Transcript of Public Hearing New Albany
BEFORE THE INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
FIRST EDITION OF INDIANA'S COMPREHENSIVE PLAN FOR
COMMUNITY INTEGRATION AND SUPPORT OF PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
ALISON BECKER, HEARING OFFICER
CONFERENCE ROOM
NEW ALBANY-FLOYD COUNTY LIBRARY
180 WEST SPRING STREET
NEW ALBANY, INDIANA
AUGUST 23, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Becker
Public Comments:
Larry Jackson
Gary Gambino
Geneva Sams
Written statement attached as Exhibit 1
Frances Egner
Mere Ogan
Margaret Lori
Carolyn Ernstberger
Irene Stainbrook
Bob Egner
John Walburn
Francis Lori
Doris Miller
Holly Wimsatt
Vickie Medlock
Richard Simers
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: I think we'll go ahead and get started. Before we begin we do have interpreting services available, is there anyone who requires sign language interpreting?
(No response.)
My name is Alison Becker, and I am the Director of Fiscal Services for the Division of Disability, Aging and Rehabilitative Services for the Family and Social Services Administration. It took me about four weeks to memorize that title when I started my job. That was one of my most difficult duties.
Today we are here to discuss Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities. And that title is almost as long as mine, so I keep having to refer back to it. This meeting is for all of you to give your comments on the plan and where you think we should go, but before we begin I just have a couple of things I would like to talk about with you.
First, where do we want to end up? Where are we now? Where do we want to go next? And what are we looking for from you today?
First of all where do we want to end up? As you all know there was a supreme court decision known as Olmstead v. L.C. that was handed down saying that individuals have the right to live in the most integrated setting possible. In response to that, Governor Frank O'Bannon issued an executive order last year asking the Family and Social Services Administration to put together a plan in response to this decision.
The overall goal then of the Family and Social Services Administration as we craft the subsequent editions of the plan is to allow for the most integrated setting possible while also allowing for consumer choice. So throughout all of our discussions and writings and goal searching we have that in mind.
So with that goal in mind where are we right now? We have issued a first edition of the plan. It was sent to the governor on June 1, 2001, and you will notice that we call it a first edition. It doesn't mean it's a draft. It is a completed first edition. However we recognize that this is going to be an ongoing planning process and a living document. Therefore we've decided to term it a first edition, second edition, third edition, and so on.
We have also applied for three grants. The Real Choices Systems Change Grant, the Nursing Facility Transition Grant, and the Consumer Directed Care Grant. We've applied for those through the Centers for Medicare and Medicaid Services, formerly known as the Health Care Finance Administration. We are to hear about those grants by October 1st. If you take a look at your Transitions newsletter, those grants are all outlined briefly in there.
We have also already received two grants including a $20,000 Olmstead Mental Health Grant which was awarded to the Division of Mental Health and Addiction. The Division of Mental Health and Addiction applied to use this grant for consumer involvement including identifying and training consumers and family members to participate in Division of Mental Health and Addiction's advisory groups, Olmstead hearings, related task forces and planning committees. Focus groups of consumers and family members will also be held.
I think this is a really exciting first step in ongoing consumer input.
The second grant we already received was a $50,000 Starter Grant which will allow us to continue to hold public hearings throughout the state, to continue to solicit consumer input and to also begin work of the Governor's Community Choice Commission. This commission, which we're still working on the creation and appointment, will begin meeting this fall and will be charged with very specific duties including recommendations for budgeting, overseeing grant implementation of these two grants and hopefully the three additional grants. Overseeing implementation of this plan and development of subsequent editions of the plan and looking for additional grant opportunities both from the federal government, as well as private sources.
So where do we want to go next? Well, first and most importantly we want to get comments on the first edition of the plan and that will be utilized to create a second edition. The second edition will be a status report of where we are on the goals set forth in the first edition. It will also incorporate your feedback. So while what you said today may not show up verbatim in the plan, please know that the spirit of your comments will be taken back and utilized. Then the commission will utilize this second edition to draft its work plan and to go forward on the goals that I set forth earlier.
