Transcript of Public Hearing Merrillville
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
EVERYBODY COUNTS CENTER FOR INDEPENDENT LIVING
9111 BROADWAY STREET
SUITE A
MERRILLVILLE, INDIANA
AUGUST 29, 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:
Marie Edwards
D. Jones
Tom Booter
Clemence Hauser
Leonard Sullivan
Teresa Torres
Janet Longfellow
McArthur Harris
Sharon McKinney
Mala Florese
Deborah Taylor
Susan Gross
Karen Mummery
Cathy Carson
Elizabeth Berchman
Tom Hendershot
Lee Strawhun
Joan Getsford
Linda Ferrell
Laureen Jackson
Jill McNeil
Jean Benson
Ruth Wisor
Ms. Douglas
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: I think we'll go ahead and get started.
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. Go ahead and try to say that three times fast.
I'd like to welcome you to today's hearing to talk about Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities.
(Introduction of persons from Family and Social Services Administration.)
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? And several of you were with me this morning, so if anyone would like to get up and give this part of the presentation, that would be fine. Any takers? I guess I'll have to do it again then.
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.
One of the biggest criticisms we've had about this plan as we've been throughout the state is that it is short term, and that is absolutely a fact. That was done for a couple of reasons. The first reason being that we wanted to put down goals that we knew we had funding for and we knew we could accomplish over the next couple of years. We also wanted to make goals and move forward while at the same time recognizing this will be a continuous effort between the state and the consumers, so we wanted to make sure that we had consumer input and could involve that through a commission.
So with that goal in mind where are we right now? We have issued a first edition of the plan that 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 the 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 recognize that life here in Northwest Indiana is not the same as it is in Indianapolis or Evansville or Fort Wayne or even South Bend, but that your community has very unique needs. So we're here today to listen to your recommendations for programs to fill in the gaps in the current system or to hear about programs that are working well and should be carried out to other parts of the state or should have more funding put into them.
We're also looking for suggestions of where we should go from here? What type of things do you recommend we look at as the commission begins its work and we continue to come up with additional goals and editions of the plan.
So that's what your job is today. You have a lot to do. So you had better get busy.
There are a couple of rules. We do have a court reporter taking down every word you say which will then be posted on FSSA's website so you will be world famous for your comments. We would ask that you come to the front of the room. Use the microphone so that everyone can hear you. State your name and if it is a difficult spelling, please spell it for the court reporter. Those are your two rules.
The other thing is, I believe, a sheet was passed out with the address for where you can submit written comments. There is a mailing address. There's an e-mail address and there's a fax number, so please don't hesitate to send us written comments. If you would like that to be considered as part of the next edition of the plan, we would ask that you have it in by September 10th. Otherwise they will still be considered I just can't guarantee they'll make it into the next edition of the plan.
So that's it. I'm going to turn the meeting over to you now for you to tell us what you would like for me and others in the room to take back to the state as we begin work on a second edition and the formation of the commission.
Thanks.
Who would like to start?
MS. EDWARDS: I might as well be first.
HEARING OFFICER BECKER: Come on up.
MARIE EDWARDS
My name is Marie Edwards. I'm a long time member of AARP and I'm actually a substitute today speaking for Ed and I'm representing the Indiana Commission on Aging. This is their report. I had not seen this report until just now.
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.
- 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.
- 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.
- 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's next?
(Positive response.)
Come on up.
D. JONES
Good afternoon. My name is D. Jones. I'm a disabled person, retired, been living in Lake County for 50 years.
In my family we've had mental illness. We've went everywhere to try to get long term help. There is none in Lake County for all the years we've tried. Then we needed short term help. There's some here. Try and pay for it being disabled, being retired. Try to pay for it, the average guy can't do it. Whatever the subsidies are, we don't know. We haven't seen it. Insurance don't seem to cover those kind of things.
I've got to thank this organization for helping me understand how to go about finding some answers, getting a chance to meet with the governor when we did a thing down in Indianapolis. I got a chance at least to get it off my chest and here we get a chance to get it off our chest. That's worth more than money, believe it or not. You still need the money but at least it gives you a little piece of mind to be able to let somebody know how you feel and you're willing to work to try to do something about it.
So as long as you keep working and keep trying to do something about it, it will eventually get done with us.
Thank you.
HEARING OFFICER BECKER: Thank you.
Come on up.
TOM BOOTER
Hi, my name is Tom Booter. I have a speech impairment. I was in the rehabilitation program and I'm going through an assessment program and I'm currently working at the volunteer shelter. I'm suppose to get assistance but it hasn't been going too good because I've been in the hospital so I couldn't go to work all the time, but I'm trying.
I'll turn it over to someone else. Have a nice day. Bye.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
CLEMENCE HAUSER
My name is Clemence Hauser, H-a-u-s-e-r. The first name is C-l-e-m-e-n-c-e.
The gentleman that just spoke to you is Tom Booter. Maybe you didn't understand everything he said, but he's had a long history of problems. He was in special forces in the service. He was hurt by friendly fire. He has a steel plate in his head. He's a living testament of the will of God that he's still walking around. He can't even feel his feet. He just knows they have to move and he keeps trying. He deserves applause from all you people. He's a true Christian and his faith in God is what brought him through.
Now I'd like to say something, this blood is not from my heart bleeding. I just got a nosebleed seeing all these people incapacitated like this and not being able to get help.
I was picked up and I rode over in a van with a girl that has MS. She makes about $896 a month. Her medical bills are $700 and the state turned her down. She can't get medicine. It's unreal. I can't believe man's injustice to man.
We need a bus on Route 30. There's three churches on Route 30. I live in Crown Point now and we are not able to go to church. There are seven of us that like to go to church on Sunday. We prefer to go to St. Michael's but would take anything just so we have the connection and time to sit and meditate on Sunday and get ourselves together and get ready for the following week. It's impossible. They can only have three people picked up at a time. We have to take turns. I waited two months before I could get a ride to church.
They have an LCOC bus, don't get me wrong. They do have transportation. I was eligible to get $10 a month in food stamps out in Cedar Lake. The problem is from Crown Point to Cedar Lake LCOC bus charges $7 to Cedar Lake and $7 back. I'm not spending $14 to go get $10, it's ridiculous. If they can't mail them, keep them.
And then another thing I have $116 month spend down. I have to have $116 in medical bills from a doctor from prescriptions, whatever the case may be, or I cannot get more food stamps. I called her up to tell her, if I am so sick that I'm running to the doctor every other day and I have to get $116 in doctor bills and prescriptions bills, I don't want the food.
