Transcript of Public Hearing Indianapolis
BEFORE THE INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION IN THE MATTER OF INDIANA'S PLAN FOR COMMUNITY INTEGRATION OF PERSONS WITH DISABILITIES. PUBLIC HEARING, TRANSCRIPT OF PROCEEDINGS, PETER SYBINSKY, HEARING OFFICER, AMERICAN RED CROSS, 441 EAST 10TH STREET, INDIANAPOLIS, INDIANA. NOVEMBER 16, 2000, ACCELERATED REPORTING AGENCY, 2766 NORTH 600 EAST, FRANKLIN, INDIANA 46131, 317/736-6115
PROCEEDINGS
HEARING OFFICER SYBINSKY: Good morning. Welcome to the public hearing for Indiana's Plan for the Community Integration of Persons with Disabilities. This is the second meeting in a series of three, and it is to basically get public input on what we're doing, what we propose to do, and the basic values and standards that we use to do it with. Before I begin, I'd like to make some introductions. I'm Peter Sybinsky, Deputy Secretary of Family and Social Services, and I am the Chair of the Action Team for Community Integration, and this whole plan and process is under my purview.
I'd also like to introduce from -- I want to emphasize that this process, this listening process, we're not going to be here to answer questions or to in any way try to impede the flow of information to us. And so I wanted to emphasize that we have people from all parts of FSSA who are involved in this Community Integration activity here to listen to you and perhaps to talk with you after the meeting is over, if you'd like.
I'd like, first, to introduce Ms. Karlin Dunlop and Mr. John Viernes. Karlin is the Deputy Director for Contract Management for Mental Health, and John is the Deputy Director for Public Policy for Mental Health. They're both here. I'd also like to introduce Mr. Alex Braitman who is our Deputy Director for the Bureau of Developmental Disability Services; Mr. Bob Hornyak who is the Assistant Deputy; Director of Aging and IN-Home Services for the state.
An outside partner in Services for the Disabilities is our Protection and Advocacy Agency, and I really the attendance of its Director, Mr. Tom Gallagher. Tom, thank you for coming.
There are other people here who can answer questions, and if any our people who are identified can't answer the question, either they will find somebody who can or will help with facilitating a response to you at a later time.
A few logistics: The rest rooms are right out to the left-hand side -- and in a two-hour meeting that sometimes is pretty important. Our court reporter, Gay Shingleton, is here to record a record of everything that is said to make it an official record. We're also making a tape record for those who need it. And I want to emphasize that we are also preparing the documents that we've handed out today in Braille so that we can respond to the needs that come up -- that were reflected yesterday by people who asked for that medium.
I want to mention that if you do need Braille copies of the materials that were handed out, please let us know at the end of the meeting and we will see that we send you a copy, because we're in the process of producing them right now. If there's any other way that you find would be the helpful to you in interacting with us in this meeting or in getting records or documents from us, please let us know.
We are really anxious to dialogue with the community and we'd like to work out every way we can possible to make sure that that dialogue reaches everybody who wants to participate. Our interpreter is Linda King. Roger Hubbard and Ehren Bingamen are here from the Office of Community Planning to help us with the logistics of making sure this input, it flows as well as possible.
I'm going to begin the real meeting right now, and the meeting has two parts. One is a brief slide show to show you where we are and what we propose to do with the planning process and to ask for input by -- we ask for input by things that we've said on that slide show. But we also want to know your goals, the things that you feel are most important for us as we bring up this process, and we'd like to hear that.
After the slide show there will be a testimony period that takes place and will last as long as it needs to last, basically. So without further adieu, I'd like to go into the slide show.
The purpose of this meeting -- and I'm going to repeat a little bit of what I said in a little bit more detail -- is to provide us at Family and Social Services Administration with information to assist us in development of a comprehensive plan to improve and expand community-based services and supports for persons with disabilities.
It's also there to assist us in the development of goals that will eliminate unnecessary institutionalization and support consumer choice and self-determination.
The reason why we're doing the public hearings -- and you'll see more public interaction later on as part of our plan -- is because the real experts are you, the people who serve disabled persons and their families and people who have disabilities and who are in need of services, but really know what they need and know the kinds of services and supports that they need to have. And the matching between the good will of the providers, the State, and the folks who are involved in this process is vital for us to make sure that this works.
You're on the ground facing the problems that you face. We need to know and we need make that part basic to our plan. When it comes to -- it's comprehensive and that's what we're focused on, making it comprehensive so we've got people from mental health and developmental disabilities, people who serve the physically disabled, people who serve the needs of aging people who are becoming less able to cope with many activities of daily living and reach out and get information from them.
We need to also describe a common vision and focus on how we move forward; that is part of this plan. We need to identify major goals and values that we hold in common; describe how we're going to achieve this vision, and set measurable objectives so that we can actually measure our success or our lack of success, make corrections, and move on.
Indiana's commitment here is to replace unnecessary institutionalization with effective, caring community supports and services. We want to include persons with disabilities, their families, advocates, and providers in the development and implementation of this plan and set measurable objectives so that we can measure our success or, as I said, our failure.
Failure is not unique to human life; it's a part of everything we do, but only by finding out why we fail can we make the necessary corrections to do it right the second time.
How are we going to go about this? Well, the secretary of Family and Social Services, in response to an executive order by Governor O'Bannon, has established at the executive level a Community Integration Action Team, and this consists of persons at the very top of mental health, developmental disabilities, aging and rehabilitation, healthcare financing, and developmental disabilities.
These folks are basically responsible for putting together an overall plan which covers everybody. This is a high-powered group of people who are very, very interested and concerned and which have the resources and authority to get the job done.
The second element in this plan is advisory subcommittees to each of the major areas in the planning process: Mental health, developmental disabilities, aging and rehabilitative services, and services for persons with physical disabilities.
Those three areas are going to have subcommittees of community providers, families, and, most importantly, persons with disabilities themselves so that we can have the best kind of input, input from people who are actually involved in the process, as we formulate this activity.
The third element is this: It's ongoing community dialogue. This is one mechanism, this meeting today -- and there are going to be more community meetings as we move through this process -- where we dialogue with you, where we listen to what you have to say, and where we find out the information that really is important to us to make the plan work for you and those who you serve.
We're also going to be conducting interviews and focus groups. We're going to be taking lists of people who come here, finding people who are going to be, I think, very -- the best at providing us with in-depth discussion. There are certain things you can do in a public meeting. You can isolate problems; you can get adept at feeling, but to get into some of these complex problems, we're going to have to have things like focus groups and we're going to have to do things like interviews.
And we're committing ourselves to make sure we get into the details of some of the knotty issues that you identify. We have a Web site at FSSA. At the end of this meeting, we'll give you the Web site, you'll be able to write it down. But the Web site has all of the Olmstead materials on it right now and the Olmstead materials, as they continue to get updated, as we add to them, as we develop this plan, will be on the Web site. So either from your home computer or from a library or some way you can get on to the Internet, you can get everything that we've got on this Web site, and you can interact with us, providing us with comments and information via that medium as well. And a blanket category: Input any way at any time. Write a letter; telephone call; various ways that we may not have thought about right now in terms of providing input.
We'd like ideas on ways we might better dialogue with the community, with advocates, with people with disabilities. And we commit ourselves to doing the very best we can to develop those new mechanisms. They are going to help us to do that.
The plan is going to be essentially two documents. The first plan, the first part of the plan is a preliminary report to the Governor which is going to give him basic goals, an overview, the subject matter of what we get from this meeting today and the other state meetings. And we're also going to begin our pledge of recommendations for 2001 and 2002 biennium. That's going to be a relatively brief report because we are starting this process now.
The longer report, the one that looks at the long-range and the futures and the priorities, is going to be in the second report to the Governor, due in June of 2001. It will outline more fully our goals and how we are going to achieve them, description of the changes that we're seeking in the system, identification of resources, external and internal, that we're going to need, measurable objectives, and expected outcomes, ways that we can see whether we're being successful or not.
If you want to copy this down now, you can, but we're going to show this again at the end of the meeting. We have a 1-800 number. You can call us at any time, leave a message. We will get back to you with information or we'll take any comments through that 1-800 number. The TTY number is there as well. Let me -- that number for TTY -- well the number 1-800 is 1-800-545-7763. The TTY number: 1-800-962-8408. The Web site is www.in.gov/fssa/. We'll show this again at the end so that you can copy it.
Now we're through with the basic information on what we plan to do, and I invite you now to testify. Because there are a lot of people who want to provide input -- and we had quite a few people yesterday in Merrillville -- we're setting a few ground rules for how we conduct the testimony.
We had asked folks to telephone in ahead of the time, give us the names of people who wanted to testify, and we have a list of those people. Further, we have a sign-up list for testimony in the back that people have signed up, and that adds names to the list.
We will start off with the people who called in first; they can testify. And then we'll move to the sign-up for testifying list; I'll call those names. And, finally, anyone else who feels they would like to testify at that point is invited to testify.
One ground rule is because of there are many people, I want to make sure everybody gets a one to three minutes. But as we get through the whole agenda of testimony, if there is time at the end those people who would like to elaborate on what they testified upon earlier are free to do so.
So, if I could begin, I'm going to start with the first name on the list, and that's Donna Roberts, Executive Director of the Cerebral Palsy Association.
MS. SHACKLETON: Excuse me.
HEARING OFFICER SYBINSKY: Yes? Oh, I'm sorry. Donna, if I could, we had a request for someone to move who has an appointment to go on. So, Suzann Shackleton. By the way, we do have a mike we're moving around the room so you don't have to come up. We will have the mike brought to you. So if you can raise your hand, Roger can get it to you when you want to testify.
SUZANN SHACKLETON, ST. VINCENT WILLIAMSPORT HOSPITAL., NURSING SERVICE. Thank you very much. I'm Suzann Shackleton. I'm a social worker in rural Fountain and Warren County. We are border counties west of Lafayette. There are no stoplights in Warren County.
We have two representatives; two Arnie's, one has a drive through, and, of course, it's the home of Stephanie McCarty.
I am here today as the social worker; been back to my home community. I'm fifth generational of family farms. I've been back 22 and a half years as a professional social worker.