So what are we looking for from you today? Well, this is your meeting to provide your feedback on the plan. We are specifically looking for recommendations for programs to fill in gaps in the current system and more importantly how you see programs lacking or good programs in southeastern Indiana.
So far I've been to South Bend, Lafayette, Vincennes and Evansville, and Indianapolis, and each and every place the comments and suggestions and concerns have been slightly differently. So one of the things that we recognize with this plan is that it cannot come down from Indianapolis but instead needs to be community based. So we're looking today for the input of how we can better serve your community and meet the needs in your community.
Also we're looking for suggestions of where we should go from here. What types of things do you think we need to consider as we begin to formulate the commission and its work plan and to begin to craft second and third and fourth editions, and certainly as we begin thinking about budget priorities for the next biennium.
We're very fortunate today we have several members of the FSSA staff here including Tom Rich from the Division of Mental Health and Addiction, Geneva Shedd and Lanier Vines from the Bureau of Aging and In-Home Services, and Cliff McCullough from the Division of Policy and Planning. I hope I didn't forget anyone. It's been quite a few days on the road.
So now I'll turn the meeting over to you. I will also say that written comments are more than welcome. In order to be included in the second edition, we would ask that you have those in to FSSA no later than September 10th. However if they come in on September 11th, I will not throw them away. I just can't promise they'll be in this edition but they definitely will be considered. There are some yellow half-sheets of paper on the back table with the address to submit those comments.
Also there's a sign-in sheet going around, please make sure to sign that before you leave. That will help us keep track of how many we have in attendance, and also will allow you to be on the mailing list to receive the Transitions newsletter, which the next edition will detail the commission structure as well as subsequent editions of the plan.
Having said all of that, now it's your turn. Who would like to get started?
I almost forgot there are some rules. The first rule is you need to come up here. The second rule is we would like you to say your name and spell it if it's difficult spelling before you begin speaking. Those are the rules. Who would like to start?
LARRY JACKSON
I'm Larry Jackson. I would like to -- I'm trying to find a place of my own. Get some supervision in my place in case I have trouble with my shoulder or my back, because I do have shoulder and back pains a lot. I would also like to get supervision in my own home so I can go to the grocery store and go anywhere I like.
HEARING OFFICER BECKER: Anything else?
MR. JACKSON: I'm trying to think of something else here.
I've worked with Rauch for seven years, almost eight, going on eight years September 20th, and I do work hard at Rauch. That's all.
HEARING OFFICER BECKER: Thank you, thank you very much.
Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
GARY GAMBINO
Good morning. My name is Gary Gambino, that's G-a-m-b-i-n-o, no relation by the way. And I'm a Washington County Outreach Coordinator for the Southern Indiana Center for Independent Living. It's headquartered in Bedford.
Hello, Barb. How are you doing?
Anyway, well, who was at the meeting last year or earlier this year in Seymour? Anybody? The last two Olmstead hearings that were in Seymour I went to both of them and I took a little gentleman with me, Mr. Graves. He is, quote, incarcerated in a nursing home and he just can't seem to find a way to get out. I discovered through some digging that he could sign himself out, but the thing is this being Salem, Washington County, Jurassic County as it were, he'd be homeless.
There are very few group homes, very few supports, housing for the disabled, things like that. And I, just for me, from my selfish perspective, I'd just like to see more of that in rural counties such as Washington, and maybe Crawford, Orange, or some of those areas, our area, any maybe even areas of Ms. Nelson's county, Floyd.
Since then I'm very chagrined to discover that another one of my consumers was, quote, unquote, incarcerated in a nursing home just this past week. He is a sane gentleman. He is in his early 60's. He's a diabetic. He has a lot of trouble with pressure sores.
But he told me once, right before the last Olmstead hearing -- he was in Seymour -- he said nursing homes are where people go to die. All right. And so I'm just hoping to spring him too, absolutely.