I called Indianapolis, Indiana, and talked to Art Daniels, who is in charge of Northwest Indiana Section 8 HUD people and people that are low on funds and low income, he agrees with me. Well, it's fine. It's a lot of talk. Everybody talks and nobody does anything. Everybody gets in the system that work these high paying jobs, social workers, whatever the case may be, they're going to sit in power. After they get in there they don't care about anything, all they want is that paycheck on Friday or whatever day they get it.
That's all I have to say. Thank you very much.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
LEONARD SULLIVAN
Leonard Sullivan, Chesterton. I'd like to thank Ms. Edwards and this lady for everything they've said because it's correct in a lot of ways.
Being a former government worker I understand what binds they're in, these people. However it didn't take the supreme court decision to get something like this going. ADA went through in '90, effective '92. It's like our state building code, which to this day does not meet ADA specifications, they're working on it. They will say that on the preface of their building code. So if you've wondered why you can't get into different places --
Now to get down to this. We're in the first stage of this. I've been through first stages for 40 years. I go back to the '60s when we were getting people from institutions, it's first stages. Everybody is constrained by the different rules of people higher up, and not Frank O'Bannon, the bureaucracy, I will say, because you can't blame the politicians.
To get this going, I don't know if we'll be alive, a lot of us, honestly, because I've seen people die in the meanwhile on different other things. And I'm looking at you but I'm not meaning you; I'm meaning your office.
I don't know if I'm coming across. And as the lady with the food stamp program that's something from the state. They used to have a lot more outreach things here and the state made them pull them back. At one time there was 20 outreach programs in Lake County. The state made them pull them back to very few. I used to be director of the food stamp program years ago.
Why do we need all of this? I'm just asking why do we need to go through the research? This has been done so many times. It's been done for CHOICE. It's been done before that. It's been done for the 317 plan. The same things have been done. Where was FSSA in complying with ADA when it came in effect? I'm not somebody from Everybody Counts. This is just my feelings.
Thank you.
HEARING OFFICER BECKER: Thank you.
TERESA TORRES
Hi. Real quick. My name is Teresa Torres and I was suppose to come up here and welcome you all when we began, so welcome and thank you for being here.
JANET LONGFELLOW
My name is Janet Longfellow, and I work here and at the Reuben Center.
I've seen many many deaf people go places without interpreters, there's no interpreter provided. There's a lot of oppression here and the deaf community seems to accept it.
We want to fight this but we don't know where to go, how to find the answers because our rights are being violated. It's been a struggle.
The state for three years we've tried to contact them, but they've never helped. They've never successfully addressed our needs and we do have specific needs.
HEARING OFFICER BECKER: Thank you.
Who's next?
McARTHUR HARRIS
My name is McArthur Harris. Don't blame me, I'm not normally nervous it's just riding the bus and I have a few things to say and I hope I say them in my own way.
First of all you have to blame the politicians because each group of politicians that come into power decide whether they like the law or they don't like the law.
Now as far as going to this federal government, I hate to say it but Mr. Bush has already said he didn't like ADA. He doesn't like Medicaid. He doesn't like Medicare. I'm going to bet when they go to find money in this short economic system where they are all digging into the Medicaid and Social Security Surplus fund that anything that gets cut will be Medicaid.
And any new benefits -- the State of Indiana has already said how many people they're looking to deliver from nursing homes and the like. It's not a large number of people.
The Ombudsman program is funded at $339,000. Take all the counties in this state and divide it up and see how many ombudsman you get, you don't get that many.
South Bend is not that different from Gary, Hammond, Lake County, other cities, Marion County cities, Evansville, because you see people in my condition have the same problems there that I would have. That is you need a homemaker, you need an aide, you need nursing services. I get a homemaker -- not a homemaker, I'm sorry, but I get an aide and I get nursing services.
I've never gotten a piece of paper that says what my right are. How much money the State of Indiana is going to spend on me and whether I can take it. I've never gotten a piece of paper that says -- I can have my brother -- of course he couldn't do it now because he had congestive heart failure at the same time I did, but whether my brother could be trained or somebody in my neighborhood could be trained to do the job.
The State of Indiana is not going to send me that paper, no more than I think there are many people that remember when Tradewinds was the primary carrier in this county. Tradewinds was told in a meeting like this if they reached out in the community there would be more people wanting their services than they can handle.
The State of Indiana is not going to reach out to the community because people need their services. It's people who want to stay out of an institution. I frankly want to stay out as long as I can. When I'm dead and my hair is still growing, I want to be out of an institution, and the State of Indiana doesn't seem to understand that.
Once a year tell me how much money I'm going to be able to spend for that year, then I'll go out and find my own homemaker service. If I get tired of my aide service, I'll go out and find another company. If for some reason I don't like the nurses, I'll go out and find somebody I like. But if I have no idea of what my rights are, my responsibilities are, then I can't live an independent life fully accessing everything I need to access.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
SHARON McKINNEY
Hi. My name is Sharon McKinney and I rode in on the bus with the lady who was up here a minute ago.
You have to try to understand what I'm saying because I have MS and it's hard for me to speak sometimes. I stay in constant pain. The Medicaid people have cut me off completely. I've been without my medicine for over a year and I'm supposed to have a shot every week to keep myself in balance, but since then I'm going down slower and slower every time I walk out of the house. It's so hard for me to turn over in bed at night. I walk around and I ask people can you show me -- tell me what to do where I can get some kind of help and they tell me they don't have anything they can do to help me.
There's a lot of people who have MS like me and they can't get no help either. I was paying a $300 spend down and my rent is $500 and I get $800 and there's no way in the world I can meet it. But I'm constantly trying to do the best I could to get some kind of help and they always turn me down. I hope they change some of the laws because it doesn't make any sense for people like me to end up laying in a bed and won't be able to do anything at all and I know I can get up and I want to get up and I can't move. It hurts.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
MALA FLORESE
Hello. My name is Mala Florese and I also believe the State of Indiana is done listening to the people's cry today. We've been crying out for many years now how people need to help and deserve to receive the help that we've been getting. I myself am a quadriplegic. I do live in the community. I do have my husband and my four kids, but who's to say that they will be here tomorrow with so much is happening today. We need the help today. We'd like to be heard today because tomorrow we need a brighter future. And why can't we get it now?
Olmstead has succeeded in other places, in Kansas. I don't want to leave my family to go to somewhere else like Kansas because in Kansas they are standing on their two feet with disabilities. I want it here at home. I want my kids to know that we have a voice and that we need to be heard. Everybody in this room needs to be heard today, not tomorrow. Our future is today. So that way tomorrow we can hold our chins up and say, hey, look, we spoke and we were heard. We need to be heard.
