I am also a user of personal attendant services. I broke my neck in a Luge accident. As an individual with quadriplegia at the C-4 level I require the assistance of an attendant in bathing, dressing, transferring and other activities of daily living. These attendant services are critical for my ability to work and be active in my community. My testimony today is on behalf of the thousands of people with disabilities who want to have REAL choice to live in the community and participate in what our country has to offer. Needing personal attendant services is not a crime, but thousands of people with disabilities are locked away in institutions because there are very few REAL options in the United States' long term care system.

In the twenty-seven years since I acquired a disability, people with disabilities have been promised the moon and the stars. What we have gotten is a multitude of platitudes and programs that force people with disabilities -- young and old -- to leave our homes, leave our families, move across the country --just to continue to receive services in our own homes. Programs require people with disabilities to impoverish ourselves, sell our homes, divorce our spouses, and lie -- all to merely to access programs that only meet part of our needs. People with disabilities are forced into more expensive programs that over regulate, over medicalize, over control, and demean.

You may shake your head and say "This is an over statement. Is that possible?" Yes it is! It happens every day. It happened to me. I had to move from Ohio to Colorado to receive attendant services. Leaving a mother, a father, a sister, and a child behind. The only other choice? A nursing home. I vowed then, and now sixteen years after leaving Ohio I vow again that I would rather die then go to a nursing home. Drastic? Extreme? The truth.

How many of us in this room have been forced to place a loved one in a nursing home or other institution? Your mother, your father, your spouse, your sister, your brother, or even your child, all because there is no REAL choice?

How many more of my friends and acquaintances who have disabilities like John Craig, Susan Logan, John Folks, Robert Bunting, Bob Bott must die in institutions without ever having a choice? How many more people with disabilities young and old must die never having a choice? During my 5 minutes of testimony two more people with a disabilities will die in a nursing home somewhere in America, another faceless statistic in HCFA's annual morbidity report without a Real Choice. How many more will have to die before there is a Real Choice?

We would not be here today had it not been for the heroic efforts of hundreds and hundreds of ADAPT members, who for the past seven years have put their bodies on the line. These warriors have pressured the nursing home industry, politicians, government, and the public to finally address the need for Real Choice. Who would ever think Speaker Gingrich and Minority Leader Gephardt would join forces with us on this bill? It's not as far fetched as it might at first seem. This bill was introduced, and this hearing was scheduled because it is a good idea; because there is a need; and because it is the right thing to do. H.R. 2020 was introduced because the time has come to address this critical issue.

Forty nine national, 114 state and 18 1 local organizations have endorsed this bill because its time has come, and the list grows daily. From Brooklyn to Houston, from Portland to Chicago, from Iowa City to Lorain Ohio, from Berkeley to Albuquerque, across the nation the call is ringing out for MiCASA. The National Council on Independent Living, the Paralyzed Veterans of America, Self Advocates Becoming Empowered, the National Association of Area Agencies on Aging, TASH, the National Rehabilitation Association, NOW and NOD (National Organization on Disability), and hundreds of other groups have signed on as MiCASA supporters.

Too many of us have had to fight to get out of a nursing home or state institution. Too many have lost homes, lost families, lost dignity and worse simply because we need assistance with what the bureaucrats like to call "activities of daily living or instrumental activities of daily living." For us this is not a matter of developing policy, it is a struggle for our lives and the lives of our friends and colleagues.

Seven years is too long to have to wait for the human right to a home instead of a warehouse. Would you want to live in a nursing home?

I'm here today to bring Congress and the Clinton Administration a strong message, not only from people with physical disabilities but from older Americans, Self Advocates and family members. Congress and the Clinton Administration must take action and begin restructuring the U.S. long term care system. Many of our lives are literally at stake. More specifically, we need a program of Personal Attendant Services that will meet the needs of people in all the states in our country.

Our message is simple:

1. Our Long Term Care System is broken. Fix it!

2. Congress and the President must address this issue!

3. HR 2020 The Medicaid Community Attendant Services Act (MiCASA) is a fundamental piece of the solution.
4. And instead of creating a new layer of programs and bureaucracy, we want you to simply make the existing system more flexible.

HR 2020 is based on some basic principles that are sacred to the disability community. We want services that are:

• Consumer directed and controlled - the consumer should be the center of the services

• Based on functional need, not medical diagnosis, disability or age.

• Usable by people with physical, cognitive and/or mental disabilities.

