INTRODUCTION
We are pleased to be here today to talk about the President's commitment to
expanding and promoting consumer-directed home and community-based services
so people with disabilities can live their lives to the fullest potential.
It is consistent with our views about the basic rights of all Americans to
control and direct their own lives. It is consistent with our strong and
rigorous support for equal rights for people with disabilities, as
articulated in the Americans with Disabilities Act.
Like everyone here today, the Administration feels strongly about
empowering people with disabilities -- including children, working age
adults, and older people who need help with basic daily activities -- and
their families, by increasing their independence and quality of life. One
of the best ways to do this is to provide opportunities for individuals to
choose to decrease their reliance on nursing homes, by increasing their
options to choose self-directed personal assistance in home and
community-based settings.
We will use our time today to discuss our multi-faceted approach to
achieving these goals, recognizing that while we won't achieve our goals
all at once, we can be aggressive about making real progress toward them.
We would like to explain the Administration's commitment to this issue and
the activities currently taking place with an HHS work group on home and
community-based services. And we would like to discuss our broader
strategy, which includes legislative, regulatory, research/demonstration,
and other activities.
THE ADMINISTRATION'S COMMITMENT
In May of 1995, after a series of meetings with individuals from the
disability community, Secretary Shalala issued a set of principles
supporting home and community-based care. She reaffirmed her support for
emphasizing home and community-based care services and offering consumers
the maximum amount of choice, control and flexibility in how these services
are organized and delivered. Since that time, HCFA has increased its
technical assistance to States to assist them in developing home and
community-based waiver programs and other options to foster care in the
community. We continue to be guided by these principles.
This past September, the President and Vice President met with a group of
disability community representatives and Federal officials, including Bruce
Vladeck, then Administrator of HCFA and Bob Williams, Deputy Assistant
Secretary for Planning and Evaluation, to discuss how to move forward on
the community's highest priorities. The President has a longstanding
interest in addressing the challenges facing people with disabilities who
need long term care services and this Administration has a continuing
commitment to increase the availability of home and community based
personal assistance services. At that meeting, the President expressed
appreciation that the Community Attendant Services Act (CASA) bill had been
introduced by the Speaker, noting that it will help focus attention on the
expansion of home and community based care. He was particularly pleased
that it would enable us to have a discussion about how to move more toward
a system where "the money can follow the person," no matter in what setting
he or she chooses to receive the services needed. Finally, he noted that a
lot of the activity and decision-making regarding home and community-based
care and personal assistance services (PAS) is happening in the States. He
stressed the importance of enlisting the help of those States that are
moving in the right direction, to provide leadership in educating and
helping others who are not so far along.
HHS WORK GROUP
As a result of the meeting with the President, and in an effort to pull
together all our activities in this area, Bob Williams, HHS's Deputy
Assistant Secretary for Disability, Aging, and Long-Term Care Policy, and
Sally Richardson were asked to co-chair a work group on home and community
based services. The goals of that work group, which began meeting in
September, are to review all available information and make recommendations
about how to reduce the institutional bias in Medicaid long-term care
services and spending and promote home and community-based care.
Specifically, we are working to:
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Identify and address the "institutional bias" in the Medicaid program -- so
fewer people are forced to move into nursing homes because it is the only
way they can get long term care services;
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Provide more program opportunities for consumers and their families to
choose the setting in which long term care services are received, with
increased flexibility for the "money to follow the person," as opposed to
the payment determining the setting in which a person receives services;
and,
-
Promote consumer direction of home and community based/personal assistance
services.
Our work group members include HHS and other Administration officials
interested in the issue, as well as an expanded group of "constituency
partners" -- representatives of consumer groups, providers, and State
agencies -- with whom we consult to ensure that the work group's activities
and products take a variety of perspectives into account. The work group is
moving ahead on a number of fronts.
Overcoming Institutional Bias
We are exploring a range of demonstration strategies, including
opportunities we can offer States to modify their Medicaid programs and try
some new ways of helping people who want to and are able to live in the
community. We are happy to announce that we will soon be asking States to
submit proposals to begin to develop a research design to identify
individuals who could successfully move out of nursing homes into the
community and to develop the services that would be needed to support these
individuals in the community. This solicitation is in response to the
commitment made by President Clinton to this issue and the Congressional
directive in the FY 1998 Labor/HHS Appropriations Bill. We believe that we
will be able to fund research in 3 to 5 States.