It hurts right now. The aide comes to my house for one hour to bathe me, to take care of me in a rush, oh, I have to leave. It's not right. I also would like to say, hey, I'm going to hire you and you need to stay for as long as I need you, because I'm somebody. I want to be heard. I don't want to be put in no nursing home. What is it, $5,000 a month. If that's the case, I'm rich. Why go to a nursing home and receive the help and give them all the money when I won't own anything, not even the bed that I'm going to die on that someone else is going to take over it.
Living in the community gives us hope and dreams and that way I can say, hey, I'm going to go out. Would you like to go out tonight after nine o'clock, whatever time I want to go out. I want to live in the community. I want my kids to know that my voice is being heard today so tomorrow we'll have a brighter future.
Thank you.
HEARING OFFICER BECKER: Thank you.
DEBORAH TAYLOR
My name is Deborah Taylor and I work for Lake County Association for the Retarded. And I am a social worker, but I am not the kind that just gets a paycheck. I do feel for the residents that I serve. What I hear is now. The help has to come now. And what I see is -- I'm a child of the '60s and I think about all those protests, all those marches, all those things like that and I think part of the reason the politicians aren't listening they're not putting a face to a disability. They're not thinking of you people as disabled. It's nice to ignore. It's nice to walk on the other side of the street.
When I take my residents out I still see people looking at them oddly. My god, it's 2001. Read a book, watch a movie, rent a VCR tape, I mean you guys are here. The more and more people that are coming out into the community the more you're going to be here, but I look at it as just not putting a face to the disability to get people's attention.
You guys have the same wants, desires, dreams, loves, everything, and you deserve it and it's time for the able-bodied people to really start fighting for this and fighting for you. I keep just thinking about those protests and marches, go down Broadway, look at us, we're here.
So that's all I've got.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
SUSAN GROSS
Hi. My name is Susan Gross. Although I work here, I'm also a grandmother. Anyway there's a problem at that level too. My grandson is three and he's went to first steps and he's now with the Hammond School system, but it's been a nightmare. Everybody has their own stories. It's been a nightmare for my daughter in trying to just get him a walker, a feeding device, a formula that he needs to grow. Something needs to be done.
From the day he was born, I'll call it, until -- the stories going on here, there's just so much missing out there that has to be filled in so people don't struggle.
I can't talk anymore. I'm sorry.
KAREN MUMMERY
Hi. My name is Karen Mummery, and I have a six-year-old daughter who's autistic. In reference to what she just said, it's a constant battle fighting for services for our children.
I understand you want the people to tell you what their needs are, et cetera, et cetera, but as a mother having a child diagnosed with autism it would have been nice to have somebody come to me, this is what you need. They have experts who can help you.
Right now we're funding -- the whole thing about the Olmstead Act is to have people live independently in their community. In order for my daughter to be independent in her community in the future she needs help and she needs it right now. She's six years old. We've had to go out of state for services because there are no experts in this state. So we're funding a home program for her out of pocket. It's costing us over $20,000 a year. Fortunately, we're in the position right now where we can do that. What about the people that can't?
We just had a meeting last week where we had a mother come in from Gary, her daughter was eight years old and had never been labeled by the school, never had any helps. Her daughter was stuck in a self-contained classroom. She is non verbal, does not communicate, has never been taught how to communicate, has never been shown sign language, and she's never received any help for this child.
There is a huge lack of communication as to where we can go for services and what type of services we can get.
My daughter is currently on the autism waiver waiting list. When we signed up three and a half years ago, she was at 752. Now she's at 352, three and a half years later. There are now 1700 people on that waiting list. It took us three and a half years to get to 300. The person who signs up today at 1700, how long is it going to take them to get funding.
Every expert out there says they have this window of opportunity where they can learn from three to seven, three to six, whatever. This is her time to learn everything she can to be independent later. Who's going to provide those services? Who's going to help us pay for it? And every avenue is a fight and a battle.
And when you have legislators saying we're doing the best we can, and they just add a few slots to the waiver, well, it's not good enough. There are 30 new applications a week for the autism waiver. It's just a vicious cycle that keeps going and going and going.
CATHY CARSON
Hi. My name is Cathy Carson.
I'm 49 years old. Three and a half years ago I was diagnosed with spondylosis which is degeneration of your vertebras in your back. I also have osteoarthritis. I work part-time in a local hospital as a switchboard operator.
I stepped off of a curb wrong and I cracked my hip, that's how brittle my bones are. I see my doctor every three month.
I have asked at times could I work the front desk where I don't have to walk to the back, and I have been called every name under the sun by my employer to the point I have said to her, I hope to hell I live to see you hurt like I do because you do not understand.
And she said, if you don't like it, go on disability. I told her I will go on disability when I am damn ready. You're not running me out.
Now, when we have employers in a hospital who are willing to say to their employees go on disability, this damn country is in a mess. We'd better do something.
We'd better stand up for what we have, the right to stand up, and if they don't want to listen to us, then we had better just start marching, doing whatever we have to do because this is out of control.
Thank you.
ELIZABETH BERCHMAN
Well, listening to everybody today I'm afraid brings lots of tears to me because I can understand your problems and I feel for everyone of you.
My heart is breaking, but in 1954 I had a set of twins. My son was born deaf. The deaf today has it good to what we had then. I fought. I screamed. I cussed. I done everything that any mother can do. Finally, we moved to Lake County where we had promises, promises, promises of special schooling and then we find out we didn't live in the right district. We lived in town. We had to live in the country if we wanted to have my son in a special school.
Now my son has risen above part of the problems. He holds down two jobs. The pay, and you know what pay is these days, he couldn't keep himself on it if he didn't have the help up of his father and mother. He can't go on social security because social security equals about the amount of money that he makes working two jobs.
He doesn't know sign language. He did know it at one time a little bit because he was in the situation where he had to use it. But there is no sign language classes that Gill can go to because he has to work nights, there is no day time classes.
I know this is a small thing to a lot of your problems but this boy is going to be completely deaf probably before he dies and I might not be around, but anyway that's my son's problems.
But as a senior citizen I have a problem and it's a silly one. I have had knee surgery three times. I have gone to my therapy program where the stools are down here. I have gone in to doctors' offices where the chairs and the stools are down here.
Now, there is supposed to be rules and regulations saying that we have handicapped bathrooms, but I'm not finding them. I'm not finding walkways so that I can walk with my walker, because that's where I am at this point. This is a problem. The law is there but the stools and the chairs aren't there.
And you think that doctors who take care of the senior citizens and all our problems with legs and backs would at least have one chair in the room or in their office that would be high enough for us to sit down.