Currently, I am the priority caregiver for my father, who's 91 years old. He was on the floor last night. The neighbors helped get him up.
He very much wants to stay on the family farm where he was born and raised and has been since 1941, in the farm. I'm also a social worker part-time at St. Vincent Williamsport Hospital, and I'm the professional liaison to support groups for people with MS in Fountain and Warren County and also a support group for people with disabilities, and caregivers.
I feel as though I'm representing my family and also infants, children, and adults, elderly people in our community; namely, Ian, Seth, Eddie, Shelley Wilson, Christina, Brock, Linda, et cetera, et cetera.
The reason I asked to testify first is you will be reading about Ian Farrar in the Indianapolis Star in the next day or two. He is a 6 year-old who is receiving a car that has been developed under the direction of Dr. Charles Dietzen and some students at IUPUI.
Certainly, therefore, I have understanding and recognize challenges that people with disabilities and caregivers encounter in the rural area. Observations include, one: Why does the family have to work with various agencies resulting in multiple case managers, case workers, counselors, et cetera, et cetera?
Also, those people, number two, have limits in their ability to respond to the clients needs due to
(a) limited resources;
(b) lack of training and technical knowledge of details in their own and other agencies;
(c) lack of sensitivity of needs of clients and their families.
I've had clients say, "They don't have a heart of my needs. If it isn't on the page, if it isn't on the menu, they just don't know what to do with us."
B. Lack of responsibility and creativity to adult wraparound services; and [sic] it takes more time and creativity. Creativity and commitment are real keys to develop community-based plan of care. Institutionalization is truly an easier option.
Number three observation: The programs of client focus are not always consistent with family needs. Persons with special needs affect the entire family system.
4. Programs are often urban oriented and not adapted to the rural area.
5. Systems are at a standstill; cases are not being processed and funded in a timely manner. When I had a lady with MS who had waited three years for services through vocational rehabilitation actually say to me -- and I bet she thought this never would happen -- but, in fact, she was making congregations in her home so she could stay in her home and be independent.
When I've had quads actually going out and living independently in their own apartments with services, this brings tears to your eyes. This really empowers a social worker, gives me a draw to continue to work and advocate for people in our rural community. seems as though our institutionalization, our nursing homes, our entitlement -- Medicaid Waivers at CHOICE services, on the other hand, have wait lists, have caps on funding.
Have Medicaid Waiver services had breaks that are less than the actual cost of providing the service? Now, our local home health agency is smart enough to say, How can we take referrals?
They're challenged to say, Can we continue to serve the people that we're already serving in our area? And they're searching for grants to supplement the funding that's being provided. It's a very challenging situation and, of course, some of those families are on this home list also, as you can well imagine.
Consideration needs to be given concentrating family members for care giving, especially when agencies can't provide the nurses and caregivers due to availability of willing and qualified people and/or funding.
Public transportation is very limited; certainly not 24 hours a day, 7 days a week in the rural community or available to provide trips to Indianapolis and other areas where people need to go for the specialized services that goes with more complex disability needs.
I wonder if anyone who works within the system has tried to work with the paperwork for Medicaid reimbursement for families' transportation. Seems like a Chinese fire drill.
My recommendations, then, for would be to give serious consideration to simplifying case management by having one person with the education, training, job classification, the heart, if you will, to work with the client and family with the ability to access multiple agencies, programs, to develop wraparound family-focused, person-centered, coordinated services, rather than not have a clue as to where those agencies are.
And some of them in the rural areas are literally two counties away. We need increased funding for services and we need to recognize the need for travel time and the expenses to rural areas.
Family members need to be compensated or provided care as an option to their supporting their families rather than providing caregivers while family members are gainfully employed outside the home.
Certainly, we need to support family education and develop support groups. Our support groups are well attended and certainly is a support in the educational process.
We need increased support for transportation in rural areas and, as I identified, including the Medicaid reimbursement methodology and more transportation availability for 24 hours a day, 7 days a week.
In conclusion, with an increased number of people with disabilities of all ages living in community systems, it is imperative that changes be made to provide person-centered, family-focused services to meet their needs.
Simplified case management is critical in developing customized wraparound services. Funding must be available to support services and transportation to access these services.
It is encouraging to know you're focusing on the needs of this special population and a growing population. It has been my experience that they can successfully live in a noninstitutionalized environment with support and adaptation and that they're very appreciative of services received.
And certainly we would invite you to come out to Fountain and Warren County and actually do the home tour and visit and see firsthand what is happening.
HEARING OFFICER SYBINSKY: Thank you very much. I'd like to call now Donna Roberts.
DONNA ROBERTS, EXECUTIVE DIRECTOR, CEREBRAL PALSY ASSOCIATION. If it helps your fingers any, I've got copies of my testimony.
THE REPORTER: Thank you.
MS. ROBERTS: My name is Donna Roberts of Greater Indiana. I'm also, 35 years ago, the mother of a child with significant developmental disabilities and now I'm the daughter of a mother who has Parkinson's and who also lives in a nursing home.
So I just want to cover most of the basics here. Rather than get into general things, I'd like to talk about two elements of any plan that comes out of this that are especially concerning to me.
The first issue involves the capacity of the state system to meet the need for competent and caring individuals to provide support to those people with significant disabilities who choose to live in the community.
The plan consistently talks about services and programs, when in reality we're talking about people. The competition for caregivers and personal attendants is increasing at a phenomenal rate and the future is more frightening than the present in terms of capacity.
Not only must Indiana's plan concentrate on developing programs to train and to certify personal support providers, it must also take firm and immediate action in terms of the value we place on that service.
I was listening to the radio on the way home the other day and there was an ad for Mike's Car Wash where they were offering $9 an hour plus full benefits to anyone willing to wipe windshields and cars. Yet certified nursing assistants at the nursing home where my mother lives make $7 an hour to perform much less desirable functions.
Until we are willing to recognize that we must develop competitive salaries and benefit options, we will consistently lose potential caregivers to Mike's and McDonalds.
>The second issue involves quality. Minimum standards for programs do not address the specific needs that the individuals were talking about.
During the early 70s, I was a participant in the closing of the Laconia State School in New Hampshire. And I had to give a report to the court during that process in terms of people being moved out into the community. And one of the things that I was concerned about was that they were developing mini-institutions in the community that were not going to be sufficiently monitored or sufficiently identifiable group homes that are on any street, which is what we want, but nobody knows what's going on inside them.
My fear is that there is an invisibility of problems in community-based programs that isn't going to abate, that isn't going to be touched by the kind of once-a-year surveys, or whatever.
I told somebody today JACO came in and evaluated the nursing home where my mother's at for three days. Well, for those three days, boy, I slept well those nights.
The rest of time I'm there one or two times a day to make sure she gets the services she needs. What we need to do is make sure that we develop a quality assurance system that involves the whole community. It's not enough to bring certain people in for three days once a year. We need to be more proactive in terms of our quality assurance monitoring.
Case management, as we've said before, is a crucial part of quality assurance. And, quite honestly, my experience through our clients about the case management system is that I'm scared.
I am not sure that case managers, number one, are trained or empowered to do the kind of case management that the people that we're moving into communities need to have. They need to have proper training; they need to have adequate case loads and management case loads so there's one person responsible for an individual.
You don't have to go figure out who do I call for this problem. They need to have the authority to push the system to work, and they need to have the mandate to follow it through as far as it goes. Without the authority, case managers are mere information sources. Without mandated responsibilities to achieve outcomes on behalf of their clients, they can become lazy and part of the problem.
That's four basic recommendations, and my testimony is a little more -- elaborates on this. The first point is that the plan must include development of specific training and certification programs for personal care attendants, home health aides, and related care giving professionals.
It must also include looking at some of the solutions that other states -- in California and Pennsylvania I know they're recruiting caregivers out of Ireland because Ireland has the equivalent of a college degree in personal care giving, and the Immigration and Naturalization Services have relaxed their rules in order to bring people into Pennsylvania and California to meet the need.
We need to have sufficient additional funding to increase base salary and benefits for the people we ask to do things that many of us are not willing to do for our own. We need to pay more serious attention to a quality assurance plan that involves the whole community and it includes standards which are tied to the individual receiving the services, not to a program or service.
We need case managers who both have the responsibility and authority to make the system work for the individual to whom they are assigned. The only final thing I would say is that until Indiana and every other state in this union makes a commitment to the fact that people ought to have the choice to live in their community and not in congregate living settings, until we say no more congregate living settings, we're not going to have enough money to provide the supports that are needed in the community.
If we're paying the rent and upkeep on institutions, we're not going to have money to modify apartments and houses for people with physical disabilities. If we keep having the staff budget institutions, we're not going to have the person power in the community to meet the needs. Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Donna. Melissa Durr.
MELISSA DURR, EXECUTIVE DIRECTOR, INDIANA ASSOCIATION OF AREA AGENCIES ON AGING . Thank you. I'm Melissa Durr. I'm the Executive Director of the Indiana Association of Area Agencies on Aging.
Our new office assistant is 76 years old. She is a caregiver. She has a brother who was born with disabilities in 1931, and she's cared for him in the nursing home since 1976.
She goes every day to make sure that he's okay. So she didn't have the kind of system that we need when he was a young man. Had he had that, he would be at home.
He's been in an institution for so long now and he's so frail, we don't know that taking him out of that institution would be a good thing to do. But he's been in an institution about as long as there are agencies on aging that have been around.
We were instituted in 1975 -- '74, actually -- to help implement the Older Americans Act. And for 25 years in this state, we've been working with the state to help get those policies and those visions implemented.
We want to ensure that people have choices. We want to make sure that funding follows the person to the choosing that they choose to the setting that they want to live in, rather than have decisions made based on where dollars are available.
That shouldn't happen. To achieve this vision and to build communities of inclusion of people with disabilities we must strengthen the planning process to strengthen the current infrastructure.
Our system as it exists today cannot meet the challenges of building communities of inclusion under Olmstead. We feel that a strong and vibrant system must do the following: Offer reimbursement rates which retain and attract quality providers.
The situation that we look at today is one where we are losing providers, especially people who provide services reimbursed by Medicaid Waiver.
