Transcript of Public Hearing - East Chicago
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
HEALTHY EAST CHICAGO
100 WEST CHICAGO AVENUE
EAST CHICAGO, 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:
Emas Bennett
Svetlana Dordiesky
Written comments attached as Exhibit 1
Rita --
Barbara Osmon
Jim Hendershott
Gabriel Magana
Larry Armogost
Maria Garcia
Teresa Torres
Raymond Christie
Mary Patterson
Luis Roman
Laurene Jackson
Barbara Love
Patricia Ramsey
Mr. Parker
Patricia Lawson
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: Good morning. 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. It doesn't get any shorter in Spanish. Thank you very much for coming here today.
I had the opportunity in July to attend a meeting or a conference with Independent Living Centers in Kansas City, Missouri, and it was really interesting because for a long time we've talked about least restrictive, least restrictive, least restrictive, and suddenly somebody at that conference brought up that it's not about least restrictive, it's about most integrated. I think it's the same goal, but I think most integrated just sounds a lot more positive because we're taking away the restrictions, allowing people to live in the most integrated setting possible. I think that's kind of an interesting sideline, kind of a different way to look at things.
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.
(Spanish interpretation.)
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.
(Spanish interpretation.)
And this actually is the final day of my around-the-state tour and I'm excited to be here, not just because it's the final day, but also because of the really neat things we have going on here. We have sign language interpreters, and we have a Spanish interpreter. I think this is a really exciting place to be. We've learned some really good things and I'm sure that will carry through today, and I think you will see those things in the next edition of the plan.
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.
What we're looking for are recommendations for programs to fill in the gaps. And the other thing that we know is that life up here is much different than it is in Indianapolis, or Evansville, or even South Bend, so we want to know what specific things are working in your community and what should be strengthened or what specific needs does your community have. This community integration plan will only be successful if it's implemented at the local level.
(Spanish interpretation.)
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.
I almost forgot there are some rules. The first rule is you need to come up here, if possible. The second rule is we would like you to say your name and spell it if it's a difficult spelling before you begin speaking. Those are the rules.
(Spanish interpretation.)
I think that's all I have to say, so we can get started. Would you like to speak?
MR. BENNETT: Yes.
HEARING OFFICER BECKER: Come on up.
EMAS BENNETT
My name is Emas Bennett, E-m-a-s.
Ms. Becker, I respectfully have to disagree with you in regards to the wording. You said the most integrated setting as opposed to using the least restrictive environment because it sounds good. Well, it's not about words.
Basically, we're really not trying to soften anything up. Those are two different things. The bottom line is the most integrated setting, yeah. However, if they're still not receiving the most quality type services then what good is it going to do. And actually to support the most -- the least restrictive environment that means that you give a person an opportunity, first of all an informed choice to go in the community and to receive those quality services that will allow them to live their lives to the fullest of those choices.
And so it is not just a matter of trying to fluff it up to make it sound nice for those providers. We have to be aware that we're talking about people's lives, and we're not really trying to soften the blow. We're really trying to let them know what reality is and what the law says and what the American with Disabilities Act says, the least restrictive environment.
Thanks.
(Spanish interpretation.)
HEARING OFFICER BECKER: Thank you.
Come on up.
SVETLANA DORDIESKI
My name is Svetlana Dordieski, S-v-e-t-l-a-n-a D-o-r-d-i-e-s-k-i.
I am here, I have daughter, disabled young woman. Her name is Mary Dordieski. She was born with spina bifida. I cared for her all my life. I stay with her at home. She's 22. She's had so many surgeries, maybe 50 surgeries. I took her to the Children's Hospital, Memorial Hospital. My English is not good so I call my friend Rita so she can read it for me.
Thank you very much.
RITA
Hi, my name is Rita -- and I'm also a parent of a young disabled young man. My English is not any better than her's but I'll try.
Svetlana would like to address this to State of Indiana and she hopes to get a point across, so here's the letter:
"To Whom It May Concern:
I'm writing you because I do not know who else to look to for help. My daughter, Mary, was born with spina bifida and is subsequently mentally retarded and physically impaired. She is now 21 years old and I have been her sole caregiver for all of these years.
