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National Council on Disability
Quarterly Meeting (Teleconference)
Access Board Conference Room
May 9, 2005
Members
Present
Lex Frieden, Chairperson
Pat Pound, First Vice Chairperson
Glenn Anderson, Ph.D., Second Vice Chairperson
Milton Aponte, J.D.
Barbara Gillcrist
Joel I. Kahn, Ph.D.
Young Woo Kang, Ph.D.
Kathleen Martinez
Carol Novak
Anne M. Rader
Marco Rodriguez
David Wenzel
Linda Wetters
Absent
Robert Davila, Ph.D.
Graham Hill
Staff
Present
Ethel D. Briggs, Executive Director
Jeff T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director of Communications
Martin S. Gould, Ed.D, Senior Research Specialist
Julie Carroll, Senior Attorney Adviser
Joan Durocher, Attorney Adviser
Gerrie Hawkins, Ph.D., Program Analyst
Allan Holland, Chief Financial Officer
Mark Seifarth, Congressional Liaison
Pam O’Leary, Staff Interpreter
Guests
Michael Morris, NCD Contractor
Johnette Hartnette, NCD Contractor
Kathy Miller, National Association of State Units on Aging
Suellen Galbraith, ANCHOR
Ensor Pastor, ANCHOR
Monday, May 9, 2005
CALL TO ORDER
Chairperson Lex Frieden called the meeting to order at 10:10 a.m.
ACCEPTANCE OF THE AGENDA
Motion 1
Ms. Wetters moved to accept the agenda as presented. Passed.
ACCEPTANCE OF THE MINUTES
Motion 2
Ms. Pound moved to accept the minutes of the March quarterly meeting in Honolulu, Hawaii. Passed.
Mr. Frieden explained that the Council members, at the quarterly meeting in Honolulu, agreed to hold an in-depth discussion on a report or project that was currently under way. The purpose of such a discussion is to engage members in the process of report development, rather than simply in reviewing the finished product.
Mr. Frieden said that the Council members chose to experiment with this type of involvement by discussing the long-term services and supports study that is under way. He said that the major goal is for members to make recommendations that will be incorporated into the report.
INTRODUCTION
Ms. Novak said that Dr. Gould would first provide a brief overview of the contract report to date. Then she would describe her efforts over the past 20 years to create a life and a future for her son, who has severe cerebral palsy. After her presentation, the contractors, Mr. Morris and Dr. Hartnette, would report on the research conducted so far for the long-term services and supports study. Ms. Novak asked that everyone hold their questions until the question-and-answer session at the end of the presentation.
OVERVIEW OF CONTRACT
Dr. Gould reported that the Council is nearing the end of a fairly intensive and comprehensive research study conducted by the National Cooperative Bank Development Corporation’s National Disability Institute. In preparation for today’s discussion, Dr. Gould said that the Council members received materials on the following topics: a federal overview of the long-term services and supports system; selected state strategies; local and individual strategies; the future market for long-term services and supports; and proposals from external policymakers and stakeholders.
Dr. Gould said that this report is very timely, given the discussions taking place in Congress. He noted that he has received and sent to Council members materials from the Government Accountability Office (GAO), Congressional Research Service (CRS), and the media regarding reform strategies and proposals for Social Security, Medicare, and Medicaid; and that there is an ongoing conflict on these issues between the federal and state governments. He said that this is the perfect opportunity for NCD to weigh in with its report.
Dr. Gould said that the Council expects the contractor to deliver the final report by the end of May. It will be sent to the Health Team first, then to the full Council for review and final action. Because Council members and staff have had an advance look at the product (except for the conclusions and recommendations), it may be possible to release this report in early summer.
A PERSONAL VISION
Ms. Novak talked about her experiences regarding her son, who is 29 years old and has severe cerebral palsy. She began by stating that some people with various disabilities are unable to live totally on their own, regardless of their age; these people need long-term supports and services.
She said that she has spent the last 15 years as an advocate, learning about the complicated and contradictory systems. She said she has visited many offices in the state of Florida, trying to identify sources of assistance for people with developmental disabilities, who currently are expected to pay for food, clothing, and shelter with a Supplemental Security Income (SSI) benefit that averages $579 per month.