I don't know how we're going to get this. I have complained. I told the people at the therapy here you are giving me exercises to teach me how to get around and I can't even go to bathroom here. Of course, it made no difference, the bathroom did not get any larger.
don't know how we're going to solve this problem, but this is a problem we senior citizens have. We can't get up. We can't get down, and we can't get around. We need some help.
HEARING OFFICER BECKER: Thank you.
(Information statement made by Ms. Torres with audience participation.)
HEARING OFFICER BECKER: Who's next?
(Positive response.)
Come on up.
TOM HENDERSHOT
When I was living in Minnesota I was there for about seven years and it was really cool there. I never had any problems. But when I moved back -- I moved into an apartment, it was a HUD apartment, and if they noticed that there was any problems they would put up signals for the doors and fire alarms for the deaf. It was wonderful there. They accommodated my needs.
But when I moved back here to Indiana I asked them about a door alarm for myself, they told me I had to purchase it myself. I thought, no, you're supposed to add those, you're HUD, you're under the government -- you're supposed to add those, and what's wrong with you.
And secondly I went to the welfare department and I asked them about health insurance and they were questioning me how much I earned and I told them a $1,000 a month and they said you have enough money coming in, so I was kind of tired of hearing what the state tells me I should have. I felt poor. I don't see that the government really cares about what people feel or how they live. Why do they do it that way? It hurts to know the government doesn't care about the people.
The State of Indiana really is shit.
HEARING OFFICER BECKER: Who's next?
LEE STRAWHUN
My name is Lee Strawhun, S-t-r-a-w-h-u-n. I'm the CEO of the South Lake Center for Mental Health.
I wasn't certain whether I was just going to sit and listen or stand up but I sort of felt compelled for the following reasons. Most of the comments that I would have otherwise made have been well made and articulated by others and I'm not going to repeat that.
But there's a population -- I'll use the word disabled, folks, and I don't care whether it is because they're elderly, because of physical handicaps, hearing impairments, because of mental retardation, because of autism, because of mobility impairments that were not a part of this funding process and are not here, and are not represented in any of the action planning contained in this document nor in who the lead agencies are.
That is an increasing number of people that are in our jails and in prisons of the State of Indiana and for that obvious reason it makes it very difficult for them to be represented and the Department of Corrections nor any local correctional organizations to the best of my knowledge were participants in any of this planning process.
Why do I feel compelled to get up and say something? In part because the South Lake Center offers certain community based services but they also have a responsibility of working in the Lake County Jail and the number of mentally ill, the number of people who are learning disabled, the number of folks who are autistic, the number of individuals who have mental retardation has been increasing significantly over the last ten years and more so over the last five years.
So when we talk about Olmstead and we talk about ADA and we talk about community reintegration, naturally the thoughts fall to people in the large state operated facilities operated by the Division of Mental Health or the Division of Disabilities and Aging and Rehabilitation Services -- I always get that wrong -- by the State Board of Health. But look at the Department of Corrections and how many people are in those facilities because of the lack of primary intervention, the lack of community-based services, the lack of support, then were they to have had access to that perhaps they would not have ended up there.
When I look at the state budget and where it has increased most dramatically over the last ten years, it hasn't been in FSSA, other than perhaps for Medicaid, it's been in the Department of Corrections. Somehow legislators and others can find ways and budget dollars to continue to build ever larger state prisons and to staff those but cannot find the resources to help people from getting into prison or to help people remain independent in the community in the first place.
So that's my only two cents that I wanted to add that wasn't duplicative of what was already being said here.
HEARING OFFICER BECKER: Thank you.
JOAN GETSFORD
My name is Joan Getsford. I am representing myself. I'm not with any particular agency.
I thought I would follow Mr. Strawhun because he's a representative from the South Lake Center for Mental Health. The issues that I'm here to talk about are for people with mental health disabilities.
I've been so nervous about coming here to say what I want to say I'm afraid I might, one, pass out while I'm here, or I might die in the middle of this, and if I do, so what. Thirdly, I might even just get confused and you might not understand what I'm saying.
I've been reading over this Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities, and I am very very very confused. I'm confused about the language and what does it mean. I really don't understand a lot of what this is saying. I don't have the time or money to go to college to get a Ph.D. in bureaucracy.
I was at the last meeting that FSSA had here. It was a public hearing just like this some months ago, and I recall many many people talking about the dental benefits under Medicaid -- or lack of dental benefits under Medicaid. I don't find anything in here about dental. I do have problems with cognitive processing so it could be in here and I just didn't see it yet, so correct me if I'm wrong, but otherwise I don't believe there's anything in here about dental. And it does cause me to ask if we're having these hearings and supposedly we're being listened to, case in point, the dental discussion was ignored and this is wrong.
Second point, yesterday I talked to the CHOICE program. I called them up and I said I want to be put on the list. I was told that currently CHOICE is closed. It's been closed for quite a while, and I make this comment because this is now, this is today, the program is closed today. We would like it to not be closed today.
The programs in this plan list a lot of time lines for budgets that will go into effect in a year or two, these plans are all about studies as someone else had brought up before, I'll bring it up again. Well this is not adequate. CHOICE is closed today. We want CHOICE open today.
The last meeting here with FSSA myself and many others brought up the fact that today we do not have any kind of written copy of what our Medicaid benefits are. Since that meeting I don't believe that request has been addressed. And I'm here to ask you, may I please have a written copy of my specific Medicaid benefits today?
HEARING OFFICER BECKER: Not today because I don't have a copy with me but I'd be more than happy to send you one.
(Questions and answers.)
MS. GETSFORD: All right. You got the point. We do want them. We do want them today. We don't want the study to be funded in two years.
All right. My point I have to make is for people with mental health disabilities. We are discriminated against in all of these services. I have called home services, a group called Awaken Alternatives and they say that to be eligible for their home services, one, you need a medical diagnosis. Now, somehow in this jargon, and I don't know who has determined the jargon, mental illness -- all mental illnesses are not medical diagnosis. Therefore every person who has a disability from their mental illness does not receive any home services. This must change immediately. This includes homemaker services. This includes occupational therapists.
And as I was told from this woman at Awaken Alternatives an occupational therapist is termed a skilled service. And you may not receive skilled services, quote, unquote, from Medicare, they will not cover these expenses unless a nurse is in place at your home at all times. This does not make sense. I would like you and the folks you go back to to change this definition. Thank you.