They show 82 providers have quit doing services this year because there are low Medicaid Waiver reimbursement rates. We need to strengthen the point of entry so that a client can choose his or her preferred services at the time of assessment when you're beginning to get into the system, not when it's already too late to do something about it.
And preadmission screening needs to be the first step in the process, and that should include options of all services available, home- and community-based, and the option of institution if that's what a person prefers. We need to offer a variety of services to people.
We need to include things like assisted living, develop foster care, home- and community-based adult day services. We don't have enough options. And we need to fund the system adequately. We've heard this and I'm going to be preaching on that same thing too.
It's important to understand other organizations to provide care giving -- has to have the capability -- and it's a good investment of dollars -- to invest in people.
Donna made the point very well. You can't say it enough. To meet the needs of consumers to assure choice and to assure quality, we must invest in support services. If we don't do it, we do a disservice. I'd like to thank you for giving me the opportunity to testify and say that we really look forward to creating communities of inclusion in Indiana.
HEARING OFFICER SYBINSKY: Thank you, Melissa. Donald Hartman. No response.) We'll attend to him -- if he comes in later, we'll put him on the list. Lisa Gibson.
LISA GIBSON, INDIANA DEPRESSIVE/MANIC DEPRESSIVE ASSOCIATION. On behalf of the Mental Health Association in Indiana, I appreciate the opportunity to provide this testimony.
Olmstead requires Indiana to provide community-based services to persons with disabilities and this includes consumers with mental illness.
Additional funding for community support services must be part of this plan. Indiana currently has a list of individuals waiting to get into the state hospitals and a list of individuals waiting to get off.
This is referred to as gridlock. People cannot leave our state institutions because there are inadequate services available in the community.
The Division of Mental Health was commissioned to conduct an actuarial study to determine, among other things, the prevalence of mental illness among those who qualify for services at 200 percent of poverty.
Is this the criteria for Indiana's public mental health system? According to this study, the problem for seriously mental ill individuals who qualify for services is in excess of 78,000, yet we are currently serving that impasse at a little over 34,000.
We cannot get people off the state hospital waiting list and into the community when the community itself is so ill-funded, in particular, lack of housing options.
Indiana can take this opportunity in dealing with the Olmstead case to ascertain the minimum necessary for compliance.
Indeed, moving consumers off the waiting list for community support at some regional case is not without significance. As a person with the seriousness of illness called manic depression or bipolar disorder, I know from personal experience the necessity of community-based services.
When I was 23, I had just graduated from college with honors and was on my way to law school when I decided to take a break to school, although I don't know why now I thought I would earn money that way. (Laughter)
The second year of teaching I experienced my first debilitating depression and lost my job, my housing, my health insurance, my car, within six months.
During my years of homelessness, because I had no family to go home to, I found a not-for-profit organization which provided excellent counsel to me at $5 an hour.
But because I did not have the means of support, in terms of assistance with medication, transportation, I reentered into the work force.
I lost years of my life, the prime of my life, to an illness which does not necessarily have to be debilitating if it is treated properly.
Society lost, too, during this period because it could have been through more contributions in terms of meaningful employment, volunteer work for finishing school.
During these years I was so incapacitated. The importance of additional funding to provide community services for persons with mental illness should be a priority.
Society will benefit, too, from the contributions that consumers with mental illness can make in their community. Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Lisa.
STEVE ALBRECHT. INDIANA HEALTH CARE ASSOCIATION. Good morning. My name is Steve Albrecht. and I am with the Indiana Health Care Association.
IHCA represents more than 350 providers of care for almost 40,000 of Indiana's geriatric, pediatric, mentally retarded, developmentally disabled persons.
Thank you for the opportunity to testify today. IHCA applauds Governor O'Bannon's commitment to community integration issues and supports the initiative of developing short-term and long-term recommendations to improve community-based services within Indiana.
Plans are well underway toward developing these recommendations and we welcome the opportunity to offer our comments at today's public meeting and in the future.
IHCA believes that people with disabilities should receive care in the least restrictive setting. However, some disabled people or frail, elderly individuals cannot receive services in a home- or a community-based setting because of their inability to perform activities of daily living.
For them, the nursing facility or Intermediate Care Facility for the Mentally Retarded is the most appropriate place of care. It is important to preserve their choice, with family assistance if necessary, to receive care from the setting most appropriate for the individual.
The Supreme Court wrote in Olmstead: That "nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings."
Also, the Supreme Court said that "Individuals with disabilities and their families [must be afforded] the opportunity to make informed choices regarding how their needs can best be met in community or institutional settings."
We recognize the importance of developing plans to enable individuals with disabilities to live in the most integrated setting appropriate to their needs.
The Supreme Court explicitly recognized that this setting may be an institution. While the Department of Health and Human Services has encouraged states to expand community services in lieu of institutional services, they have also stated, pursuant to the U.S. Supreme Court's decision that "States may choose to utilize their Medicaid funds to provide appropriate services in a range of settings, from institutions to fully integrated community support."
Furthermore, as the Indiana Community Integration Planning Process cover page states, the court also stated that the state's responsibility "is not boundless" and that a "reasonable accommodation" takes into account the state's resources.
Importantly, Olmstead does not require fundamental alteration of Indiana's services and programs. The Olmstead court said the test of fundamental alteration takes into account three factors:
1. The cost of providing the services to the individual in the most integrated setting appropriate;
2. The resources available to the State; and
3. How the provision of services affects the ability of the State to meet the needs of others with disabilities.
Many states are presently developing plans to serve people with disabilities in the most integrated setting appropriate and per HHS guidance are involving people with disabilities and their family members and representatives.
We encourage the Indiana Office of Family and Social Services to continue to seek out as broad a level of participation possible in developing its community integration in order to ensure that the state receives a full and accurate picture of the Olmstead decision, keeping in mind the Supreme Court's admonition that "Nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings."
Thank you for the opportunity to provide our comments today on this important issue of improving the community integration of Hoosiers with disabilities.
HEARING OFFICER SYBINSKY: Thank you very much, Steve.
Phyllis Brown. I just had a request from the court reporter: Please speak as loud as you can. These mikes are not necessarily going to make your voice that much louder, so please speak clearly and loud into the microphone. Thank you very much.
PHYLLIS J. BROWN. My name is Phyllis Brown. About six years ago I started working for Pat Yeager through a home health care service. I was in for approximately four years.
Pat had had a stroke the year before and was right side afflicted. I discovered that Pat had a great sense of humor, and was a very caring person, and was real sensitive to other people's feelings and flexible to their ideas as well.
She had been a qualified medical assistant in a nursing home for 17 years prior to her stroke. A little over three years ago, Pat went to of doing something else besides sitting at home.
Pat has been interested in working a full-time job in her community somewhere in the future and has the patience and stamina to continue working a volunteer position at Hancock County Hospital in Greenfield, Indiana.
She thinks she would like to learn to use a computer and have a desk job, but that presents a vicious circle all in itself. After all, there's so many circles to break first.
During the first year of her volunteer service, I provided transportation. She knew that this could not be a permanent situation and was able to get Medicaid to qualify her for a personal motorized vehicle.
In the beginning, I helped her work through obstacles and solutions. Then she would travel on her own and I would make sure that she got from one destination to the other.
It only took a few months for her to become fully so capable. I had hoped by this a scooter isn't too bad as long as the weather is compatible and the snow and rain doesn't fall out of the sky.
There is no stable transportation system in Greenfield, and of course there's a charge for a taxi service that is there right now but may not be there tomorrow. Pat is on a very tight budget and that would not allow for money to afford transportation, assuming that the system could transport a wheelchair or a PMV.
Of course, if she was earning a wage, she could afford transportation if the transportation could be depended upon. So now we circle right back where we started. The second obstacle that really angers me as a taxpayer is the situation of a handicapped person not being able to work over 20-some hours a week in order that they don't lose their benefits.
As a former special class teacher in my community, I had countless number of parents tell me their children would be going to the sheltered workshop so they wouldn't have to worry about social security benefits disappearing. These cases were high school age students with mental and physical handicaps who were in successful job training positions in the community and were offered the positions after completing the high school requirements. But there was no transportation and the parents were afraid of their children losing their benefits.
I've come to find out that the word benefits doesn't always mean that small monthly check. When Pat and I discussed her particular benefit needs, we found that Pat needs home health care services. For safety, she needs to get in and out of the bathtub each day, and her cabinets in her kitchen are up here, down here (indicating), and not where she can reach things.
So when the home health care person comes in, they prepare her meals and put them in the refrigerator where she can get them and use them later. She only needs a few hours a day, but it is necessary few hours a day. Pat also has diabetes and other medical needs.
Several years ago I found a dental friend to realign Pat's lower denture. She noticed that the partial on the top was in need of repair. Pat finally called for an appointment with the dentist in August of this year. They supplied her with the original paperwork to pull her nine teeth and supply dentures on August the 28th.
Pat had her teeth pulled in early September, and the details are in the letter Pat has. No paper shifting has been done since October the 18th. Medicaid's delaying tactics are hindering Pat from integrating her best in the community. The stroke left Pat with affected speech. The lack of teeth only complicates her speech problem and interferes with a good appearance. It's a vicious circle, and she's right back where she started, minus a few teeth.
It is difficult enough to work in the community with two working hands, two working feet, good hearing, good sight, and average intelligence, but when a person with a handicap decides that he or she wants to be part of that community, not only do they have to make adaptations to reach their goals, they have to make adaptations to a handicapped system. And that's puts all of us right back where we started. Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Phyllis.
James Lowes. The microphone is on its way, James.
JAMES LOWES. My name is James Lowes. I am representing myself. I lost my sight August 6th, '96. My life was totally devastated. I hated God; I hated the world, and I wondered how I was going to exist until I heard of the vocational rehabilitation system.
Since then, I have been working within a system that complicates the situations of lives, jumping through the loopholes of paperwork that should be updated to technology instead of carbon copies of this and carbon copies of other situations, better understanding of the technologies that are available to increase the efforts of people that are trying to attempt with continuing with their life.