And I'm just hoping that there will be more supports in rural counties, group homes, and independent living facilities, and things like that.
In Washington County if you're disabled, forget it. I broke the mold. I'm lucky. There are hundreds, maybe thousands of other people who are not so fortunate as I. I'm going to wave Olmstead in the face of these nursing home directors in Washington County and say, hey, get with the program. It's the law.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
GENEVA SAMS
I'm Geneva Sams, and I'm from the Indiana Commission on Aging, and I was appointed by Governor O'Bannon for membership at large. And I'd like to read our statement from the commission.
The Indiana Commission on Aging provides the following comments relative to Indiana's comprehensive plan for community integration and support of persons with disabilities dated June 1, 2001.
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The document entitled Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities, has no vision statement for the future and is very limited in scope. It is not a comprehensive plan. Most action steps are short term, meaning it does not include the number of persons in need of service, the projected number of individuals to be served, nor the funding needed for such services.
Time lines are short term with most being within the next two years, and most action steps were already in process before the document was written. The document is more of a status report than a comprehensive plan.
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The title of the document needs to be changed to capture older adults and individuals with disabilities of all ages. Most older adults in need of in-home and community based services are already in the community. Their goal is to continue living independently in their own homes and communities. The use of community integration in the title excludes this important part of the population.
Most older adults in need of in-home and community based services do not view themselves as having disabilities and therefore do not identify with this document. For example, an individual who is 95 years of age may need access to services to assure that the home is safe and healthy. Other older adults may need services because they are frail and/or vulnerable. A more inclusive title is recommended.
Under the IC 12-10-11-8, the CHOICE Board, appointed by the Governor of Indiana, shall establish long term goals of the state for the provision of a continuum of care for the elderly and disabled. This duty and the previous work of the CHOICE board is not recognized in the current document.
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Therefore, it is recommended that a true plan be written that includes a long term vision statement, coordination with the CHOICE board, Commission on Aging and other existing boards, rather than establishing a new commission, the number of individuals in need of service, the number of individuals to be served each year and the cost of such services.
A more appropriate title should be developed such as Indiana's approach to building a strong base of community programs and services for older adults and individuals with disabilities of all ages.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
FRANCES EGNER
Hi. My name is Frances Egner, F-r-a-n-c-e-s E-g-n-e-r. I'm not sure who they sent letters to because none of the parents at Muscatatuck got a letter. I had to get my letter from somebody in Illinois.
The thing that I wanted to talk about is I know that some of the retarded people can go out into the community, but there are a lot of very severely retarded who cannot manage in the community, and they need the restrictive services of the state hospitals.
And according to the top of your paper it says where these meetings are it says the Olmstead public meetings. I wanted to tell you that the Olmstead Act states we emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings; nor is there any federal requirement that community based treatment be imposed on patients who do not desire it.
And if you ask the parents at Muscatatuck they do not desire their children to be moved into the community because they know they will not get the proper care and they will die.
I would not want that on my conscience if I were a state official to put out 300 people who they know is going to die when they put them out.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
MERE OGAN
My name is Mere Ogan, O-g-a-n. I'm one of the few parents here of a handicapped child. We received no notice of the meeting. I received a note from Frances. I saw nothing in the paper about this meeting and I think that's why there aren't more parents here. I called who I could at the last minute.
I, too, have a child at Muscatatuck who is being displaced from her home by the Olmstead Act. They have no clue as to where to send her. She's very, very violent. When she's upset it takes five adults to hold her down. She is constantly being tested for AIDS because she bites people when she's on one of her rampages.
We've gone through the whole summer running here and there and getting head shakes. I go to interviews; we never hear from them. We went to a placement fair -- oh, we'll call you Monday. Well, that was last year and they haven't called us. I don't think they'll call us.
You've got to remember that some of these people just don't have the mentality or the emotional stability to live in a home as we call it a home. We've got to remember these people. The governor obviously hasn't. The legislators haven't. They don't answer our letters. They don't talk to us. They call us for a meeting, 600 of us showed up and the governor and his friends were too busy to talk to us.
