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Office on Disability

Appendix B
Office on Disability
Department of Health and Human Services

Constituency Expert Input Meeting
Comments of Constituent Organizations and CMS Administrator McClellan
February 22, 2005

The material that follows details the issues raised and solutions proposed by each constituent organization as well as the comments on each (if provided) by Centers for Medicare and Medicaid Administrator Mark McClellan, MD.

American Association of Homes and Services for the Aging (AAHSA)

Issue: AAHSA is concerned about state budget crises and the potential adverse impact on State Medicaid plan coverage for persons with disabilities and, critically, for persons with disabilities who are uninsured and above the Medicaid threshold. A similar concern arises with respect to the effect of State budget crises on state rehabilitation services funds.


  • Support the creation of insurance pools to cover persons with disabilities who are uninsured but who do not qualify for coverage under State Medicaid plans.

CMS Response: Difficult financial times for States can be made less difficult by having the money follow the person into community-based services instead of institutional care, by creating methodologies for uninsured persons with disabilities to obtain low-cost private insurance, and by implementing best practices in performance under Medicaid that yield results. CMS plans to build on demonstrated positive outcomes from the 10-state “Money Follows the Person” demonstrations that focus on self-determination and community-based care.

American Association of People with Disabilities

Issue: Both the continuity of care available in communities for persons with disabilities and the quality of that care are of paramount importance.


  • Medicaid reform should emphasize the principles of continuity of high-quality, effective and integrated community-based care for persons with disabilities.

American Disabled for Attendant Programs Today (ADAPT)

Issue:ADAPT supports legislation, the Medicaid Community Attendant Services and Supports Act (MICASSA) that promotes community-based options for all persons with disabilities. The legislation, introduced in the 109th Congress, would establish a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability under the Medicaid program. It promotes the concept of money following the individual, and allows Medicaid-eligible individuals, or their representatives, to choose where they would receive services and supports.


  • HHS should endorse the Medicaid Community-based Attendant Services and Supports Act (MICASSA) as a critical ingredient of community-based care, central to the President’s New Freedom Initiative and the intent of the Supreme Court’s Olmstead decision.

ANCOR [American Network: Community Options for Resources]


  • The concept of Medicaid waivers for community-based care is laudable; however, many States do not engage consumers and providers in the planning process on areas in which waivers might be the most productive to improve access to services, quality and continuity of care. It is difficult to obtain access to community-based services, even those most critically needed by consumers, if the particular service is not included in the State’s Medicaid plan, waiver or demonstration.
  • From the provider perspective, one of the most critical issues is maintaining the viability of providers in difficult economic times. One way to use limited resources more wisely is to provide better screening for secondary health problems in persons with disabilities. One model is the collaboration being undertaken with the Georgetown University School of Nursing to develop and test appropriate screening tools for gynecological issues for women with developmental disabilities.
  • While performance measures are a welcome mechanism to help improve the quality of care and to identify system gaps that need to be filled, they will only point to and not resolve the current workforce crisis for direct care workers. This is especially of concern for the 43 million uninsured persons for whom Medicaid represents a health safety net. Until steps are taken to help resolve the manpower crisis, the concept of access to community-based care will not be fully realized in many communities for persons with disabilities. Better ways to improve reimbursement rates need to be found to buttress the current low-paid workforce. Today, reimbursement rates are insufficient to provide incentives for providers to engage – continues to drive direct support worker shortage.


  • Persons with disabilities and concerned providers must be included, as required by Medicaid, as part of the decision-makers at the State level regarding the scope and content of proposed Medicaid waivers.
  • Reimbursement rates need to be reassessed and realigned to better provide incentives for people to enter and remain in the direct support workforce.
  • Effective tools, such as appropriate early screening, that can help reduce longer-term costs of illnesses for persons with disabilities, should be identified and utilized. The use of such tools should be part of performance measurement.