Ms. Novak said that programs exist for low-income first-time home buyers in Florida, but they require a mortgage, which does not work for someone who makes less than $7,000 per year. She said that she will continue to advocate for programs in Florida that meet the need of this population for their own homes. She said that states provide assistance for group homes (which are considered mini-institutions) but not for those who want their own homes. Transportation is another issue for people with mobility and vision impairments, and assistive technology is needed by people with many types of disability.
Ms. Novak said that she envisions a one-stop center where the various departments of the Federal Government have representatives who collaborate. Currently, she believes that interagency collaboration is a myth.
Ms. Novak said that people who need long-term services and support should be able to go to a place where they are viewed holistically. Each of these people doesn’t need every service. For example, a person may just need access to affordable transportation and assistive technology. However, everything should be available at the center. The person’s functional needs must be assessed, because, for example, cerebral palsy means nothing as a diagnosis. She said that President George Bush’s goal in the New Freedom Initiative is to empower people to achieve their highest potential.
Ms. Novak said that she envisions a place where people are evaluated for the array of supports that address their unique needs in order to empower them to participate; to work (if they are of age and motivated to do so, which most people with disabilities are); and to live in the community and enjoy a real life.
Ms. Novak said that if you have personal assistance but you are in an inaccessible home, you are still a prisoner. If you have personal assistance and you have no transportation, you are still a prisoner. She said that an effective long-term services and supports system would empower people to be full participants in their communities.
Ms. Novak shared the story of her father-in-law, who was released from a nursing home and then faced difficulties trying to get the medications he needed. She said that sometimes people do not receive necessary services and supports because of the bureaucracy.
Ms. Novak noted an important point made in the last document that came from the researchers: that people are not prepared to pay for long-term services and supports. They think that if they need it, the government will take care of it. They don’t understand that they have to be essentially impoverished to be eligible for government support. She said that an education effort is needed, because in the past people didn’t live this long and there was not such a need for long-term care.
Ms. Novak said that 40–50 percent of the people in Medicaid nursing home beds today were self-supporting throughout their lives. They acquired a disabling condition as a result of aging and exhausted their life savings (one year in a nursing home costs approximately $60,000–$70,000), which made them eligible for Medicaid. She said that people need to be educated, because most are clueless about long-term services and supports until the need occurs, and then they panic. She suggested that a tax incentive could be used to encourage people to plan ahead for long-term care.
Ms. Novak closed by saying that her vision may be a long time coming, and it will require overcoming resistance from the special interests that benefit from the status quo.
OVERVIEW OF LONG-TERM SERVICES AND SUPPORTS STUDY TO DATE
Mr. Morris said that the subject of long-term services and supports is as challenging and complicated as any in public policy today. In addition to older people, the issue affects the daily lives of people with disabilities, including children and adults across the full spectrum of disability. This makes it difficult to make recommendations and propose solutions.
Mr. Morris expressed his appreciation to the project’s expert panel, some of whom have been extremely helpful in recommending people for the study team to contact and informing the team of various documents, hearing records, and organizational perspectives.
Mr. Morris said that he and his colleague would paint a picture of the current experience with long-term services and supports for people with disabilities in this country, then change the picture according to future demographics and other trends. Using this modified picture, the Council can make recommendations for changes in public policy.
Mr. Morris said that the study team processed a tremendous amount of material in its effort to understand what is on the public record and what researchers have found over the past 10 years, especially the past 3–4 years. He said that the team has accomplished four goals: (1) analyzing the current state of long-term services and supports; (2) determining future market demand and understanding costs, financing, and needed system reform; (3) surveying promising state practices and local innovations; and (4) soliciting recommendations, suggestions, and comments from the expert panel and from a variety of organizations representing multiple government and nongovernment stakeholders. He added that the recommendations and the last section of the report are being written and will be completed in the next few weeks.
Mr. Morris said that Dr. Hartnette would discuss Goals 1 and 2, and he would discuss Goals 3 and 4.