So please remember these people that are severely handicapped and don't have a prayer of living alone. She would run away. She would get hit by a car. She would jump out of a window. She can't live alone. She can't live with just one caretaker. She needs at least four.
They said, when we close, you'll just have to take her home. And I can't take her home. So what is she going to do? Go out in the street and just get run over. You all think about this, please, because it really is a worry to us parents.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
MARGARET LORI
My name is Margaret Lori. We have a son at Muscatatuck. We've been living in hope that just maybe part of the grounds at Muscatatuck could be reserved for our severely and mentally retarded people. If there was any way possible we would have our son at home where we could look after him and take care of him. But we have to say, sorry to say, it is impossible.
We really don't think he could do well in a community home. He slips out. He likes to get away. He knows just enough to get into danger and harm.
But we really have been living in hope that just part of the ground there at Muscatatuck could be reserved and they could be cared for.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
CAROLYN ERNSTBERGER
Hi. My name is Carolyn Ernstberger, that's E-r-n-s-t-b-e-r-g-e-r.
I have a brother which is 48 years old, and he's been at Muscatatuck Center for 40 years. My mom and dad just died, and so anyway I have -- some of my family and I have agreed to take care of our brother. And the only way I know -- the best care that is around anywhere is Muscatatuck Hospital.
He has the mentality of an infant. He cannot get up. He has a feeding tube which means he cannot swallow or take food by mouth. He cannot urinate because his bladder does not have the nerves, so he has a catheter which drains the urine out of his bladder. With his care -- he needs 24/7 medical care.
I don't think that he could have the right care if he was sent to a nursing home. They will not take and have the time and give him his therapy that he needs. I don't think they would have the manpower to take care of him.
I really think that O'Bannon really needs to come to Muscatatuck Hospital or Center and take the time with the parents to take and go through the facility and see what they do have, because I really do think that Muscatatuck Center is a good facility.
And I really don't think that -- there was rumors about having the center possibly become a jail or women's prison and I really don't think that's a good place.
If you go there and just take the time yourself and see what Muscatatuck has for these kids.
The people that go to prison actually have a choice of either hurting somebody, but my brother had none of that, because he's had this problem ever since he was an infant and he had no choice. So I'm here to voice his opinion and tell whoever can help to help him with possibly keeping Muscatatuck, some of it, open.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
IRENE STAINBROOK
My name is Irene Stainbrook. The last name is spelled S-t-a-i-n-b-r-o-o-k.
I too am a mother and co-guardian of a son at Muscatatuck who has been there nearly 29 years. I live near Muscatatuck, about 10 miles away. My first husband was employed at Muscatatuck, even before Jonathan was admitted. I've been on the grounds of Muscatatuck going to and from work for about 35 years, in fact so much many people think I'm a resident there.
My son is profoundly retarded. He's non-verbal, non-ambulatory, has epilepsy. He has many, many physical problems. His health is very fragile. And as I say I live near there. I visit there many, many times. I've been in many of the buildings. He has gotten excellent care that I think that he would not get anywhere else.
I've worked in nursing homes as an aide. I've worked in nursing homes as a nurse and that's no place for someone in my son's condition or any of the other residents that is on his unit or on many of the other units at Muscatatuck.
It has been a great worry to me as well as the other parents and family members that our children are being dispersed to who knows where. I have many sleepless nights wondering what is going to happen. If I sign a paper for him to go out, I feel that I would be signing his death certificate -- his death sentence because there's no place that can give him the care that he has gotten there.
I know many of the employees there, many of them are my neighbors and my friends and my fellow church members and they are very dedicated people. Some have worked there for 20, 30 years. And I tell you if they weren't dedicated why would they come there to change dirty diapers and feed these handicapped people, give them baths, and give them love and pats, and take them places. I would like to see that Muscatatuck remains for our loved ones.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
BOB EGNER
My name is Bob Egner, E-g-n-e-r. We have a daughter at Muscatatuck Center for going on 11 years. Her care is excellent. It couldn't be any better.
