Chapter 3

External Advisors and External Policymakers:

Recommendations for Action

Table of Contents:

Chapter 3

Page

Part I

Introduction 285

Part II

Approaches to Development 287

Part III

Expert Panel Discussion and Recommendations 321

Part IV

Conclusion 327

Appendix 3.A 331

Part I

Introduction

The picture of a ship at sea comes into focus. It struggles in choppy waters to make progress, becoming more aware of the impending storm. State and federal budget deficits, competing budget priorities between homeland and social security, and domestic and global needs make it even more difficult to navigate safe passage. Demographic shifts, science and technology advances, and changing expectations of an aging baby boomer population to maintain and control the quality of independent living produce sporadic thunder but do not yet hold the sustained interest of the ship’s crew.

As sudden as lightning streaking through a dark sky, current events attract media and public attention to the complexity of competing portraits of human identity: life with all its freedom defined by intellectual and physical capacity, and disability defined by decline and devalued in some economic terms by limited return on investment. For two weeks, the plight of Terry Schiavo was the focus of national media attention—the front page on newspapers and the lead story on the evening news.

On March 31, 2005, Terry Schiavo died, 13 days after her feeding tube was removed as a national debate continued about the ethics, politics, and spiritual significance of her life and death. Her plight raised new questions for policymakers, the courts, and families nationwide about who makes decisions about when life is worth living and when it is not. President Bush issued a statement lamenting that attempts at congressional intervention were not successful to override the decision of Schiavo’s husband: “The essence of civilization is that the strong have a duty to protect the weak.”

What has been lost in much of the media attention to the Schiavo case is the shift of the spotlight from decision making about the end of life to the growing numbers of Americans living every day in need of assistance with activities of daily living (ADLs) to be able to achieve an enhanced level of human dignity and independence. A hundred years ago, the end of life was typically more sudden as a result of disease or injuries. With the advances of medical technology, there are growing numbers of Americans with chronic conditions, below and above 65, whose quality of life will be defined by the level of supports and personal assistance that can be accessed through government financial assistance.

The Schiavo family’s conflicts about who should decide to end a life and the attempts at judicial and legislative intervention to substitute public for private decision making should send an urgent message to all of us to revisit public responsibility to individuals with significant disabilities, who are not dead yet! The moral high ground needs to move beyond emotion and ideology to a much-needed evaluation of public responsibility to recognize disability as a natural part of human experience with social and economic implications, to protect the “weak,” preserve human dignity, and enhance independent living through access to needed long-term services and supports.

Are policymakers across the political spectrum ready to debate the role and responsibility of federal and state government to protect the right to live with dignity, which recognizes the need to confront the economic terms of meeting such objectives with financial assistance for LTSS?

Terry Schiavo’s life and death transfixed the nation. At this writing, one week later, there is no shortage of expert opinions on policy options to consider bringing the ship forward in choppy waters and the impending storm. This chapter offers multiple perspectives of diverse stakeholders who recognize the urgency and importance of confronting these complex challenges sooner rather than later.

The recommendations for action are broken into two parts. The first part offers a summary and analysis of selected approaches to future policy development by leading organizations and think tanks navigating their way through the diverse interests and needs of state government, providers, individuals with disabilities, and families. The second part offers the perspective of an Expert Panel assembled by the National Council on Disabilities to share their personal experiences and expertise on consumer direction, public financing, the workforce, and service delivery options to respond to pressing needs of individuals and families across the diverse spectrum of age, geography, disability, and economic class.

Part II

Approaches to Policy Development

NCD researchers compared and contrasted policy recommendations for improving access, availability, and quality of LTSS for individuals with disabilities that have been produced by six different national organizations:

• National Academy for State Health Policy (NASHP)

• National Governors Association (NGA)

• National Academy of Social Insurance (NASI)

• Congressional Budget Office (CBO)

• Americans Disabled for Attendant Programs Today (ADAPT)

• American Association for Retired Persons (AARP)

Despite varied roles and relationships to advising policymakers at the federal level, the alignment of strategies proposed and the sense of urgency to move forward are more consistent than might be expected. All have a similar starting point. Demand is growing for LTSS that will not be able to be ignored by policymakers and that will require changes in structure and financing to respond to consumer preferences for home and community options. The greatest variance among organization proposals can be distinguished by the degree of fiscal commitment to a guaranteed coverage of a comprehensive benefits package organized around consumer needs and preferences.

National Academy for State Health Policy

NASHP is a nonprofit organization dedicated to helping states achieve excellence in health policy and practice. NASHP conducts research on emerging trends and challenges for states to respond to the needs of children and adults for health care and LTSS. Activities include policy analysis, training, and technical assistance to states, and convening regional and national forums to enable diverse stakeholders to share innovative and collaborative strategies related to service delivery, financing, management, and quality issues.

In January 2005, NASHP published a report on improving health and long-term care (LTC) coverage for low-income Americans. The report, “Making Medicaid Work for the 21st Century,” was a year-long effort undertaken by NASHP to develop recommendations that would improve the Medicaid program. A workgroup was convened of state officials and national experts representing a broad range of stakeholder interests. The focus of discussion was on the federal-state relationship in Medicaid and its financing of health care, LTC, and LTSS. Medicaid beneficiaries become entitled to benefits adopted by the state; however, the terms and conditions for a state to receive financial assistance are defined by policies and requirements of the Federal Government. Federal rules define benefits that are mandatory and a menu of others that are optional and defined by the state in terms of scope and population areas covered. The workgroup focused on three core areas for improvement: revising the eligibility process for Medicaid financing of community-based LTSS, incentives to encourage states to offer expanded coverage of community-based services and supports, and restructuring the system to improve beneficiary access to a full-range of at-home or community-based services.

Revise Eligibility for Medicaid

The workgroup agreed to an overarching goal: that Medicaid should “serve eligible populations through policies and enrollment processes that maximize coverage and ease administration.” The workgroup identified several features of current Medicaid eligibility rules that were particularly challenging. There is little consistency across states in how they define and value income and assets when determining whether an applicant meets Medicaid financial eligibility criteria. Existing eligibility rules are more expansive for individuals in an LTC institution rather than in the community. The workgroup recommended that a minimum national income eligibility threshold be established, with states having the flexibility to expand coverage to individuals and families above the eligibility floor. The national minimum eligibility threshold would require states to cover all individuals with household incomes up to 100 percent of the federal poverty level. This new requirement would be phased in over four years, and the Federal Government would offer an enhanced match for new eligibles. Implementation of this recommendation would provide Medicaid coverage to 5.3 million new individuals, including 4 million of the uninsured. When fully implemented, the estimated cost would be $16.6 billion per year, with an estimated federal share of $11.2 billion. When fully phased in, state Medicaid spending would increase by 4.1 percent. The workgroup also recommended that states have the option to eliminate the assets test for all Medicaid populations. States do not currently have the option to eliminate it for Medicaid enrollees whose eligibility is tied to Social Security Income (SSI).

Separate from financial eligibility for Medicaid, the workgroup also recommended that states be allowed to set different functional criteria for institutional and community-based services and supports. Separate standards would allow the provision of community-based supports before an individual’s condition deteriorates to the point that institutional care is the only option.

Modify the Benefits Package

The second core area of focus for the workgroup was on the benefits package and correcting the balance between institutional and home- and community-based services and supports. With more than 20 years of experience, and with community supports waiver applications tied to cost neutrality as compared to institutional care, it is time to move to a state plan option. The workgroup recommended that states be allowed to replace 1915(c) waivers with a home- and community-based services (HCBS) program with the following components:

• States would submit a plan to the Centers for Medicare and Medicaid Services (CMS) describing the services to be covered. Once approved, the program would continue without renewal requirements.

• States could set a higher income threshold for admission to an institution and a lower threshold for the HCBS program.

• The program would not be subject to existing waiver requirements (cost neutrality, time-limited approvals, and links to nursing home level of care).

• States would have the discretion to set caps on participation and distinguish service options for subpopulations.

The workgroup recommended that, under the new HCBS programs, states be allowed to choose to provide optional populations (those with incomes above the minimal national eligibility threshold) with more restrictive choices of services and supports. Two other recommendations from the workgroup would offer the consumer greater ability to manage and direct the delivery of services. States should be encouraged to expand Cash and Counseling Demonstrations that provide beneficiaries with an individual budget to purchase and mange their own service delivery. States should also be encouraged to expand Money Follows the Person beyond transitioning nursing home residents to individual residents of intermediate care facilities for the mentally retarded (ICF/MRs) and for individuals with long-term mental illness

As part of the approach to expanding benefits, the workgroup also proposed two other recommendations to improve beneficiary access. Building on the early results from the Aging and Disability Resource Centers (ADRCs), states would be encouraged to create single entry points to provide Medicaid beneficiaries and applicants with information and assistance in determining eligibility and service needs. A complementary suggestion by the workgroup is that all beneficiaries seeking long-term services should provide a standardized assessment to help determine needs and service options to meet those needs. Assistance would be provided to help access appropriate services and supports.

Provide Financial Incentives to States to Rebalance the Program

The final area for improvements focused on current policies governing Medicaid financing. Medicaid is currently an open-ended entitlement to eligible individuals and states. As an entitlement, the Federal Government must reimburse the state for the federal portion of the cost for every dollar spent on Medicaid-covered services for eligible individuals. States’ matching rates vary based on the size of low-income populations. The minimum 50 percent federal matching rate ensures that states will receive a minimum level of federal cost-sharing.

The workgroup recommended the creation of fiscal incentives to encourage and support the rebalancing of their LTSS system to favor home and community. The suggested approach would offer states a temporary, higher match on community-based services, combined with a continuation of Systems Change Grants to support infrastructure development. The enhanced match would be conditional, with a state required to document progress in serving more people in homes and communities, measured as a percentage of the total number of beneficiaries receiving long-term support, or as a decline in Medicaid-paid nursing home bed days.