GOAL 1
Regarding Goal 1, Dr. Hartnette said that the study team looked at history. She said that most people have no idea how the current system of health care was developed. In the late 1800s, medicine began to be professionalized, and medical research was being developed. The number of hospitals grew from several hundred to 7,000 in the early 20th century. During this time, hospital care was considered charity care, because there was no basis for charging.
Dr. Hartnette said that as scientific discoveries advanced health care, medicine took on a very different appearance and hospitals became private. In the late 1920s, some companies started to sell health care policies for $1 per week; in the 1940s, insurance companies were established, namely Blue Cross/Blue Shield, and more hospitals were built.
Currently, Dr. Hartnette said, public perception is the key to long-term health care planning. She said that she combed through postelection data, trying to determine what people considered the key issues. She found that 59 percent of Americans have given little or no thought to any kind of long-term service and support needs, and that one-third believe that federal programs such as Medicare or Medicaid will pay the bill. Presently, almost 96 million Americans (almost a third of the U.S. population) are on either Medicare or Medicaid.
According to a major textbook used in medical schools around the country, long-term care is a nonstarter with a low status. People think of long-term care as nursing homes and basically do not understand the issue. However, shifting demographics are adding urgency to this huge issue.
For people with disabilities, Dr. Hartnette said that there is little in the way of coherent policy regarding long-term services and supports. The only services are basically those available through Medicaid.
Medicaid legislative policy was written almost 40 years ago, and it does not deal with today’s demographics. Dr. Hartnette said that with many of the advances in recent years for people with disabilities, including ADA and Olmstead, it is important to consider the issue of choice. We have to ensure—as we promote taking people out of nursing homes and letting them make their own choices—that the infrastructure and capacity are available to support those choices, especially on the state level. The variety of choices will be determined by the availability of resources.
State systems are fragmented, with uneven access and services, and services are not portable. In the federal system, 23 agencies are providing some type of long-term services or supports, but no one agency is in charge.
Dr. Hartnette reported that the impact on the economy of informal care is estimated at $80 billion to $200 billion, and this is in addition to the lost wages for primary caregivers. There are implications for Medicaid, Medicare, and the Food Stamp program, because the fewer workers there are, the less money goes into the general fund to support these programs. Dr. Hartnette added that fewer young people are working, so less money is going into Medicare. Thus, any changes in long-term care policy will be made in an environment of declining resources.
She said the declining workforce in both paid and unpaid caregiving has resulted in a huge shortage in the medical and nursing professions. And in the caregiving professions, many jobs don’t include benefits, which is shocking. As a result, we have the poor serving the poor.
GOAL 2
Dr. Hartnette said that the study team first identified the beneficiaries of long-term services and supports. In the aging population, 9–12 million people need these services and supports. In addition, research indicates that 38 million people under the age of 65 have some type of chronic disability, and 25 million of them need assistance with at least one activity of daily living (ADL).
Dr. Hartnette said that NCD, AARP, and others are modernizing their definitions of long-term services and supports to include nonmedical supports such as transportation and an array of assistive technology.
The over-65 population is increasing; however, researchers say there has been a decline in the past 15 years in disability measured by ADLs and IADLs (instrumental activities of daily living). The decline has been mostly in IADLs as a result of the use of technology. Dr. Hartnette said that we need to focus on the under-65 population, especially children with disabilities; these are the people who will need long-term services and supports well into the future. She said that with children, in particular, you must address chronic care and ethnic group. For example, she said that an African-American child in this country has a 13 percent greater chance of having a problem with at least one ADL than children of other ethnic groups. She said that this situation has important implications for future planning.
Dr. Hartnette said that there has been a huge increase in the Medicaid population over the past three years, and eight million of these are children. We’re not sure what has caused the increase; it may be people who’ve come off the welfare and TANF (Temporary Assistance for Needy Families) rolls. However, we do know that 70 percent of the Medicaid population is mothers and their children, 15 percent is seniors, and 15 percent is people with disabilities.
Dr. Hartnette said that the future costs of long-term services and supports are uncertain, mainly because of insufficient data on utilization, particularly for those under age 65. Projections show that informal caregiving, which comprises 80 percent of care today, is going to decrease.
