Testimony of Bob Liston
Hearing of the Senate Finance Committee, September 25, 2007
Thank you for the opportunity to testify today on expanding options for long term care services and supports by continuing the efforts to rebalance the nation's Medicaid-funded system to include more home and community-based care. Our long term care system is broken (*or if you can think of a less jargony way to say that – it would be great) and needs to be reformed. Kafka really thinks this needs to be stated early in the testimony and re-stated again.
My name is Bob Liston, and I am both proud to be a person with a disability, and proud to be from Montana, The Last Best Place. In Montana, I have the honor of serving as the Executive Director of Montana Fair Housing; the President of the Board of Directors for the Montana Advocacy Program; I'm a member of Missoula People First; a member of the Missoula Coalition for Disability Rights; a member of Montana ADAPT; and a recently retired member of Montana’s State Independent Living Council. In my younger years, I helped to establish Montana’s first Center for Independent Living. In addition, I spent ten years in the state of Michigan in the 1980s and 1990s where I worked in both the Independent Living and Developmental Disability arenas.
I am testifying today as an individual who has lived with disability for 37 years. I am part of a disability community that according to Census 2000 includes 17% of the nation’s population.
I am also testifying as one of the legion of baby boomers beginning to knock on the doors of the nation’s public and private long-term care service systems. In all my 53 years on the planet, I have never met anyone of any age or disability who said they WANT to live in a nursing home, or ICF-MR facility/ any other kind of institution.
And finally, I am testifying as a professional who has worked and volunteered over the course of a lifetime to assist people with even the most significant disabilities to move out of nursing homes and other institutional settings, and to live in their own homes in their own communities with the necessary services and supports. My expertise is not academic, or as a researcher or in the bureaucracy that administers various programs. Both my personal and professional lives have been lived, with intention, “in the trenches” partnering with one person at a time to help them live the life of quality and dignity they want, surrounded by their families and friends, in their own communities. Because they have allowed me into their lives to partner with them, I have learned more than I ever could have imagined about supporting people to live in the community. I can say with complete confidence that I KNOW what’s possible.
And, while doing this work, and demonstrating not only what’s possible, but, in fact, practically do-able, I have tried to lead by example so that as I age, and as my disability further affects my functioning, there will be in place “a level playing field” when I need it. I want to know that neither my age nor my disability will sentence me to an institutional situation like a nursing home. I want that “level playing field’ so I have a choice in where I live and from whom I purchase my long-term care services and supports when I need them. Right now there is an entitlement to nursing homes and a defacto entitlement to ICF-MR services, but community services are optional; and with the limited long term care dollars we have today, this means people like me rarely have a real choice of community without a LONG wait.
When I was an "invulnerable" 16 year old track competitor, I rolled down a mountain in a pick-up truck on the outskirts of Helena, Montana. Montana being a rural and frontier state, trauma centers were few and far between back then, as they still are today. I was taken to a hospital nearly two hours away and after spending three months there immobilized in a Stryker frame, the doctor came into my room on the last day, casually told me, “Oh, by the way, you’ll never walk again,” and then signed the order sending me to a nursing home.
Upon arrival at the nursing home, even in my shock and grief at hearing the doctor’s final words to me, it took me about 30 seconds to realize, “this is where people come to die.” And during the four months I spent there, they were dying…all around me. I know first hand what being sentenced to a nursing home is like, so I’m sure you won’t be surprised when I tell you that I’d rather die than ever have to go back to a nursing home again.
In many ways I represent the “Everyman” and “Everywoman” in this country. Nobody of any age wants to be institutionalized.
I am not a man of means. I work full-time and then some for a small Montana non-profit that exists to insure that no Montanan experiences discrimination in housing. I work very hard, but Montana Fair Housing runs on a shoestring- a shoestring that doesn’t include either health insurance or a retirement or other long-term care program. My wife and I save for our eventual retirement, but it’s unlikely that, no matter how much we scrimp and do without now, we’ll be able to cover all our long-term care costs out of our own pockets. That means that it’s highly likely that at some point in our lives, we may have to rely on Medicaid-funded long-term care services. This is the situation of many aging baby boomers.
And more and more baby boomers are aging.
Right now, according to CMS, nearly 70% of Medicaid long term care dollars go to support nursing homes and other institutional settings, just over 30% of our Medicaid long term care dollars go to support home and community-based services. And as I understand it, that 30% serves more people per dollar than the 70% does. This ratio has me gravely concerned for my own future because it means that I don’t have even a 50-50 chance of being able to choose to stay in my own home as I age and become increasingly disabled. The current institutional bias in the nation’s Medicaid program gives me 2 to one? odds of being forced into a nursing home. The Community Choice Act would level the playing field and give people a real choice.