I am currently a student at IUPUI. I have a 4.0 average, which is perfect, but since I choose to excel, I have met more obstacles because people on the other side of the community or the professors do not understand the needs of the disabled community.
They are scared to listen because there has not been enough integration. And I am thankful for the possibility of giving our options of integration today. With the integration we need to, one, alleviate the need, the fear, of the disabled person.
One, I suggest that we go out and educate the community. For, as going out, in my situation, going out to a company and blindfolding a CEO person and showing them how to interact with a disability.
Or, for another example, going to another business person and putting them in a wheelchair for a 24-hour period and showing them that, yes, you do have a deficiency or you do have a hindrance of your ability. But then we need to show that it's accessible needs, the accessibilities that are being provided there for the people that are able to go out and excel, like myself.
I have and am in the process of trying to receive a dictation device which allows me to control the computer without typing, because I cannot feel my hands. I first have to explain
(1) why I cannot feel my hands;
(2) the benefits of the technology and what the technology would be; and
(3) I am going to have to explain how that's going to make me effective out in the work force.
Why do I have to jump through the loopholes in situations? I feel that it would be obvious that the technology and capability of people trying to effectively make themselves better would help improve the community. Each disabled person that we put out into the society will become profitable to everyone.
And we need to better look at, also, transportation. The transportation that we have in Indianapolis -- I feel sorry for the people out in the rural communities -- you have to schedule seven days in advance to know where your going to get. You're not guaranteed the time, and then you're sitting for 45 minutes to an hour and a half waiting on a ride when you have an appointment that is scheduled at a certain time. And if you do not make it to that appointment, you're going to have to reschedule, or you're going to have to go to a different situation.
We need to better revamp the transportation system. I am thankful for the time that I have and, hopefully, that we are able to look to technology that is out there or the better advancements. The one thing that I feel that needs to be the done is before a decision is made on the disabled community, that the person or the chair people that are making the decision needs to experience the disability themselves.
For
(1) they can understand what the person is going through;
(2) they can think of possible solutions to the situation; and
(3) maybe everyone will be able to be the integrated equally into society. Thank you. HEARING OFFICER SYBINSKY: Thank you very much, James. David Weinschrott.
DAVID WEINSCHROTT, Ph.D., DIRECTOR OF PLANNING AND RESEARCH
UNITED WAY/COMMUNITY SERVICE COUNCIL. Thank you very much for allowing me to speak here today. I'm Director of Planning and Research for United Way/Community Service Council; also, I'm the Staff Coordinator for a community planning organization called Impact Council for Self Sufficiency for People with Disabilities, Seniors, and Older Adults.
So my remarks are really based on a year's worth of planning in the community which included providers, community advocates, expert interviews that I've conducted over the years. The substance of my remarks are in the written comments. But I just want to make a very simple point here.
I've recently been looking at the results of the Central State Hospital closing, which were well documented in a Journal article which I have cited in my paper. But, for the most part, all activities have been found to be fairly successful in the sense that a fairly large fraction of people coming out of Central State Hospital have entered into independent or semi-independent living and may want to make that transition in the future.
But when we went to look at what are the issues that led to that kind of success, three things came out of that research. One was there's adequate planning and transition and regular involvement of the community providers to which those people were transferred; sufficient funding which follows the individual into the community so that their case load was not added on existing budget but were augmented when they were able to move into the community.
The third point is regular monitoring of individual status. This came about in the context of the research project itself. And over the course of several years, virtually 97 percent of the people are being trapped by that research project.
Now, to further implement that in policy, how would we carry that out? We see benefits resulting from that structure. Well, certainly we can talk about appropriate planning, and we talked about appropriate funding, like many people that have addressed that issue here. But this fall I attended -- and earlier considered testimony put on by the Governor's Council for Disabilities -- and found parents recounting issues where they have become aware of abuse or poor care for their children and were unable to make the system respond to those situations.
And it seems to me, adding to Donna Roberts' points, that we need a quality control system that includes a mechanism whereby when parents make a complaint, they get quick response from the system that says, yes, we heard your complaint and we are investigating, probably within four or five days after they make the complaint.
Secondly, there must be some quick response as to what the initial assessment of the issues are. And certainly there must be some definite response as to what the plan is to overcome the difficulties their child or loved one is finding in their care situation.
No matter where, the people are still in state institutions making the transition to community or independent circumstances in which the community supports. We need some mechanism whereby people who are part of their care structure, their network, in the community can raise a complaint and have some kind of sense that it's going to be responded to.
It was just heartbreaking to hear of parents talk about their plans over a series of months to make a complaint known. And these are people who were participants in the local art. They knew the system; the knew who to call; they knew how to make the case, and they were not listened to and their children went around with poor care or abusive situations.
So I'm asking for, within all the other interests that have been discussed here, that in fact we have some kind of an ombudsman system, some kind of set of standards whereby there be a response to a complaint. We at United Way, we are fully in favor of promoting independence and self-determination.
This sort of commitment of the disabled will renew a strong record of public assistance and allow us to do our work. Thank you very much.
HEARING OFFICER SYBINSKY: Thank you very much, David.
Jean McDonald.
JEAN McDONALD, DIRECTOR OF PUBLIC POLICY. INDIANA ASSOCIATION FOR HOME AND HOSPICE CARE. I'm Jean McDonald. I'm the Director of Public Policy for the Indiana Association for Home and Hospice Care. testimony. This morning on my way down I was on the telephone with a staff member from the Family and Social Services Administration, and I was giving a reference for an individual who will start work at the Family and Social Services Administration at the end of this month.
This happens to be the other grandmother for my granddaughter -- and Kathy will be starting there with her dog, Dudley, and she is so excited about having a job. She is legally blind; went back to school when she become blind, and just cannot wait to have a job.
She's very tired of staying home. So I think that's a positive we need to talk about. Now, in my role as Director of Public Policy, I like to just quickly bring what we see, as our association, some road blocks that are solvable as we integrate more individuals into home- and community-based services.
The first has been well discussed before. We have an extreme shortage of the caregivers; not only family caregivers -- because more women are working -- but we also have an extreme shortage of what we call the paraprofessional, the home health aide, the attendant.
We are, as we all know, in an era of high employment, and, therefore, as said before, most individuals would rather work at McDonalds for $10 an hour, get a retirement, and free food, and they don't have to have an automobile that works.
But for those of us in the home-care and hospice business, our paraprofessionals must have a car that works, and, therefore, they must be paid adequately.
The current Waiver rates in Indiana are based on $7 an hour for the paraprofessional. We did have an increase in January -- the first increase we had during the 90s -- and that was an increase of 4.14 percent. And as one of my friends who is a caregiver said, "Whoopee" [sic]. That is exactly 37 cents an hour for her. So we need to look at the Waiver rate. The CHOICE rates for Indiana are actually higher than the Waiver.
Currently, many of our home-care agencies are no longer providing Waiver services. They can no longer afford to take a loss. This is at a time when Indiana has lost 165 home health agencies in the last three years. And, as Suzann said, rural areas are more difficult, and guess where most of the home-care at a point in some of our rural counties, there may be only one provider, and if that provider won't provider Waiver services, there's no one in that county that can get services.
Another point is the fact that we have huge waiting lists for both Waiver and CHOICE. I jokingly told my -- actually, Kathy's father, who's 84 and still works -- "Calvin, we need to get you on the waiting list. Should you need home- and community-based services, you'd be in an institution" before we could get services for him at home. He's perfectly healthy and working. But we need to get him on a waiting list because we don't know what's going to happen in two years.
Another concern is our current Medicaid rates. Yes, the industry does sit down with the Office of Medicaid Policy and Planning and we did five years ago and we do have rates. Our rates are very adequate for short-term care; our rates are not adequate for the long-term care, such as 8 to 12 hours.
The problem with our Medicaid rates is that we have no way to quickly adjust rates based on the market, meaning we have a shortage of nurses. It takes us three years to get caught up to what was three years ago, as far as rates are concerned. And I will say that we are undergoing negotiations with Office of Medicaid Policy and Planning. One side of the Olmstead decision -- and we do not know how the Olmstead decision will actually affect this -- but partly in Indiana Medicaid pays for hospice care.
They pay for hospice care in the home. And if you are Medicaid eligible and live in a nursing home, Medicaid pays 95 percent of the room and board rate plus your hospice care for Medicare. However, if you cannot be cared for in your home and you don't want to go to a nursing home, there are five hospice homes in Indiana. This is an alternative to nursing homes.
There's nothing wrong with nursing home care, but should you wish to stay in a hospice house, Medicaid recipients cannot do that because hospice houses do not receive room and board coverage, even though they are licensed as a hospice.
An individual must have money to pay the room and board in a hospice house. So this is a concern, but we're not sure how Olmstead will react to such a change. I'm going to end with one small thing that I know here was previously discussed, and for those of you that represent the disabled community, especially paraplegics and quadriplegics, we've always thought all along it was the Nurse Practice Act that prevented nonskilled, nonhealth professionals, that means RNs, LPNs, OTTTNs, and speech (phonetic) from doing certain personal care services for quads and paras.
It's actually Medical Practice Act. The Medical Practice Act states that the penetration of the skin or an orifice, such as bowel care for a quad, must -- is -- I'm sorry -- is the practice of medicine. Now, a physician may delegate it to a registered nurse, but because it's part of the Medical Practice Act and it's actually practicing medicine, we as nurses cannot transfer it down to a nonprofessional.
Now, this creates a real concern for that community of paraplegics, quadriplegics, because if you don't send a licensed person, at least an LPN, you as either an individual or as a licensed home health agency can be charged with practicing medicine without a license.
This has been brought up to the Medical Society, and as of this month we don't know where they're going. But if the disabled community wishes to contact the Medical Society -- I personally have never seen a physician do bowel care. (Laughter) Thank you.
HEARING OFFICER SYBINSKY: Thank you, Jean. Paul Severance.
PAUL SEVERANCE. UNITED SENIOR ACTION. Thank you, Dr. Sybinsky, for the opportunity to testify. I'm Paul Severance, Executive Director of United Senior Action.
We very sincerely applaud the plan for input into the development of these plans that FSSA is going through on various different levels.
However, it's important, I think, to say that a lot of us have been giving input on the issue of long-term care for the State of Indiana for about five years.