With double-digit inflation in health care costs, heath care in the United States presently is about $1.4 trillion a year; it would be difficult to project costs for the next 10–20 years.
Dr. Hartnette said that policy changes would depend on addressing the issue of health care costs. The United States spends $5,000 a year per person on health care, which is more than any industrialized nation; however, it is number 24 on the International Monetary Fund list of per person health care costs. She added that disability insurance is the missing link for financial security and that many uninsured Americans are either self-employed or working for companies that offer no health care benefits.
Dr. Hartnette said that the Congressional Budget Office (CBO) estimated the cost for long-term services and supports at $135 billion in 2004. The CRS estimate in 2001 was $151 billion. She said that 75 percent of these funds go to support the mentally retarded developmentally disabled (MRDD) population and 25 percent go to other populations. Owing to the lack of research, it is unclear what the funding is used for. She stated that over two-thirds of Medicaid spending is for optional services.
In closing, Dr. Hartnette said that she believes this study is a timely one and that it is important that the issues be presented to Congress, especially the issue of the lack of data.
Regarding Goals 1 and 2, Mr. Morris added that in the United States people have different levels of access to services, depending on where they live and how their disability is categorized through some medical definition or functional assessment,. Some people with disabilities may have limited or no access simply because of their geographic location. The fragmentation of services is exacerbated by the existence of 23 Federal Government agencies that often have difficulty communicating with each other and interpreting each other’s rules and regulations, which may themselves be in conflict
Mr. Morris said that the picture is equally fragmented in terms of the ultimate controller of change: Congress. A confusing array of committees and subcommittees in the House of Representatives and the Senate address disability issues. The situation presents a significant barrier to those who would shepherd the best recommendations through Congress, even the forward-thinking recommendations coming from the Council and other major stakeholders.
Mr. Morris said that the Olmstead decision was the impetus for the Bush administration to indicate to the states that this case was not just about two people in Georgia but was a decision with national implications. The Department of Health and Human Services provided guidance to help all states develop Olmstead plans. The decision also led to the Real Choice Systems Change Grants from the Centers for Medicare and Medicaid Services (CMS), which is the agency that oversees Medicare and Medicaid. More than $200 million has been spent so far, and additional grants were recently announced. The grants support states in analyzing the problem and becoming living laboratories for change, rather than having changes dictated to them from the federal level.
GOAL 3
In Goal 3, the study team researched long-term services and supports in the 50 states and selected 5 to examine in depth. Mr. Morris said that these states provide a snapshot of changes that are occurring and that can be replicated across the country. The key programs (such as Medicaid) typically involve a combination of state and federal funding.
Mr. Morris listed the following key factors that indicate the need for system change in the state environment:
• Uncertain points of entry; i.e., where you live dictates your access to services.
• Escalating costs, not only in acute health care but also in long-term services and supports.
• Increasing numbers of individuals seeking assistance.
Mr. Morris said that the numbers are increasing for people under the age of 65, partially because of medical advances. People in general are living longer, and people with disabilities are not dying at a young ages; they are living into their 60s, 70s, and 80s. The number of people who are over the age of 65 will double over the next 30 years.
Mr. Morris said that the states are responding in various ways to the Olmstead decision, and there is a remarkable picture of litigation nationwide. Persons with disabilities are not happy with the pace of change. More than 25 states have settlements that affect post-Olmstead decisions in terms of shifting resources from institutional settings to home and community-based services. Since Olmstead (and separate from government pressure), individuals are accelerating change by taking their cases to court.
Mr. Morris also noted that the economy has been up and down, and tax cuts have affected individuals as well as state revenues. He said that Medicaid is now the number one cost in a growing number of states. In one-third (moving toward one-half) of states, education used to be the number one cost; now it is Medicaid.
Mr. Morris said that the study team looked at strategies in Washington State, Vermont, Minnesota, Texas, and Indiana. Washington was one of several states that moved to global funding and budgeting. Mr. Morris indicated that traditionally and historically states have kept separate budgets for nursing homes and institutions and for home and community-based services. A small but growing number of states have been able to combine those budgets under one administrative agency. The result is more control and a rebalanced system. The State of Washington has already seen money moving faster and more efficiently into home and community-based services.