Age 18 is a time when most children separate from their parents. They become independent, but Mary will never be able to do this. This means that I will continue to be solely responsible for her for the rest of my life.
Although I love Mary and enjoy being her parent, the strain of watching over Mary 24 hours a day sometimes become burdensome.
I am unable to seek employment outside of the home, and this is the reason I am writing. Isn't there any program available to reimburse a parent of a dependent adult child for being the caregiver. Being Mary's caregiver is my job and I know there are funds available to pay parents like me.
I have attempted to sign Mary and myself up for all of the services and programs that we qualify for but there just aren't sufficient hours. And for that service in my home, that is the reason why I cannot get a job outside of my house. My only choice is to work a few hours for Value City just to bring a little money into my home.
Mary has undergone numerous surgeries and now has a shunt in her head and because of this she requires special care. I'm not willing to put her in an institution, so my last hope is you.
Please connect me with a program or with services that will help me either to find valuable employment outside my house or financially assist me so that I may continue to keep care of my daughter in my home.
Thank you very much."
(Spanish interpretation.)
HEARING OFFICER BECKER: Come on up.
BARBARA OSMON
My name is Barbara Osmon, O-s-m-o-n.
And Svetlana may think she has trouble with English, but as another parent, ma'am, you said it. I can relate to everything you're saying, Svetlana.
Like I said my name is Barbara Osmon. My husband and I are parents of a 34-year-old young man with autism. My husband isn't here today because our son's ill. When our son's ill one of us has to be there.
For over 30 years I've been an advocate for people with disabilities and not just autism. I was a founding member of IMPACT. I've sat on the board of directors of Opportunity Enterprises. I've worked for Everybody Counts as a family service coordinator. I was the coordinator for Porter County First Steps.
For all these years we've kept our son at home and it was our choice. We enjoyed having him there. I've been involved in the system. I thought I knew the system. I thought the system would be there when I needed it. It's not. It's not there for us parents who are getting older every day and our children are getting older every day.
We have no other family. I have no brothers or sisters. My husband has one sister who lives in Florida and we have an 84-year-old grandmother that we also help take care of.
As you can see we provide all of the care for our son. We deeply love our son. We've enjoyed the progress he's made over all the years.
There have been many trying times. People with autism, especially adolescents often go through severe behavioral problems. My son was no exception.
I went through three major surgeries, two for cancer. He's here. I'm here. We're doing okay.
We are not wealthy people. We did inherit some money from our parents. Our plan was to build a house for our son to live in and to also be able to bring one or two other people with disabilities into a home. About four or five years ago I began discussing this with different agencies and put my son on the waiting list for the autism waiver. That was three years ago. I checked last November my son's number was 691 and I was told not to call back because there wouldn't be any movement in the near future.
I had also placed my son on the ICF/MR waiting list for waiver. I got very excited. My husband called and said Bill's number is 219, but they said that's another three to four years. You can't imagine the disappointment and the shock.
Now the bright side they told me was that if my husband and I both died our son will get services immediately. Well, now what a great option for my son to lose both of his parents and immediately be removed from the only home he has ever known. This would be a horrible situation for any one person without disabilities, little lone a person with autism.
Now, I've picked myself back up and I said what can I do? I heard about the Olmstead Act from Teresa. I had written Katie Humphries who is now gone, and Peter Sybinsky who is now gone, and Alex and Bill who are now gone. I finally contacted Governor O'Bannon and I contacted Senator Lugar, and you know what, they wanted to know about it. They wanted to know what my concerns were with the waiver.
I said from my understanding of the Olmstead Act in that there is a statement that said waiting lists should move at a reasonable rate. I don't find six to nine years a reasonable rate. I want to see this defined. I want reasonable rate spelled out for us in years.
What I'm asking for today is not just for the Osmons, but for Svetlana and every other parent who has children who are getting older every day, when we are told to sit and wait. We don't have years to sit and wait. Just like parents of non-disabled children we want the peace of mind of seeing our children settled in their own homes and leading as happy and productive life as possible.