Many planning processes have been going on, and the results of those planning processes have been some real positive action, and some of that is outlined on page three of this document that you have passed out.
So some really positive things have been done. However, what we are lacking is several things. We are lacking a clear commitment from the Governor and from the legislature that choices in long-term care services will be made available to every single Hoosier who is eligible for public assistance with that care and that no Hoosier who is eligible for public assistance with long-term care will be forced into an institution for lack of funding for CHOICE.
That is the commitment that a number of us have been asking for five years and has not yet been made. So that, number one, is what we need; that commitment that no Hoosier will be forwarded into an institution, and, second, I think a date by which that policy will be in place.
I want to disagree strongly with a couple of things the representative from IHCA said that do not need any fundamental alteration of our system.
Despite the progress that has been made, Indiana is still spending about 90 percent of our long-term care dollars on nursing homes and institutional care and 10 percent spread around to community care. And that's why we have those waiting lists that Jean McDonald just mentioned.
The state of Oregon spends more than 50 percent of its long-term care dollars on services, home- and community-based services. We do need a fundamental alteration in how we do long-term care in this state. Part of that also is that Oregon does not believe, and we do not believe, that just because you have ADLs that you need assistance with that you need to be in a nursing home.
There are reasons that you need to be in a nursing home. But there are very few people who just need assistance with activities of daily living that can't have those needs met in another setting and wouldn't much prefer to have the needs met in another setting. We very strongly support the points -- and I won't take the time to repeat them -- that Donna Roberts and Melissa Durr made, particularly about the quality assurance system.
We need a quality assurance system across long-term care from institutions down to home care that really assures quality and that takes it that every time you see a lack of quality, that that rate was a red flag that we go out and we do something about it. And, unfortunately, we don't have that.
And in Donna and Melissa's testimony they mentioned several important aspects of that quality assurance. I just want to mention one more and that is the Long Term Care Ombudsman Program, which some of us for, again, for about four or five years has been complaining about the fact that the Long Term Care Ombudsman Program for the State of Indiana is funded at one-third of the national standard for providing Ombudsman services to nursing home residents -- one-third of the national standard.
That is a disgrace and nothing has been done about that yet. And, in addition to that, we have a state law that says that that Long Term Care Ombudsman Program should be serving home-care clients. Not one cent has ever been dedicated to that purpose and, therefore, the Long Term Care Ombudsman Program is not serving home-care clients, in violation of state law.
And now as we talk about bringing on board other alternatives, are we going to have a Long Term Care Ombudsman Program that serves those? That's a vital part of quality assurance, and we are sadly, sadly lacking. Thank you.
HEARING OFFICER SYBINSKY: Thank you, Paul. We have a 30-second or so break while we change paper here. The next person who will be testifying here will be Cris Fulford. We'll get the microphone over to Cris.
CRIS FULFORD, EXECUTIVE DIRECTOR. ASSISTIVE TECHNOLOGY THROUGH ACTION IN INDIANA. INCORPORATED. Thank you for this opportunity to testify today. I'd like to describe the many hats that I wear. First and foremost, I am the mother of a 24 year-old son born who was born with cerebral palsy that affected -- he has a physical, visual, and a learning disability. And I am also the daughter of a -- when I was about 5 years old my mother was thrown out of the car and injured and had a brain injury, and so I dealt with that all of my life as well.
So I come from a variety of perspectives. I'm also the Executive Director of Assistive Technology through Action in Indiana Incorporated and I'm an independent contractor for the Council of Volunteers and Organization for Hoosiers with Disabilities as their governmental affairs person.
In order to give you some perspective of where I'm coming, what I'd like to share with you is a little bit, just a short narration of Craig, the situation that Craig has had to deal with throughout his life.
In order for Craig to receive an education, we had continue to fight the system because he was too mentally retarded to do anything in his life. The good thing out of all that is that Craig did graduate from Lawrence North High School and he went on to graduate from Vincennes University with an associates degree in business studies and a certificate in assistive technology.
Now, unfortunately, last month he was deemed through a psychological evaluation that he should be ineligible to continue to go to college, even though he has a GPA of 2.97. And the whole issue was because they don't make the accommodations available for persons with disabilities to actively participate in the college.
It becomes Craig's fault. So those are perspectives I'd like to share with so you understand where some of my comments are coming from. There's two aspects of the plan that I would like it address. One is in the planning, development, and implementation of the Community Integration Plan.
To provide an opportunity for interested persons including individuals with disabilities and their representatives to be an integral and valued participant in the planning, implementation, and follow-up phases of this plan, it's ensuring that constructive, ongoing involvement and dialogue by valuing the participation of individuals and their representatives who receive these services.
Stakeholders and partnerships must be developed to ensure that any plan is comprehensive and works effectively from a variety of consumer and stakeholder perspectives. Once the phases of the plan have begun, it's my understanding that the public will be informed to be able to react to some of these phases through the FSSA Web site.
Unfortunately, that Web site is not accessible for persons who have visual disabilities. So how are individuals with visual disabilities supposed to be a part of this process where the information is on the Web site?
How are individuals with cognitive disabilities at risk of being institutionalized and their families supposed to have opportunities for participation in this process?
Indiana must find a method for folks to have equal access into this process given that one of the largest populations -- that this is one of the largest populations already targeted by the state.
Just like those individuals who have a Waiver, which does not pay for transportation, those on the waiting list and those who are at risk of institutionalization, cannot participate because they cannot access transportation.
Eliminate congregate settings: There are approximately 7,470 individuals with disabilities being served in various institutional settings; approximately 650 are served in state developmental centers; 250 in state hospitals; 3,800 in group homes; 870 in large, private ICF/MRs; and 1,906 individuals in nursing homes receiving OBRA services.
Any involuntary congregation of individual settings should not be among the range of service options. Public policy cannot support the continuation of services which cause congregate setting situations. Current funding does not provide incentives of providers of services to move consumers from congregate to most integrated settings.
For Indiana to improve community capacity and infrastructure to support individuals with disabilities to live in their home community, Indiana must do the following: Fully fund Waivers and options for home and community support; Abolish congregate rate settings; Funding that follows the individual and not programs; Invest saved money in supporting those currently without support, no reversion of state funds; Promote inclusion in local community associations; End involuntary segregation models; Stabilize the community support infrastructure through: Personal assistance; Durable medical equipment; Assistive technology; Accessible, affordable housing and transportation; Recruitment of services in local communities such as housing authorities, YMCAs, public transportation systems, businesses, churches, and others to address a wide array of human needs; Training for service providers to promote the person-centered planning process; Family support services; Reimbursement rates to attract sufficient numbers of qualified service providers for individualized services; And, most importantly, empower individuals with disabilities and their families to make informed choices.
There must be multiple opportunities for obtaining information, education, and referral systems to effectively disseminate the information necessary for individuals and their families to be fully informed of, play a part in, and all options of receiving services in the most integrated setting. Thank you.
HEARING OFFICER SYBINSKY: Thank you, Cris. Valerie Cook.
VALERIE COOK. LIFE STREAM SERVICES. Good morning.
HEARING OFFICER SYBINSKY: Good morning.
MS. COOK: I'm Valerie Cook and I'm with Life Stream Services which is an area agency on aging, and I'm also with the Disability Capacity Planning in Delaware County, which is where Tim Multsey (phonetic) is. I'd like to talk with you about a couple of observations in our area that right now there are 504 people who are waiting for services just on Medicaid Waiver and on second county service areas.
The one that's been waiting the longest has been waiting since March 1997. These folks need a range of services, not just one or two services, and the services need to be adapted to meet their personal needs.
There are many of these folks who are committed, and their family members are committed, to helping them stay at home. In one of our counties, Madison County, which is Anderson, right now there are 240 people who are waiting for services on a variety of funding sources. The oldest person is 101 years old. Now, how long can that person wait for services?
I think that if she wanted to today, she could walk into a nursing home and receive services immediately. But she and others like her, like the 20 people who are over 90 years old on the waiting list in Madison County, are trying to stay at home where they're most comfortable, where they're near their family and friends and where they can have contact with the people they know and love.
One of the challenges for folks in our area -- we hope to include some rural communities -- is accessible transportation. Many of the communities we serve have no bus services and no connective services. We recently worked with Indiana Department of Transportation and we'll be starting a transportation feasibility setting for public transportation for the 48,00 people in Delaware County who live outside of the Muncie bus service area. But this needs to be expanded throughout the state, and, as a matter of fact, the Indiana Department of Transportation has over the past few years brought on, I think, 33 counties to have public transportation which includes transportation for disabled individuals.
This type of approach needs to be expanded in order to approach those who are disabled and the general public. The last issue that I observed is that we're working in Madison County to get some of these 240 folks off the waiting list and met with some of our funders and have applied for some United Way funding to do that.
Through this process some of our providers said, "You know, if we got more people who could be funded for services, frankly, we don't know if we could staff those many people." There's a challenge now, especially in some changes that are going to be happening in the nursing home setting for expanded number of personal needed in nursing homes.
There's a real challenge in terms of staffing issues. One of the things that we found in Madison County was that many of the home health agencies were providing their own training for home health aides. And we work with our intent to see about providing countywide training that would be available on a more regular basis. So that certainly is something that needs to be explored, but then trying to address some of the barriers that folks have who may be low income and looking for jobs to pay three or four hundred dollars is something that we're also trying to address. I appreciate your opportunity for input and I appreciate what you plan to do. Thank you.
HEARING OFFICER SYBINSKY: Thank you. Jim Jones. (No response.) I know he was here.
A VOICE: He was right here. He just stepped out for a minute.
HEARING OFFICER SYBINSKY: Okay. We'll take him later.
Karen Vaughn and Anita Stamps.
KAREN VAUGHN. Hello. Again, my name is Karen Vaughn. I really appreciate the opportunity to come and make comment on this. more available to people with disabilities.
You notice there's a lack of consumers here? Probably because of the time of day. It's in the afternoon and because of the transportation. There are far too many people existing in institutions that if given the chance could have a very productive and happy life in a community.