Mr. Morris said that Vermont is changing its infrastructure, moving to a single umbrella agency for aging and physical and developmental disabilities. He said that Minnesota has moved to a tough system of benchmarking. They have set up a series of benchmarks and report annually to state legislators on the changes that are occurring. They are not just reporting anecdotal information but are relying on performance markers that will hold the state accountable for the change to consumer-preferred home and community-based services.
Mr. Morris said that in Texas the money that was supporting an individual in a restrictive setting now moves with the individual into home and community-based services. Indiana is looking at a system in which people can protect their assets to the extent they are able to buy into a long-term care insurance product. This way they will not impoverish themselves and eventually fall into Medicaid.
Mr. Morris said that a primary common element among these progressive, front-runner states is that people with disabilities have played a significant role in shaping, developing, and implementing the system innovations. Also, there is recognition in these states that the Federal Government is not going to be able to pay for all the people who will need long-term supports and services in the future.
Mr. Morris said that more than 20 states are currently using the Aging and Disability Resource Center (ADRC) approach. With the new round of CMS grants, the number could soon reach 40 states. He said the new approach is to look at how people access services. We could begin by consolidating the way information is provided, then analyzing how service eligibility is determined. From there, we could eventually move to a system in which a person has more choices and is empowered by knowledge of what those choices are.
Mr. Morris noted that global budgeting has expanded the use of Medicaid waivers—there are more than 280 waivers nationwide. Mr. Morris said that waivers are the fastest growing part of Medicaid, because this is the only place states can turn to provide home and community-based services to people with disabilities and others who need them. The waivers allow individuals to embrace the principle of self-determination.
Mr. Morris said that researchers today are learning that the system of the future will not involve third-party decision making. Research shows that people with disabilities, regardless of their age, embrace the principles of self-determination. They want person-centered plans, want to control the selection of providers, and want to manage public resources in the most effective way to produce the outcomes they are seeking.
Mr. Morris said that nursing home diversion and transition are key aspects of state systems; the states are trying to determine how they can use the federal grants to build a home and community-based system that meets and responds to the general preference for these kinds of services.
Mr. Morris said that additional innovations exist that are not being supported by any of the federal grants or embraced at the state and local levels. He said that research has shown some realignment of service and financial relationships to examine ways that individual budgets might be managed.
GOAL 4
Mr. Morris said that everyone agrees that the only viable solution for the future must include a significant role for the Federal Government. The solution cannot lie completely in the private sector or be dependent on state budgets and allocation of resources. He said there must be an expansion of consumer choice and direction to seek and balance public and private responsibility, which is a critical issue.
Mr. Morris said that the study team researched several major options for policy change and development, including the following:
• Workforce recruitment and retention.
• Workers providing personal assistance services.
• Workers in different types of housing configurations.
• Workforce cooperatives.
• Workforce cooperatives in conjunction with people with disabilities.
• Family support.
Mr. Morris said that there needs to be a way to support informal caregiving, whether through tax incentives or other government programs.
With regard to affordable housing, the study team researched cooperatives and an interesting model program in the Twin Cities of Minnesota.
Regarding consumer direction, the team researched self-directed support corporations. An effective method in Canada—although less well known in the United States—is the concept of the microboard, in which a group of people (with no conflict of interest) look after the best interests of people with disabilities.
In the area of public and private financial trusts, the study team researched the pool trust, which is a way of looking at people who are not completely impoverished and yet are able to access federal assistance, such as Medicaid. The Child Trust Fund was established in England two years ago. At birth, each child is given an amount of money that is placed in a lockbox; when the child turns 18, he or she may retrieve the money. Thus, regardless of the child’s circumstances, he or she will have some resources to pursue an education, start a business, purchase health care, and so on. Similar legislation has been introduced in Congress; it could have other things attached to it.
In terms of the family, a child who is born with a disability or becomes disabled before age 18 could have a certain amount of funds set aside in a lockbox, to be used someday for the extra cost involved in caring for and supporting that person within the family.