CMS Response: Some states are doing a better job of bringing persons with disabilities to the policy-making and planning table on issues of state Medicaid plans, waivers or demonstration programs; most could do better. One of the best ways to improve the situation is through the use of performance measures. If a state isn’t providing what Medicaid beneficiaries need, performance measures will show it; states will need to shift to programs that work better for the people they are intended to serve.

The ARC of America and United Cerebral Palsy:

Issue: Medicaid is a key priority issue for persons with disabilities. Because services for persons with disabilities are optional under State Medicaid plans, States may seek to change the amount, duration and scope of these optional services included in State Medicaid plans to hold down costs. This could have a negative effect on persons with disabilities. Further, the timing for implementation of and individual selection of drug plans under the new Medicare Part D drug benefit could pose particular difficulties for continuity of care for persons with disabilities who have dual Medicare-Medicaid eligibility. Of particular concern are the approximately 700,000 persons with cognitive impairments with such eligibility.


  • Persons with disabilities should be educated about and enrolled in Part D plans rapidly and appropriately to ensure continuity of care.
  • Increased State flexibility under Medicaid should not result in reductions in the amount, duration and scope of services for optional populations, including persons with disabilities.

CMS Response: CMS is using and will enhance the use of constituency organizations to better educate persons with disabilities about the Medicare Part D drug benefit, how to choose the best plan, understand the appeals process and deadlines that must be observed. Specifically, CMS is working to partner with many outside organizations to educate and enroll beneficiaries in the new drug benefit as part of our Medicare outreach campaign. Organizations interested in partnering and learning more about the campaign should contact CMS directly.

Association of University Centers on Disability (AUCD):

Issue: A lack of health care coverage has a significant impact on the availability of formal and informal caregivers who may be key to supporting community-based living for persons with disabilities. Caregiving responsibilities may result in loss of a job and health care coverage for informal caregivers, such as family members, resulting in loss of coverage for the persons with disabilities in their care. A safety net program is needed, particularly for middle income persons with a family member with a disability who don’t qualify for Medicaid. The continuity of care for the family member with a disability can be interrupted unnecessarily when private coverage is lost. Further, many formal caregivers are lower-income workers and also need health insurance. This latter situation has a negative impact on the total number of community-based caregivers available to serve the needs of persons with disabilities in their communities.


  • Mechanisms need to be developed to provide health insurance coverage for formal and informal caregivers and to ensure continuity of care for persons with disabilities who lose private insurance coverage through their family member(s).

CMS Response: CMS has been considering encouraging States to create “insurance pools” using State uncompensated care funds that would enable currently uninsured individuals, including persons with disabilities, to purchase health insurance at reduced costs. With greater emphasis on community-based care and less on institutional care, savings could be redirected to cover these populations. By having the “money follow the person” under Medicaid, providers will need to be prepared for a paradigm shift in which the Medicaid recipient uses the program to choose and purchase the full range of services they need and not have services availability be directed solely by covered providers.

Easter Seals

Issue: To achieve quality of living, beneficiaries need to be better educated about service availability and continuity to help them make smart long-term decisions about their health. At the same time, the quality of life for persons with disabilities is affected directly by the availability of home and community-based services which, in turn, are affected by the content of State Medicaid plans and the availability of waivers for community-based care. This requires decision making at the state level and benefits from community-based pilot projects at the Federal level.


  • States should promote community-based living and an enhanced quality of life for persons with disabilities by continuing to cover optional services for both disabilities and the disorders that give rise to them under Medicaid.
  • Beneficiaries should be provided with full information about their options under Medicaid to promote smart long-term decision making about their service needs.