The workgroup emphasized in its concluding comments that the proposed set of recommendations related to changes in eligibility criteria, the menu of benefits, and financing are interrelated and must be viewed as a whole. Strengths of the NASHP proposal include the creation of a minimum national financial eligibility level for Medicaid, regardless of what state one lives in, to ensure coverage for all Americans with incomes below the federal poverty level; a simplified community services program to replace the waiver; and fiscal incentives to states to relocate their resources away from institutional settings. The reduction of the number of uninsured individuals is estimated at about 4 million, or 10 percent of the total group. Although the increased projected federal and state costs are not insignificant ($16.6 billion), it is a step forward to reduce variability among states and provide important benefits coverage to a class of individuals with significant need. The replacement of the “waiver” context for HCBS and the conversion to a “program” not tied to institutional cost comparisons, with the added push of fiscal incentives, is a major step forward.

However, the proposed program offers states the flexibility of carving out covered populations and limiting geographic scope as a way of containing costs. The approach does not yet create a true parity between the entitlement to skilled nursing care and home- and community-based LTSS. The recommendations to create financial incentives to states to reallocate their system as part of the design, development, and expansion of home- and community-based LTSS are not accompanied by any projections of cost.

This set of recommendations from NASHP focuses exclusively on improvements to Medicaid. As a result, it does not look at a broader policy framework for expansion of coverage of LTSS across funding options and other existing federal authorities.

The following table summarizes key recommendations from the NASHP report.

Table 3.1. National Academy for State Health Policy

Report/Recommendation: “Making Medicaid Work for the 21st Century,” January 2005.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

Focuses only on Medicaid changes Create a minimum national income eligibility threshold to cover all individuals with household incomes up to 100 percent of the federal policy level.

Set different functional criteria for institutional and community-based services and supports. Eliminate the relationship of cost neutrality between Home- and Community-Based Services (HCBS) waivers and institutional care.

Create a new HCBS program as a state Medicaid plan option.

States define the benefits coverage regarding long-term services and supports (LTSS) and can set caps to participation. Create single entry points to provide Medicaid beneficiaries and applicants assistance with determining eligibility based on service needs.

States would be encouraged to provide eligible participants an individual budget to purchase and manage their own service delivery.

Programs would continue without waiver renewal requirements.

States could set a higher income threshold for admission to an institution and a lower threshold for the HCBS program.

States allowed to carve out covered populations and limit geographic coverage. To accelerate rebalancing the LTSS system, states would receive a higher match on a temporary basis for HCBS.

States would be required to document progress in serving more people in HCBS and a decline in Medicaid paid nursing home bed days.

Continue Systems Change Grants from Centers for Medicare and Medicaid Services (CMS) to help states with building capacity, policy changes, and infrastructure development. Viable approach to end institutional bias of Medicaid.

Fiscal incentives for states to rebalance LTSS system.

Create Medicaid state plan option.

Encourage use of consumer-directed individual budgets.

Create single points of entry to overcome system fragmentation. Approach is optional, not required for states.

States can carve out who is eligible, limit scope of benefits, and waive statewide coverage.

Further research is needed on cost of proposal.

Does not look outside of Medicaid at other federal authorities.

National Governors Association

The NGA is the collective voice of the nation’s governors. In 2003, NGA Chairman Governor Dirk Kempthorne of Idaho created a task force to identify public policies that can help individuals live independently and with dignity. In his charge to the task force, Kempthorne urged the group to advance best practices in community care. “Overwhelmingly, Americans want to remain in their communities and places they call home.” In describing the scope of inquiry, Kempthorne encouraged an examination of effective transportation systems, emerging technologies, and reliable housing options, as well as identification of innovative practices to encourage and assist caregivers. Over the course of the past 15 months, through numerous forums and public policy research, the Lifetime of Health and Dignity Task Force developed multiple recommendations for future policy development. The discussion frequently returned to focus on the Medicaid and Medicare programs, which are the dominant federal means of assistance for our nation’s most vulnerable citizens, who would otherwise lack the means to afford the health care and LTSS they need.

At their winter 2003 meeting, the governors adopted a statement of principles to be considered concerning any proposal to reform Medicaid. Included in the statement of principles is a finding that “the Medicaid statute has failed to keep pace with the changing health care system, current medical practices, and the needs of Americans in the 21st Century.”

The proposed principles or policy framework adopt a core set of concepts that are reflected in the recommendations reviewed and analyzed from other national-level organizations. There is a need for more flexibility for states in the management of the Medicaid program. Current HCBS waiver authority must be revised to rebalance the current system of supports to favor community versus institutional settings. However, the NGA platform goes farther to address a range of issues of major concern to the governors and states. All three recommendations touch the sensitive issue of cost and allocation of responsibility if changes and improvements are to be made to enable all Americans to live longer with independence and dignity.

• The Medicare and Medicaid programs are interrelated, and any change made to Medicare, whether to strengthen its solvency, address its financing, or for other purposes, should be considered in conjunction with reforms to Medicaid.

• The Federal Government should pay 100 percent of the cost of any new Medicaid mandates imposed under an Act of Congress, federal regulation, or court decision based on federal laws and regulations.

• It is also unacceptable for Medicaid to be the only LTC program in the country. Other sources of coverage, whether federal, employer based, personal, familial, or community based, must be developed.

It is not surprising that the governors are concerned about increased costs and the shifting of responsibility to the states. The last three Administration budget proposals have targeted Medicaid for federal cost reductions that would shift increased responsibility for beneficiaries to states. Total Medicaid spending has increased rapidly in recent years. In the past four years, Medicaid spending has increased by more than 50 percent. Over the past two decades, the average share of state budgets set aside for Medicaid spending increased from 8 percent in 1985 to 22 percent in 2003. In 2005, Medicaid spending will surpass spending for elementary and secondary education as the largest single item in overall state budgets. According to CMS and the Congressional Budget Office, Medicaid spending is expected to continue to grow at a rate exceeding state revenue growth, driven by caseload growth, an aging population in greater need of assistance, and medical advances.

Despite cost concerns, the NGA task force explored additional, diverse options to change the current system of LTSS. A recommended list of “20 Actions Governors Can Take” was developed that divides proposed actions into four major categories: (1) promote community-based care; (2) support family caregivers and home care workers; (3) encourage personal financial planning; and (4) promote health and wellness. All 20 recommendations are based on promising practices in one or more states concerning services for seniors. Several would require federal policy reform. However, many would also benefit individuals with disabilities at a younger age in need of LTSS. The review of 13 of the 20 recommendations was selected because of their relevance to the larger target audience of individuals with disabilities below and above the age of 65.

Promote Community-Based Care

1. Promote elder-ready communities to enable individuals to live in their homes and neighborhoods as long as possible. Based on the livable communities framework, state and local governments can work together to improve availability of affordable housing and transportation, and provide financial assistance with home modifications to enable an individual with the onset of disability to “age in place.”

2. Establish fast-track eligibility for HCBS. Following a hospital stay, individuals are routinely referred to nursing homes instead of being offered community-based services. Hospital discharge planners are often more familiar with nursing home eligibility rules than with options for coverage of in-home or community care. Several states have streamlined the eligibility process for HCBS waivers and established presumptive eligibility for community care that makes services available within 48 hours.

3. Improve access to long-term support options by developing Web-based information and assistance systems. With the complex set of rules and requirements that determine eligibility for services and supports and that are often different for each public funder and from state to state, numerous states are now developing information-rich Web sites to provide consumer-friendly information to determine support options and individual eligibility. Computer-based information systems are complemented by counselor support in local neighborhood centers.

4. Establish one-stop shops. Pioneered in Wisconsin, multiple sites are now piloting ADRCs with financial support from CMS and the Administration on Aging. Assistance is provided to both public- and private-pay individuals to better coordinate information and access to multiple federal, state, and local programs.

5. Include consumer direction in all state community-based service programs. Building on positive evaluations from selected state Cash and Counseling Demonstrations, consumer direction is an essential program design element that allows individuals with disabilities to have maximum choice and control over their support plan, including assessment of needs, determination of how those needs will be met, selection of providers, and management of costs within an individual budget.

6. Coordinate transit funding sources. Access to reliable transportation services can be strengthened through linking transportation resources to health and social service programs. Improved coordination between state and local governments and public and private service providers can improve availability in urban and rural settings.

Support Family Caregivers and Home Care Workers

7. Improve the tax treatment of caregiver expenses. State caregiver tax credits generally range from $500 to $1,500. At least 26 states and the District of Columbia have either refundable or nonrefundable tax credits for dependent care that generally benefit low-income taxpayers.

8. Expand Family and Medical Leave Act (FMLA) benefits. FMLA provides employees of businesses with at least 50 employees with at least 12 weeks of unpaid leave each year to care for a newborn or seriously ill family member, or to recover from their own serious health conditions. To further support family caregivers, the federal FMLA provisions could be expanded to cover employees in workplaces with fewer than 50 employees, allow leave for family medical needs that are not covered by the federal law, extend the periods for family and medical leave, and offer paid leave benefits.

9. Inform home care workers about eligibility for federal tax credits. Tax refunds for a low-income worker with a family can be significant—up to $4,200 under the provisions of the earned income tax credit (EITC). Volunteer tax preparation assistance is available in most major cities.

10. Encourage and assist in developing employer health insurance purchasing pools. Several states have organized public authorities that serve as employer of record for self-employed home care workers to create a purchasing pool. Between 40 and 45 percent of paraprofessional home care workers lack health coverage. Health coverage options will help attract and retain direct care workers.