• As non-medical as possible - based on the Independent living/Social model.

• Flexible - One size does not tit all.

• Provided in the most integrated setting appropriate to the needs of the individual. Community First!

• REAL Choice - Equitable funding, NO disincentives in regulations, delivery options.

I've attached to our testimony a May 1995 statement by Donna Shalala, Secretary of HHS, supporting the principles of home and community care and consumer choice and self-determination which includes some of the above principles. The problem with this statement is that these are just words. Words must be converted into public policy and this is done by Congress passing legislation.

Many of the people in this room have been locked away in institutions. The long term care system effects people with physical disabilities and older people who are railroaded into nursing homes. It effects people with cognitive disabilities who are warehoused in large Intermediate Care Facilities. It effects people with mental disabilities who are forced against their will into institutions. HR 2020, the Medicaid Community Attendant Services Act, is known to many in our community as Mi CASA, which means my home in Spanish. There is no place like home. But for many of us, with out long term care services, attendant services, we can not have a home. Below are some real life examples of who is effected by long term services and how they are effected:

A sixty eight year old woman whose emphysema and heart condition has gradually worsened until housekeeping and getting in and out of the tub are just too much to handle on her own. With the assistance from her attendant she is still able to manage her home and help care for her husband who has respiratory problems too and slight dementia.

A seventy two year old woman had a stroke three months ago which resulted in limited mobility on her right side and problems with her short term memory. She needs assistance from an attendant with bathing and dressing as well as with preparing her meals, but she still is able to remain active with her bridge club and church.

A ten year old boy in Connecticut who required 24-hour a day ventilator support lived in a hospital for the first three years of his life. With intensive respiratory interventions and exercise, he has been able to reach the point where he lives at home with his family, attends public school in the fifth grade, and requires ventilator support only at night while sleeping. Continued access to such support will be vital to him.

A twenty-eight year old man lives in a nursing home in Virginia because he is unable to receive the combination of nursing services, persona1 assistance services, and companion services which he needs to remain in his home. As a result of multiple gunshot wounds, he is paralyzed from the neck down, requires a ventilator, and uses a motorized wheelchair controlled by a mouthstick. His marriage has ended and he is now able to see his two children, ages seven and four, in short visits spread over the year, totaling only about 48 hours a year. With proper personal assistance and other long term supports, he can live in his home community and participate more fully in the lives of his children.

An eighty four year old man, has lived with diabetes since he was in his late 50s. Though he has controlled his sugar with diet for over 20 years the diabetes is catching up and recently he had to have both legs amputated. Mild dementia has complicated his care but his family wants him at home with them. Attendant services will be needed to make this a reality, otherwise a nursing home is the only option.

A thirty-five year old man in Maryland who is diagnosed as having paranoid schizophrenia and a heart condition has spent many months in psychiatric hospitals over the last several years. Although his disability and numerous hospitalizations had a serious impact on his ability to participate in school, he eventually earned his diploma. Through a community outpatient psychiatric rehabilitation program, he receives numerous long term support services which are enabling him to become more independent in the community He receives assistance in keeping his medications under control, managing money and paying bills, and is learning to live on his own. He will need continued support in various aspects of his life in order to maintain and increase his ability to live independently and to avoid future hospitalization.

A seventeen year old girl is experiencing major changes in her life as a result of traumatic brain injury during a car accident. She is having a slow recovery, is experiencing learning problems, frustration and extensive social changes, and attends school only half day while she receives rehabilitation services everyday. As she matures and as the extent of her injuries are revealed, she will need various supports over time, including attendant services to assist her in making the transition from school to work and to assist her to become as independent as possible within her community.

In Wisconsin, a young boy born with cerebral palsy and sensory impairments requires a tracheostomy tube to help him breathe, a gastrointestinal tube to help him eat, and other extensive medical, health, and social supports. He lives at home with his family, attends his neighborhood school, and relies on a number of basic supports from numerous sources such as the school system, private insurance, Medicaid waiver services, and state and county community and respite care services programs. While managing services from many different sources is complicated, the mix enables him to live at home and to stay out of an institution.

A forty-eight year old man with cerebral palsy who lived in a state school for the mentally retarded for the first thirty-seven years of his life. Now in his own apartment he is an avid music fan and is finally getting the chance to learn to read. His attendants assist him with dressing, eating, transferring, toileting, housekeeping and more as they come in for several hours in the morning and evening. At the end of the day however, he is alone in his own home, something he has dreamed of for almost half a century.