We went to a few meetings about -- where they were telling us all what's going to happen, where they are going to put them, and that they will be policed very good.
I want to tell you a horror story of a place called -- in Arcardia, Indiana. There's a home up there called New Horizons, and the state puts retarded people in there. In fact they put two men in there from Muscatatuck.
Mrs. Stainbrook went up to visit these two men. Well, upon entering the smell of urine and feces was overpowering. People were sitting around filthy dirty, some with no clothes. When she went in the bedroom where this man was staying there was a urine soaked blanket in his closet. Just terrible conditions.
So when she told us about this, my wife called -- well, it's in Hamilton County, in fact I called the first time and I got this woman that's supposed to be a caretaker representative. And I told her about this place. And she said, oh, that place is terrible.
And I said, what are you going to do about it?
She said, nothing. It's under litigation.
I said, what do you mean?
She says, well, it's in the courts and nothing can be done until it's settled.
I said, that could be years.
And she said, that's right.
I said, well, would you want to live like a rat in the sewer until this settled? I said, what about the board of health?
She said, that's a good idea. Why don't you call them.
I said, well, why should I call them, you're the caretaker.
She said, well, maybe they'll do more for you.
So I said, okay. So my wife called the board of health and they said we'll look into it. I don't know how many more calls we made until they finally looked into it and three months later we received a 54-page report of what they found up there. First of all, urine and feces all over the floor, toilets filled to the top with feces that wouldn't flush. One of the people was observed getting a glass and going over and getting a drink of water out of the toilet bowl. In the kitchen everything was covered with mold. There was mice and roaches running all over. A 54-page report of this.
So when we got it I called up the board of health and I told this woman about -- she was in charge of the Indiana State Board of Health and I told her about this and she didn't say nothing. And I said, well, look if this was a restaurant you would close it immediately. She said, sir, I don't know nothing about restaurants, and hung up on me.
As far as I know this filth hole is still going, and this is the kind of places that the state would want to send our kids.
We live near Cincinnati and just within the last two months two caretakers have raped retarded women. This could happen anywhere, but not at Muscatatuck, because everybody is well cared for. To close Muscatatuck would be the biggest mistake the State of Indiana has ever made. Every state that has closed its institutions have admitted it was the worse thing they ever done.
In Cincinnati right now there's 250 retarded women in the county jail because there's no place else to put them. To close these institutions -- Fort Wayne will be next -- it's the biggest mistake in the world. It should not be done.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
JOHN WALBURN
My name is John Walburn, W-a-l-b-u-r-n. I'm a provider, service provider. I also serve on the Southeast Region Work Group. Been attending or started attending the Southeast Regional Policy Council and the Capacity Planning Council.
As a provider I have heard all the arguments that the families here have presented and I think we could argue a long time as to whether or not folks can be served in one setting better than another, and that's really not the point. The point is that unless there's a commitment from the state with adequate funding to actually do these kinds of things nothing is ever going to happen. Providers as a group will not rise to the occasion to do something where they are going to wind up losing their shirt.
As an illustration in the Southeast Regional Center Work Group we were supposed to make a determination and a recommendation with respect to how many beds -- using that term loosely -- there should be in a facility located in Madison. The people that regularly met in this work group have indicated that there is a need to provide minimum services for the various kinds of folks living, residing in the region that will need the services that numbers approximately 220 or so. The arbitrary number that was established was 160. It's sort of like forcing your foot into a shoe that's a little bit too tight, or a lot too tight in this case.
The rationale was, well, you may not be able to provide all the services in the Southeast Region and some folks may need to get some services in other regions. However, there are no other regions being discussed at this point in time and there is no guarantee that the services when those regions are discussed will be available in those areas.