11. Connect in-home workers to existing supports for taxes, housing, health care, transportation, and other service needs of low-wage workers. Selected states have created direct care worker resource centers and have coordinated worker recruitment and links to support services through the workforce development system of One-Stop Career Centers.

12. Encourage personal financial planning. Selected states are offering limited tax credits or deductions to encourage purchase of LTC insurance premiums. Encourage more consistent coverage across states with tax incentives for purchase of policies that benefit other family members.

13. Promote the use of reverse mortgages for long-term supports. Reverse mortgages allow homeowners to stay in their homes while cashing in on the equity they have invested. Funds received in a lump sum, as monthly payment over a fixed period of years, as a lifetime annuity, or as a flexible line of credit are considered tax free and do not count as income toward social security, Medicare, or Medicaid benefits. The full loan amount, including principal and interest, is repaid to the lending institution when the borrower or borrower’s spouse sells the home, moves, or dies.

With its statement of principles for Medicaid reform and the breadth of recommendations for the creation of a more comprehensive system of support for individuals with disabilities to live with independence and dignity, NGA has offered possible ways to reexamine the current policy framework. Although there are no cost projections for any of the specific proposals, there are clear concerns about sharing the costs with the states. NGA wants any new federal Medicaid mandate to be 100 percent funded by the Federal Government. There is an understanding that no single federal program or funding authority offers a full solution to increasing long-term services demands and changing consumer preferences. There is an interest in embracing consumer direction and choice, as well as state commitment to continued expansion of the benefits options that support the family and recognize the important role of family caregiving, which reduces public costs. A comprehensive solution will need to improve collaboration among federal, state, and local government and public and private sector interests. The NGA recommendations make it clear that the allocation of costs is at the center of future discussions and debate.

The following table summarizes the NGA recommendations.

Table 3.2. National Governors Association

Report/Recommendation: “Lifetime of Health and Dignity Task Force,” 2004.

“Policy Resolution HHS-27,” Winter Meeting, 2005.

“Twenty Actions Governors Can Take,” 2004.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

Focus on Medicaid and Medicare, but with the recognition that other strategies must be developed, including employer-based, family, and private sector solutions. Establish fast-track eligibility for home- and community-based services (HCBS).

Consider presumptive eligibility for HCBS based on functional assessment of needs.

Involve the consumer actively in assessment of needs and determination of an individual service plan to meet those needs. Does not define the benefits coverage for HCBS.

Does promote the elder-ready or livable communities concept and encourages state and local governments to work together to improve availability of affordable housing and transportation, and financial assistance with home modifications. Establish One-Stop Shops to better coordinate information on eligibility and access to diverse public and private services and supports.

Improve information access by developing Web-based information systems.

Include consumer direction in all state community-based programs. Federal Government should pay 100 percent of the cost of any new Medicaid mandates.

Any changes to Medicare must address the impact on Medicaid, which shares costs between the Federal Government and the states.

Improve tax benefits for dependant care to help families with the expenses of informal caregiving.

Encourage and assist in developing employer health insurance purchasing pools to help attract and retain direct care workers.

Promote the use of reverse mortgages to increase personal funding to pay for long-term services and supports (LTSS).

Expand family and medical leave benefits to further support family caregivers. Recognition of the multiple dimensions to the challenges being faced by individuals and families in growing numbers.

Endorse livable communities framework to improve coordinated accessible transportation and housing strategies.

Support consumer-directed individual budgets and active consumer choice and management of public resources.

Support improved information access and presumptive eligibility for community services based on a functional assessment rather than on the institutional care bias of current system.

Support expanded tax benefits for families involved in dependent care and assistance in health coverage for direct care workers to help with recruitment and retention challenges. Takes strong position against any new unfunded federal mandates as a solution. Any improvements to coverage under Medicaid must be 100 percent federally financed.

The cost issue steers NGA recommendations away from changing the current HCBS waiver process or creation of new state plan option or entitlement.

Expansion of tax benefits for family caregiving needs additional research related to cost and analysis of the impact related to a public system of supports.

National Academy of Social Insurance

NASI is a nonprofit organization made up of the leading experts on social insurance. Members include policy analysts in income security and health care financing, economists, political scientists, administrators of public and private benefit programs, and practitioners in related fields. Social insurance encompasses broad-based systems for insuring workers and their families against economic insecurity caused by loss of income from work and the cost of health care. NASI convenes study panels to conduct research and issue findings and policy recommendations.

In January 2003, the Study Panel on Medicare and Chronic Care in the 21st Century issued a report titled “Building a Better Care System.” When Medicare was first established in 1965, it was modeled after the health insurance system of that time. Medicare served primarily as a claims payer. Its benefits package and reimbursement systems were not designed for chronic conditions. The study panel adopted a definition of a chronic condition as “a condition which lasts (or is expected to last) a year or longer, limits what a person can do, and requires ongoing care.” The report identified the cost of managing chronic conditions as substantial. A disproportionate amount of Medicare dollars are spent on beneficiaries with chronic conditions. Beneficiaries with five or more chronic conditions account for 20 percent of Medicare spending.

The need to manage chronic conditions has increased over the past two decades. The number of beneficiaries is expected to continue to grow from 40 million in 2001 to 77 million by 2030. The number of beneficiaries over age 85—those with the greatest chronic care needs—is projected to grow from 4.3 million to 8.5 million over the same period. The report also noted that the disabled population under the age of 65 has grown even faster than the aged population. Enrollment rose from 2.2 million in 1975 to 5.6 million in 2000. By 2017, Medicare is expected to cover 8.5 million individuals with disabilities.

The study panel adopted three principles for selecting policy changes to promote better chronic care:

• Medicare should recognize and aim to focus on beneficiaries’ needs and preferences.

• Payment should support recommended models of care delivery.

• Policies should aim for efficient care with beneficiaries getting the best value for the dollars spent. Policies should help beneficiaries maintain function and quality of life.

The panel’s recommendations include a long-term vision for Medicare and six short- to mid-term requirements. The long-term vision entails a shift in focus to chronic care with access to needed services to enhance function and quality of life and financial protection from costs that pose barriers to needed supports. There would be a seamless continuum across acute, chronic, long-term, and end-of-life care.

To achieve the long-term vision, the panel recommended six key areas for improvement, some of which could be implemented immediately.

1. Provide beneficiaries with financial protection from chronic conditions. To limit cost-sharing requirements, add an annual cap on out-of-pocket expenditures for covered services.

2. Expand the continuum of care beyond those services presently covered by Medicare. The current statute prohibits payment for services that are “not reasonable or necessary for the diagnosis or treatment of illness or injury or to improve the functioning of a malformed body member” (1862 (a)). The panel recommended a change in statutory language to prohibit payment for services that “are not reasonable and necessary for the prevention, diagnosis, treatment of illness or injury, or to improve, maintain, or slow the decline of function.” This change would shift the Medicare focus to allow for coverage of preventive and rehabilitative services that would enhance function and quality of life. The panel suggested the addition of a prescription drug benefit as the most important addition for management of chronic conditions. The report was written before the passage by Congress in 2003 of the Medicare Modernization Act. Other suggested changes in coverage included durable medical equipment, with the specific intent of maintaining or restoring function and support of rehabilitation as a tool to improve, maintain, or slow the decline of function.

3. Promote new models of care. The panel adopted the position that incremental changes in policy will not be sufficient to significantly improve the system of services and supports for individuals with chronic conditions. Services must be integrated for individuals dually eligible for Medicare and Medicaid. Payments should support the redesign and expanded benefits coverage. The risk adjustment of evaluation and management codes should be considered. Add-on payments for beneficiaries with specific chronic conditions would compensate providers for longer visits, additional supports, and coordination with other providers to improve the quality of care. The panel also suggested the design and testing of a variety of payment models for different subpopulations.

4. Strengthen the role of CMS as a purchaser of services. The panel supported the use of enhanced payments to providers who provide high-quality chronic care. The panel recognized the challenges of implementation of such a system and suggested that CMS fund demonstrations to improve measures and measurement on the quality of chronic care and examine strategies to make the information available to beneficiaries. Quality-of-care reporting requirements would eventually be required of individual providers, physician groups, and health plans.

5. Support enhanced information systems. Medicare should support the implementation of information systems that track beneficiaries across multiple providers and care settings. Information systems should transition to longitudinal electronic records from handwritten case files. The panel notes that information systems can proactively facilitate care, reduce provider errors, and improve CMS oversight and assessment of quality of care, highlight potential areas for improvement, and provide evidence of which practices optimize quality of care. CMS should also promote the collection and standardization of health and functional assessment data. The current separate measures and information systems for different provider settings make it difficult to track an individual’s health, function, and quality of life across care settings.

6. Implement and support funding for research and demonstration projects. The panel suggested that CMS sponsor a wide variety of research and demonstration projects. Projects to consider included alternative models of care management, research on risk adjustment, options to increase family participation in care and support decisions, and other approaches to improve quality of care for specific subpopulations with functional and cognitive limitations.

The NASI panel did not attempt to project the costs of implementing their recommendations. It did, however, prioritize their top three suggestions for federal policymakers. Their priority recommendations were to limit beneficiary costs by adding an annual cap for out-of-pocket expenses, support new models of care by risk-adjusting evaluation and management codes, and implement an information system that tracks beneficiaries across multiple providers and care settings. The panel’s focus on care reflects the influence of the medical system historically on a population increasingly determined to have a greater role in assessment and management of service and support plans.