A retired fifty-six year old woman with multiple sclerosis has periods when she is able to take care of herself with just a few hours of personal assistance a day. However, there are periods when her condition worsens and she is completely paralyzed, sometimes leading to hospitalization and the need for total care when she returns home. She needs a wide range of long term services that can be provided in varying intensities depending on her needs at a given time. However, her retirement income -- a small pension and some income from investments -- is insufficient to pay for these services. Medicaid does not provide the home and community based services she needs and, to be eligible for nursing home care when she needs total care, she would have to impoverish herself by spending all of her income-generating assets, at which point she would no longer be able to afford to live in her own home.

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RESTRUCTURING FOR A NATIONAL ATTENDANT SERVICES PROGRAM

A long term services program must cover the whole U.S. but must give some flexibility to the states. HR 2020, MiCASA, would provide both this coverage and this flexibility. Unlike the current system which is institutionally biased and inhibits REAL choice, this program should not favor any one setting over the other and should allow users to decide where services should be delivered. HR 2020 provides this REAL choice. A national program should be based on independent living principles of choice and control that have the person with the disability as the focus of the program. It must have the consumer at its center. IIg 2020 was built on this foundation and has these principles throughout. It offers many options in service delivery and consumer control is integral to each.

The time for change has come. You must act.

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INDEPENDENT LIVING/SOCIAL MODEL

Thirty years ago, when long term care system was designed, people thought that 1, if I lived, needed to live in a nursing home. Older people were relegated to the same fate. People also thought that individuals with cognitive disabilities should be protected from society and hidden away in institutions. Beware folks with good intentions.

My friends George and JT live in two different states. Each was left at an institution when he was a baby. They grew up there for 20, 30 years, no education to speak of, and were expected to live out their lives there. They were told -- repeatedly -- they would never make it out in the "real world". Both, in different ways, were offered an opportunity to get out and jumped at that opportunity. Both are now family men who own their own homes and work in the field of civil rights. Here's a hint: They did not get "better"; they still have the same disabilities as they had before; the did get offered a REAL choice, and they chose the community.

Marcie, who now works in our office, spent 22 years in a nursing home after she had a stroke. Told for 20 years she could not receive her SSI or her Medicaid if she moved out of the nursing home, she was shocked when she was learned this was not true. She now lives in own apartment. She is thrilled with the world and does not plan to return to the nursing home ever.

Thirty years later in 1998, people with disabilities overwhelmingly prefer services in the community. This is consistently true if you are 8, 28, 58 or 88, whether you have a physical, cognitive or mental disability People with disabilities, old and young, want to participate in the community whether to go to school, work, church, or just have fun. To evolve to a system that meets today's realities, Congress must act now to restructure the long term care system. The question on the minds of all of us have in this room and the thousands of people across the country who need or use long term services is -- will Congress act?

ADAPT believes the time for action is now. No more talk. We want action.

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DEMOGRAPHICS

The bottom line is that we are living. We are part of everyone's community and we won't go away. One in four households provides some caregiving to a person aged 55 years or older. The number of persons classified as disabled and using Medicaid services by HCFA has grown from a little over 3 million in 1985 to almost 6 million in 1995.

The passage of the American with Disabilities Act in many ways was a recognition of the growing disability population. ADA was enacted with certain precepts at its foundation: inclusion over segregation/isolation; interdependence over dependence; empowerment over paternalism. Many of us need personal attendant services to make the ADA a reality. What good is a ramp or a job interview if I can't get out of bed? To reach or maintain our maximum level of independence we need personal attendant services. Without personal attendant services we are relegated to a life of dependence, lacking dignity HR 2020 can be seen as a civil rights bill. FREE OUR PEOPLE!

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Let me give you a general outline of the problems in the current system:

LACK OF REAL CHOICE IN LONG TERM CARE OPTIONS

ADAPT believes that REAL choice means fair access to long term care funds. This is not what exists today. HR 2020 would give people with disabilities a REAL choice. If a person with a disability is eligible for a nursing home or ICF-MR services then let the person, or in some cases family or guardian, choose to have the money pay for programs and services in the community if they want to. The institutional programs are already there, already on option.

ADAPT believes market forces should drive the long term care system. The current system gives an entitlement to one type of service - institutional service. Community services always get what's left over, like a second class citizen. Let's allow consumer choice to dictate the system rather than the current system of tying the money to facilities. REAL choice would allow the system to transition to what the people want, a more community-based system.