I'm not done yet either. I'm getting back to yesterday when I called the CHOICE program at LCOC, spoke to a very kind woman there. There is something called Title 20 currently. I don't know what Title 20 is. But what it does do is provide homemaker services in the home for someone but you have to be over 60 to qualify, which I don't quite meet just yet, and I don't know why that stipulation is there but it's just another limitation. The thing about Title 20 she said is you don't have to be nursing home eligible to receive the homemaker assistance. I guess these other programs say you have to be nursing home eligible.
All right. What is nursing home eligible and this is something they're doing in the CHOICE program and the Medicaid Waiver program that I'm totally confused about but I did some calling and found out a couple of things. In order to be nursing home eligible you need to not be able to bathe yourself or feed yourself or dress yourself or walk across the room. If you cannot do these things, you are nursing home eligible and therefore you are eligible for -- I believe it's CHOICE or the Medicaid Waiver or both.
Well, there are a lot of people with disabilities who can do those things but they still need services in the home. This determination, this set of criteria must be changed else it's discriminating. It's discriminating against everyone with a disability who can do those things. It's very much discriminating against people with mental health disabilities.
I think I covered it. If I forgot something I'll just come back. Thank you.
LINDA FERRELL
I'm Linda Ferrell. I'm living on my own. I am quadriplegic due to domestic violence 13 years ago from a gunshot wound. My sister took care of me in her home in West Virginia for six and a half years, with no charge and no expense to the state.
And then it was time for me to leave her home because she had a very ill husband, who has since died, and she needed to take care of him. My children wanted me back up north where they had graduated finally from college and high school, and so I moved back to Indiana and moved into a nursing home. The nursing home that I lived in was Canterbury Place, and I was there for five years.
It took me -- when I was first injured no one let me know what your rights were from moving out of the facility, the rehab center. So after I moved back to Indiana I joined Partners in Policymaking which I learned a lot of what type of programs there were out there for a person living out of a nursing home.
Living in a nursing home for five years took away my dignity. I had to argue with the nurses just to get one shower a week, which was very difficult and very hard.
I am a registered nurse and I thought by moving out of the nursing home I could have the opportunity to get back into the working field. Well, when I was in the nursing home I maintained my insurance that I had from my work but then was told that I could keep my insurance when I moved out of the nursing home by a federal program called HIPP and I was told this by a lady in Indianapolis. Then after I moved out of the nursing home, two months later they were not paying my insurance. So, therefore, how can I ever go in to the working field with no insurance coverage. My nursing services will be way too high, much more than what I make as a working person.
I've been trying to get on the HUD program, the Section 8 housing, for five years and have been denied an application for five years now. I know there's other people in other states because it is a federal program to be on the waiting list, but I've not been able to even get my name on a waiting list for over five years now.
So there has to be some -- instead of offering all these grants for the study of earthworms and the study of salamanders, why can't they turn around some of these silly grants and put them towards the people out there that really needs help.
Thank you.
One more thing, since I'm living in my own apartment I'm willing to sleep in one position for 12 hours just because I choose to live outside of a nursing home. So if I'm willing to lay in one position for 12 to 13 hours, why can't we get more money out there for nursing services. I just heard from my nurse who comes in three days a week that Medicaid has cut their nursing salary.
Thank you.
HEARING OFFICER BECKER: Who's next?
JOAN GETSFORD
I did think of something I forgot and it has to do with people with mental health disabilities. There are a lot of people with mental health disabilities who can't come here today and speak and can't come here and give you the feedback that you need to hear because of their disabilities. They probably couldn't stand being in a room with this many people in it or just speak out loud in front of a group or just take the time to travel all the way here and back and many other reasons, or they aren't able to express themselves adequately and that's part of their disability, and these people need to be included.
HEARING OFFICER BECKER: Who's next?
VOICE: May I say one more thing?
HEARING OFFICER BECKER: Sure.
VOICE: I'm not nervous now. The gentleman mentioned visiting nurses and I got a dear john letter from visiting nurses one day. They shipped me to the curb because I went to the doctor and my aide showed up at 4:30 and I wasn't back and she said these famous words, he's never there.
They assumed, and you know what assumes means, I was leaving the house. I was homebound. And they meant homebound and they didn't mean in the yard, around the tree, around the curb, they meant homebound and they shipped me away -- well, actually I got the notice on the phone at five o'clock and I was gone the next day. I had a friend get me up out of bed the next afternoon but I had to find an agency.
Now the state can send us some information as to what the procedures are. They received a Medicaid Waiver, they knew they were going to be paid. They couldn't give me three days notice, four days notice, a week's notice, no, they said, go out and find your own.
So I'm not going to miss visiting nurses. They can take a fly and a long short leap off of a high building and whether they hit the ground or not, I don't care. But I'm not going to miss them and I bet you a lot of other people aren't going to miss them either.
They would get you up at 2:30 in the afternoon and I don't know about anybody else but I had a life and I kind like a semblance of that life, but getting out of bed at 2:30 in the afternoon and the evening aide goes, can I come and put you back in the bed at 3:30; well, I don't think so.
Thank you.
VOICE: I understand what he's saying because I was -- two agencies let me go because I was supposed to be homebound and they found out that -- I was in the newspaper that I was at a community, like this, gathering, speaking out for others and myself and I was let go from two agencies.
Now this agency that I'm with it's been like three years, guess what, my name they're playing with it, because I have Medicaid and I have Medicare, guess what, they're getting billed both of my insurances, the reason on one is I'm homebound and the other of them is I'm not. With Medicaid I'm not, with Medicare I am. And how do I feel? This is upsetting because why are they playing with my name with my insurance and make my life a living hell in their own records and pretend that I'm nobody and I have no life to live, I don't think so. This needs to be stopped.
HEARING OFFICER BECKER: Who's next?
MS. HAUSER: Can I make one more point?
HEARING OFFICER BECKER: Come on up here.
CLEMENCE HAUSER
I'd like to make one more point that I didn't get through before. Another thing that hasn't been addressed here today, and I'd like to make a point of it for the elderly and for the disabled I would like to see our prescription drugs taken care of by the state. I am almost 77 years old, in a few months. My rent even though I'm on HUD is $202. My income is $600. I pay $50 a month for my prescriptions, that's half of my income and then I pay all of my electric bills, the heating, everything. I have nothing left for myself.
The people at the mental health center get $35, $30 a week for their spending. They can spend it on anything they want. They can go out to eat if they like. They have money put away. They're complaining that they're home all day and they've got 52-inch television sets. I don't have cable. I don't even watch the TV. I turn the radio on because that's electric. I think it's disgusting. These people that are in the mental health center are malingers. They are in there because they want to be. Twenty years, it doesn't take 20 years to heal. If it is, the doctors are wrong.