There is recognition of the need for change that would significantly alter and improve the Medicare program for a growing population that is younger and more disabled. These changes will require significant additional spending of public resources. The NASI panel was more narrowly focused on a single federal program and did not look at the interrelationship of other federal authorities outside of Medicare and Medicaid. Analysis and measurement of quality of life for people with chronic conditions would evaluate alternative care settings for rehabilitation and enhanced function. However, challenges of affordable housing and aging-in-place at home were beyond the scope of inquiry. The panel suggests testing alternative payment models but leaves the scope of options to future research and demonstration activities. The panel does offer an important shift in focus for Medicare that suggests the possible framework for a more comprehensive set of benefits “to improve, maintain, or slow the decline of function.”

The following table summarizes the NASI recommendations.

Table 3.3. National Academy of Social Insurance

Report/Recommendation: “Medicare and Chronic Care in the 21st Century—Building a Better Care System,” 2003.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

Focuses only on changes to Medicare and the growing population with chronic conditions. Does recognize the interrelationship with Medicaid for future policy development. Allow payment for services that are reasonable and necessary for the treatment of illness or injury to improve, maintain, or slow the decline of function. Expand coverage to include durable medical equipment with the specific intent of maintaining or restoring function and support of rehabilitation as a tool to improve, maintain, or slow the decline of function.

Shift the focus of Medicare to chronic care with access to needed services to enhance function and quality of life. Services must be better integrated for individuals dually eligible for Medicare and Medicaid.

Support improved information systems that track beneficiaries across multiple providers and care settings.

Standardize health and functional assessment data across care settings.

Support research and demonstrations to learn more about approaches to improve quality of care for specific subpopulations with functional and cognitive limitations. Limit beneficiary cost-sharing with an annual cap on out-of-pocket expenditures for covered services.

Consider risk adjustment of evaluation and management codes with add-on payments to cover costs of beneficiaries with the need for more intensive supports.

Conduct additional research to understand more about cost and the impact of a risk-benefit approach and options to increase family participation in care and support decisions. Support of new models that are at risk of adjusting evaluation and management codes under Medicare.

Improve coordination across funders and care settings through an enhanced information system that tracks beneficiaries across multiple providers.

Recognize the need to change coverage of Medicare for a growing population that is younger and more disabled.

Limit out-of-pocket expenses annually for beneficiaries. There are no cost projections for this proposed change in coverage and focus of Medicare.

Narrow focus on Medicaid and Medicare leaves out consideration of other federal authorities also affecting quality of life for the targeted population with a specific emphasis on coordination between housing assistance and service needs.

Congressional Budget Office

The CBO conducts policy research at the request of members of Congress and congressional committees. Its mission is to provide independent, objective information to help consider policy options for the future. At the request of the House Budget Committee, the CBO’s Health and Human Services Division analyzed the current state of financing for LTC and delineated a range of policy approaches to consider for future policy development. A report entitled “Financing Long-Term Care for the Elderly” was issued in April 2004. In keeping with its mandate to provide impartial analysis, the report contains no recommendations. However, CBO does provide a careful analysis of the current context to consider increasing costs affected by demographic trends that demand the attention of policymakers. Although the target population is more narrow than the larger group of individuals across the age span with LTSS needs, the CBO analysis is relevant and helpful to the understanding of recent growth in public spending and the possible relationship between public and private financing.

CBO explains that the need for LTC is already substantial, even without the aging of the baby boom generation. The doubling of the senior population by 2040 is expected to further intensify demand for services. CBO defines “long-term care” as

the personal assistance that enables impaired people to perform daily routines such as eating, bathing, and dressing. Such services may be provided at home by family and friends; through home- and community-based services such as home health care, personal care, and adult day care; or in institutional settings.

With the exception of room and board covered by Medicaid for individuals who qualify for skilled nursing facilities, the CBO analysis does not explore, within the context of LTC, alternative less restrictive places to live and public and private financing options. Within the definition of LTSS adopted by CBO, the report explains that most costs are provided through personal resources. Most seniors with a need for assistance with at least four aspects of daily life rely on informal caregiving. Donated caregiving is most common among lower-income groups and among seniors who live close to people willing to provide it, such as family members. CBO estimates that replacing the donated costs with professional care would cost between $50 billion and $103 billion in 2004 dollars.

The CBO report acknowledges that, in general, people who are younger than 65 use LTC for different reasons than do people who are over 65. Seniors in need of LTSS generally are adversely affected by physical problems such as arthritis and heart disease. Younger individuals with disabilities are more likely to be affected by mental retardation and mental illness. Medicaid is by far the biggest funder of LTSS for individuals under the age of 65, and the program spending for this group continues to grow significantly with the shift from institutional care to HCBS.

The CBO report sets out three options to respond to growing demand for LTSS. The first set of proposals would tighten eligibility for Medicaid and limit Medicare’s home health benefits. The second set of proposals explores the relationship between LTC insurance and public coverage under Medicaid. It seeks to alter the incentives that encourage people to spend down assets to become financially eligible for Medicaid for private LTC insurance. The third set of options would expand public programs that finance LTSS.

1. Restrict growth in LTC spending by Medicaid and Medicare. The rationale for this suggestion is that, by placing new restrictions on eligibility and benefits, individuals with disabilities and families would turn to private market solutions that would be developed to respond to the need. One approach would be to tighten existing limits on income and assets that would delay some applicants’ entry into the Medicaid program and discourage others from applying at all. Such a proposal would probably most adversely affect individuals with disabilities under age 65. These individuals are the least likely candidates for any market-driven product of LTC insurance, because their need for services and supports is more intense and costly. As a group, they are the least likely to be able to afford premiums that would be risk-adjusted and most likely be at the higher end.

2. Improve the functioning of the market for private LTC insurance. This second proposal seeks to improve the relationship between Medicaid coverage and coverage under private insurance policies. The first part of the proposal is to standardize LTC policies. Such an approach would make it easier for companies to compare premiums for uniform sets of benefits. It might lead to more competition among insurers and possibly drive prices down. A standard benefits package that conforms to government standards might also help prevent insurers from tailoring policies to appeal only to healthier purchasers or those with less intense needs. CBO’s analysis of this approach suggests that standardization of benefits may block the objective it was meant to achieve. A required minimum set of benefits and consumer protections might be so comprehensive that insurers would have to charge higher premiums, with the result that consumer interest would decline. An additional disadvantage discussed is that standardization could prevent insurers from offering a variety of products to meet the needs of a very diverse consumer audience. A second part of this proposal would allow consumers to supplement Medicaid coverage with private policies. Current rules do not allow enrollees to hold supplemental private insurance. Applicants for Medicaid must exhaust all other sources of LTC financing, including benefits offered by private insurance. Allowing Medicaid beneficiaries to supplement coverage with private insurance would conserve public resources.

The Long-Term Care Insurance Partnership Program that began as a four-state model, and will be expanding to a nationwide model in the near future, allows people who have exhausted or used most of their private LTC insurance benefits to qualify for Medicaid and exempt all or some of their assets from Medicaid estate recovery requirements. Several states are experimenting with partnership policies that allow individuals with more modest means to purchase less expensive, shorter-term coverage and still protect some or all of their assets. In the partnership policy, some or all of the policyholder’s savings are allowed to be designated as uncountable assets for determining current and future eligibility for Medicaid. What is unknown is whether the partnership policy approach reduces or increases Medicaid spending. In a small study conducted in California’s partnership program, a savings of $1.3 million was calculated for 18 individuals who used private policies versus Medicaid coverage. It was noted that it was unclear whether the participants in this study had transferred assets before applying to Medicaid.

CBO concludes that, without question, partnership policyholders would generate more Medicaid expenditures, because they would be allowed to qualify without first exhausting all assets. What is not as clear is how Medicaid expenditures might be affected by people who would not have purchased insurance at all. CBO questions whether people without insurance have a diminished incentive to preserve their finances. By exhausting their resources, they qualify for Medicaid that much faster.

3. Expand public programs that finance LTC. This third set of proposals is described by CBO as the most costly and would “probably worsen the fiscal difficulties the future demographic changes are expected to bring if current law remains unchanged.” Three approaches are offered to expand the menu of benefits and the group of individuals who would be eligible for the enhanced menu of LTSS. Similar to the NASHP proposal, the Federal Government and states could raise the current limits on assets and income so that more individuals met the program criteria for financial eligibility. CBO suggests that such an approach is likely to depress further the development and sale of private insurance products. It is also likely to shift costs away from out-of-pocket spending by individuals who, under the new criteria, would probably have had to spend down more of their assets. A second part of this approach would be to expand benefits under Medicare. Suggested expanded benefits include home health services and respite care to promote and support informal caregiving. CBO again points out that any expansion of benefits will reduce consumer interest in private insurance products. A third option suggested by CBO for consideration is to look at several types of tax credits as an alternative to expanded direct public funding. CBO proposes a tax credit to taxpayers who are “functionally impaired or who have a functionally impaired dependent.” A tax credit as an alternative to a defined program benefit offers beneficiaries a greater degree of choice and control about the type of services to be purchased and the providers to be selected. CBO does not offer more details on the amount of the tax credit or whether it would be available to individuals and families below a certain income level.

The CBO report offers a set of options that recognize demand for services and their resultant costs. The proposals have not been analyzed in terms of specific projected costs to implement or the comparative costs of selecting one of the three approaches over another. The CBO report does raise important concerns about the relationships among out-of-pocket spending, informal caregiving, private insurance coverage, and federal spending by Medicaid and Medicare. Decisions about changes in financial eligibility will have an impact on the development, design, and utilization of private insurance products. CBO urges more study of how partnership products, which seek to balance individual and public spending, could respond to growing needs for LTSS for individuals with disabilities. Without more federal involvement to require private policies to conform to particular design standards, it is an unlikely option for individuals with disabilities with diverse needs.

The following table summarizes the CBO recommendations.