REAL Choice also means options in delivery systems. Traditionally long term care services have been delivered by agencies under strict scrutiny from the Health Care Financing Administration. I run a Home Health agency and I can tell you the guidelines are strict, inflexible and inhibit choice. Consumers tell us that what they want is more choice and control of their attendant services. Flexibility in the Medicaid system to allow direct cash, vouchers, fiscal intermediaries and consumer controlled agency models would allow the individual, if she/he chooses, to select, manage and dismiss his or her attendant. HR 2020 allows this flexibility. Having a range of options allows the program to provide for those individuals who want total control of the services as well as for those who may need more assistance or monitoring.

The lack of REAL Choice has exacted a dramatic toll on individuals and families. No parents want to put their child in an institution. No son or daughter wants to put Mom or Dad in a nursing home when, with attendant services, they can remain at home. Families that want to be together should be together. Children should grow up in families. There's No Place Like Home! Welfare reform has brought to light the importance of families staying together. It's ironic that our long term care policy actually has an incentive to break up intact families because services cannot be gotten at home and families are forced -- because of lack of REAL choices -- to put their child in an institution or their Mom or Dad in a nursing home.

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FRAGMENTATION

Why is it acceptable that if I live in Wisconsin I can get attendant services but if I live in Georgia I can't? If I live in Pennsylvania and have a spinal cord injury I can qualify for a waiver but if I injured by brain I am not eligible? If I am between 18 and 65 in Mississippi I can get attendant services (through vocational rehabilitation only) but once I hit 65 my only option is a nursing home? If I am a disabled child in Louisiana I can get the supports I need in my home with my parents but when my dad is transferred to Texas I am wait-listed into eternity and threatened with a nursing home designed especially for "kids like me"? If I live in Tennessee I can get no help in the community, but when I move to Colorado I can get the supports 1 need? That a program that serves 20 or 30 people in a whole state passes for adequate community services in the eyes of the feds? These things are all real and they are NOT acceptable to us. They should not be acceptable to you.

Look at the current system. There is an entitlement to nursing home services and limited home health if your nursing home eligible. Every state has selected ICF-MR services. 32 states have some type of Personal Care program. Texas has the Frail Elderly program and there is a plethora of 1915 (c) home and community based waivers.

Some of these programs only serve people of a certain disability, some are based on age. Most of the waivers serve a small number of people usually with geographic and program limitations. This system is not user friendly. Rather than meeting the needs of the consumer - the ultimate reason the program is in existence in the first place -- the system creates winners and losers by pitting one group against another. It allows for the building of provider and bureaucratic power centers that dominate the system and stifle the voice of the consumer. Another part of the fragmentation problem is how the lack of a comprehensive approach causes problems to occur in other systems. The recent documented rise in Medicare Home Health is an illustration of this point.. Though Medicare was never meant to address long term care needs, many consumers are attempting to use expensive Medicare Home Health services to meet their individual long term care needs because they have no other way to get these needs met. This should signal to Congress the need to take action and revamp our long term care system, not based on the medical model, but on the independent living/social model.

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MEDICAL MODEL

To the maximum extent possible recipients of the service should be in control There are many tasks that we need assistance with that we described as health maintenance activities and health professionals describe as medical tasks. These may be medical in an acute setting but they are everyday living tasks in our everyday lives.

ADAPT believes that health maintenance tasks such as medication administration, bowel and bladder needs, tube feeding and even vent care can be performed by a qualified unlicensed attendant either through delegation or assignment by a health professional. This works in states as diverse as Kansas, Texas, Oregon, California and Colorado just to name a few. The health professional is still in the loop but the locus of control switches to the individual or family. In states where this has been the practice for many years, quality and safety will not be compromised. We need to make a distinction between an acute/skilled medical need and a health maintenance need.

In addition to the costs to the lives of people who use attendant services, over medicalization of services raises the real dollar costs of programs as well. At Atlantis Medicaid allows us to charge $65 for a nurse's visit to catheterize or tube feed while allowing us to charge $35 for an attendant, trained and supervised, doing the same job. People who would choose to receive services under MiCASA would still remain eligible for the full array of medical services provided under the state's Medicaid State Plan and not loose access to any medically necessary service.