Mr. Morris said that the study team focused on six advising and policymaking organizations: the National Academy for State Health Policy, the National Governors Association, the National Academy of Social Insurance, the CBO (Congressional Budget Office), ADAPT, and AARP. The most important common points among the many proposals of these organizations are as follows: • Revise Medicaid eligibility.
• Modify the benefits package.
• Provide financial incentives for states to rebalance their systems.
• End the institutional bias of Medicaid and the impoverished approach.
• Improve access information and services and supports.
• Expand tax benefits to families to encourage family support and keeping families together.
• Improve consumer choice and control.
• Modify the coverage of Medicaid and Medicare to support home and community preferences first, not second.
• Continue the federal presence.
The following are the areas in which these organizations have points of disagreement:
• Definition of the target eligible population for the long-term services and supports system of the future.
• Extent of state flexibility to define eligibility, benefits, coverage, and cost sharing.
• Balance of public and private responsibility, as well as insurance, family, and government responsibility.
• Financing mechanisms.
• Increasing the federal responsibility.
• Mandating a social insurance framework.
• Spreading the cost among all wage earners and families.
• Using private insurance.
• Roles and relationships of tax incentives for private coverage with public assistance.
• Inclusion of affordable housing in the long-term services and supports menu.
• Changes in the government infrastructure.
Mr. Morris said the study team examined a GAO framework in a recent report on where the United States is going, not only in health care and long-term services and supports, but in terms of many challenges of the 21st century. The framework includes a set of questions that can be used to look at any federal program or policy, whether in the environment, international relations, or any other area.
The following questions are asked:
• Is a federal role warranted?
• Are benefits targeted to those most in need?
• Is it affordable and sustainable over time?
• Are policies consistent with best practices?
• Are all applicable costs and benefits being considered?
• How is performance measured?
An expert panel answered the questions as follows with regard to long-term services and supports:
• The federal role is warranted and essential.
• Benefits would be targeted based on functional need, not on medical classification.
• Disagreement exists on the topic of financial need, and whether the system should include an index so that people above a certain income level are not eligible.
• Affordability and sustainability will require a social insurance model to spread risks and costs.
• Additional research is needed.
Mr. Morris said that despite the variety of viewpoints represented by the stakeholders on the expert panel, they agree that the only comprehensive solution is a social insurance model similar to Part E of Medicare. Costs would extend across a lifetime, and the model would include a risk pool to support people regardless of their need.
STRUCTURED DISCUSSION
Mr. Frieden stated that Council members would ask questions to stimulate a discussion of major points. The following were the first two questions:
What lessons have been learned from existing strategies to promote more comprehensive long-term services and supports that embrace principles of consumer choice and direction?
What areas of policy development can best respond to current and future financial challenges at the state and federal level and yet still move us toward a comprehensive long-term services and supports system that is affordable and flexible, and that promotes individual choices?
Dr. Anderson said that although he was pleased with the excellent presentations by the contractors, he was not pleased with the disturbing findings. He noted that only a few states are doing innovative things with regard to long-term support and services. He believes that more attention should be given to this issue.
Mr. Frieden said that most states are trying to do innovative things, particularly those that have received CMS grants during the past several years. But many of them are simply not highlighted in this report, including Arkansas and Wisconsin, both of which are doing some very innovative things. However, he said that the Council should be aware of the problem of the uncontrolled growth in health care costs, a problem that is not being addressed in any of the demonstration projects.
Mr. Morris agreed with Mr. Frieden’s comments. He said he decided to highlight certain states for the sake of simplicity in the presentation, but many system change efforts are under way across the country.
He explained that CMS has been awarding grants on a competitive basis from a budget of $200 million plus through the Real Choice Systems Change program. He said that the funds are doing what they are intended to do: giving states the opportunity to become laboratories for change.
But these are strictly demonstration activities. The states will have to figure out how to sustain these changes when the projects are over, because Congress continues to debate system changes to these entitlement programs.
Medicaid is the primary funder of the fragmented long-term services and supports that are currently available. Mr. Frieden said that even as the states (for example, Vermont) have begun to unify certain programs at the state level, they still must deal with multiple federal funding streams and sets of regulations that relate to each of these funding streams.