Now four months ago I said I'm tired of planning the plan. I'm back now and we're still planning the plan.
One question I have, I'm real interested, how do I get on somebody's commission and task force that will be deciding what the future is going to be for our people with disabilities?
Thank you.
(Spanish interpretation.)
HEARING OFFICER BECKER: Come on up.
JIM HENDERSHOTT
My name is Jim Hendershott, H-e-n-d-e-r-s-h-o-t-t.
I'm coming up here and I'm going to talk for my brother, Tom. He's 46 years old. He's deaf and he has other medical problems. And I'm going to speak for him.
It may sound minor to some but he can't get medical coverage because they say he makes too much money. He only gets $1,000 a month and it's social security. But you try and live on a $1,000 a month.
We tried to get medical insurance and they say he's on social security and right away they say, oh, no, it would cost him so much money it's ridiculous. It's a dog gone shame you can't get anything for him, nothing. And I don't know why -- he can't get Medicaid because he makes too much money. He's in limbo.
He can't get any kind of medical -- any kind of help in the State of Indiana. The state is so dog-gone cheap he can't get nothing. There's no help for a person from the state.
So when this came along, I said this is the only kind of help for somebody like Jim. I come to this meeting because of my brother and I hope that he can get some medical help.
That's all.
(Spanish interpretation.)
HEARING OFFICER BECKER: Who's next?
(Positive response.)
HEARING OFFICER BECKER: Come on up.
VOICE
I'm here on behalf of my son. He's a veteran. He had a honorable discharge. I have to wash his clothes. I have to pay his rent. Pay his telephone bill. I do this. I have five children and eight grandchildren and three great grandchildren. I'm running from Hammond to -- and you know how much gas costs. He doesn't get that much every month. I have to run myself for my grandchildren and for him. He doesn't even get $1,000 a month. He gets $500 a month from social security and he gets $70 from SSI and I get his groceries plus take care of my grandchildren and my great grandchildren and it's very hard.
My husband left after 30 years of marriage. I'm trying to keep my home up. I took care of him for eight years by myself not knowing that I could get help from the government on my own.
I'm telling everybody I come in contact with about being disabled because I've been there myself.
Thank you all for listening to me, and I thank God.
(Spanish interpretation.)
GABRIEL MAGANA
19 Hello, my name is Gabriel Magana, M-a-g-a-n-a.
The reason I'm here today is because I'm an individual and I have a disability. I have polio and in the last four years my polio has gotten worse. And because of this now I have polio in my right leg and now my left leg is being affected, so I can't drive. I have to ask my mother to drive me to places.
I applied for SSI. I was denied. I'm living off of $300. Out of that $300 I pay $200 for rent and the rest of it is for things that I need. The reason I've been denied SSI is because they say I don't have a serious enough disability in order for me to get SSI.
Now I've applied for Section 8 Housing and I'm on a waiting list, that's a five year waiting list. So what is a person to do? I mean we go around trying to get different agencies to help us to be able to survive and there's monies out there and we're not able to get them, and I don't think that's fair. Because we're not asking for hand-outs.
I mean I've worked all my life until the last two years and it seems like we're being punished for having a disability and having a child with a disability because I also have a son with a disability. He's got ADHD. What's going to happen when I'm no longer able to take care of myself? Who's going to take care of my son and my two small girls? We need some help.
Okay.
(Spanish interpretation.)
HEARING OFFICER BECKER: Come on up.
LARRY ARMOGOST
Larry Armogost, A-r-m-o-g-o-s-t.
We met in a different room in East Chicago a while ago and I think there was probably as many people at that meeting as there are here. And the gentleman we talked to from FSSA at that time was Peter Sybinsky.
Now Peter Sybinsky -- oh, boy, Peter Sybinsky roped me in to this deal, okay. He said, Larry, join me and we'll have a paradigm shift in Indiana. We will actually effect change. And right before Peter rolled off into the sunset and left Indiana, he sent me an e-mail, and it said, you know, Larry, it's not about people, it's about the system. And if people -- if one person has problems we have to overlook that for the greater good of the system.