There are also those of us who do live in a community that are on the edge of losing that privilege. Medicaid regulations and policies are so restrictive that I don't have the opportunity to take full-time employment. I don't have the option of taking a well-paying, part-time employment and maintain my health insurance. Hopefully, something will be addressed in this legislature.
I want to mention the Medicaid Buy-in Program that is essential for people with disabilities to maintain work. If you have work you can get off the system, and that's the goal of everyone I know. This not only is an injustice to those who have been incarcerated in institutions, but to their family members and all of society, the entire community cheated out of sharing experiences and benefits that everyone has to offer.
Any individual with a disability that finds themselves without proper support that everyone's mentioned today is in danger of losing our freedom when we no longer are able to provide care for ourselves or our loved ones with what's necessary to live in a community.
We're often forced to move into these institutional settings where we believe that we will be adequately taken care of. This decision is usually after the setting that there is a lack of accessible housing, a lack of accessible transportation, lack of home-care providers, personal assistant services, and services for medical insurance.
No one makes that hasty decision and says, oh, I think I'll go retire and stay in a nursing home. I've experienced being a resident in several institutions and managed to be able to get out before it was too late. What I mean by getting out before it was too late is at the time that I'd left the nursing home I could just be out on a Friday night and call the nursing agency on Monday, say that I needed home-care service, and there was someone there. I didn't have to go through the hoops of getting prior approval and explaining the fact that I just left the nursing home.
My family was assured that my needs would be met by moving into such an institution. I was informed very quickly of what I was assured of. I was informed when I'd be gotten up, what type of personal hygiene I'd get, when and what do I eat and drink, when I could have visitors, and sometimes what type of visitors I could have, what type of activities were offered, and exactly what's accessible, when I went to bed, and who slept in the room with me. Those are choices I'd really like to make myself.
I understand that we have certain rules for society that must be followed for things to run smoothly, but determining when I am able to go to the bathroom should be my individual right. I don't think that would be fine with any of us. In institutions there are beds to be checked, meds to be passed, charting to be done, and people to -- everyone knows what I mean by people to do. It's someone's job. As a resident you don't know from day to day who will be working on your hall or your ward. So there's no consistency other than food, the noise
HEARING OFFICER SYBINSKY: Karen, could you speak up a little more, if that's possible?
MS. VAUGHN: Oh, yes.
HEARING OFFICER SYBINSKY: Thank you.
MS. VAUGHN: There is no consistency other than the food, the noise, and smell. However, there is one advantage to living in an institution or a nursing home: You're entitled to unlimited transportation services for medical facilities. If you need to go a doctor or another clinic every week, or kidney dialysis three times a week, the transportation can be provided for you by Medicaid.>
While living in a community you're allowed up to, get this, ten trips a year -- what a deal --Laughter)-- without getting prior approval. I appreciate those ten trips a year. But I'll explain that I've had more than that. While living -- if you live in a facility staffed with qualified medical assistants, nurses and aides, therapists, and doctors, clerks, secretaries, and administrators you can go to another medical facility whenever you need. Does that make sense when there's all that staff there to meet your needs, supposedly, for medical visits that you can get unlimited transportation? All because there's new limitations for facilities, for providers.
There are so few transportation providers for people that live in a community mainly because the reimbursement rates for those services were cut so drastically several weeks ago that there are very few vendors to provide services.
In Marion County, the largest county in the state, there is only company that provides wheelchair-accessible transportation for those who live in the community; that company only has one wheelchair accessible van that has high-rise doors. So if you're over five-foot-four, you can only use one van in Marion County. This makes it almost impossible to schedule a ride in a timely manner for any medical appointment.
This type of decision has cost more money than ever will be tracked. Unfortunately, I've lived with the proof of this bad decision for ten months and an exorbitant amount has been paid by Medicaid and Medicare.
In December of 1999 my leg was broken in two places due to extreme elasticity. Earlier in the same week, I had a severe spasm and broke two of my ribs. Public transportation is my preferred mode of travel, but the orthopedic surgeon's office is outside the service area by a quarter of a mile. This is not something that I can drive my chair down -- or -- up Meridian Street and access it.
Appointments were scheduled every two to three weeks for the next month, and the only transportation available to me was an ambulance service. Ambulance services are really expensive. This is just the beginning of the transportation costs. When it was time to remove the final cast, I couldn't get transportation.
The dispatcher told me to call back in a month -- in a month -- to schedule a ride to get my cast off. Two weeks later I was able to catch a ride with a good friend, and when the cast was finally taken off, three decubitus ulcers had developed on my foot. All had black, necrotic, or rotten, tissue and had to be debrided right away. The one on my heel had progressed to a stage 4; that's one stage away from the bone. A wound care specialist and a registered nurse were scheduled to change dressings every day for a month.
After that came weekly visits to the clinic and still the visits from an RN to come and change the dressing. Fortunately, the hospital that I went to at the clinic has wheelchair-accessible service and I could sometimes get public transportation for that.
Medication cost $140 a day until September when something a little less expensive was started. The wound is just about superficial now, but still requires a nurse to change the dressings daily. Are you guys adding this up? This yearlong process could have been avoided if I could have acquired timely transportation to get the cast removed.
Citing transportation costs were the means for a previous administration to cut the Medicaid budget. I'm sure that I'm not the only person that's experienced this discriminating policy -- and, fortunately, I've been able to maintain my home.
Instead of the preventative medicine, it's more like a slow form of euthanasia. That might seem strong but I know lots of people that have been forced to go into institutions just to get that transportation. Closing institutions and providing real opportunities for people with disabilities to live in the community is what person-centered planning is all about. This administration alluded to making a commitment to person-centered planning.
Isn't it time to show us what they plan to do about it? A realistic transportation service, access to realistic home-care services, and accessible housing plans must be addressed if this administration truly believes in it. In all of my roles of being exposed to these individuals or communities and being chairperson of this committee effort and being a part of that board or this board, the most important thing that I've done has been being a family support./p>
I'm providing support to my family. I keep my nieces -- I'm known as Auntie Karen -- and I'm indisposeable [sic] to those girls. And I certainly can't be the only one that can be a benefit to their family time if they were at home. Thank you for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Karen. If I could go back -- Donald Hartman.
MS. STAMPS: You forgot me.
HEARING OFFICER SYBINSKY: I'm sorry. Go ahead.
MS. STAMPS: I've been forgot a lot.
HEARING OFFICER SYBINSKY: I thought you were part of the same testimony.
ANITA STAMPS. My name is Anita Stamps, and I've worked as a CNA for 15 years. I've worked in more nursing homes than I care to remember.
The residents of the nursing homes are not treated as people; they're treated as income to the nursing home owners and their staff. They deserve the right to be seen as adults that are living in a free country, so I thought.
I can't remember the constitution saying "some people." It says "we the people," and that should mean all those in and out of all the nursing homes. There are people who would very much like to live their lives as they want and in their own home.
I took care of a lady that -- and she lived in the same house for 52 years. She also died in that house at the age of 93. Edith had a stroke and went into a coma and her family asked if I could continue taking care of her. I did for 14 days. She could not eat or drink. I turned her every two hours, changed her bedding, and cared for her.
Her family all went back home. I stayed with Edith until my job was done. I did not have to do it, but it seemed -- I did not have to do it, but I seen what happened to her at the nursing home. The home was overmedicating, the neglect of the people, the shortage of the staff, the overloading of patients on one CNA. You can't expect one person to provide for 10 to 12 people and give a bed bath, a shower, and help them eat three meals in an 8-hour shift and expect it to be done properly.
Say you have the one person that has trouble swallowing and needs special thickeners to help keep them from choking and they take longer to eat. I've seen people charting that that person refused when, in fact, they could not speak to refuse. So now they didn't get breakfast, then lunch comes, and that CNA decides it's much too difficult to feed this person, and then it is two meals they did not get. So then the RNs and LPNs are wondering why is this resident losing weight, or they're not eating enough. Someone that is not paying attention to what they ate says, "Oh, I'm sure Mr. Smith ate everything; he always does." But they didn't know Mr. Smith was weak and did not eat. But no matter. The log book says he ate 100 percent.
These people deserve the same respect you and I ask for. I've got a friend who has worked as an aide for 45 years, before there was policy in Indiana. I'm very proud to be have a mentor like her. I love my job, and I now work in home health.
At this point what will go on in the nursing home? There is not enough time to tell all the neglect; the beatings, the bad personal hygiene, if any, the loneliness some feel because they have no family and nowhere else to go. So they like many others go to what they call a new home, the state certified nursing home.
And some I've known live on the streets because at least there, they have a right in what they do. People don't think that the last 14 days of Edith's life was all the time we had together. I had grew up in the neighborhood. Edith was the oldest person there. She bought the first house on the block, and I knew her when I was young enough to steal the flowers out of her yard.
She taught grammar school for 27 years and had an active social life, even after her stroke. She had a niece around and even some of the students she taught many years before came to visit.
It was funny how she could call these students that were 60 and 70 her kids. During her retirement she had a stroke and asked me to help her stay in her own home. I thought she deserved that much.
As a gardener and personal assistant, she was able to see her flowers grow in her yard. The same flowers she brought back from her mother's garden in Versailles, Indiana, over 52 years ago.
Edith really loved her home. Now, I'm not just a CNA. This is Karen. She is my friend. I don't just take care of her. She is my friend. They deserve to be treated with respect and dignity. They are not wheelchairs. They are not people with disabilities. They're people. Period. Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Anita. Donald Hartman. (No response.) Jim Jones.
JIM JONES. INDIANA MENTAL HEALTH CENTER. Thank you. Mental Health Center. We represent all 30 of the mental health centers across the state.
My comments are restricted today to those who are seriously mentally ill. I'd like to start by staying that our organization supports and endorses the principles and the concepts that are outlined in this planning effort for compliance with the Olmstead decision.
The state has -- I've been around for a lot of years. I've looked through my files, and one of the oldest studies that I've found was 1974, the Arthur B. Little study. It recommended that we downsize our institutions. I worked with the Governor's Blue Ribbon Task Force study in the mid 80s.
There was several studies that transpired through the reorganization of FSSA. In 1974, there were about 6,000 patients who were mentally ill in the state hospitals.