CMS Response: CMS supports the importance of individual control over support and service needs and the need for better health outcomes for the people Medicaid serves. Studies at both Rutgers and Boston Universities show the benefits of moving persons with disabilities into community-based care and services. Through its waivers and demonstration programs, Medicaid is providing greater flexibility to achieve better outcomes in terms of both quality and performance. CMS, increasingly, will emphasize the identification and use of known-effective practices, coupled with positive individual and economic outcomes by States. CMS is working to identify performance measures for such indicators including beneficiary satisfaction and enhanced quality of life

Goodwill Industries

Issue: The current public health and social support system – Medicaid, Medicare, Supplemental Security Income, etc. – often works to the disadvantage of individuals with disabilities who want to work. Persons with disabilities often find themselves better off economically if they do not work and continue to receive Medicare/Medicaid and Social Security Disability Insurance benefits than they would by accepting and undertaking a job with low pay and limited private insurance. Similarly, when an individual with a disability rotates in and out of employment, neither the Medicaid and SSI program is structured to be responsive to cyclical periods of service need.


  • Identify models that can better enable persons with disabilities the option to work without degradation of needed health care coverage, such as providing incentives to work under Medicaid for persons with disabilities who choose to attempt work by facilitating continuity of care by supplementing private insurance coverage.

Hudson Valley United Cerebral Palsy Association


  • One of the key issues is who has the real responsibility for care issues under Medicaid. The answer is simple: providers. Because States don’t often have the capacity to assess the quality of that care, CMS – at the Federal level – should provide oversight of Medicaid provider performance and results. Providers would achieve a performance/results orientation if given greater flexibility in the scope of services they can provide under Medicaid funding without the requirement for a State waiver would help promote better performance/results orientation. Today, services that a practitioner believes important to provide for good community-based care are not always “doable” in a State that hasn’t granted a waiver for a particularly needed service.
  • Doctors receive approximately 15% of all health care reimbursements, but are responsible for approximately 70% of all costs (e.g., use of equipment and testing). There is more than enough money in the system to support services; the issue is how reimbursement occurs. For example, a physician providing a 30 minute consultation to manage a range of secondary health issues for a person with a disability is reimbursed at a rate far below that for a 2-minute procedure using durable medical equipment that is wholly owned by the medical practice.
  • Quality is hard to measure since existing parameters and benchmarks don’t really assess quality of care from the patient’s perspective or from the system’s perspective. The public needs to know what they are purchasing.


  • To foster an environment that supports best practices, quality of care, and positive outcomes, greater program flexibility not dependent on the approval of State Medicaid waivers, should be promoted.
  • Medicaid should require providers to adhere to the concepts of good quality care at lower prices as a matter of practice, not just as a demonstration program.
  • Because States are not always able to do so, CMS should provide oversight of provider performance and results under Medicaid.
  • Reimbursement rates for community-based provider services should be reassessed and realigned to emphasize performance-based outcomes rather than current payment based on office visit and use of durable medical equipment and procedures.

CMS Response: CMS believes that it is important to undertake broad-based demonstrations to identify the utility of and structure of methodologies for providing performance incentives for Medicaid providers with high-quality patient-based outcomes. Technology and procedures may be overutilized under today’s reimbursement system; CMS is looking at ways to change that. One of those approaches is through the greater emphasis on quality and performance indicators that demonstrate consumer satisfaction and positive outcome. Under current law, Medicaid is a Federal-State partnership in which the role of the Federal government is to finance Medicaid and to ensure that its governing laws and regulations are being met. Outcomes that work for the people Medicaid is intended to serve are important elements to be considered in that equation.

National Apostolate for Inclusion Ministry

Issue: Many persons with developmental disabilities and other intellectual disabilities are not aware of their Medicaid benefits, including drug coverage under Part D for those who are dual-eligibles.


  • Develop appropriate Public Service Announcements, targeting persons with developmental and intellectual disabilities to help educate them about their benefits under Medicaid and, as appropriate, under Part D medication coverage.

CMS Response: CMS acknowledges the ongoing need to educate persons with disabilities about their benefits under Medicaid and Medicare’s Part D coverage, and encourages constituency organizations to join in this effort.

National Association of State Mental Health Program Directors (NASMHPD)

Issue: The mental health field is particularly concerned about Part D Medicare drug benefits and the effect they may have on medication regimens for persons with serious mental illnesses, the vast majority of whom are dual-eligibles. More guidance is needed to help current beneficiaries plan for this change to ensure that both currently prescribed medications and conversion to Part D do not become matters of concern to them. Changes in the current approach to targeted case management—intended to help realize cost savings—would potentially have an adverse effect on approximately half of all States.


