the number of eligible individuals they plan to serve.

HHS also recently issued revised regulations to increase the responsiveness of the Medicaid personal care option to better meet the needs of people with disabilities. In addition to waivers that offer personal care and other services, there are currently 31 states providing personal care services under their state plans. Some states provide personal care under both a waiver and a state plan option. Under the new rules for the personal care state option, individuals are now permitted to receive services both in and outside of the home and the requirement that registered nurses supervise personal care services has been removed, thus reducing cost and making the service more consumer responsive and less "medicalized."

On a related note, HHS has undertaken some activities as a result of the Consumer Bill of Rights and Responsibilities issued by the Advisory Commission on Consumer Protection and Quality in the Health Care Industry. While the Medicare and Medicaid programs are largely in compliance with the Bill of Rights, there are a few administrative actions that the President has directed us to take to achieve full compliance. Of particular relevance to people with disabilities, HHS plans to include in regulations a provision that will ensure that individuals with complex and serious medical needs have appropriate access to specialists.

Research to Advance Knowledge and the State of the Art in Home and Community-Based Care

Research is also a key part of the HHS home and community-based care agenda to help policymakers, states, and consumers. It is critical to find out what works, for whom, how well, and at what cost. The department worked closely with the Robert Wood Johnson Foundation to develop an experiment to permit four states to offer consumers cash allowances along with counseling to purchase their own attendant services. The four states have requested permission to do this under the Social Security Act's Section 1115 demonstration waiver authority. These "Cash and Counseling" waivers are currently under review. Once the program is underway, a comprehensive evaluation will examine the impact of this experiment on costs, quality, and consumer satisfaction. (Note: An article on the Cash and Counseling demonstration also appeared in the previous issue of American Rehabilitation, Personal Assistance Services, Part 1).

The Administration is also finalizing plans to work with independent living centers to start testing in four sites a model to help consumers purchase "durable medical equipment," such as wheelchairs. The aim of the "DME demonstration" is to improve the efficiency of purchasing and use savings to buy enhanced equipment not covered under Medicare.

HHS further promotes its home and community-based services agenda by working with individual states to develop and implement additional Medicaid demonstrations under the 1115 authority of the Social Security Act. Some focus on the integration of acute and long-term care, such as the projects underway in Minnesota and the District of Columbia. Others, such as the Colorado home health demonstration address long-term supports in a more targeted fashion. The Colorado 1115 program will develop and refine the independent care model in Medicaid home health services and assist individuals who are capable of doing so to direct their own services.

HHS leaders are very interested in helping states use the 1115 waiver authority to find new ways of doing business in Medicaid and encourage states to suggest ideas and proposals. These activities feed into and play off the efforts of the HCBS Work Group.

In addition to the 1115 demonstration waiver work, HHS has developed and carried out a solid research agenda on various aspects of personal assistance services. For example, in 1991, the department supported the World Institute on Disability to conduct a comprehensive Survey of Medicaid Personal Care Programs. The study offered a statistical profile of all Medicaid personal care programs, with indepth descriptions of six states' programs.

Under contract to HHS, researchers at the University of California at Los Angeles recently completed a study of the California In-Home Supportive Services (IHSS) program, comparing client-directed and professionally managed approaches to providing PAS. Another related project is addressing issues arising from regulatory compliance requirements. Among the elements of this study are: case studies of close to 20 programs that use a variety of intermediaries to determine how they assist consumers; and the development of model contracts reflecting current federal regulatory and other requirements.

Conclusion

The leaders and members of the Home and Community-Based Services Work Group are dedicated to continuing to stimulate more of the kinds of conversations needed at both the federal and state levels. Discussions and activities must focus on how to best provide consumers and their families with more opportunities to choose the settings in which they receive long-term care services. The key is finding the most powerful incentives possible to support states to move in the direction of reducing reliance on institutional care and, at the same time, expanding and promoting consumer-directed home and community-based services. It is critically important for the Federal Government and the states to continue to work together to develop models and a broader array of consumer-directed and community services.

The Administration has demonstrated its support for this work group through

ongoing activities and by establishing the HCBS Work Group. The challenge, of course, is to balance the goal of providing more flexibility and choice for people with disabilities with the need to ensure that the responses are cost effective and consumer responsive but also take advantage of and promote flexibility in current programs and innovation in states to help people obtain and keep the help they need to lead the best quality, most independent lives possible.

Audio Cassettes of American Rehabilitation

Taped Copies of American Rehabilitation are available to blind and physically handicapped persons through local regional offices under the National Library Service for the Blind and Physically Handicapped. Contact your public library for the location of the regional library which serves your state.

Ms Katz is Director, Division of Disability and Aging, Office of Disability, Aging, and Long-Term Care Policy, Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.