Folks, right here all of us vote and we need to do that. We need to get out and vote. If the people in Indianapolis are not doing the job, then we need to go get some new people in there.
One of the things that was brought up in the meeting that we had here in East Chicago a while ago was our problem with the single point of entry. I took that message to Indianapolis at a meeting with Peter Sybinsky and Geneva Shedd and some people from the triple A's and they openly admitted a major problem with the triple A's in Northwest Indiana. And they said, so let's not talk about that. Okay. Let's not talk about you folks, you don't matter. That's your problem. Everywhere else the triple A's do wonderful jobs.
I can't speak to those places. I live up here. I'm the one being affected up here by the inadequate service provided by the triple A's up here. The horror stories about the length of time on the waiting list blows me away.
I want to tell you something, a year ago when we initially started after the triple A's and getting people to call them and ask to be put on the waiting list, they were a lot longer. They actually were worse.
But the Olmstead decision says the waiting list has got to move. It has to have a reasonable pace. Well, ours doesn't seem to have a pace as Barb attested to. Six, seven years is not reasonable.
Now, maybe people have other agendas, and that's okay, all right, this is America and everybody is allowed to have their agenda, but what we need to do is we need to make our agenda the priority. And our agenda needs to be we need more than a single point of entry.
We need to do more than just go to the triple A's and they say, well, we don't know but we'll send your case file over to BDS, people you don't even know about got hold of your information. All right. People you don't know have a hold of your personal information because they spread it around. Yeah, we have a record of everybody that's on the A&D waiver. We have a record of everybody on the autism waiver.
But who actually has the money? Well, we have the money, but if you get a hold of triple A's they say, well, that's all down at the state.
So what we need is, we need to have the people, those of us in this room, our friends and our families we need to make a voice in Indianapolis. We need to be heard. Now, Peter assured me that copies of the plan were sent to everybody, but everybody I talked to from East Chicago they didn't get a copy of the plan. So if it was just a gross oversight, I find that reprehensible. If it was on purpose then I find that criminal. So we didn't get the plan, so we can't study the plan. So when we come to this meeting, how are we supposed to give input if we don't know.
We have some wonderful people that are working with us. Mr. Garcia has been marvelous working with us to effect change and he's a good voice. He cannot be the voice of the advocate, that's my job. That's your job. You need to keep on getting out there and you need to keep on getting your feet dirty and you need to keep on talking until you can't talk no more about getting the services that you need, the services that the Olmstead decision says are yours. Don't let them tell you they're not.
And the next time you get a hold of a copy of the plan and none of the input that you worked so hard to provide is in it, don't just say oh, well, that's the way it is up here in Northwest Indiana, let your voice be heard down state.
Ms. Becker is going to give you an email address. She's going to give you a phone number. She's going to give you a physical address. Let them know. Don't just write one letter, write 100 letters, and then don't just write 100 letters, write 500 letters --
VOICE: Take it to Washington.
MR. ARMOGOST: That's right. Write 1,000 letters. Have friends do a thousand letters as well. If nothing else we'll kill enough trees that they've got to pay attention to us. That's what's got to be done here, guys.
1 All right. We're all in this together, then let's be together.
Thank you.
(Spanish interpretation.)
RITA
Let me repeat my name for the record, Rita -- and I have a son who's 23 years old and he's severely handicapped. He's autistic. He's mentally retarded, non-verbal. He was living alone up until July of last year.
I faxed papers to the governor for three months every single day, to every senator and no response. When I finally called the secretary of Mr. O'Bannon I told them if I don't hear from him I will take my son and I will drop him on the stairs of his mansion, that's when I got response.
If you have to go that far to get anything done, then go that far. Go the extra mile because there is money out there. There is money from the federal government for disabled people. Don't let nobody tell you there's no funding available, that's a bunch of bull. There's plenty of money up there.