  • Ensure full education for dual-eligible persons with serious mental illnesses about their Part D drug coverage; further ensure that there will be no change in medication regimens for these individuals as a result of formulary decisions related to new generations of psychotropic or other medications.

CMS Response: With respect to the Part D conversion, NSMHPD and State mental health program directors have an important role as CMS works to educate dual-eligibles about the conversion of their drug benefits to Medicare. Mental health providers and disability constituency organizations are encouraged to help in the process to better enable persons with mental illnesses who are dual-eligible to be able to choose the best plan for them, and to meet enrollment deadlines.

With respect to targeted case management, some savings can be realized due to changes CMS is proposing in targeted case management, but, at the same time, dollars are being proposed to be added to promote “money follows the person,” community alternatives to children’s residential treatment facilities, respite care for caregivers, state purchasing pools for low-income individuals to purchase private insurance, among other benefits for persons with disabilities and their families. These proposals are consistent with the President’s New Freedom Initiative.

National Association of State Units on Aging

Issue: It is important to remember how older adults think when addressing issues of disability. Most do not accept the term “disability” as appropriate to them, despite the fact that they may have acquired one or more disabilities of some sort during their lifetimes. Existing aging networks serving older adults should be engaged to help better educate older adults about disability issues. Current HHS-related programs that work for older adults should be continued, such as caregiver services, home-delivered meals, etc.


  • Promote increased understanding of older adults about disability issues by linking existing aging networks and programs with disability-related programs and services, perhaps by issuing an Executive Order.

National Catholic Partnership on Disability

Issue: The NCPD supports the ongoing CMS demonstration project on family-centered respite care

that can help facilitate community-based care under Medicaid for persons with disabilities. However, while this demonstration and others that refocus Medicaid on community-based services are of significant importance and benefit to persons with disability, the question is whether their goals can be achieved given the potential for budget cuts in Medicaid at the Federal and State levels. It is not clear whether sufficient funds will be available to support needed access to the full range of integrated services and supports to achieve high-quality community-based living for persons with disabilities.


  • Continue to support the respite care demonstration project that can help families help family members with disabilities remain in the community for services and care.
  • Ensure that Medicaid finding is available to support fully integrated, individualized, and community-based care for persons with disabilities.

CMS Response: Demonstrations are a central part of changing the institutional bias in Medicaid; they can help demonstrate what works best to achieve positive outcomes in community-based care. They also can help identify cost offsets in other areas that can promote and support increased benefits and community-based options. Effective community-based care is less expensive and addresses the core goals of the President’s New Freedom Initiative, which can enable Medicaid to cover a greater number of people with high-quality care. Where costs savings can be realized is not in program benefits, but rather in how Medicaid pays for medications (moving toward Medicare’s more competitive pricing mechanism), in assets transfers and in intergovernmental transfers. Savings also can be realized to the benefit of community-based care by selecting the most effective practices with the best known outcomes. With the savings, increased numbers of persons can be covered. For example, a Medicaid Section 1115 waiver in Massachusetts is providing health care coverage for approximately 800,000 persons who are uninsured, unemployed, as well as for working and non-working persons with disabilities who otherwise would have to be covered under the State uncompensated care program.

National Council for Independent Living (NCIL)

Issue: While the concept of more flexible services that follow the individual with a disability is laudable, it is critical, in fiscally hard times, to ensure that flexibility does not lead to changes in amount, duration and scope of services available to disabled populations now covered as “optional services” in State plans. Some clear way of safeguarding existing coverage is needed, perhaps by granting greater flexibility when States demonstrate quality performance against specific performance measures, including “customer” satisfaction. It would be helpful to explore how States can be encouraged to look at new directions in service delivery rather than relying on traditional medical approaches that may not provide the flexibility from which individual persons with disabilities may benefit the most.