The beginning of this document apologizes in the introduction for the funding and the cyclical nature of funding, and so on and so forth, but several of the policy directions indicate that there will be -- should be adequate funding. The word should is what is there. I think a commitment would be that it will be there and I think that is what everybody in this room really wants to know is that the support for some nice ideas that are being presented and talked about throughout the state in various committees -- they're great ideas and there are some cutting edge things being talked about but without the commitment, without the funding, I can't -- as a provider myself feel like I can commit the resources of my organization to do something that won't be adequate to carry on and to do the kind of job which I feel that most providers want to do and that families want to see.
So that is the substance of my remarks that there has to be a viable commitment in this document that makes everybody comfortable that the state really means what it says.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Yes. Come on up.
FRANCIS LORI
My name is Francis Lori, L-o-r-i. And our son has been at Muscatatuck about 36 or 37 years. Muscatatuck provides a place of safety for our son where his interests are all documented. He is about a three-year-old mental person with a man's body and he's very unpredictable. You don't know when he's going to try to get away from you or run.
And we were thinking about the regional center, but we haven't heard anything about a regional center.
But the place really -- Frankie has been up there when Muscatatuck wasn't too good, and when they started talking about closing it, it was the best that it's been in the 36 years that we've been going up there. We visit about every ten days and sometimes he's good and sometimes he's not. He's unpredictable. If he sees a pile of dirt he'll want to run over and dig in it, that's where he gets his happiness.
If he were in town and a pile of dirt was across the road -- he's not street wise. And he needs a place like Muscatatuck or someplace where you don't have traffic. But he does not need to be locked in a nursing home.
We go to nursing homes and people sit in nursing homes 24 hours a day, seven days a week, and we really don't want anything like that for our son. We want a place where he can go outside and he can still be safe. Safety and happiness -- he's happy at Muscatatuck. Those are two great things in my mind that he needs.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Yes. Come on up.
DORIS MILLER
My name is Doris Miller, D-o-r-i-s M-i-l-l-e-r.
We now have a program, not for this particularly, but the Medicaid Waiver Program that there's like over 10,000 people on this waiting list. Every time I tell somebody to sign up and tell them how many people is on the list they say, are you crazy? Now, we're going to implement -- we don't have the money to take care of the people we've got, now we're implementing something new. Where is all this money coming from? Where are all the people going to come from that's going to serve these people?
When I was with a particular program quite often they didn't have the personnel. When someone quit, well we don't have anybody to send right now. So obviously personnel is a problem. Where are we going to get all these people -- we send all these additional people into the community where are we going to get the people to service them?
Transportation? I'm a member of Special Olympics. A lot of these people in these group homes and the individual apartments sometimes they don't have any way to get special events. So who go and gets them, parents and Special Olympics people. This is a problem. There is not enough transportation. Now we're implementing all these new things, wanting to get more people out there when we can't service the people that we've got out there now because we don't have enough employees and we don't have enough funds. So I'm wondering how is this program going to work if we don't have enough money to do what we're doing right now.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
MS. EGNER: Can I add something?
HEARING OFFICER BECKER: Yes. Come on up.
FRANCES EGNER
On page 7 in the Comprehensive Plan, No. 11, it says that they will move people out of Muscatatuck and Madison State. They will be responsible for finding appropriate placement for 350 individuals with developmental disabilities. In order to do this the provider community capacity must be enhanced. Plans are being developed to move people now in group homes on to the developmental disability waiver and recertify existing group homes for more intensive care.
That means that they would take a group home that might be an eight and make into a four for the severely handicapped which is going to cost the state a whole lot more money than keeping them where they are because they would have to have the nurses on hand.
All of the -- they would have the same rules as the ICF/MRs, that means nurses on hand, doctors available, therapists and everything, plus change around the way the house is configured so that their medical equipment can fit into a house. Because most of the group home houses I've seen they're not handicapped accessible. So that means adding ramps, widening doorways to bathrooms and bedrooms, so that is going to cost the state a whole lot more money.
Now where is all this money coming from if they're only allowing so much per person. The state has got the wrong idea in closing the institutions. I am not against people going out into the community but I am for people staying where they are now that need to be where they are now.