Table 3.4. Congressional Budget Office

Report/Recommendation: “Financing Long-Term Care for the Elderly,” 2004.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

CBO offers three policy options with an analysis of each approach. CBO does not recommend one option over another. Restrict growth in longer-term care spending by Medicare and Medicaid by placing new restrictions on eligibility by tightening income and asset limits.

Expand eligibility to provide an expanded menu of long-term services and supports (LTSS). Increase government involvement with the private long-term care (LTC) insurance market by requiring a standard benefits package that must be made available.

Allow consumers to supplement Medicaid coverage with private insurance policies.

Expand benefits coverage under Medicare, including coverage of respite care, to promote and support informal caregiving. CBO explores ways of complementing public programs with private LTC insurance without losing public eligibility. Consider a variety of tax credits as an alternative to expanded direct public funding to reimburse individuals and families for the expense of LTSS.

Allow consumers to use private insurance to help reduce public costs. CBO raises important concerns about the relationship between out-of-pocket spending, private insurance coverage, and public spending on LTSS.

CBO urges more research about the costs and benefits of the relationship between insurance products and publicly financed benefits.

Use of tax credits to help support the expense of family caregiving. Narrow focus of analysis on expansion or reduction of coverage through Medicaid and Medicare.

Need for further research on cost and benefits of linking insurance product coverage with Medicaid eligibility.

Americans Disabled for Attendant Programs Today

ADAPT has a history of organizing the disability community using civil disobedience and similar nonviolent direct action to achieve its goals. The organization was founded by individuals with disabilities in Denver as American Disabled for Accessible Public Transit and began its first national campaign in the 1980s, to improve access to public transit for people with disabilities. ADAPT members nationwide began to organize in 1990 for the reallocation of 25 percent of federal and state Medicaid dollars from institutional programs to consumer-controlled HCBS and supports. The reaction of ADAPT members to HCBS waivers has been one of disappointment. Inconsistent coverage from state to state, both in terms of limited eligibility and benefits coverage, has left too many individuals with disabilities and their families with few choices outside of nursing homes and other large institutions. As a possible solution to the institutional bias of Medicaid, ADAPT developed a legislative proposal designed to encourage states to provide more HCBS. First introduced in the 105th Congress in 1997, two similar legislative proposals stalled in the House Subcommittee on Health and Environment and the Senate Finance Committee. In the 106th Congress, and each subsequent legislative session through 2004, related versions of the ADAPT proposal have been introduced but have not secured sufficient support for passage.

The ADAPT policy recommendations focuses on three core areas for improvement of the Medicaid program. They focus on eligibility, access to benefits that are consumer directed, and financing strategies to encourage states to rebalance their services and supports away from institutions to home and community settings. The Medicaid Community Attendant Services and Supports Act (MiCASSA) does not propose the creation of a new entitlement. However, it does propose to offer states more flexibility in the use of federal funds to establish a national program of community-based attendant services and supports for people with disabilities, regardless of age or type of disability. In the version of the proposal introduced in the 108th Congress in 2003, congressional findings indicated that the goals of the Nation properly include providing families of children with disabilities, working age adults with disabilities, and older Americans with

a. a meaningful choice of long-term services and supports in the most integrated setting appropriate to their needs;

b. the greatest possible control over the services received and, therefore, their own lives and futures; and

c. quality services that maximize independence in the home and community, including in the workplace.

To achieve these goals, the ADAPT legislative proposal would establish a mandatory Medicaid plan benefit for coverage of community-based services and supports to be transitioned over a four-year period.

1. Expand coverage of LTSS. Rather than a plan option or an inclusion as a benefit under an HCBS waiver, the ADAPT proposal would require all states who choose to participate in the Medicaid program to include a new set of benefits for community-based attendant services and supports. Services and supports in the benefit would cover assistance with tasks necessary to assist an individual in accomplishing ADLs and IADLs; and the acquisition, maintenance, and enhancement of skills required to accomplish ADLs and health-related functions. Support includes hands-on assistance; supervising and/or cueing; and help to learn, keep, and enhance skills to accomplish such activities. ADLs include eating, toileting, grooming, dressing, bathing, and transferring. IADLs include meal planning and preparation, managing finances, shopping, household chores, phoning, and participating in the community. Services must be provided in the most integrated setting appropriate to the needs of the individual based on an individual plan.

Not included under the benefit are the provision of room and board for the individual, special education, and related services provided under the Individuals with Disabilities Education Act; vocational rehabilitation services provided under the Rehabilitation Act, assistive technology devices and services, durable medical equipment, and home modifications. The list of excluded services and benefits is an attempt to not duplicate coverage available through some other federal program authority, such as special education, vocational rehabilitation, or an HCBS waiver. It does not attempt to offer new resource support for affordable and accessible housing, even though Medicaid continues to cover room and board only in nursing home settings.

For a state plan amendment with the new mandatory community-based services and supports benefit to be approved, a state must establish an extensive quality assurance program to maximize consumer independence and consumer control in both agency-provided and other delivery models.

2. Adopt current standards of eligibility for community-based services and supports. Eligibility for the new benefit would include any individual who (1) is eligible for medical assistance under the state plan, (2) is determined to need the level of care provided in a nursing facility or an intermediate care facility for the mentally retarded, and (3) chooses to receive these services and supports in a community setting. Financial eligibility would be the same as currently required for nursing home eligibility—up to 300 percent of the SSI level. States would have the option to adopt a higher threshold.

3. Offer states financial assistance to rebalance their systems. The ADAPT proposal offers states enhanced federal matching assistance for those who move ahead with the redesign and rebalancing of their systems. The proposal also offers states additional reimbursement for the provision of community-based services and supports to an individual for whom costs exceeds 150 percent of the average cost of providing nursing facility services but who chooses to receive assistance at home or in community settings.

The ADAPT proposal attempts to provide the consumer of LTSS with more options and choices outside nursing facilities and institutions. It offers states additional federal financial assistance to rebalance the service delivery system away from an institutional bias. As a mandatory benefit in a state’s Medicaid plan, policymakers may have significant concerns about the number of individuals who would seek to apply for the community-based benefits and add costs to the Federal Government and states. The ADAPT proposal does not include cost projections.

The proposal offers no additional policy options to respond to the growing demand for affordable and accessible housing. The ADAPT proposal continues to influence policy debates as to possible approaches for federal financial assistance to follow an individual involved in nursing home traction. The possible strategy of different levels of federal financial participation for support of states that try to rebalance their systems deserves further research on cost and utility.

The following table summarizes the ADAPT recommendations.

Table 3.5. Americans Disabled for Attendant Programs Today

Report/Recommendation: “2003 Legislative Proposal—Medicaid Community Attendant Services and Supports Act,” 2003.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

Focus on changes to Medicaid to expand coverage of home- and community-based services (HCBS). Similar eligibility requirements as currently exist for Medicaid, including financial eligibility and individual determination of need for a level of care provided in a nursing facility or an Intermediate Care Facility for the Mentally Retarded.

The change would be to honor individual preference to receive those services in a community setting. Benefits are expanded to cover assistance with the activity of daily living or instrumental activities of daily living including meal planning and preparation, managing finances, shopping, household chores, and community participation.

Services must be provided in the most integrated setting appropriate to the needs of the individual. Rather than a state plan option or an inclusion as a benefit under an HCBS waiver, the ADAPT proposal would establish a new mandatory plan requirement for all states that choose to participate in the Medicaid program.

A state must establish an extensive quality assurance program to maximize consumer independence and control in both agency-provided and other delivery models. States are offered enhanced financial matching assistance to move ahead with system design and rebalancing.

States are offered additional financial assistance for individuals who participate and for whom costs exceed 50 percent of the average costs of providing nursing facility services to an individual, but who prefers to receive assistance at home or in community settings. Adding a mandatory benefit will provide the eligible population access to needed services not tied to an institutional model in all states. The choice of participation is not left to the discretion of the states if they want to continue to participate in the Medicaid program.

Financial incentives are offered to encourage state participation.

Consumer-directed service planning and implementation is emphasized. A mandated service meets great resistance from federally focused budget analysts and state governments who are cost-sharing partners in the Medicaid program.

There is no consideration of supports from other federal authorities, such as housing and transportation, which are part of a larger framework for discussion of an expanded long-term supports and services system.

Further cost analysis is needed to fully understand the implications of implementation of the ADAPT proposal.

American Association for Retired Persons

AARP is a national nonprofit membership organization. Its membership is diverse, including individuals in their 50s who are working and enjoy a comfortable standard of living as well as those over 80 who are struggling with minimal resources. Each year AARP, with input from its members, develops a set of policy recommendations to help improve economic security, health and LTSS, and independent living. The Policy Book for 2005 offers an analysis of the current environment, articulates a list of principles to frame future policy development, and offers a detailed and comprehensive set of policy recommendations to improve access, availability, and quality of LTSS for individuals in need, regardless of age or income.

AARP’s description of the current environment recognizes that for many Americans, advancing age means an increasing likelihood of chronic illness and disability. However, AARP, utilizing census data, points out that millions of younger adults and children also need LTSS. If a broad functional definition of “disability” is used to include individuals who need assistance with one or more ADLs or IADLs, AARP estimates that 11.5 million individuals of all ages have disabilities severe enough to require LTSS. With the aging of the population over the next 25 years and continued improvements in health care, the class of individuals needing services and supports will grow dramatically. Other factors identified by AARP in the current environment included changing consumer preference for HCBS as a first choice, dependence on unpaid family caregiving, and limited coverage of Medicaid and Medicare with private LTC insurance not filling the void for many individuals in need of assistance because of high cost or adverse selection.

AARP takes a strong position on the need for comprehensive reform and offers 11 principles that should be used to evaluate any new policy proposals.

1. Long-term services and supports should receive adequate public financing through a social insurance program. Under social insurance programs, individuals pay into the system and are subsequently entitled to benefits when they are needed. The costs are spread across an entire population, which is the financing mechanism for Social Security and Medicare.