  • Identify mechanisms to promote (and perhaps reward) innovation in performance by linking opportunities for greater state flexibility to high-quality services as measured by performance indicators meaningful to persons with disabilities.

CMS Response: To get better access to the full range of care needs for persons with disabilities, greater flexibility in the Medicaid program is needed. However, access alone is not sufficient; that access must lead to effective practices that yield better results for the Medicaid recipient. The proposed changes in Medicaid are NOT about cutting benefits or diminishing access to care; rather, the proposed changes are about demanding accountability for the provision of high quality services, especially the kinds of services that people need. Thus, CMS concurs that flexibility must be matched with better performance. The example comparing the utilization of community-based long-term care supports and services in New Hampshire and Vermont illustrates what can be done when one state both performs and provides the kinds of services that persons with disabilities can best use. Vermont has a highly developed home and community-based health care system. New Hampshire continues to rely on institutional care. In Vermont, 85% of Medicaid population over 65 still lives at home. In New Hampshire, only half can live at home. And Vermont spends less than half as much per elderly person on Medicaid as New Hampshire, permitting more people to get better results. The focus needs to be on meeting performance goals such as (1) customer satisfaction; (2) number of persons served; (3) equity in care for all (with dignity, NFI values, in the community).

National Mental Health Association (NMHA)

Issue: Modeling public insurance programs on private sector models today poses a potentially serious problem for persons with mental disorders. The private model does not work, since caps are placed on coverage for the treatment of mental illnesses. When that cap is reached, persons with mental illnesses lose their coverage. Legislation to require parity in coverage for mental illnesses is stalled. Were Medicaid State plans to follow private health insurance models, the concern for persons with mental illness relates to their continuity of care when “Money Follows the Person” funding runs out. The concept of a “personal health care account” is also troubling, since it is unclear what would happen when that fixed pot of funding available for health care runs out for someone living with serious mental illness.


  • Ensure that State Medicaid plans and/or waivers include coverage for persons with mental disabilities at the same rates as those for other disabilities and illnesses.
  • Do not adopt private-sector models of coverage that do not provide equity in coverage for persons with mental disorders.

CMS Response: CMS concurs that there are potential liabilities associated with adopting a private sector coverage model, particularly for persons with mental illnesses. The goal is not to provide Medicaid recipients “a check and a phonebook” instead of integrated community-based care, which should be the standard, and not require States to request waivers. CMS is looking at the effectiveness of Medicare’s chronic care plan demonstrations to determine if the Medicaid program could benefit from lessons about that program’s models.

National Multiple Sclerosis Society

Issue: It is important to ensure ongoing access not only to integrated community-based care, but also to other forms of long-term care for persons with the most serious disabilities. It is similarly important to provide caregiver relief through community-based respite care services and programs. The Society will be pleased to work with CMS regional offices to help promote access for dual-eligible consumers to the necessary Part D information to enable them to make informed choices of drug plans.


  • CMS should develop and disseminate Public Service Announcements of appropriate content to better educate persons with disabilities about their benefits under Medicaid and, as appropriate, under Part D medication coverage.
  • Respite services should be readily available for family caregivers to promote community-based living for family members with disabilities. CMS should continue to support the respite care demonstration project that helps families help family members with disabilities remain in the community for services and care.
  • Integrated community-based care for persons with disabilities should include a continuum of services, promoting the broadest array of options for individual self-determination regarding care and services.

CMS Response: To implement Part D the right way, educated consumers are a key part of the solution. Outreach to all persons who are dual-eligibles and education about the Part D benefit in ways that are readily understood and acted upon are critical. Organizations such as the MS Society and all organizations represented at this meeting are encouraged to help their constituencies by providing outreach and education to enable people to choose the right plans for them. CMS can help provide training and educational materials through our Partnership Program. Our Partnership website can be found at There also are staff at CMS dedicated to working with groups like yours on outreach to Medicare beneficiaries.