Thank you.
HEARING OFFICER BECKER: Come on up.
HOLLY WIMSATT
My name is Holly Wimsatt, W-i-m-s-a-t-t, and I work with Life Span Resources in New Albany. I didn't have anything prepared for today, this is kind of off the cuff.
I took a phone call this morning from a 79-year-old woman who has some physical challenges as well as she's a double amputee. She lives in her home alone, and she is on the waiting list for services. She is Medicaid eligible which leaves her on the waiting list for the CHOICE program.
As I mentioned she's a double amputee, she has explained to me that she can't clean her own home. She drags herself around her home using her arms. She can't go to the grocery. She has to try to pay a neighbor or someone else to do those things. She's been on the waiting list since January of 2000. As funding sits now she'll be on that list for at least another year. So I just want to mention that we do need a commitment from the state for more funds to serve individuals like her.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
(Positive response.)
HEARING OFFICER BECKER: Yes. Come on up.
VICKIE MEDLOCK
My name is Vickie Medlock, M-e-d-l-o-c-k. And I too work for Area 14 Agency on Aging.
As I stand before you there's only one of me but I'd like to tell you about 2,000 people that I work with through the pre-admission screening program, and those people are disabled people under the age 60, as well as people who are over the age of 60, with physical and developmental disabilities.
What happens is we screen all the people who go into nursing homes in this four-county area: Clark, Floyd, Harrison, and Scott. We have about 23 licensed nursing facilities. And as a person applies for placement we screen them to see if they're appropriate. Almost everyone that we screen is appropriate for nursing home placement because we cannot offer them any community services whatsoever. They certainly have a need. Their needs are great. Their needs are usually intermediate level of care, certain to qualify for nursing home placement or skilled level of care.
In the beginning, in 1992 when the Waiver Program started and the CHOICE program started we were able to give people alternatives and choices. If they came in through the pre-admission screening program and were applying for nursing home placement we were able to say, that here are some services in the community that are more appropriate and more cost effective for you and we were able to refer them to that program. That stopped about 1993 because the waivers started filling up, there was no expansion of the waiver, home care dollars got certainly saturated and very shortly we began a waiting list for home care dollars, as well as for the Medicaid Waivers.
So now when someone applies for nursing home placement we cannot offer home and community based services to them, so they automatically by default go into a nursing home. We're paying for that. Statistics show that 98 percent of the people who apply for nursing home placement within the first two years will apply for Medicaid. So if we think that we're getting off easier by warehousing people in nursing homes, we need to rethink that.
Most of the people who come in, the day they come in and apply for placement in our agency they receive Medicaid reimbursement. My concern is if they are eligible for Medicaid on the day of nursing home placement, why would they not be eligible for some kind of home care at the same time. So I think we need as a state to begin to think that the dollar needs to follow the individual. And there needs to be choices.
We have programs like the CHOICE program and the Medicaid Waivers and we tell people there are choices and there are alternatives; there is not at this particular point.
So I'm concerned about those 2,000 people. We average -- we see anywhere, usually between 130 and 150 people a month that are applying for nursing home placement and those people do need some alternatives, and we need to be able to access Medicaid Waivers for those people so they can stay at home and get the care that they need and they should have the right to choose whether they want to receive their care at home or whether they want to receive their care in an institutional setting, and right now there is no choice for those individuals.
Our waiting list, like Holly talked about, is going back to January of 1999, so we're talking about two and a half years before you will be assessed for home care dollars for the CHOICE program.
We were fortunate we got additional money this year, it will allow us to take a few people off. We've had a waiting list in place since December of last year, so there's no way we can meet the needs of about 1400 people we have on the waiting list for services, and those persons are persons of all ages and disabilities.
We usually can serve a person who has applied for a Medicaid Waiver -- Medicaid Waivers right now, I believe if I'm correct, are going back about 1996. So if you have applied for a Medicaid Waiver for ICF/MR for persons with developmental disabilities the waiting list is going back to 1996. So we will serve those people with CHOICE dollars before they get a Medicaid Waiver slot, but they will have to wait about two and a half years to get a CHOICE slot, so that's the dilemma.