2. Implementation of a comprehensive public LTSS system should be phased in. Expansion of services requires development of the needed infrastructure, including building the capacity of a workforce to respond to long-term individual support needs.

3. A comprehensive range of LTSS should be guaranteed to all who need them, regardless of age or income. Uniform assessments should determine whether a person meets eligibility criteria for the program, and what type and level of service a person requires. The range of services includes in-home assistance, community services, a full range of supportive housing options, institutional care, rehabilitative services, assistive technology, and assistance with home modifications. Consumer choice and direction should also be key elements of assessment of need and service delivery management.

4. Public LTSS should give meaningful support to family and friends who provide caregiving. Any new national program should support, not necessarily replace, caregiving by family and friends.

5. Private sector insurance should supplement public LTSS financing. Any private sector approach should be subject to strong standards to protect consumers from inadequate products or deceptive marketing practices.

6. Provider payments should be adequate. Reimbursement for services and supports must be reasonable and offer appropriate incentives to deliver quality services and to attract and retain qualified staff.

7. Cost-containment mechanisms should be built into the comprehensive long-term support program. Appropriate mechanisms should promote efficiency in service delivery, tying the amount of benefits to disability levels. However, cost containment should not reduce access to adequate and affordable services and supports.

8. The Federal Government and state governments are responsible for monitoring and ensuring the delivery of quality services. To protect the health and safety of consumers, both levels of government should swiftly and vigorously apply sanctions when needed to enforce laws and regulations concerning the quality of services and supports being provided.

9. LTSS should promote consumer independence, dignity, autonomy, and privacy. The design and delivery of services should promote concepts of consumer choice and direction. The framework for decision making should recognize and support consumer choices to the maximum extent possible.

10. The rights of consumers receiving LTSS should be protected. Consumers receiving services should have a private right of action in court to ensure their rights. The list of protections should include the right to timely information concerning their care, including access to records, the right to keep personal possessions, and the right to express grievance without fear of reprisal.

11. Consumers of LTSS have a right to privacy. Regardless of the long-term service setting, consumers should have private areas for visitation, security protections for personal property, and access to private telephones.

In addition to these principles to help design and evaluate future policy proposals, The Policy Book offers more detailed strategies for consideration by the Federal Government and state government that are divided into six core areas: creating a consumer-directed system, support for family caregivers, expanding HCBS, development of appropriate health and functional criteria, preserving access and quality, and coordination and integration of LTSS.

1. Creating a consumer-directed system. The underlying philosophy presumes that consumers are the experts on their own service needs and that meaningful choice can be introduced into all service environments. As AARP explains it, the potential benefits of consumer direction include cost savings, flexible and more individualized service packages, increased consumer satisfaction with management of service provision, and use of family caregivers, which increases the pool of available providers. Efforts to establish or offer consumer-directed services and supports should include guidelines and standards for care, consumer direction, counseling to assist people in arranging for services, flexibility in selection of providers, and choice to return to traditional agency-directed HCBS. AARP indicates that not everyone may be an appropriate candidate for consumer-directed services. Screening guidelines should be developed with timely grievance and appeal procedures for consumers dissatisfied with, or turned down for, services.

2. Support for family caregivers. AARP recommends that LTSS cover respite care and adult day services that supplement caregiving by family and friends. Five specific proposals suggested by AARP include extending the Family and Medical Leave Act to provide paid leave and cover more workers for longer periods, additional tax benefits to help underwrite some percentage of costs associated with unpaid caregiving, increased funding for the National Family Caregiver Support Program, amending the SSI rules so that they do not reduce benefits for people living with family members, and public education to encourage employers to take advantage of existing tax incentives, such as flexible spending accounts for dependent care.

AARP also suggests that federal and state policies should allow payment to relatives and friends who provide LTSS as part of an individual plan. However, the AARP recommendation does not respond to the concerns of policymakers that such policies will simply shift costs from the individual family to government and not necessarily expand supports in response to individual needs.

3. Expand HCBS. AARP urges the expansion of federal funding for LTSS through multiple federal authorities, including Medicaid, the Older Americans Act, and the Social Services Block Grant (SSBG) program. AARP also recommends more vigorous enforcement of the Americans with Disabilities Act, with more active oversight of state activities to implement plans in response to the Olmstead decision and its community inclusion mandate.

To expand HCBS, AARP describes multiple strategies. There is no single policy option that can produce the comprehensive system of supports that is currently unavailable. Budgets and policies must be designed to eliminate institutional bias and expand access under the HCBS waivers. Specific policy options should allow states more flexibility to set separate eligibility criteria for nursing facility care and waiver options. Other options to be considered include

• enacting laws that ensure nurse delegation to home care workers of certain tasks that provide adequate consumer protection and liability protection;

• initiating nursing home diversion programs with a comprehensive range of services to meet health and functional needs; and

• supporting volunteer service credit banks for expanding access to LTSS. These community services should not be used as alternatives to public responsibility for funding adequate supports.

4. Development of appropriate health and functional criteria. AARP suggests that eligibility for LTSS should be based on functional needs. Appropriate measures should recognize the diversity of the population to assess functional needs of individuals with physical impairments, cognitive impairments, and chronic illness. Eligibility for people with physical disabilities would be based on difficulty in performing two of the five basic ADLs.

5. Preserve access and quality for people with cognitive disabilities. AARP indicates that, despite the high prevalence of cognitive disabilities among nursing home residents, few have access to mental health professionals. The policy approach suggested by AARP is to require cooperative agreements with Area Agencies on Aging and community mental health centers to meet the needs of older people in the community. AARP urges changes in federal requirements for all skilled nursing facilities to include mandatory annual review of changes in the physical and mental condition of mentally ill or mentally retarded nursing facility residents to ensure that they receive necessary treatment and services in the most appropriate care setting.

6. Improve coordination and integration of services and supports. Arranging for appropriate services is a daunting task for most individuals and families. Services and funding are divided among multiple agencies. An essential part of a comprehensive system is effective case management and service coordination. Policy recommendations include

• establishing a single point of entry for people seeking publicly or privately funded services;

• ensuring that case management is available through a community organization that is not a direct service provider (to avoid conflict of interest);

• requesting state certification and annual continuing education for case managers;

• ensuring that individual service plans are based on functional needs, not ability to pay; and

• requiring the development of the plan in partnership with the individual and family, with an emphasis on a person-centered approach.

AARP recognizes that development and implementation of many of the proposed recommendations will be costly. Medicaid and Medicare are the two largest public programs; they account for more than 50 percent of the cost of the current imperfect system of LTSS. Smaller public programs that provide LTSS, such as the Older Americans Act and the SSBG program, account for less than 2 percent of total expenditures on long-term services.

Consistent with AARP principles for development and design of any new proposal for policy reform, an approach to financing must have the government and individuals sharing responsibility. Public financing must be “progressive, broadly based, stable, and capable of growing with enrollment.” AARP supports the development of a publicly financed social insurance program that would have individuals pay into the program and be entitled to benefits defined in law, including a cash payment option, when they need services. Eligibility for this entitlement should be based on functional criteria and “take into account cognitive, physical, and social limitations, and the need for support, supervision, and training.” Although there are no cost projections for this policy framework, AARP explains that the most important way to control costs associated with LTSS is to avoid unnecessary institutionalization by providing HCBS in response to standard individual assessments and individual plans. Other approaches suggested to achieve cost savings include improved data collection to evaluate services and outcomes and cost-effective allocation of resources; global budgeting strategies for states that combine nursing home and community services expenditures into a single pool, which enables a state to rebalance more efficiently the use of public dollars in community settings; and consumer self-directed budgets to manage their own service plans.

In a separate section of The Policy Book, AARP documents that housing is the single largest expenditure category for older households. Housing figures prominently in an individual’s quality of life and, depending on the availability of services and supports, can have a major influence on whether an individual can age in place and remain independent. The rising housing costs and the challenges of linking affordable and accessible housing options with needed long-term supports requires improved coordination of multiple federal, state, and local public agencies that have separate management responsibilities for housing and supported services. AARP recommends that the Department of Housing and Urban Development (HUD) establish a high-level office or senior staff member to develop and coordinate policy on housing and services. Similar high-priority action is needed at CMS to identify strategies to improve coordination with HUD and link affordable housing objectives with access to community-based LTSS.

Of the six national level organizations with policy recommendations to review and analyze, AARP offers the broadest set of strategies to develop a comprehensive system for all Americans who seek to remain independent and in the community. The adoption of the social insurance model to spread costs across the largest number of people to finance a menu of benefits that enhance function and preserve individual freedom and choice offers a framework for reform that requires further research and evaluation. The recognition that there is a public and private responsibility to share risk moves the policy discussion from the narrow focus of Medicaid to the larger context of community and multiple federal authorities with responsibilities for housing, social and human services, and civil rights. The larger context for policy framework also recognizes the need to improve coordination among those federal authorities to develop a seamless, one-stop system that is responsive to the consumer in need of information, access, and user-friendly service delivery options that respect consumer preferences

The following table summarizes the AARP recommendations.

Table 3.6. American Association for Retired Persons

Report/Recommendation: The Policy Book: AARP Policies 2005.

Scope of Approach Eligibility Benefits Coverage System Design Financing Strengths Weaknesses

Comprehensive framework for policy recommendations.

Focus on individuals with defined functional needs over age 50.

Build a social insurance program to spread cost for a comprehensive long-term services and supports (LTSS) system. A comprehensive range of LTSS should be guaranteed to all who need them, regardless of age or income.

Uniform assessment process should determine eligibility for the type and level of services based on functional needs. Range of service includes in-home assistance, community services, a full range of supportive housing options, rehabilitative services, assistive technology, and home modification assistance.