Down to 1993, there were a little over 1400. Now there are about 850. The state has, through the Division of Health, has made a long-standing commitment to move people into less restrictive alternatives. It's becoming more and more difficult to do that, as the severity of illness persists.
Part of the challenge that we have is that we have -- we are proposing through -- the State Operating Facility Council proposes with another governor-appointed organization -- we do lots of studies.
It's been my experience that we create issue. And our progress is sometimes measured in inches when it needs to be in feet and yard. But, now, in the State Operating Facility study they've proposed to downsize the existing state hospitals by another 390 beds by the year 2005, or, essentially, over the next four years.
The would bring the census down to about 460. The challenge is, I believe, for the state -- I think the downsizing can certainly occur -- the challenge is that -- I don't have an answer for this, but I don't know how we maintain the state's awareness, concern, and feeling of responsibility for those who are moved to the community.
When Central State Hospital closed, there was a reference made to studies that had transpired that these folks did this -- it was a successful closing. People did get good care and continued to get good care.
That was in 1994. Most of the savings of Central State Hospital's closure and subsequent downsizing of other hospitals has been moved to the community.
Unfortunately, we have a tendency among our public policymakers and state officials to take the position that once they're not eating at the state hospital table, that when we put money out there to take care of them, that ought to be enough.
Somebody goes through all the dictionaries in the state and rips out the page that has "inflation" on it. There's no definition of inflation that I found in that state document. the community and what was perceived to be adequate funding six, eight, ten years ago, becomes inadequate without additional support and the recognition that there are going to be continued inflationary costs in order to be able to do this.
So over the next four years, if we were to take the position of -- which it's subsequently moving another 390 patients from hospitals into the community -- our conservative estimate would be that this would cost something close to $12 million-plus over the next two biannual budgets.
We know there are going to be a great deal of continued interest for funds. This next budget session is likely to be a bit of a free-for-all. Our concern is how we make it a priority to assure that the folks who are currently already downsized in the community are going to continue to get adequate care.
We have a waiting list right now of 152 people in the community who need the same kind of bed that's going to take the outsource for the next 390. We do not have in this state adequate low-cost housing for any of the disability groups. And even for those who are not disabled, we just do not have low-cost housing. And that's the real crucial factor in being able to sustain someone in the community. You have to have a place to live. If they have no place to live, essentially, most of them are going to come right back to the institution. So we have to be able to address the issue of low-cost housing. This goes beyond just any one single disability. We have no way to coordinate the efforts to address more low-income housing or low-cost housing.
Right now HUD has a very limited -- is a very limited resource and aren't able to get someone to subsidize the rents or take over housing. It doesn't look good anymore. So I don't feel that we can address the principles and concepts of moving people into a lesser restrictive alternative who are already in institutions without addressing those same concerns for folks who are placed in -- and we have lots of folks who are inappropriately placed in communities as well.
So it's our hope that, as one of your slides indicated, that there will be budget considerations. It's our hope that when the administration's budget is published that we will see some commitment on the part of the administration for both of these issues for not only the principles and concepts and goals that you're in the community who need the same kind of support. Thank you very much.
HEARING OFFICER SYBINSKY: Thank you, Jim. Steve Patrow.
STEVE PATROW. Well, I think that we had one area agency director that made just a comment on many of the statements that I believe in that have already been discussed. But the major thing is the financing. If you work for Boeing Aircraft and you needed a prototype developed, the government's poured money at you, and if you have overrun or additional costs, all you have to do is ask for more money.
But you get into the social services; not only do you not get enough money, they ask you to match it and show good faith and try to come up with enough money to support what you're doing. So besides all of the other things that others have said, we need the finances that will do the job. And that would be my contribution to this hearing is to get the finances that is takes to do the job. Thank you.
HEARING OFFICER SYBINSKY: Thank you, Steve. Is there anyone else who would like to testify?
DUANE ETTIENNE, PRESIDENT, CEO, CICOA. My name Duane Ettienne. I'm President and CEO of CICOA National Network, which is an area of donations to support Indiana.
I want to thank you for this opportunity to make comments. One of my concerns is as the state comes under -- as all states come under the pressure points created by the Olmstead decision by the Supreme Court is that we not create another program.
I really believe -- I've been in this business for 21 years -- every day reaffirms my belief that because public policy derives programs -- it does do that; that's where it always comes from -- that public policy is the most critical thing that we need to finance to see some statesmanship to lead us to changes.
It must be changed; it has to be changed, otherwise we're constantly going through these fights for incremental changes that don't ever meet the need. And it must be changed to support individuals and not systems of support.
There is not one organization represented in this room that deserves public dollars. Let's face it. I don't. Nobody else does. It's individuals and their families who deserve it. They are our neighbors. They are people who have helped build this country and they deserve our support, and they deserve to have it in a way that best meets their needs.
Until we have a public policy that addresses this issue, then we're going to be back to having hearings and studies, and, my god, it just goes on and on and on.
Most of us in this room remember when Indianapolis was India-no place. Laughter.) Ten years ago, do you remember, nobody went downtown. Nobody. But you know what? Somebody had a vision. Somebody said this is not right. We're losing what we've got. It's not that nobody wants it. Let's do something about it. So they developed a vision. Public policies were addressed, resources were applied, and it's now, I think, someplace. We want to go downtown. You just spend a little time there.
It's a living example, I think, lot easier to put up buildings, bricks, and mortar, than it is -- historically -- than it is to respond to human needs. I would encourage as we then, somehow, try to figure out how to address the public policy issues. As we look at the ramifications of what we're trying to do now that we make sure that our new approach is comprehensive.
The public has to know where to turn. And, you know, there's a reason McDonalds advertises every day. It's to keep it in front of people's minds. Come to us. We have something good. People don't typically tune in to where it's at until they need it. So we need to be constantly informing the public of what's possible; how they can make informed decisions. So we need to educate the community.
There needs to be dollars put into it. We need to pay for access. That involves a good, strong care management assessment, planning, and follow-up. There needs to be dollars for providers, both institutional- and community-based. Sometimes we do need the support of institutions.
We go to hospitals, for crying out loud, because we need them at certain times in our lives. But there needs to be a funding of that to make it possible to have good providers, strong providers. We can recruit most of them, as Jean testified to.
And, finally -- and this is really critical -- I've been in the community-based business for a long time. We really need an adequate, independent quality assurance system paid for by public dollars to make sure that people are being treated with dignity and respect and getting what they want.
We cannot assume because of being a frailty or whatever that any provider, including my own organization, is perfect every time. People deserve affection every time, and if they don't get it, if we don't have somebody looking at, then odds are they're not going to get it anywhere else as So, thank you.
HEARING OFFICER SYBINSKY: Thank you, Duane. Anyone else? Up here in front, please.
DEANNE HART. My name is Deanne Hart. I am an individual with a disability, a visual impairment.
HEARING OFFICER SYBINSKY: We've got a microphone coming, Deanne.
MS. HART: My name is Deanne Hart. I am an individual with a disability. It's a visual impairment. I have had an opportunity to be institutionalized. I went to a residential school. The school was there and it did provide me the ability to get an education that at that time the school system in my community did not offer.
However, as I have integrated into the community I find that there are days that I wish that I would have been able to attend a public school.
Today I live in a community where I have public transportation. I enjoy that service. I really feel like if I lived in the community that my family lived in I wouldn't have that ability. I and my husband, both being visually impaired, we are pretty independent.
We do call on our transportation from family and friends and other people to get us from one city to another and outside of the city limits.
The service that I have used most has been the vocational rehabilitation services, and I can say that the longer I work with them the more independent they think I become, the less services they think I need. And I don't feel like even though an individual gets more independent about what they can do, their needs become any less.
And I just hope that through changes that can be made that services will -- individuals will become more individualized and not so rigid that they just meet the fringe of the needs of the people with -- that with that, I'll hand the microphone back to whoever needs it.
HEARING OFFICER SYBINKSY: Thank you, Deanne.
MS. WENTWAY: Can I make a comment?
HEARING OFFICER SYBINSKY: Can you give us your name and address, please.
LINDA WENTWAY. I'm Linda Wentway. I'm from Muncie, Indiana. Deanne just helped me think of something. Basically, in a nutshell, we're tired of being pigeonholed into whether or not we fit into a certain category and qualify for a certain thing. And I know there are many states out there in some areas that we live that they do look at.
But there are certain kinds of people that make a different choice as to how they want that money spent for their needs, whether it be educational or whatever. Persons have their counselor or somebody else telling them what they think they need or deserve. Thanks very much.
HEARING OFFICER SYBINSKY: Thank you. Somehow, I called a name and somebody responded to it, but I didn't get to Hope Jimenez. Hope, you're on the list. Sorry about that.
MS. JIMENEZ: That's okay.
HOPE JIMENEZ. S.A.S.S.E. Actually, I'm glad that I was passed by because it gave me an opportunity to listen. I am Hope Jimenez. I'm a therapist at the Salvation Army.
Listening here has really humbled my spirit. When I was listening to the individuals here, I was listening how they weren't born with these disabilities, which really humbled me because I think that so often that's what we need to remember, that a lot of these individuals are not born this way.
So, given the opportunity, we can become one of these individuals. As a provider for the Salvation Army, I was asked to do a study to figure out why were we having such an increase in individuals with mental disabilities and visual impairments coming to the shelter.
What I have discovered is that 90 percent of the clients that I serve are crack addicts. Well, what happens with the crack addicts when you get a lot of those mentally ill and visual impaired individuals who don't want to be incarcerated or institutionalized, they become also an individual who is influenced by the people that they're around which also end up being on crack themselves. So we have individuals who are discriminated against
(a) because they're homeless;
(b) because there's some type of impairment to them and they're looked over.
What I also discovered is that -- actually, it reminded me when I was at Howard University, I had to do a study of how I would be treated if I were in a wheelchair. And this was in the late 80s. And when I came to the Salvation Army, I figured out that we haven't came too much farther. We're still all in the same position, which is really sad, because we haven't grown because the individuals that I handle every day are still discriminated against.
There is no housing here in Indiana. There is no housing. If there is housing, it's not quality. So what I really want to bring here is that it should not be about the quantity but about the quality of housing.
