•	Senator Harkin's Comments

Senator Harkin's Comments

Senator Tom Harkin
Medicaid Community Attendant Services and Supports Act
Introductory Statement
November 16, 1999

Mr. President. Today, along with Senator Arlen Specter, I am introducing
the Medicaid Community Attendant Services and Supports Act. Our bill allows
people to have a real choice about where they receive certain types of
Medicaid long term services and supports. It also provides grants to the
States to assist them as they redirect Medicaid resources into
community-based services and supports.

We all know that given a real choice, most Americans who need long term
services and supports would rather remain in their own homes and communities
than go to a nursing home. Older people want to stay in their homes; parents
want to keep their children with disabilities close by; and adults with
disabilities want to live in the community.

And yet, even though many people prefer home and community services and
supports, our current long term care program favors institutional programs.
Under our current Medicaid system, a person has a right to the most
expensive form of care, a nursing home bed, because nursing home care is an
entitlement. But if that same person wants to live in the community, he or
she is likely to encounter a lack of available services, because community
services are optional under Medicaid. The deck is stacked against community
living, and the purpose of our bill is to level the playing field and give
people a real choice.

Our bill would allow any person entitled to medical assistance in a nursing
facility or an intermediate care facility to use the money for community
attendant services and supports. Those services and supports include help
with eating, bathing, grooming, toileting, transferring in and out of a
wheelchair, meal planning and preparation, shopping, household chores, using
the telephone, participating in the community, and health-related functions
like taking pills, bowel and bladder care, and tube feeding. In short,
personal assistance services and supports help people do tasks that they
would do themselves, if they did not have a disability.

Personal assistance services and supports are the lowest-cost and most
consumer friendly services in the long-term care spectrum. They can be
provided by a variety of people, including friends and neighbors of the
recipient. In many instances, with supervision, the consumer can direct his
or her own care and manage his or her own attendants. This cuts down on
expensive administrative overhead and the current practice of relying on
medical personnel such as nurses to coordinate a person's care. States can
save money and redirect medically-oriented care to those who need it most.

Not only is home and community-based care what people want, it can also be
far less expensive. There is a wide variation in the cost of supporting
people with disabilities in the community because individuals have different
levels of need. But, for the average person, the annual cost of home and
community based services is less than one-half the average cost of
institutional care. In 1997, Medicaid spent $56 billion on long term care.
Out of that $56 billion, $42.5 billion was spent on nursing home and
institutional care. This paid for a little over 1 million people. In
comparison, only $13.5 billion was spent on home and community-based care -
but this money paid for almost 2 million people. Community services make
sound, economic sense.

In fact, the States are out ahead of us here in Washington on this issue.
Thirty States are now providing the personal care optional benefit through
their Medicaid programs. Almost every State offers at least one home and
community based Medicaid waiver program. Indeed, this is one of Senator
Chafee's most important legacies. He was ahead of his time.

The States have realized that community based care is both popular and cost
effective, and personal assistance services and supports are a key component
of a successful program.

And yet there are several reasons why we have to do more.

Federal Medicaid policy should reflect the consensus that Americans with
disabilities should have the equal opportunity to contribute to our
communities and participate in our society as full citizens. Instead, our
current federal Medicaid policy favors exclusion over integration, and
dependence over self-determination. This legislation will bring Medicaid
policy in line with our broader agreement that Americans with disabilities
should have the chance to move toward independence. This bill allows people
to receive certain types of services in the community so that they don't
have to sacrifice their full participation in society simply because they
require a catheter, assistance with medication, or some other basic service.

Take the example of a friend of mine in Iowa. Dan Piper works at a hardware
store. He has his own apartment and just bought a VCR. He also has Down's
syndrome and diabetes. For years Dan has received services through a
community waiver program. But, he recently learned that he might not be
able to receive some basic services under the waiver. The result of this
decision? He may have to sacrifice his independence for services. Today,
Dan works and contributes to the economy as both a wage earner and a
consumer. But, tomorrow, he may be forced into a nursing home, far from his
roommate, his job and his family.

In addition, our country is facing a long-term care crisis of epic
proportions in the not-too distant future. We all talk about the coming
Social Security shortfall and the Medicare shortfall, but we do not talk
about the long-term care shortfall. The truth is that our current long-term
care system will be inadequate to deal with the aging of the baby boom
generation, the oldest of whom are now turning 60. Our bill helps to create
the infrastructure we will need to create the high-quality, community based
long term care system of the future. And it will give families the small
amount of outside help they need to continue providing care to their loved
ones at home.

And, finally, in a common sense decision last June, the Supreme Court found
that, to the extent Medicaid dollars are used to pay for a person's long
term care, that person has a right to receive those services in the most
integrated setting. States must take practical steps to avoid unjustified
institutionalization by offering individuals with disabilities the supports
they need to live in the community. We in Congress have a responsibility to
help States meet the financial costs associated with serving people with
disabilities that want to leave institutions and live in the community, and
the bill I am introducing will provide that help.

And so I call upon my colleagues for your support. Millions of Americans
require some assistance to help them eat, dress, go to the bathroom, clean
house, move from bed to wheelchair, remember to take medication, and to
perform other activities that make it possible for them to live at home.
These Americans live in every State and every congressional district. Most
of these people have depended on unpaid caregivers - usually family
members - for their needs. But a number of factors have affected the
ability of family members to help. A growing number of elderly people need
assistance, and aging parents will no longer be able to care for their adult
children with disabilities.

But they all have one thing in common with every American. We all deserve
to live in our own homes, and be an integral part of our families, our
neighborhoods, our communities. Community attendant services and supports
allow people with disabilities to lead richer, fuller lives, perhaps have a
job, and participate in the community. Some will become taxpayers, some
will do volunteer work, some will get an education, some will participate in
recreational and other community activities. All will experience a better
quality of life, and a better chance to take part in the American dream.

I urge my colleagues and their staff to study our proposal over the break.
I hope there will be hearings and action on this bill next year. And,
finally, I ask unanimous consent that the bill, along with letters in

support of the bill, be printed in the Record following our statements.