LTSS should provide meaningful support to family and friends who provide caregiving. Comprehensive LTSS should be phased in to allow development of needed infrastructure, including workforce development. Private sector insurance should supplement public LTSS financing.

Framework for decision making should recognize and support consumer choices and direction. Federal and state policies should help underwrite some percentage of costs associated with family caregiving.

Eliminate institutional bias of Medicaid and allow home- and community-based services (HCBS) waivers to have separate eligibility for home and community services. Improve coordination among federal authorities. At a local level, improve case management and service coordination with a single point of entry.

At a federal level, require senior lead staff at Department of Housing and Urban Development (HUD) and Centers for Medicare and Medicaid Services (CMS) to work together to improve coordination between housing and services. Improve federal monitoring of response of states to Olmstead mandate. Public financing must be progressive, broadly based, stable, and capable of growing with enrollment.

Establish a publicly financed social insurance program that would have all wage earners pay into a system and then be entitled to benefits defined in law, including the choice to self-direct a service management plan.

To control costs, eliminate the institutional bias of Medicaid, encourage global budgeting by states, and improve data collection to evaluate services and outcomes in different settings with consumer-directed budgets. Offers the broadest set of strategies to advance a comprehensive LTSS system.

Adoption of social insurance model would spread costs and provide cost-sharing with a large pool of participants who will need benefits at different levels in the future.

Recognition of need for increased funding under other federal authorities, including HUD, the Justice Department, and the Administration on Aging, to expand other needed supports and oversight of civil rights protections.

Recognizes the need to improve system coordination at a federal, state, and local level through shared information systems, one-stop resource centers, and agreement on assessment approaches to determine need to be matched with public and private resources. Need for further analysis of costs with a social insurance model based on different assumptions about cost allocation with individual and family responsibility, government support at a federal and state level, and possible role of private insurance.

Need to develop additional core elements of such an approach and analyze its impact on current federal authorities based on eligibility and benefits coverage.

Part III

Expert Panel Discussion and Recommendations

On February 24, the National Disability Institute of the NCB Development Corporation, in concert with the National Council of State Legislatures (NCSL), convened an Expert Panel to discuss the current state of federal policy concerning LTSS for people with disabilities and a possible framework for future policy recommendations. The panel members represented diverse experience and expertise regarding consumer choice and control; formal and informal caregiving; the support options available under Medicaid, Medicare, and other social service funding streams; the relationships between federal policy and state reform efforts; aging and disability service delivery; individual budgets; and risk management.

The panel was convened to provide advice to NCD and to produce new knowledge and understanding of current experience with, and future need for, affordable LTSS nationwide for Americans with disabilities of all ages.

There were two parts to the discussion with panel members. The first part of the discussion was reactions to research findings on the current state of LTSS for individuals with disabilities, both above and below the age of 65. The second part of the discussion was to provide advice and recommendations on future policy development to establish a comprehensive system of HCBS that enable individuals with disabilities to have expanded choice and direction to live independently and with dignity.

The findings from the first phase of research on current federal experience were summarized for the panel. Key findings identified were the fragmentation of service delivery; inconsistent policy with an institutional bias; and variance of access to needed supports based on age, income, type of disability, and geography. The challenges of program coordination resulted from separate and distinct authorities across the Federal Government having responsibility for program rules on eligibility and scope of benefits coverage. The complexity and fragmentation in the legislative branch also made it difficult to bring together responsible federal authorities for oversight and produce consensus for further policy development. In a post-Olmstead environment, state budget pressure and federal discretionary grants are significant factors accelerating state interest in reexamining infrastructures, the budget process, consumer-directed service delivery, cross-agency and intergenerational collaboration, and public and private partnerships. The pace of change varies by state and perception of progress with comprehensive reform and realignment of systems to enhance consumer choice, and direction varies by stakeholder class. Litigation continues in over half the states as people with disabilities challenge the pace of change, with particular focus on realignment of resources to support expansion of home and community choices.

The discussion by the panel of current challenges reaffirmed the scope of issues identified in the research on current experience. The public policy discussion of private individual accounts for younger workers has heightened interest in, and evaluation of, who is responsible for long-term needs and what they will cost. Beyond discussions of an entitlement to retirement income, is there a public responsibility to vulnerable populations for LTSS? What are the dividing lines between public and family responsibility? The Expert Panel did agree that current federal and state budget obligations and future projections will intensify the need to reexamine the current approach to support of HCBS. Demographic changes will continue to add further stress on the role of the public system, as fewer caregivers will be available to support unpaid caregiving within a family. Panel members described the current system as

• not working effectively for many individuals with disabilities and their families;

• inconsistent in scope with significant variability across states;

• dominated by an institutional bias that defines the policy framework;

• fragmented;

• impacting budgets as costs are growing with increasing demand from diverse stakeholders;

• forcing individuals and families to be impoverished to be eligible for benefits;

• inflexible;

• limiting individual choices;

• complex;

• confusing;

• divisive as groups compete for resources;

• devaluing; and

• out of balance, as waivered services and supports are optional and not required.

There was agreement that the current picture cannot be ignored. The range of challenges is intergenerational, as more individuals and families seek public assistance to remain independent with LTSS. The lack of community options and the costs are overwhelming individuals and families who seek alternatives to skilled nursing facilities. Changing expectations of aging baby boomers will compel policymakers to ask new questions:

• Are we investing in the right things?

• Do we understand enough about the costs of HCBS to make an economic argument for policy change?

• Do we need to look beyond a budget rationale to adoption of a critical principle for future public policy development that supports living independently at any cost?

There was agreement from the panel that additional research is needed to understand more about the full set of costs of living at home or in the community and what cost savings, if any, are possible from nursing home diversion. Additional questions were raised about the cost savings achieved from family support and informal caregiving. Concern was expressed about some states and projects that are using a consumer-directed individual budget approach to long-term supports as a strategy to reduce individual and systems expenditures. There was general agreement that policy development that uses a cost-savings rationale for expansion of LTSS must proceed with caution. More needs to be learned about the relationship between paid and informal caregiving and the cost benefits of consumer-directed individual budgets as the management structure for service delivery.

Panel members cited current demonstration projects funded by CMS and the Administration on Aging that will help policymakers and other future stakeholders learn more about the costs and benefits of consumer-directed service delivery. Other demonstration initiatives, such as the ADRC and Workforce Development projects, were identified to help key stakeholders increase their understanding about the cost benefits of streamlined access to information and services, improved coordination of supports and services, and workforce skill development and retention.

The second part of the discussion followed a summary of specific state efforts at innovation related to service delivery, financing, and consumer choice. Participants were asked to frame a new picture that sets out a different set of expectations for all Americans and that recognizes disability as a natural part of human experience. The panel members offered multiple strategies for systems change.

The majority of suggestions affirmed recommendations from one or more of the six organizations that are reviewed and analyzed in the first part of this chapter. The overwhelming agreement of the panel was to create a policy framework that recognizes the important and essential federal responsibility to contribute public resources and that sets consistent expectations for states to establish a comprehensive system. Such a system of supports must respond to the long-term support needs of the target population over a life span, in the least restrictive environment.

Recommendations from the panel focused on the essential elements of a comprehensive system, including eligibility, benefits coverage, infrastructure, and financing.

• Determine eligibility based on functional need. The panel urged movement away from current medical status and disability type to a standardized assessment process to evaluate functional needs related to ADLs and IADLs.

• Reevaluate financial eligibility criteria. Although not specific with what would be an appropriate income and asset test, the current threshold, which in effect requires individuals and families to spend all assets to be eligible for Medicaid, must be changed.

• Develop an expanded benefits menu that organizes service options from a presumption of individual preference for remaining at home and in community settings. The panel, without describing benefits coverage in more detail, recognized that different people have different needs. As a result, the benefits coverage based on functional assessment must be flexible, individualized, and comprehensive. Nursing home level of care should be removed from an entitlement status to an option of last resort.

• Offer more consumer choice and direction in determining needs, creating a service plan, and directing and managing provider selection and service delivery. The panel suggested that all eligible consumers have a choice to direct an individual budget as an alternative to traditional agency direction of services.

• Provide incentives to support and encourage family caregiving. Consider tax incentives to help defray expenses of dependent care for LTSS.

• Reach agreement across federal authorities on key outcomes and a measurement system. Shared information and data collection and analysis across agencies in multiple settings should help improve understanding of cost-effectiveness based on different service delivery models. Outcomes to be focused on performance are wellness, productivity, inclusion, and independence.

• Spread the cost across all wage earners over a lifetime as part of a social insurance financing framework. Similar to the approach of Social Security and Medicare, individual needs will vary over a life span. However, there is a basic safety net to help with the sharing of costs for a comprehensive system. The panel did not develop the specifics of such a proposal. Further research would be needed to calculate individual cost scenarios and system capacity to respond.

The panel did not expect to reach an agreement in one meeting on the details of a social insurance solution. There was a sense in the group that, during the next five years, policymakers will struggle with multiple options to improve the current system in response to increasing demand. Rather than predict the range of policy options to be considered, the panel suggested a framework to evaluate any future proposal. The beginning framework is a set of questions, or lenses, through which to evaluate future policy proposals.

Any new proposals to reform Medicaid and Medicare should be evaluated from an impact perspective on low-income individuals with disabilities. States should be able to modify asset and income lists to determine eligibility for a menu of LTSS.

Any reform proposal must be evaluated to determine the following:

• Does it simplify and expand eligibility?

• Does it improve coordination, access, and choice?

• Does it compel states to rebalance institutional and HCBS systems?

• Does it allow states to set financial and functional criteria for eligibility?

• Does it encourage families to continue informal caregiving through tax incentives and mandated family leave benefits?