Another component of this work involves using HCFA data to improve our
understanding of the numbers and characteristics of nursing home residents
who may be good candidates for moving back
to the community and what they would need in the way of supports. We will
then be better able to help the States design strategies that succeed when
these individuals attempt to move into the community.
We are also developing strategies to address the President's charge that
States should learn from each other how to support and promote home and
community based services under 1915 Medicaid waivers. Some States are
much further along than others in developing innovative and cost-effective
service delivery models for home and community-based services. Staff have
been talking to a wide range of experts in the aging, disability, and
long-term care fields in order to hear what they have learned. We have
gotten positive feedback from a growing number of States about the value of
developing a "State to State" technical assistance strategy.
We learned from our constituency partners that some States are not fully
aware of the flexibility available to them under current regulations.
Therefore, we want to clarify some of the things that States can do right
now to reduce the institutional bias. We are planning to produce a primer
on Medicaid that explains to State officials and consumers what is already
available under Medicaid's personal care option, home and community-based
waivers, as well as other Medicaid services. This primer will be clearly
Stated, so readers can understand what is allowable within the existing
framework of Medicaid. The primer will also include some examples of States
that have used the flexibility of Medicaid to do some excellent work in
reducing nursing home use and increasing community supports.
Finally, last year's CASA bill required a study of the "institutional bias"
in the Medicaid program. HHS commissioned an independent contractor -- the
University of California at San Francisco -- to conduct such a study. A few
weeks ago we received the contractor's draft report. Let me note that this
report has already been reviewed by a Blue Ribbon Panel on Personal
Assistance Services that includes many consumers with disabilities and
other Medicaid and personal assistance services experts.
The report reviews the Medicaid statute and regulations, as well as policy
guidance from HCFA, and offers a series of policy options to address the
"institutional bias" in Medicaid. The majority of the recommendations would
involve statutory changes and many of these changes would involve
significant new costs. We are now developing a list of potential regulatory
and policy changes on which we can take some more immediate action, while
we continue to review long-term legislative options.
ADVISORY COMMISSION'S CONSUMER BILL OF RIGHTS
We understand that a high priority for individuals with disabilities is to
ensure that consumer protections are in place that assure access to
specialists, continuity of care, and internal and external appeal rights
when health plans make decisions that are disputed by its enrollees.
As you know, the President endorsed the Consumer Bill of Rights and
Responsibilities, recommended by his Advisory Commission on Consumer
Protection and Quality in the Health Care Industry, and challenged Congress
to make these important rights apply to consumers of all health plans. The
Bill of Rights included important protections such as access to specialists
for individuals with chronic care needs, for example: (1) traditional care
for consumers who are undergoing a course of treatment for a chronic or
disabling condition (or who are in the second or third trimester of
pregnancy) at the time they involuntarily change health plans or at a time
when a provider is terminated by a plan, and (2) a fair and efficient
internal and external appeals process for resolving differences with their
health plans and health care providers.
On February 20th, the President directed HHS, as well as other Executive
Branch agencies, to bring their programs into compliance with the Consumer
Bill of Rights. This Department reviewed the Medicare and Medicaid programs
for compliance with the Consumer Bill of Rights. Based on our review, the
President praised the Department for how far along these two programs were
in complying with the Consumer Bill of Rights and he directed us to bring
the two programs into virtual compliance as quickly as possible. The
President is extremely committed to making the Consumer Bill of Rights real
for all Americans.
EXPANDED SETTINGS and ELIGIBILITY FOR RECEIVING SERVICES (LEGISLATION)
On the legislative front, we were pleased that Congress included in the BBA
our proposal for a new State option to allow certain workers with
disabilities the ability to purchase Medicaid. Losing health coverage can
devastate anyone. Losing health care and personal assistance services is
even more devastating for some people with disabilities -- to the point
where they are afraid to even try to work, because if they lose SSI or SSDI
eligibility, and thus health care, they lose their life line. The new BBA
provision should enable many individuals to make a real transition to work.