And Mr. E.B. Lily is getting rich hand over fist. They get $920 a month at the mental health center for every person they get in there. Most of these people are living in the past. This causes them depression and the mental health. They have something in their past that they can't get by and why can't they talk about this in groups.
VOICE: Made a good speech. Some of them I agree with and a few of them I don't and it's not something us against you, we against them. There's things from a mental disabled person that they don't understand much less a person who's been trying to study it for 30, 40 and 50 years. Most of them don't understand it.
But for the mental health facilities that are doing some good, let's give them some credit. There is some people getting some good from it so don't run everybody down because somebody moved in in your neighborhood, you can't do that. There is mental people capable of living anywhere in the world. There's other that aren't. We have them in our family that aren't. They had to be institutionalized for over 20 years. And if you lived with her when she was in our home you would understand why. Thank God there's some institutions somewhere. We're trying to get them in Lake County. Our government says down by Indianapolis, get them out.
This is one of the things that I talked with the governor about. We'd like our loved ones to be close enough so we can go visit them. Give them some sense of being a family in a community. We know they're too far off to be your everyday household guest. We need that institution for those who can't do for their self, but for those who can they might have to be in my neighborhood, they might have to be in your neighborhood, they might have to be somewhere, let's don't run that down. It's hard enough to get them help --
MS. HAUSER: I've got a little rebuttal for you.
VOICE: I know you do and I'm not against you. I'm not against you. I want you to know that. You're entitled to your belief and I don't think this meeting here was set up for us against them and what have you. We can be against what's wrong with laws that was supposed to be held up. We can do that. We can ask for new ones to be made. There is things that have been accomplished. Let's recognize that's a beautiful facility, South Lake Mental Health. There is people being helped. I talked with them.
(Discussion period.)
LAURENE JACKSON
I'd like to know if a program can be developed for a person with cross disabilities that don't need very much help in the home but do need some help. And if you're not severe enough, to use their words, you don't qualify for anything. But if you can do a little bit more for yourself, like go to school or go to work or whatever and some of your funding is taken away and you're not given anything, I'd like to see a program designed for the people that fall in the cracks as they say.
My comment is this: I've been to both meetings, this morning and this afternoon, and I think for a minute there we lost focus of what we're supposed to be here for. We should be working as a unit not as segregated pieces of a puzzle, the mental disabled over here and the physical disabled over here and the visually impaired over here, we're supposed to be doing this as a whole. And until we do that we're not going to get anyplace. We're not here to argue with each other. We need to cut out that and get something more useful.
That's my closing comment.
MS. HAUSER: May I say something --
HEARING OFFICER BECKER: Let's see if there is anyone who hasn't spoken yet.
(Positive response.)
JILL McNEIL
Hi. My name is Jill McNeil. I'm a little nervous about coming up here.
I also have a child with autism like the other women who spoke earlier and I know a lot of other parents with children with autism. Most of the people I know their children are still pretty young and we all have them in our homes with us.
But the reason we're very active is because one day they will be older and we don't ever want to see them going to an institution. As my friend Karen said, the more you work with children with autism when they're very young and give them intensive therapy, intensive services, they can make huge progress and become productive members of society.
We're trying to do our part to help the system change so that they can -- so all children with autism can access quality services when they're young and get some help in communication and make progress in all areas.
As Karen mentioned there's over 1700 people on the waiting list for the autism waiver right now. My son has been on the list for maybe four and a half, five years now. I don't know how many more years before his name comes up on the waiver. Fortunately, we aren't that needy financially. We can afford to give him the services he needs as much as we can.
Unfortunately, the schools in our area don't know anything about working with children with autism and there are no qualified providers in the state, so we bring people in from out of state.
Part of the reason we come to these meetings is because we want to try to change things for all the children with autism and there are parents who don't have the financial resources or don't have the knowledge as to what they need to do for their children right now. So we would really love it if more funding would be made available so that these waiver waiting lists can be -- eliminated would be great -- but at least so people wouldn't have to wait very long because I really believe it is against the rights of an individual who needs immediate services to be denied them for an indefinite period, maybe for 10, 15 years before they get eligible. So that's basically all I have to say.
HEARING OFFICER BECKER: Thank you.
Who else hasn't spoken and would like to speak?
(Positive response.)
Come on up.
JEAN BENSON
My name is Jean Benson, and I work at a group home for retarded adults for LCAR. And I've been working with mentally retarded adults for like 29 years, almost 30.
And last year was the first time I found out exactly maybe what it might be like to be just a little disabled because I had a brand new knee put in my right knee and I was very afraid because I thought I'm never going to be able to drive again.
But I found out that, yes, I could drive because I listened to the doctor and I did the physical therapy and I did what I was supposed to do, but the thing that spurred me on were these young men that I work with. I call them young men, but they're my age. They're 50 years old. They're not young anymore. They just look young.
I didn't even really know why I was coming to this meeting today other than the fact that the people that I work for had let me know that they were having this meeting and I thought, well, what can I say, what could I do? I can't help them. I have enough trouble helping the four young men that live with me.
But I can certainly go home maybe a little more enlightened and know that there are a lot of people in this world, a lot of different disabilities, and I agree that we have to work as a unit. You can't get upset and say this is the group I want to help. I only want to help the mentally retarded, you can't do that, because there are a lot of other disabilities.
The best I can do is go home and maybe enlighten some other people, talk to them, tell them, and pray, because God is definitely our biggest ally for all of us.
I keep thinking -- I laugh about my knee and I can get up and drive and everything, but a lot of people with disabilities can't be reborn again and have a brand new brain put in there so they're not retarded anymore or people that have been injured in car accidents and that, they're never going to get to use their legs again. So believe me I am enlightened about this meeting and I appreciate the fact that I was able to come here and kind of slip in and be a part of this group.
HEARING OFFICER BECKER: Thank you.
MS. JACKSON: I'd like to know if they could do something with the authorization waivers that you need when you need to see a doctor out of state. For instance, if I need to go to Chicago I need an authorization from a doctor. Sometimes it takes six months, almost a year to get to the specialized doctors and if that institution isn't Medicaid/Medicare accepting what options can we have to go outside and get those treatments because it's not offered in our state.
HEARING OFFICER BECKER: Is there anyone else who hasn't spoken and would like to speak?
(Positive response.)
Come on up.
RUTH WISOR
Good afternoon. My name is Ruth Wisor, W-i-s-o-r.
I am really touched by all I have heard. I wasn't prepared for this. I thought this was going to be more like reading out of a paper and giving us information that we could assimilate or just ignore. I have a whole new concept of what you people are trying to do here.
