Testimony of Justin Dart
Given at the Congressional Hearing HB2020, the Medicaid Community Attendant Services Act, March 12, 1998
I have dedicated my life to empowerment and to justice.
On December 7th I suffered a serious episode of heart failure. After eight days of intensive cardiology care the world class professional staff of Georgetown University Hospital had saved my life, but exhausted the resources of Science and were unable to cure the disease. I do not know how much longer I have, but it was clear to me that my life would best be continued at home. I now live at home with the assistance of an attendant and family and friends. Here I am surrounded by people I love. Here I am in command of my life. Here I can pursue the life I want.
This episode has only brought home to me the importance of having choice and control in one's life. And that is why I am here to day testifying in support of HR 2020, the Medicaid Community Attendant Services Act, MiCASA.
Colleagues, this hearing and this bill give us an opportunity we must not pass up. HR 2020 provides the opportunity to create choices for people, for government and for our nation. I urge your full support of this bill.
Right now, as we sit here, over two million Americans are institutionalized. And many are there because we have not yet had the
will to give them the control and choice, the basic human right, to live where they want to live. We spend over $51 billion dollars on Medicaid long term care. Eighty percent of that, $41 billion, pays for institutions, mostly nursing homes and Intermediate Care Facilities for the Mentally Retarded, ICF-MR. The other 20 percent covers all the community based services available under Medicaid.
We tried to address the problem of long term care when we created an entitlement to nursing homes, and before that when we created the various state institutions for people with disabilities. But we did not get it quite right back then. We thought we would be offering a basic safety net. Instead we have created a trap in which millions of Americans have become entangled. People have had to give up their homes, their marriages in some cases, their children, their parents and many of the most important parts of their lives, because they need assistance they can not get at home.
The reality is that I am personally able to afford some of the supports I need. Most Americans can't afford these services and don't have the option of living a better life at home. They don't have a real choice. HR 2020, MiCASA -- which means "my home" in Spanish -- would give them that real choice.
MiCASA offers a simple solution to a problem we unsuccessfully tried over a quarter of a century ago to address. MiCASA says let's let the people we already have decided are entitled this fundamental support from their government, let's let them decide where they want this support. MiCASA says let's give people real choices. Let's let the money follow the person.
America is not built on the principle that corporations should have a guaranteed income from the federal and state governments at the expense of our most vulnerable citizens. Our nation is founded on the ideals of liberty and justice for all. Sometimes we stray from these ideals, but we can, and we must, return to the right path. HR 2020 would take us a giant step toward that right path.
MiCASA simply says let the free market system drive options for long term care. Those who choose a nursing home or institution have that option. But for those who do not choose that option, those who must have the support services but want them in the community, those individuals would have real choices too.
HR 2020 would give governments more flexibility as well. Yes. The states would have more flexibility too to give their citizens what they want. I come from a business background and there the bottom line is the dollar. When you are given a fixed number of dollars to do a job, and told "these tasks must be provided, and then you can embellish with the rest," well, you have to spend the money on the required items first. Under Medicaid, nursing homes and ICF-MRs are required. Attendant services are not. This has lead to gross inequities between states.
I doubt there is a person in this room who is not aware that community based services are the preference of most Americans. Some of us would rather die than suffer the indignities and losses of institutionalization. Right now however, though community based services occupy more than 80 percent of the talk, the thoughts, the beautiful creative energy of our national leaders in this field, these services must eke by on 20 percent of the funds. All the waivers, the optional programs, HCBS (Home and Community Based Services), the Personal Care Option, all are funded with that 20 percent of the Medicaid long term care budget.
When I look at this scenario from my business perspective I see this is backwards.
Why are we wasting money forcing some people where they do not want to be? Where is the fiscal responsibility in that?
For the past 30 years I have struggled to be a soldier for justice, empowerment and human dignity, and from this perspective too
I see the current system is backwards.