National Organization for Rare Diseases (NORD):

Issue: The most critical issues for those with rare diseases relate to continuity of care issues. Thanks to advances in science, many individuals with rare diseases that previously resulted in death early in life today live far longer with illnesses that are now more chronic than acute in nature. Overall medication costs and continuity of care during conversion to Medicare Part D are both significant issues for persons with rare diseases. The longer lifetimes of persons with rare disorders also raises issues with respect to Medicaid coverage, particularly regarding the length of time it takes for a disorder to be listed as a disability – another problem resulting from the enhanced life-expectancy for persons with many rare disorders.


  • Continue the Medicare Drug Replacement Demonstration and assess its application for persons with rare disabling disorders.
  • Consider ways in which rare disorders can be more rapidly brought under the definition of disability under Medicare and Medicaid.

CMS Response: CMS needs to identify what works best to achieve continuity of care and community-based services for persons with disabilities now under Medicaid and apply the same principles to persons with rare disorders. CMS ahs worked closely with NORD and other disease-related organizations on the outreach and implementation of the Medicare Drug Replacement Demonstration project. Together, we have achieved enrollment of well over 20,000 Medicare beneficiaries, and that number continues to grow. Similarly, when it comes to medications and the new drug benefit that begins January 1, 2006, CMS needs constituency organization help to provide outreach and education to best enable specific individuals to choose the plan best for them in a timely fashion.

National Spinal Cord Injury Association

Issue: The concepts of community-based care, continuity of care and performance are good ones; the budget, however, seems to represent a disconnect with those concepts. It is important to show real and positive outcomes for real people, not just performance measures and better accountability. Issues of affordability or cost alone should not govern State and Federal Medicaid or Medicare decisions regarding the choice of products for persons with disabilities (e.g., wheelchairs, cushions, assistive devices); best practices and best outcomes should be the most critical determining factors. Too many persons are caught in the health insurance “no man’s land” with incomes too high to qualify for Medicaid and incomes too low to cover costly premiums and co-payments for private insurance. Negotiating that issue is difficult even for someone expert in health financing.

Recommendation:Medicaid and Medicare policies and practices – including State plans – should be revised to ensure that service choices by persons with disabilities, such as the choice of a particular wheelchair or other assistive device, are made based on what is best for the individual’s independence and self-determination, not based on bottom line costs alone.

CMS Response: By emphasizing less costly community-based care and assuring that the coverage is for high-quality services that meet the standards of best practices, savings could be realized to serve more people. Those funds could, for example, be used as they are in the Massachusetts demonstration, to give people without insurance the ability to buy coverage from an “insurance pool” that helps lower their costs of coverage substantially. That’s one way to provide real programs that meet the needs of real people.

Recording for the Blind and Dyslexic

Issue: No specific issues were raised other than the need to ensure accessibility to affordable community-based services for persons with disabilities.

Visiting Nurse Associations of America

Issue: Home and community care are more appropriate care models than is institutional care for the Medicaid population today – particularly for persons with disabilities who seek self-determination and independence. The concept of creating a full continuum of care within the community makes good sense. However, a true care partnership between Medicare and Medicaid cannot exist until the fundamental incompatibility of the programs ends. Medicaid functions under a potentially more flexible social model; in contrast, Medicare, like private insurance, functions on a far less flexible medical model.

  • Recommendation: Better options need to be brought to the table to create a better fit between Medicare and Medicaid models of health coverage.

United States Department of Labor – Office of Disability Employment Policy

Issue: Existing interagency programs are showing successful recruitment and retention of persons with disabilities, particularly those with mental disorders, in employment. A meeting between HHS and DoL – involving CMS and OD, at a minimum, from HHS – could begin exploration of a collaboration to identify best practices in employing and retaining persons with significant disabilities and delineate potential implications for Medicaid and other benefit programs for persons with disabilities.


  • Undertake a joint Labor/HHS project to identify best practices in employing and retaining persons with significant disabilities in the labor force.

CMS Response: CMS believes collaborations of this nature could be beneficial in efforts to promote community-based living for persons with disabilities and to foster a climate and policies that support work opportunities.