For individuals who have mental disabilities, they often have to wait a year or so to get social security, and then also it depends on who they get; the mood that they're in. But then we wonder why our jails are overflowing with individuals incarcerated.
A lot of these individuals have gotten into trouble because they have not had adequate care which means, you know, -- since Central State has closed a lot of my clients were there, so they are on the street, the ones that I had, the statistics that the Salvation Army had. And what I have discovered is that it is not the Salvation Army's responsibility nor is it is Indiana's responsibility to come and flip the bill, a big part of it, and also come and get their hands dirty.
But as children of God we do have a conscience and if we do believe that, it is our humanitarian responsibility to get our hands dirty. A lot of the individuals that I serve every day -- I'll be going back to my office and I will be serving them not as a therapist, what I am supposed to do, but as a case manager, because so often those who are being served are treated so inhumane and they can't get anything done correctly that they're coming to me.
So because I feel that it is my obligation, I help them; not call the social security, not do all of this and that. But it takes me to get on the phone with firmness to say, hey, do your job. Leave your issues at the door, but do your job. And that is one of the problems that I have found that we don't have a lot of individuals that work for the agency that is sponsored by the Welfare Department and so forth that do quality of job, the quality, but yet we have so many individuals that are coming to our shelter for services.
Just last night I had to take three clients of mine to Wishard Hospital. Why? Because they were elderly and we did not have appropriate services for them at the shelter, so I had to take them to Wishard Hospital where, for one, I didn't have adequate staff to take care of them, nor was it appropriate for them to be in that shelter.
So I had to put another barrier by taking them to Wishard where they stayed another two to three hours waiting to get another social worker to refer them to a nursing home.
I can also think about, because I am a licensed administrator -- so I know what it means to be quality of care. And a lot of the individuals that are working there, the CNAs and so forth, get to be burdened, because it does come down to money. It absolutely does. And if -- we are fooling ourselves when we don't, you know, we don't want to be honest. But it does come down to that.
So a lot of the population within the homeless are mentally ill and also disabled individuals. I also had the privilege -- and I say "privilege" -- to serve individuals who were deaf. But these individuals who were also deaf but they also were addicts, which amazed me.
The individuals who had great families but who were frustrated and somehow gave up on them. Individuals who also went to some type of nursing facility or so forth but they were discriminated against, so then they ended up living on the streets and then some predator came along and turned them out to crack.
And the reason why I'm saying this is because it is very often that we get into the busyness of our jobs of doing what the law says for us to do, man made laws. But we as providers need to remember what the Godly law says and that is our job. And also, too, that it may one day be us.
When I was sitting here thinking, I also remember that as a child here in Indiana, by the way, I was pushed through the system. I had dyslexia but I didn't not discover that until I got to Howard University. When I went back a couple of years ago to look at my paperwork at the high school and the junior high that I had went to, they had labeled me as psychological problem or behavior problem. And it was funny because I'd never went to a counselor, but they had already labeled me as that.
Now, if I was not an advocate for myself or had parents that were advocates for me, I probably would not be standing here, a graduate. I could have been a statistic myself. So it's very important to me and it really hits home to me as a provider and also as a Christian that we step back and look where our money is going and who we are placing in power to direct it.
And, again, it is not -- I'll say this again -- it is not the Salvation Army's responsibility nor Lilly Endowment. But we place our self in a responsibility that we want to do it. And that's where we would like the state of Indiana to come on board; that they want to do it; not because they're obligated but because they want to help individuals.
Hamilton County right now actually has the lowest waiting list for individuals to get in housing, but if you notice, there's not a lot of housing in Hamilton County. And maybe one of the reasons why is because we don't want some of the people living next to us. But yet if a lot of these individuals are homeless and we don't have places for them to go, they're next to us anyway because they're in the jails. We're paying for it. Not only are they in the jails, but my children perhaps are going to school with some of these individuals who are not capable of handling their own children. So it also reflects back to my household. So it does hit home because we all have a part in it, whether it's through tax dollars or with our children, or with our humanitarian responsibility.
So I again ask that you all take back and ask them to come back. And I invite you all – we are really in need of volunteers to come to the Salvation Army and to see and to feel what these individuals go through. Thank you.
HEARING OFFICER SYBINSKY: Thank you, Hope. Anyone else? Yes.
BONNIE O'TOOLE. ATTIC. My name is Bonnie O'Toole.
HEARING OFFICER SYBINSKY: Please speak a little closer, Bonnie.
MS. O'TOOLE: -- O'Toole. I work for ATTIC. ATTIC is an independent living center in Vincennes. And I'd like to tell you about Randy. Randy's a good example of why people with disabilities should not be institutionalized.
First met Randy in 1996 after receiving a call from one of Randy's former teachers, Kara Patrick (phonetic.) Mrs. Patrick felt that Randy, who was living in a therapy group home at the time, needed an advocate.
At that time, Randy was experienced with use of group homes, but no one wanted to release him. In fact, the people at KCARC thought he was nonverbal and could not possibly be making these accusations.
Randy and I hit it off immediately. There was so much potential in Randy Pride (phonetic) that I wanted to be there and witness his growth. I promised he would get out of the group home and be able to live on his own in the community.
I must admit there were times during the next year that I did not know if we could be successful, but Randy never let me forget about that promise.
If Randy hadn't needed services, he could just have left the group home. But he did need services and without a Medicaid Waiver, he could not receive these community-based services.
During that time period, Randy endured more than any human should have had to. We finally told him to move the heavy chest in front of his door so that no one could get into his room at night without making a lot of noise. Even with that, he had to make one more trip to the emergency room.
October the 9th, 1997, both Randy and his mother testified before the 317 Task Force and requested help for Randy to get the Medicaid Waiver so that he could leave the group home.
Finally, on December 22nd, 1997, Randy got a Waiver. His mother took our car to the group home and helped him move out immediately. That day in the car he kept saying to me, "You promised, and we did it. You promised, and we did it." He had never lost faith.
Since that time I've watched Randy's personal growth and independent living skills achievements. It is so wonderful to see him living in his own apartment and participating fully in community life. I realize that this is just the first step, but Randy will continue to grow in his independence.
Randy is a perfect example of how person-centered planning really should work. With the help of board members, community living services and their great staff, Randy has certainly blossomed as he has been encouraged to make a variety of real life choices.
Sometimes everyone is not happy with Randy's choices. But they are his choices and they're always respected. He is involved with his family, his church, volunteering at the animal shelter, and helping at Camp Aliana (phonetic).I am so proud to call Randy Pride my friend and continue to be part of "Team Randy." Thank you.
HEARING OFFICER SYBINSKY: Thank you, Bonnie.
KEVIN KILTEY, DIRECTOR OF CONSUMER PROGRAMS - MENTAL HEALTH ASSOCIATION. I have relatives that think I've never met a microphone that I didn't like, but I just plan to talk for a moment.
My name is Kevin Kiltey, and I'm the Director of Consumer Programs through Metal Health Association in Indiana.
What I'm struck by -- there must have been 30 or 35 people who testified today, and one after another establishes the need for services, and it's obvious there's the need for services. But I think in many respects, not totally -- money doesn't solve all problems, but money solves a great deal of problems.
Jim Jones and maybe two or three other people, in their testimony, in their presentation, talked about funding. It is my strong feeling, given the state of wealth that we in the state of Indiana have, that one of the real answers to all of the testimony and all of the structures we need and all of the programs is we simply need more money.
Like I said, I realize that doesn't solve all problems, but I believe we have an opportunity as citizens to make our voices heard. You've heard it before that, honest to gosh, it does work, and that is: With the legislature meeting beginning in the winter, in the year 2001, the people who are our politicians, our representatives at the statehouse, are the people that really hold the key to an awful lot of what people testified to today that's necessary.
And I believe every one of us should try to structure some kind of a method, be it phone calls, be it letters, be it rallies, be whatever it is, our politicians need to hear what was said today, but they also need to hear what I'm saying. There are no politicians here today, but in January, February, March, and April they're going to make decisions that affect what everybody here wants.
And if they do not hear from us, then they have a justifiable cop-out. You know, we've got an excess of money. Literally, the government needs to free up some of it, and that could be done if we convince our politicians, our representatives, that it's the thing to do.
So I would just, in closing, urge everyone in some form communicate to their political representatives that the things we talked about today need funding. And hopefully that will lead to freeing up some of the excess funding that we all know is out there. Thank you very much.
HEARING OFFICER SYBINSKY: Thank you, Kevin. Anybody else who hasn't spoken who wants to speak? Okay. I see that Anita Stamps has her hand up.
MS. STAMPS: This is for Karen.
HEARING OFFICER SYBINSKY: Oh, this is for Karen? Fine. Karen, you'd like to add something?
MS. VAUGHN: Thanks, but tell whoever's going over this testimony to make no decision about us without us. Thank you.
HEARING OFFICER SYBINSKY: Thank you, Karen. I would like to thank everybody for coming, and for all of you who are still here, especially for sticking around for the extra half hour to hear everybody's testimony so that everybody could receive a full hearing.
We really appreciate your input, and I promise we'll be using that input to craft a document that is responsive to the needs and the priorities that you're reflecting here today.
Please take a look at the screen here to your left. We do have our single 800 number for your input and for any questions that you might have, and that is 1-800-545-7763; TTY number is 1-800-962-8408, and our Web site https://webcms.in.gov/fssa/.
When you get to that site, you will see a link to the Olmstead materials, so look for the link and click on it. Thank you very much. If you want to submit written testimony following up what you say, please submit it. My name and address is on the materials that were handed out today. Thanks again for coming.
(Hearing adjourned November 16, 2000, at 11:40 a.m.)STATE OF INDIANA, COUNTY OF MARION,I, Gay M. Shingleton, a Shorthand Reporter and Notary Public, in and for the County of Marion,State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration, in the matter of Indiana's Plan for the Community Integration of Persons with Disabilities, beginning at 9:00 a.m. on the 16th day of November, 2000;That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 28th day of November, 2000.Gay M. Shingleton, Notary Public, Residing in Marion County. My Commission Expires:June 1, 2008