• Does it encourage multiple points of entry and informed decision making on support options?

• Does it encourage consumer direction and offer the option of management of individual budgets?

• Does it favor one group over another because of age or functions?

• Does its approach to financing reduce eligibility or benefit coverage?

• Does the approach to financing spread risk and costs across a larger population to help reduce individual liability and spread costs across multiple shareholders in an equitable way to minimize adverse impact on individuals because of age, disability, location, or income status?

Part IV

Conclusion

In a new report of the U.S. Government Accountability Office (GAO), entitled “21st Century Challenges: Reexamining the Base of the Federal Government,” major emerging forces are identified that will require the Federal Government to rethink its entire approach to policy design, priorities, and management. According to David Walker, Comptroller General of the United States, “There is a daunting long-term fiscal outlook.” Competing demands from existing federal entitlements—Social Security, Medicaid and Medicare, and other federal commitments to respond to the nation’s global war against terrorism and homeland security needs—present only a partial picture of expected federal spending in the future. Government spending continues to increase across the board as the federal role has grown in addressing a wide range of needs. The growing imbalance between expected federal spending and tax revenues will ultimately require the nation to decide what level of federal benefits and spending it wants for which segments of the American population, and how it will pay for these benefits.

According to the GAO report, one of the significant forces that will place new demands on government in the future is an aging and more diverse population. An additional significant force is the rapid pace of change in science and technology, which offers new opportunities to maintain function and independence. However, these advances raise their own unique vulnerabilities, risks, and privacy and equity concerns. These and other cited trends—evolving foreign policy, a changing economy, build-up of homeland security, growing federal deficit, and increasing divide between rich and poor—will cause policymakers to conclude that all the government’s existing programs, policies, and activities cannot continue as “givens.” GAO concludes that many of the government’s programs were designed decades ago to address earlier challenges informed by life expectancies, health conditions, organizational structures, technologies, and management models of prior eras. GAO offers policymakers and the American people a set of questions to help address what the Federal Government does and how it does it. Key questions include the following:

• Is the federal role warranted?

• Are benefits targeted to those most in need?

• Is it affordable and sustainable over time?

• Are policies consistent with best practice?

• How do we measure success?

• Are all applicable costs and benefits being considered?

The lens offered by the Expert Panel takes a very similar approach to that of the GAO. Evaluation of current federal programs and policies—as well as future proposals to transform the government’s role as a funder, provider, and manager of a comprehensive system of LTSS for people with disabilities—must consider relevance and responsiveness to changing demands and consumer preferences. The Expert Panel and six organizations representing diverse stakeholder interests within and outside government all agree that there is a need for a fundamental federal presence to offer expanded financial assistance that is adequate to support a growing population as it lives with maximum independence and dignity at home and in community settings. There is an equally strong concurrence of opinion that, for low-income members of the target population and for individuals with significant disabilities, the private markets and state and local governments will not be able to respond to the demand and cost of LTSS without the Federal Government playing a role as a funder.

There are differences of opinion among the analyzed groups as to the scope of benefits, the interrelationships of existing federal authorities, and how and to whom to allocate costs. Most promising for future policy development is the extent of interest in increasing consumer protection in an assessment process to determine functional need; to develop an individualized service plan; to have a choice of service environments and providers; and to control, if interested and appropriate, an individual budget. All groups and the Expert Panel agree that current Medicaid policy, with its institution bias, must end, but they disagree about the extent of flexibility states would be allowed to exercise to define eligibility, benefits coverage, service provider options, and cost-sharing.

The majority of the groups and the Expert Panel express strong support for improving access and information to the target population about program eligibility and available public and private resources. There is also strong support for assisting families with some tax relief to reduce expenses of informal caregiving, and to expand respite care options to provide further assistance to individuals and families engaged, in some way, in meeting the support needs of individuals with disabilities.

The combined number of recommendations for future policy development offered totals more than 40. Although the strategies proposed would most directly affect the Medicaid and Medicare programs and CMS, other federal authorities that would be affected are the Administration on Aging, Social Security Administration, and the Departments of Labor, Treasury, and Justice. Most recommendations require additional research that would project costs for specific program amendments. The analysis of this body of recommendations helps underscore differences of opinion about targeted versus more comprehensive strategies. It is apparent, however, that the longer we wait, the more painful and difficult the choices will become.

APPENDIX 3.A

Advisory Panel: Participants and Contributors

Long-Term Supports and Services

Expert Panel Participants

February 24, 2005

Washington, DC

* In attendance

* Lisa Maria B. Alecxih, Vice President

Center on Long Term Care

Lewin Group

3130 Fairview Park Drive, Suite 800

Falls Church, VA 22042

Lisa.alecxih@lewin.com

703-269-5542

703-269-5503 FAX

* Elizabeth Clemmer, Assistant Director

AARP Public Policy Institute

601 E. Street, NW

Washington, DC 20049

eclemmer@aarp.org

202-434-3840

* Sue Christmas

Topeka Independent Living Resource Center

501 SW Jackson Street

Topeka, Kansas 66603

schristmas@tilrc.org

785-233-4572

* Jeff Crowley, Project Director/Senior Researcher

Institute for Health Care Research and Policy

Georgetown University

2233 Wisconsin Avenue, NW, Suite 525

Washington, DC 20007

Jsc26@georgetown.edu

202-687-0880

* Steve Edelstein, Policy Specialist

Paraprofessional Healthcare Institute

349 East 149th Street, 10th Floor

Bronx, NY 10451

edelstein@paraprofessional.org

718-402-7413

* Jackie Golden

2626 Wendover Road

Parkville, MD 21234

jlgolden@comcast.net

410-262-1276

410-882-2080 FAX

Lynn Feinberg, MSW

Deputy Director, National Center on Caregiving

Family Caregiver Alliance

180 Montgomery Street, Suite 1100

San Francisco, CA 94104

lfeinberg@caregiver.org

www.caregiver.org

415-434-3388

415-434-3508 FAX

Patrick Flood, Commissioner

Vermont Department of Aging and Disabilities

103 South Main Street

Waterbury, VT 05671

Patrick@dad.state.vt.us

802-241-2400

802-241-2325 FAX

* Marty Ford, Director of Legal Advocacy

The Arc and UCP Disability Policy Collaboration

1660 L Street, NW, Suite 701

Washington, DC 20036

ford@thearc.org

www.thearc.org

www.ucp.org

202-783-2229

202-783-8250 FAX

Suellen Galbraith, Director Government Relations

American Network of Community Options and Resources

1101 King Street, Suite 380

Alexandria, VA 22314

sgalbraith@ancor.org

703-535-7850

703-535-7860 FAX

Linda Horton, Director of Community Relations

AIDS Alliance

lhorton@aids-alliance.org

Gail Hunt, President and CEO

National Alliance for Caregiving

4720 Montgomery Lane, 5th Floor

Bethesda, MD 20814

gailhunt@caregiving.org

301-718-8444

* Allen Jensen, Director

Work Incentives Project

Center for Health Services Research and Policy

George Washington University

ihoacj@gwumc.edu

202-530-2319

LaRhae Knatterud, Planning Director

Department of Human Services

444 Lafayette Road North

Saint Paul, MN 55155

Larhae.knatterud@state.mn.us

651-296-2062

* Chas Mosley

National Association of State Directors of Developmental Disabilities

Services (NASDDDS)

113 Oronoco Street

Alexandria, VA 22314

cmoseley@nasdds.org

703-683-4202

703-683-8773 or 703-684-1395 FAX

* Brenda Premo, Director

Center for Disability Issues and Health Care Professions

Western University of Health Sciences

309 E. Second Street/College Plaza

Pomona, CA 91766

bpremo@westernu.edu

909-469-5385

Debra Stone

P.O. Box 367

Goshen, NH 03752

Deborah.stone@dartmouth.edu

603-863-5653

603-863-8114 FAX

* Eileen Sweeney, Senior Fellow

Center on Budget and Policy Priorities

820 First Street, NE, Suite 510

Washington, DC 20002

Sweeney@cbpp.org

202-408-1080

202-408-1056 FAX

Hollis Turnham, Michigan Policy Director

Paraprofessional Healthcare Institute

5013 Applewood Drive

Lansing, MI 48917

hollis@paraprofessional.org

www.paraprofessional.org

www.directcareclearinghouse.org

517-327-0331

260-846-5347 FAX

* Tony Young, Executive Director

NISH

8401 Old Courthouse Road

Vienna, Virginia 22182

tyoung@nish.org

571-226-4660

703-849-8916 FAX

info@nish.org

Project Staff

Michael Morris, Director

National Disability Institute

NCB Development Corporation

1725 Eye Street, NW, Suite 60

Washington, DC 20006

and

Associate Director

Law, Health Policy & Disability Center

University of Iowa College of Law

mmorris@ncbdc.org

202-521-2930

202-218-7297 FAX

Johnette Hartnett, Vice President

NCB Development Corporation

National Disability Institute

1725 Eye Street, NW, Suite 600

Washington, DC 20006

and

Law, Health Policy, & Disability Center

University of Iowa College of Law

jhartnett@ncbdc.org

202-218-7284

202-218-7297 FAX

Donna Folkemer, Program Manager

National Conference of State Legislatures

444 North Capitol Street, NW, Suite 515

Washington, DC 20001

donna.folkemer@ncsl.org

202-624-5400

National Council on Disability

Martin Gould, Director of Research and Technology

National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

mgould@ncd.gov

202-272-2004

202-272-2022 FAX

Jeff Rosen, General Counsel/Director of Policy

National Council on Disability

1331 F Street, NW, Suite 850

Washington, DC 20004

jrosen@ncd.gov

202-272-2124

202-272-2022 FAX