Disabled people and our families must be allowed to take responsibility for living in the community. Living in the community for disabled people requires commitment but has no more risk than non-disabled people experience. Disabled people, however, have not been allowed to take the same risks other people normally experience. The "medical model" is paternalistic. It says we are broken, incapable and need to be taken care of. Yes we need assistance. Yes we have health maintenance needs. But we Do Not need our total lives subsumed by the medical community.

People with disabilities receive personal attendant services to be able to go about their lives. Services are not an end in-and-of-themselves. People with disabilities need these support services to become as productive in the community as they can. That should the goal of any long term care program.

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FUNCTIONAL NEED

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COMMON MISCONCEPTIONS ABOUT MiCASA

HR 2020 will NOT bust the bank, contrary to the claims that have been made. Since HR 2020 amends existing Medicaid law the cost for recipients Qualified Community Based Attendant Services can not exceed on the average, the cost to serve the same eligible population in institutions. States which have similar, mature programs have found -- in fact -- that the much talked about woodwork effect is over stated, and Kansas has found that by increasing the amount of consumer control saved the state an extra $1,000 per person per year than was originally estimated. In Kansas the cost of these waiver services is about a third of the nursing home cost (including services to people whose needs cost over $50,000 per year.)

Although some claim HR 2020 lacks quality assurance and safeguards, HR 2020 uses existing Medicaid quality assurance guidelines, and direct the secretary of HHS to develop new guidelines for consumer directed services.

Some claim HR 2020 redirects 25% of existing nursing home and ICF-MR funding. Instead what HR 2020 allows individuals who are eligible for these services to choose to receive the services in their own homes. It allows the funds to follow the individual instead of tying them to facilities.

How people can believe HR 2020 does not serve people with mental disabilities when it specifically states that people eligible for ICF-MR services is difficult to understand. However, MiCASA will serve many people with disabilities of many kinds including mental disabilities. It does not provide every service possibly available, but if it does not meet your needs you don't have to choose it. Most people want a menu of services -- where you select the items you need, rather than a package -- which is all or nothing. Qualified Community Based Attendant Services will meet the needs of many people with mental disabilities.

People sometimes confuse consumer control and/or independent living with having to take care of every detail of attendant management. For some this is the way they chose to exercise control, for others it is not feasible, still others do not want all the hassles attached. HR 2020 is not a best and brightest bill. People with all types and severity of disabilities must be served in any piece of long term legislation passed.

The Medicaid long term care service system must change and change causes the status quo to defend itself. HR 2020 is a beginning.

The "woodwork effect" has been given as one of the main barriers to reform of long term care. Studies at the University of California and AARP, put this assumption in question. The Congressional Budget Office is reassessing at their initial estimate. There is no large group of high end attendant services consumers, let's say vent users, hanging out in the back woods, getting by without services for the past 30 years. The experience of states with mature programs similar to MiCASA have shown that the fear of the woodwork effect is greatly exaggerated.

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HR 2020 - A BEGINNING

It gives individual with disabilities and families REAL Choice!

HR 2020 also allows for various delivery options to include vouchers, fiscal intermediary or consumer controlled agencies. REAL Choice!

In HR 2020, regardless of the delivery mode, an individual shall to their maximum capability get to select, manage and dismiss their personal attendant. REAL Choice!

Throughout my testimony I have talked about REAL Choice.

REAL Choice is about changing the way we think about long term care services,
REAL Choice is about fairness in funding.
REAL Choice is no disincentives to receiving community-based services.
REAL Choice is about options in how services are paid for and delivered.
REAL Choice is about people.

People who receive long term services are calling for change

HR 2020 is a critical step on the road towards a more comprehensive long term care program.

ADAPT believes this hearing on HR 2020 is just a beginning

This bill is so important to people with disabilities living in each of the 50 states that a hearing in Washington, DC cannot convey the intensity of feelings about this issue that I hear as I travel throughout the country.

ADAPT believes that one step the Health and the Environment Subcommittee of the Commerce Committee can take as HR 2020 goes through the legislative process, is to hear from REAL people receiving long term care services.

This can be done by scheduling regional hearings in targeted cities over the next 6 months. This till allow REAL people to shape the legislation and assure that it will work after the print dries on the paper. ADAPT offers to work with the Committee to make these hearings successful.

Thank you for your support of the long term care needs of people with disabilities.

There's No Place Like Home!

Thank you,
Mike Auberger
ADAPT
PO Box 9598
Denver, CO 80209
(303) 333-6698