I didn't bring a problem of my own. I thank God I don't have one. I brought a problem from somebody that I have known for about 18 years. I've only saw her twice. She's the most uplifting person I've met. We talk over the phone. She only lives in Hammond. You would think I would go over there and see her but this is not the way she wants it.
She lives in such a limited space, such a limited life. She doesn't move much. When she puts her clothes in the washing machine she has to wait until somebody will come in a day or two and lift them out of the machine. Why? Because she was born practically in a hospital bed and a wheelchair, and to this day she's still there.
The most fantastic and sad picture about her is she had a dedicated mother, she had a fabulous father, who worked very hard all his life, who had so much pride he would never ask anybody for help and every single need she had he reached out somewhere in there, in between prayers and good will and a lot of willingness to do something about it, he would fabricate beds that would lift her, fabricate chairs that would hold her, fabricate all kinds of things, never got any help. Actually he never wanted any. He was ashamed to ask for help. He thought help was for somebody who really had nobody and nothing more and his daughter had him, had his wife, and had a little kid brother.
Well, throughout the years she practically lived in hospital beds. Her file is filled from hospitals from the east to the west to Mayo Clinic to Chicago Hospital, but the most unbelievable story that I bring is because I am feeling desperate because this girl cannot get any help. Her father died by the way with cancer. Would you believe she ministered to him until the day he died. She changed the bed from a wheelchair.
Do you know that she has the bone disease that is so serious that she is a million in one. She can break a bone just if she would sneeze but she tries not to though. She cannot get into a regular wheelchair. She cannot ride in one of those buses -- I told her you just call and they pick you up. She cannot take a ride in those things. To get her down from the house she has to have one of those lift chairs that her father and her brother got for her many, many years ago.
So when she was around 40 some she decided that she was going to get a job. She's a brilliant person. She also has a personality that can be only described in a word that I would call indominable (sic). That girl can't go down, have always had the spirit and strength, have spirit of America, she has hope.
Well, when she decided that she was going to do something, she wanted to get a job somewhere where she would be a help to people and she wanted to work in a hospital. What better place for somebody in a wheelchair who cannot move very much but has the brain working full force so she did and for 12 years she worked there as a part-time employee.
When she got to be a senior and had lost her father, she had lost her mother about eight years ago, she had nobody else, she had a place, a house that begun to be very crowded, although there was one person in that house. You see she cannot reach too far, too high, too low, so she begun to put things that way and that way, and she has a bed, and that's the reason she doesn't want me to visit her and I respect that but my friends needs help.
I have thought about ways to help her but I'm so limited, and everything I think about -- sometimes I'll ask her, she wants no more of it.
My willingness to come to this meeting today was to ask where do I go for help for her. She cannot do anymore. I told her about the lawyer that could help her with social security. Come to this meeting, how, how is she going to go. My husband or myself we could take her. She said what kind of car do you have? I told her. She said no, the car door has to open completely. She has a very old car that she keeps for some day when she has to go to the hospital or doctor.
It is a very difficult life that she lives. But the courage she has, she never feels defeat. I feel more defeated than she does and I have no problems.
She is my sister because she belongs to the human race. She is my dear friend and she is a valuable human being and I need to know where to go to get help? And I think she's worth the effort.
HEARING OFFICER BECKER: Is there somebody here from Everybody Counts that can help her?
MR. BENNETT: Yes.
HEARING OFFICER BECKER: Thank you.
MS. DOUGLAS
My name is Ms. Douglas and I'm speaking on behalf of the participants in the day care outpatient treatment program for the Corinthian Center. We have among those women who come there all of the above. We had one lady who is a recovering stroke patient. She's been there now for quite a long time. We opened in 1988, so we've been in existence about thirteen years.
Because of the changes in Medicare and Medicaid we don't qualify for the path program and there are other programs that we don't qualify for.
We have some women in our group who are unable to come unless they have a nurse to help them get dressed. The person with the stroke has not learned yet to dress herself. She can however step up on the van. She has a brace but with assistance she can step on the van to come to the center.
There's another one who has mini, m-i-n-i, strokes, and because of that she's suffering from dementia. We do have to hire a nurse but we don't money to hire a nurse for HMO persons because HMOs do not allow any reimbursement for the care of this person at the center.
There is another one -- what this program is about, I guess that's what I'm hearing is that a person can remain home with their families or remain independent instead of going to the nursing home and that's why we were started 13 before this was being done.
But there's a person who chooses to come to the center. She stays at a nursing home all -- except she wants to come to the center so she can get the social outlet that she needs from other people who are on her intellectual level. Well, she's on HMO too so we can't get assistance for her either.
There is another person who is married and because the insurance rates are so high for supplemental insurance she and her husband had to change from Medicare to HMO because they can't afford to pay the insurance, now she can't come, because we need to get reimbursement so we can pay the nurses, so we can pay for transportation and pay the water bills and NIPSCO and all the overhead expenses.
There's another person who's there who is very frail now and she's getting more and more frail. She does not have a healthcare person. She and her brother have to share somebody to just come in to help them out while her daughter is at work.
This person who has dementia has to be closed up in her house while her daughter goes out to work because there's no one there who can come in to care for her. She doesn't qualify for a nurse yet. So there are a variety of needs and there is not money available for adult day care for some persons, and so if this continues we may have to close, and if we do all of these persons except two will have to go to a nursing home.
And my experience has been that that person who is in the nursing home now she has begun to decline. Her memory is declining. I hear the nurse said she fell at the nursing home this morning. Her strength is declining. She's nothing like she was three months ago before she went to the nursing home. But one morning she had fallen and she couldn't get up and somebody found her on the floor and because of that her daughter put her in a nursing home so there was a great need.
There's one day care in Gary for persons who are about in the second stage of Alzheimer's, there's another one on 45th Street, and the Corinthian Center. There are not enough of those kinds of places for those people to go and get out of their high rises while their children go to work, but we can't get the funds. There's none available. These persons need help.
And there's one other thing, and I'm a senior too and by the grace of God I'm standing here today, but I totaled my car Wednesday before last and I did go to the hospital, but because of the structure of the car I wasn't injured as badly as I might have been.
The doctor did give me a prescription and I noticed while I was taking that prescription that my whole right side had started to numb out. I couldn't get in to see a physician. I went to the drug store and fortunately heard about the prescription on TV and I didn't pick up the prescription which was $129 for that one prescription, because I was afraid I might get paralyzed on the other side. Someone needs to tell people about prescriptions and the doctors need to tell persons they may be harmed by taking that medication. I only knew that because I heard it on television.
Thank you.
HEARING OFFICER BECKER: Come on up, or do you need me to bring the microphone.