You call in today, you wait two and a half years for home care, you could wait for four to five years for a Medicaid Waiver, but if you make application for a nursing home today you probably will be approved if you meet the eligibility criteria.
So we need to look at as we bring our development disability individuals into the community we need to look at what are we doing on the aging side of the house. We are placing people in institutions instead of bringing them out. At some point we need to turn this around and the aging people we need now to be giving them a choice. We don't need to be forcing them in because there's no other choices for those individuals.
I'm somewhat complexed about this situation because I see this happening on the DB side of the house but I don't see any movement for persons with physical disabilities and those who are aged on the other side of the house. And I'm very very concerned that we need to learn that this is not the best way to try to handle the older persons in our community, to warehouse them in nursing homes.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak? Anyone?
(Question and answer period.)
Would anyone else like to speak? One last chance.
(Positive response.)
HEARING OFFICER BECKER: Come on up.
MERE OGAN
One thing that I forgot to say was that I really, really resent that there's not a professional medical person or a psychiatric or mental health person deciding about my daughter. The woman that came up and talked to me was a school teacher and the other woman was a secretary and I don't think they're qualified. I really and truly resent that.
I want a doctor, a psychiatrist or a mental health person to look at my child because she's spent two months in a psychiatric hospital at Vanderbilt, her personal doctor says she has to be institutionalized because she's going to hurt somebody very seriously, and I don't mean myself, I mean some innocent person that gets in her way when she loses it because she is very mentally ill.
Thank you.
HEARING OFFICER BECKER: Anyone else?
(Question and answer period.)
Anyone else that would like to speak?
Well, on behalf of Secretary John Hamilton and Governor Frank O'Bannon, I'd like to thank you very much for attending today's hearing. I think that we got some really valuable feedback and everything you have said will be taken back and put in a transcript --
Would you like to speak?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
RICHARD SIMERS
Good morning. I'm with the Indiana Council for Independent Living, but I'm not representing them today.
Three years ago we had public hearings on these matters, independent living state wide, and I see at least one lady here that came from Sellersburg and expressed the same concerns about Muscatatuck being closed.
I have a daughter-in-law that works at Muscatatuck for ten years and she does hands-on work with the consumers there. On the council that I serve they are dedicated to getting people out into a living environment so they can live as independent people.
But on the other hand, our daughter-in-law says there are people at Muscatatuck that cannot function outside. So I really wanted to ask you does the state have a plan for the people who cannot function outside of the institution.
HEARING OFFICER BECKER: And the goal of today's meeting was to gain public input and definitely not answer questions, but I will tell you that the state under the leadership of Secretary Hamilton has put together several different teams, and while I cannot say to you there is a definite plan that I could hand out to you today, there are a lot of people putting in a lot of hours to determine who can be served best in what environment and what types of needs that we need to provide answers for each individual at Muscatatuck and at Madison.
No one will be in placed in the community anywhere until it's determined that it's the appropriate placement and that person's needs can be met in that environment.
MR. SIMERS: Thank you.
HEARING OFFICER BECKER: The transcript of today's hearing will be available on the FSSA website, so you will be world famous for your comments, and if you don't have access to the internet and you would like a copy, please feel free to let us know, we would be more than happy just to send you a copy of that or of anything else that you might need.
Linda Church's phone number is on the back page of the Transitions newsletter, so please feel free to call her and request the transcript or any other documents that you might like to see.
Again, thank you very much for attending. Those of us from the state will be staying if you have any individual questions for us. I appreciate your attendance today.
(Hearing closed at 11:30 a.m. on August 23, 2001.)
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Linda R. Merkl, a Shorthand Reporter and Notary Public, in and for the County of Johnson, 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 the Olmstead Act, beginning at 10:00 a.m. on the 23rd day of August, 2001;
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 10th day of September, 2001.
____________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2001