Two days ago, we mailed to State Medicaid Directors a letter that revised
the definition of income for the purpose of calculating the eligibility
standard under this provision. Under our revised definition, States will
determine eligibility based on income net of income disregards.
Also included in the BBA was our proposal to allow States to include
prevocational, supported employment, and educational services for all home
and community-based services waiver recipients with developmental
disabilities. Before this provision was enacted, only those who were
formerly institutionalized could receive these services through a home and
community-based services waiver.
Finally, the BBA establishes a new type of service provider called Program
of All-Inclusive Care For the Elderly (PACE). States may elect to provide
PACE program services to individuals who are Medicare and Medicaid eligible
and are enrolled in a PACE program agreement. PACE provides for a
coordinated set of services to frail elderly individuals living in the
community.
EXPANDING SETTINGS and ELIGIBILITY FOR RECEIVING SERVICES
(REGULATION and POLICY)
On the regulatory and policy fronts, this Administration has been very
supportive of expansions in home and community based services under the
Medicaid 1915 waivers. All States are now operating at least one and
sometimes several home and community based waivers. Many provide additional
supports with other Medicaid services as well. Thirteen States provide
attendant care under their home and community-based waiver programs, while
thirty-nine States provide personal care under their home and
community-based waiver programs. The waiver program has flourished and
grown under President Clinton's leadership, and currently there are 226
approved home and community-based waiver programs. We expect the program to
continue to expand at an even greater pace as we work with States to find
new ways to promote the use of existing services in States that have not
provided them yet. In July of 1997, the State Medicaid Directors a letter
that promoted the use of Medicaid home and community-based waivers.
We also recently issued revised regulations to increase the responsiveness
of the Medicaid personal care option to better meet the needs of people
with disabilities. There are currently 31 States providing personal
services under their State plans. Individuals are now permitted to receive
services both in the home, and outside the home. The new regulation
eliminates the requirement that a registered nurse must supervise personal
care services, thus reducing cost and making the service more consumer
responsive and less "medicalized."
Consumer-Directed Purchasing
Our home and community based care and PAS research agenda is a key part of
efforts to help ourselves, and help States and consumers, to find out what
works, for whom, how well, and at what cost.
We are promoting our home and community based services agenda by working
with States to develop and implement Medicaid demonstrations under the 1115
authority of the Social Security Act. Some focus on the integration of
acute and long term care, such as the projects underway in Minnesota and
the District of Columbia. Others, such as the newly-approved Colorado home
health demonstration address different aspects. Colorado's demonstration
will permit home health services to be provided in settings other than the
home, such as schools, work sites, or day treatment centers. Wisconsin and
Rhode Island have applied for 1115 waivers to serve beneficiaries under age
65 with physical disabilities and adults with developmental disabilities
respectively. Four States working with the Robert Wood Johnson Foundation
have applied for 1115 waivers to offer consumers cash allowances and
counseling to purchase their own attendant services. We are currently
reviewing these waivers and expect to complete our review shortly. We are
very interested in finding new ways of doing business in Medicaid and
encourage States to bring us their ideas and proposals.
CONCLUSION
We believe it is critically important to continue to develop models both at
the State and Federal level that support and encourage the move from
reliance on institutional care to a broader array of consumer-directed home
and community-based services.
We embrace these goals and will continue to work toward them. The
challenge, of course, is to balance our goal of providing more flexibility
and choice for people with disabilities, with the need to ensure that any
legislation is affordable. Preliminary cost estimates raise the very real
questions about whether the balance has yet been achieved. However, we
remain committed to working together with you and other interested parties
to craft an affordable, consumer-responsive system, that takes advantage of
and promotes flexibility in our current programs, to help people obtain and
keep the help they need to live as independently as possible.
In conclusion, we would like for all of us to remember that people with
disabilities are a very diverse group of individuals. They are children,
working-age adults, and the elderly. They have developmental disabilities,
emotional or cognitive disabilities, and physical disabilities. This is not
a group of people for which a "one solution fits all" answer is
appropriate. These individuals need more opportunities, more choices on
where and how they are to receive services. Nursing homes, intermediate
care facilities for the mentally retarded should be available, but home and
community based services must also be available. We cannot afford to have
any bias in service delivery.