This current ratio also means that a creative state like Montana doesn’t have the flexibility to stretch precious federal and state dollars in a way that is most efficient, cost effective, and in keeping with needs and desires of its citizens. We are the fourth largest state in geography with one of the smallest populations in the country. There is an average of 6 persons per square mile across the state. In a rural, frontier and tribal state like ours, or Alaska or Wyoming or North and South Dakota or a number of other states, offering people only the choice of a distant institutional setting is not a choice at all, and it’s cruel to the individual, and cruel to our families and friends. Real choice would not only serve us better and more cost effectively overall, but it would give the state the tools it needs to be good stewards of public money while being responsive to its citizens. The Community Choice Act would give the states, as well as individuals and families, real choices in providing long term services and supports.
There are so many people I wish could have had the opportunity I have today to testify before this august body. Since that isn’t possible, I would like to be the vehicle for just a couple of them to share their stories. They are people that my wife and I know, and they represent just some of the reasons why this country desperately needs the Community Choice Act.
When I was sitting on the Montana State Independent Living Council, one of the other members hailed from the Fort Peck reservation in the far northeast corner of the state. His community was an 8 hour drive to and from Helena where most of our meetings were held. When his sister came to need more assistance and support than his family was able to provide, she had to move to a nursing home nearly five hours away from her community because that’s the closest facility that had a place for her. Five hours away from her home, her family and friends and her culture. If the Community Choice Act had been in place, she could have the choice to stay in her own home, receive culturally appropriate care, and continued to be a valued part of her family and community.
Instead she was completely separated from everything she knew and everyone who loved her, and placed in the closest available setting, which then meant her family had to make an expensive ten-hour round trip just to visit her, and check on her well being. This is an everyday reality for those of us in rural, frontier, and tribal America, and those of us who live in rural, frontier, and tribal America are treated unfairly under the current long-term care system. This is only one example of countless thousands of families who everyday experience hardship, and heartache, and loss when family members are forced into distant institutional settings, deprived of any choice by the current long-term care funding system.
I am told that the average cost of a nursing home in America is approximately $42,000/year, and in the average nursing home, according to data collected by CMS, a resident can expect to receive an average of 3 hours a day of actual contact with a staff person. On the other hand, the average cost of home and community-based consumer-directed personal assistance services is about $15,800/year. In Montana, for someone who receives funding for the maximum time allowed of 40 hours/week of personal care, and pays their attendant $9/hour, the yearly cost would be about $18,800. Even if you add in another $1000/month for food and shelter, the total is only 73% of what our public dollars currently pay for a nursing home, and the person receives almost twice as much contact each day with a care provider. Plus that care is delivered in a setting where family and friends can monitor the care and supplement it with additional unpaid support.
Another person I bring with me today is my friend Gail. Gail is now about 40 years old, and has significant cerebral palsy. She uses an electric wheelchair, an assistive device for communication, and she needs hands-on help to get up, dress, eat, bathe, and use the toilet. Gail graduated from high school with my wife’s younger son, Steve. After school Steve would jog to the locker room for football practice or baseball practice depending on the season. Or maybe go home to prepare for a big dance or a concert, or go to his part time job. Gail, on the other hand, would be put on the little yellow bus that shuttled her 20 miles to the nursing home where she was forced to live when her mother could no longer care for her at home. (Would be good to have a tiny detail of why she couldn’t do it: Too heavy? Had to work? Whatever the reason or if necessary make up the reason – just brief but I think it will humanize it and distance it from the VOR AFSCME argument.)
When my wife Marsha would visit Gail, regardless of the time of day, she would almost always find her lying in bed waiting. Waiting for someone to help her into her wheelchair. Or waiting for someone to clean her up and change her bed linens because the staff didn’t answer her bathroom call in time and she had been lying in her own waste for an hour or more. Or even worse, Marsha would often find Gail lying naked and uncovered with her door left wide open waiting for staff to return from some errand and dress her.
Gail is a bright, funny, warm, religious woman who worked hard to be awarded her regular high school diploma. But in the nursing home, she was just another body that had to be quickly dressed, bathed, fed and changed. Her electric wheelchair afforded her a great deal of independence when she was allowed to use it, but it was rare that she got to use it in the nursing home because it was more convenient for the staff to leave her lying in bed all day.