VOICE
I'm blind so I need the microphone. It's been a long time since I've spoken publicly. I've gone blind and due to being blind I've experienced certain things that have taken my confidence away, so I'm not going to be a good speaker, so please forgive me.
I do have one thing I haven't heard here yet is that these homes that are for the elderly and for the poor elderly and the handicapped, there is a community throughout the world that becomes one whole place, they are not being taken care of properly. They need transportation. If only we could get the proper transportation and people to help at home.
There's an organization Help at Home. I have it. They come over and they help you a little bit. Now I have a good good woman that is helping me now but there has been some that pretend to help since I can't see. But someone else taught me a trick. Lay a little bean someplace that you know where it's at, one that's coated or a nut and lay it down it somewhere. They never picked it up with the vacuum. They are being paid for this and the organization is being paid for this but I'm not getting that help, neither is anyone else. So I do most of my own work because I'm dissatisfied except for this one that I have now. I would take and cross over as I vacuum one direction then the other. I did it in my own home, that's how I learned to do it.
There's also people in these apartments that need help as much or more than I do because my worse handicap is my eyesight. I have other things wrong but I can get along. These other people can't, and yet they can't get help. There is no help at home to extend to the other people.
Now I went and started to take them with me in the car that was picking me up. I got in trouble for it. I kept doing it for a little over a month and I got in trouble for it. It was my own trouble, because they treat me real nice because I treat them real nice. So under the circumstances I had to let these people go. And they can't get help because nobody wants to be hired over there. They don't want to wash your back. They don't want to scrub other items so they don't come and volunteer and work for the organization. They say they put the ads in the newspaper and nobody comes. But these organizations are still being paid for existence, where is the money going.
I am trying to get help for these friends. I have two of them with me. If it weren't for them, I couldn't have gotten here. They need help also. Their families have too much going on where they can't contribute help. Sometimes one of them doesn't get food in all week long and she has to stretch everything. Another one can't get out to the doctor because the bus service is too crowded. But with me since I'm totally blind, they squeeze me in between if I need the bus service. Why can't they do that to the others too? It's still a human being, just like me, why can't they squeeze them in even if somebody is early or late but at least they get there and they will explain to the physician or to the organization and they have to accept it.
I think everything else has been covered very excellently by all the speakers and I compliment you all, but what will happen after today? Will this reach the proper people for us to get the money to help and the attention we need, that's my question.
Thank you.
HEARING OFFICER BECKER: Is there anyone else who would like to speak who --
(Positive response.)
Come on up.
TERESA
My name is Teresa -- and my brother is Jesse, which some of you know, and he has skin ulcers on his legs. Every time he goes in the hospital they try to force him into the nursing home, and they have this attitude. And to put you in the nursing home isn't always the answer because he was in a nursing home for 14 months and he came out with a worse infection than he had before.
Recently he's been having problems with the home health care service because he's got a hole in his back and they left one of those gauze pads in his back. We're finding out now that a CNA was changing his bandages, which is strictly against the law, but now he's got a different nursing situation that's doing a better job.
I know that the state goes into nursing homes, which they should, but there's not that many good nursing homes around here because I've worked in them. The CNAs are doing most of the work and they're overworked and underpaid.
It's not always the answer, a nursing home, just because they're costing so much to keep them out of a nursing home. Anyway this is a gripe that I have. He's in the hospital right now and even now they're saying something about a nursing home. He said he'd rather take a gun to his head than to go into a nursing home again, and you can't blame him for that.
Not all nursing homes are bad so don't misunderstand, but there's not that many that's good in this area. I just wanted to share that.
With that I'll close.
MS. DOUGLAS
I would just like to say amen to something that she said. My mother was an Alzheimer's patient and she was in a nursing home for 15 years. She was bed bound 10 and had all kind of bed sores. While she was in one nursing home her arm was broken. While she was in another one her hip was broken, and after her hip was broken she never walked again. She had a sore as big as two fists could fit in. So she didn't get turned as she should have gotten turned because she couldn't turn herself, she couldn't feed herself. She couldn't do anything for herself.
Well, I'm not going to the nursing home. I'm kind of like your brother. I'm just not going.
She was in four and they all had -- I had to call the state health department to one and we sued the other one, so that was two.
I would also just like to add that those persons who are at the day care center, if they have HMOs they get kicked out of the hospital before it's time for them to come out and I understand that they don't get home health care if they're HMOs. Even the registered nurse who works for us had to have surgery, she switched from HMO back to Medicare because she couldn't get home health care while she recovered.
So there's something wrong with the insurance companies taking the place of physicians and calling the shots. There's just something wrong and the people that we take care of are unable to do anything about that, so we need people like yourselves and other people that you know to help.
ELIZABETH BERCHMAN
There's something that hasn't been addressed when you have to make an appeal on a decision that social security has made or any of the other organization, you cannot get an appeal. There should one unit in every county where the people can go regardless of what they're appealing. There should be an organization they can go to to make an appeal without having to travel to Chicago or Indianapolis when they can't go.
HEARING OFFICER BECKER: Is there anyone else that hasn't spoken and would like to speak?
(No response.)
Is there anyone who has spoken and would like to speak again?
(Positive response.)
Okay, come on up.
TOM BOOTER
I'd like to say something -- I'm one of those patients from South Lake -- I'd rather see it going into the community than some drug dealer's pocket in our society. Thank you.
HEARING OFFICER BECKER: Is there anyone else who has spoken and would like to speak?
Anyone who would like to speak?
(No response.)
Well, on behalf of Governor Frank O'Bannon and Secretary John Hamilton I'd like to thank you very much for your participation in today's meeting. You've definitely given us a lot to think about.
I know that a lot of questions have been raised about what happens from here. Please know that a transcript of this meeting will be read by many people, not only in the Family and Social Services Administration but throughout state government.
I'm glad we had several people here from FSSA because I think it's even more effective when you can hear the stories first hand. I know a lot of stories have really touched my heart and from going around the state has made me realize that we as a state have a long way to go. I know that it would be nice if we could flip a switch tomorrow and have all of the programs taken care of but as you know we won't be able to do that.
But please know that we are working toward the goal of eliminating waiting list, eliminating barriers and allowing people to be successful in their community. We will keep coming back to Lake County and we expect that you'll keep pushing us and we hope pushing us to continue to do better.
Please don't hesitate to contact me through the address that I gave you earlier through Linda Church, and continue to share your thoughts. Make sure that you signed up so that Everybody Counts has you on their mailing list and the State of Indiana on their list as well.
Thank you very much.
(Hearing closed at 3:30 p.m. on August 29, 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 1:30 p.m. on the 29th 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 14th day of September, 2001.
_________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2009