Mr. Morris said that the budget proposal currently being debated in Congress calls for a $40 billion cut in Medicaid spending. There are no specifics on how the cuts would be made, and there is enough bipartisan disagreement that significant cuts may not be made.
Mr. Morris noted that some states are picking up on the ADRCs, which are attempting to consolidate information on private and public resources. The centers will also look at the consolidation of eligibility for different types of services.
Mr. Morris said that the veterans’ health care system has computerized records and they can negotiate down the cost of prescription drugs. This is not a part of the new Medicare benefit and the reduction could be worth hundreds of billions of dollars. Researchers have suggested that one of the drivers of increasing health care costs in this country is the lack of compatibility among governments’ electronic systems and the fact that many people who see primary care physicians have no electronic data and information system.
Mr. Morris said that the report will include a series of recommendations. He said that there is a need for extensive work by the Council in terms of consumer education and suggested conducting regional forums or holding a national summit. He added that there is also a need to educate Congress and hold congressional hearings. The lack of attention paid to people with disabilities under the age of 65 is a national disgrace. Also, there is a need for major interaction with federal agencies that are the implementers of these policies.
Council members agreed with many of the contractors’ suggestions and submitted their own recommendations as well.
Ms. Novak expressed her appreciation for the participation of fellow Council members as well as their knowledge, expertise, and unique viewpoints on this very complex issue. She said that she gained some new insights from everyone and thought the researchers appreciated everyone’s participation.
Mr. Frieden thanked Ms. Novak for her passionate leadership on this subject. He said that the Council has just begun work on this very important topic. He noted that today’s call had the following three primary objectives:
• Involve Council members more substantively in the process of report development before the final draft.
• Use technology (such as this teleconference) to conduct some Council meetings in order to conserve funds and direct them to other purposes.
• Generate ideas, suggestions, and recommendations to be incorporated into the final report that the contractors will produce for the Council.
Mr. Frieden reviewed the next steps of this project. They are as follows:
• The contractors will take Council members’ comments and recommendations into account in their development of the final chapters of the report, those dealing with conclusions and recommendations, and will make some changes in earlier sections of the report as a result of this discussion.
• The contractors will submit a complete final draft of the report to the Council’s Health Team for review.
• After review and approval by the Health Team, the report will be submitted to the full Council for review, consideration, comment, feedback, and, eventually, approval for publication.
UNFINISHED BUSINESS
None at this time.
NEW BUSINESS
None at this time.
PUBLIC COMMENTS
Ms. Miller said she was struck by Dr. Hartnette’s comment that the GAO report includes the notion that people who are not paying for their long-term services and supports may not have the same rights of choice regarding their supports and services. She was alarmed that this kind of perspective was part of a government policy.
Ms. Galbraith said that she thinks it is important that the Council help frame the long-term services and supports system debate. She said that everyone hears about the uncontrollable and unsustainable costs. She said that the United States can keep making incremental changes, but until this country looks at putting the income benefits, health care, and long-term services benefits programs together holistically, the cost of Medicaid will increase.
ANNOUNCEMENTS
Mr. Frieden said that the next Council meeting will be held July 25–27, 2005, at the Ritz-Carlton in Pentagon City, Arlington, Virginia. A formal reception will be held at the Kennedy Center for the Performing Arts in observance of the 15th anniversary of the ADA. Former President George Herbert Walker Bush will attend the reception.
Mr. Frieden said that the Council has coordinated federal agency participation in a four-hour seminar that will be held at the Marriott at Metro Center Hotel. The seminar will include the announcement by several agencies of plans for a formal signing of an agreement to ensure the use of natural space and wilderness for people with disabilities.
Mr. Frieden said that the Council and staff have been working on the program agenda and have made an exceptional effort to ensure that every Council member is involved in these activities.
Ms. Wetters noted that the American Association of People with Disabilities wrote a wonderful article on Joel Kahn.
ADJOURNMENT
Motion 3
Dr. Kahn moved to adjourn the Council meeting. Passed.
The meeting adjourned at 2:05 p.m. |