The toll on human lives has not been calculated. But colleagues, it should be calculated. Our current policy forces choices on our fellow Americans which no one should have to make. No one should have to give up home, job, family and liberty so she or he can take a bath, eat dinner or get into bed. However, that -- all too often -- is exactly what happens. According to a 1997 study done by the National Alliance for Caregiving and AARP, over 22 million households provide caregiving in the United States. That is one
in four. And the effect spreads even to our economy since the majority of these caregivers -- 64% -- are employed, 52% full time. "For these caregivers, the responsibilities of caregiving have a direct impact on employee productivity and on those who work with them" this study reports. "The aggregate costs of caregiving in lost productivity to US business ... is $11.4 billion per year. These numbers should be considered very conservative.... If all these additional [those providing more limited care] employed caregivers were included in the calculations, the total cost would exceed $29 billion per year." This study just shows a sliver of the problem, looking at absenteeism, replacement of workers who must quit to provide more full-time caregiving, crisis management and superv
ision problems. It does not calculate lost wages, and it only looked at caregivers of persons over 55 years old.
When I wear my cowboy hat from my Texas years, and I think of the values on which this nation was founded -- freedom, independence, opportunity, opening up new frontiers -- this scenario seems most backward of all. "One nation, under God, with liberty and justice for all?"
This country was founded on these principles, but for many in our great nation, these are little more than a dream. I can tell you from my own recent experience, that despite the world class professionals at the highly and justly respected Georgetown University Hospital, I felt like a laboratory rat in a cage. Our long term care system, especially for those who can least afford to make their own options, does not reflect our values. I have not given up on our forefathers optimism however, and I tell you MiCASA, HR 2020, can help get this nation's policies back on track, if we have the courage to follow our principles.
As I have grown older, I have found my functional abilities have become more limited. I have more health problems. I need more help. And as I have approached this situation I have felt first hand the chill of my options becoming more limited. How much more deeply would I feel this chill if I were depending on Medicaid for my long term care? Our nation is growing older, and more and more of us are, and will soon be, facing this situation. More people, with more severe disabilities are living longer and have the potential of being more productive given the right options. You, our nation's leaders, must grab this problem with both hands, and cra
ft a better solution. HR 2020 is a powerful tool which now lies in your hands.
My recent experiences confirmed something else I have known for some time. Our current service system is overly medical, and too focused on the medical model of service delivery. Do not misunderstand me. We have some of the top medical resources in our nation. And these resources can in many cases literally perform miracles. This is especially true in acute health care situations. But long term care, attendant services, the medical model has taken over too much. It is paternalistic and robs people of their self control and dignity. It does not empower the individual and in truth fosters dependency on the health professional. It does this very
expensively at the cost to the taxpayer.
In the last decade I have traveled all across this nation meeting with literally thousands of people involved in the disability rights movement. They are my source of empowerment and I have learned much from them. Again and again I have heard of the critical need for consumer controlled attendant services, like those in HR 2020. I urge you to hold town meetings or hearings in your districts and hear their words directly. Listen to the stories of the impact these services, and the lack of these services, have on people's lives. Now my life is changing and as it changes it is reflecting the stories from thousands of individuals from all corners of this nation. Every one of our lives will change in this way within the next few decades. Will the future be ready for you?
The states can act as the engines of creative thoughts and ideas. MiCASA begins the process of allowing states to redesign long term care programs to meet the unique needs of individuals with disabilities. The status quo is no longer tolerable. There are exciting innovative programs throughout the country. Wisconsin, Kansas, California, Colorado and Massachusetts all have programs that encompasses the principle of choice, control and empowerment. The problem is that, for the most part these programs reach such a few people, even in the states where they exist and far, far too any are left with little or nothing. Our nation is great enough to have a true safety net, below which no one may sink.
We have programs across the states which show the MiCASA approach will work. Kansas and Oregon are two states that have had open waivers for many years and the so called "woodwork effect" has not busted the bank. MiCASA can work, meet the needs of people with disabilities and do so cost-effectively.
I leave you with a call for action! To Congress I say act on HR 2020 now! The country is watching! To people with disabilities I say unite, act and speak in one voice for HR 2020. The enemy wants us to fight among ourselves. To family members I say advocate for your children understanding they may have different goals than you do. Ultimately family members working with people with disabilities will be a powerful advocacy unit to confront. To providers I say work with us, don't fight us - impowerment is infectious, it's good business as well as good for people with disabilities. United we are a powerful force to be reckoned with.
The struggle for HR 2020 will be difficult but nothing good comes without struggle. If we are resolute we will prevail - if we falter our friends will support us. We will not go away.
I have served many Presidents and believe in the public process. I urge the members of this committee, the Congress as a whole and the Clinton Administration to make a commitment for HR 2020. Your leadership is essential.
There's no place like home.