We fought hard to help Gail achieve her dream of her own apartment. The good news is that Gail did leave the nursing home, and she did move into her own apartment where she continues to direct her own staff. She schedules her staff so she can get up when she wants, eat what she wants when she wants it, use the bathroom when she needs to and avoid accidents, and finally, at long last, have a life. A life that includes all the things she was never allowed to do in the nursing home. All the things you may well take for granted, like going to the mall, voting, having dinner with friends, getting her hair done, and volunteering. If the Community Choice Act had existed when Gail was a young teen, her single mother could have had the assistance she needed to keep Gail at home, and Gail could have progressed much sooner from her mother’s home, directly into her own home, and not have had precious years of her life wasted in the nursing home
The one thing you can say about disability is that it’s “equal opportunity”. Disability can strike anyone at any time with no regard to age, race, gender, political affiliation or any other distinguishing characteristic. It may be acquired before or at birth or later, through accident, disease, medical condition, war, or simply through the normal aging process.
Add to that the prediction in an Alliance for Health Reform Issue Brief earlier this year that estimated when the last of us baby boomers reach retirement, the nation’s population of those over the age of 65 is expected to double.
And when we also consider how much has changed in this country since the mid-60’s, it’s no wonder that the 40 year old Medicaid and Medicare long-term care systems are no longer a good fit for most of America.
If we are to efficiently and effectively serve the incredibly diverse population now and soon to be eligible for long-term care services, we must provide more than the current “one-size-fits-all” method of service delivery. We all know that something that is “one-size” never fits anyone properly. The Community Choice Act is a beginning to providing both individuals and states with the opportunity to “customize” services to fit each individual and each state, using the tools of choice and consumer control to craft respectful, responsive services for one person at a time.
Customization will require that:- People have real choice in where they receive their long-term care services and supports;
- Eligibility for services must be based on functional need, not on a specific diagnosis, a person’s age, or a discrete funding stream;
- Attendant services must be available in the community, 24 hours a day, seven days a week;
- Attendants must earn a livable wage and have benefits;
- Consumer control must be maximized at every step of the process, including flexible payment and management systems.
Fully balancing the nation’s long-term care system to provide the level playing field that allows for this customization will take time, but there are immediate steps that each of you can take now to end the institutional bias in Medicaid. One of those steps is passing the Community Choice Act.
The Community Choice Act (CCA) (S. 799) gives people real choice in long-term care. It provides people eligible for Nursing Facility Services, or ICFs for people with cognitive and intellectual disabilities, with the opportunity to instead choose community-based services and supports. Nothing in the bill forces states to close NFs or other institutions, nothing in the bill prevents anyone from chosing a nursing home or other institution. (I put this here, Bob K. put almost exact same thing at the end of the paragraph before the bullets were the is now) Rather than be forced into any type of institutional setting, people would get assistance in their own homes. That assistance would include the basic activities of daily life that most people take for granted like meal preparation, eating, toileting, bathing, grooming, shopping, managing finances, and participating in the community.
The Community Choice act addresses the need for assistance with health-related functions, and implements other necessary reforms, like:
- providing assistance in a person’s home and community, including at school, at work, or when participating in religious activities;
- including systems for securing back-up attendants;
- offering options for consumer control of services;
- supporting essential, often minor, one time expenses for things needed by people returning to the community, such as security deposits for housing, bedding, and kitchen supplies.
The Community Choice Act does not create a new, unfunded mandate.
We already pay for this assistance when people are forced into nursing homes and other institutions by the Medicaid institutional bias. The Community Choice Act simply makes the existing mandate more responsive to consumers, and in the aggregate will prove to be a more cost effective use of public dollars. It doesn’t make more people eligible. People who are already eligible for services will have a real choice, a level playing field, with the Community Choice Act.
Every major national disability organization supports The Community Choice Act. In fact, 92 national organizations are Community Choice act supporters. An additional 255 state or regional organizations also support the bill, as well as 306 local groups. I have included the full list at the end of my testimony. As you look through the list, you will notice just how diverse the support is.
Supporting organizations represent people with all types of disabilities: people with cognitive disabilities, people with sensory disabilities, people with mental health labels and people with physical disabilities -- of all ages. It even represents people without disabilities!
Also appended to my testimony is a DVD containing the testimony given by a number of other individuals at a national hearing held in Nashville, Tennessee, last year. The hearing was attended by federal officials from Health and Human Services and the National Council on Disability, as well as representatives from national disability organizations. Each one of you received this DVD in early May of this year.
I urge you to pass S. 799 out of committee and on to the full Senate. The disability community has been waiting for over 15 years and we are becoming Seniors who are still waiting for Community Choice.
In closing, I would like to thank Senators Schumer and Salazar, for their co-sponsorship of the Community Choice Act. And thank you all again for providing me this opportunity to testify. I would be happy to answer any questions that you may have at this time.