My son is now in a place to where he's covered by a program called the I-Club. I don't know if any of you are familiar with I-Club? The I-Club allocates $75 a month for NIPSCO, water -- hello, NIPSCO -- $75 don't even turn my bathroom lights on anymore. They're giving him $300 for rent. Although he's sharing expenses with another young man, that's not enough money.
My son is a person who likes to be out every day, $10 don't even buy gas to bring my son out. So who do I go to for this?
After fighting for 10 years back and forth with the State of Indiana I'm a little tired of it, but I'm not going to stop fighting because I'm tired. We don't have a choice, if we don't do it, believe me, honey, nobody is going to.
I plan to start faxing again to every damn one of them in the State of Indiana until I get a response and a raise.
Thank you.
(Spanish interpretation.)
HEARING OFFICER BECKER: Yes.
MARIA GARCIA
My name is Maria Garcia. I don't speak very good English, but I'm going to say this in Spanish and he will translate.
MR. TORRES: I'm going to translate whatever she wants to say.
MS. GARCIA: (Spanish testimony.)
MR. TORRES: She said I'm an old lady. I have two heart attacks. She is almost incapacitated. And I have to take care of my husband that has Parkinson's disease. And I have to take care of everything for him, bathe him, and provide food and all that.
I'm trying to get help also from the state for an institution where to put him to provide for my husband. And she doesn't know where to go.
The only help she's receiving there are two visiting nurses that come once in a while and provide some care for the husband. She says I have to spend $583 in medicine. How am I going to get the money? Where I am going to get help? Please help me? Please direct me where I can go in order to help my poor husband.
MS. GARCIA: Like right now I had to leave him by himself so I can come over here.
Thank you very much.
HEARING OFFICER BECKER: Yes.
TERESA TORRES
My name is Teresa Torres, T-e-r-e-s-a T-o-r-r-e-s.
Like many of you for more than 20 years I've attended meetings like this, some here in the county, not very often though, because they don't usually come up here. So first I think I'd like to thank Alison and FSSA for recognizing Lake County in this process in the last year or so.
But many of us have been attending these meetings in Indianapolis and up here for a long time, and we get all excited because there's a new person and they seem like they really mean what they're saying and sometimes they do. But the reality is we keep talking about the state or Indianapolis like it's an entity. It's not. It's made up of people.
It's just like you contacted individuals and finally got the governor's attention. It truly takes -- when you're working with someone, you have someone's attention, work that, because they're going to leave real quick and you need to know who else they're working with. Maybe you won't. But in the last six years there have been so many directors that we can't keep track anymore.
What we're particularly concerned about here in Lake County is, as has been said earlier and Alison acknowledged the fact that it's different in Lake County, largely it's different because we're treated differently in Lake County, and I'm glad to see that that's changing.
However, I think what needs to happen for there truly to be a paradigm shift is that we need to stop as a whole thinking about coming up with new acronyms, new programs, making new pie charts with different colors in the pie charts and different power point presentations, and we need to start listening to the people, as you're doing now, but as the lady said you're one person, they have to listen. They being the people that are making all these decisions.
You talked about a $50,000 grant that Indiana got to start a governor's commission. Every state in the country got that grant. Who decided what we were going to do with it in Indiana? That was supposed to be a joint decision made by folks like you. So the whole system, the whole, by which this was going to be addressed was determined without that very important input.
And we have the opportunity now and we do recognize, Ms. Becker, that you and some other individuals are very sincere. We are concerned about those others that may not be. That have a status quo to protect. If we talk about a paradigm shift and all we're talking about is putting more money into the same program or maybe calling it a different name, there won't be any changes, and that one person every three minutes in this country that dies unnecessarily in a nursing home will continue.
People don't know what services are available to them because unless you -- Barb Osmon spoke earlier, she's been in the system for years -- unless you know the password and unless you know the color code to put in the password and unless you know the caseworker and she doesn't leave and move or get mad at you, you don't get the information.
Now, if you're among those of us who are in the front line and are in the nursing homes, the people who can't get here today, that FSSA keeps saying they want to talk to but I've not seen anybody drop by any of the nursing homes to visit with them, and if that's who you want to talk to, that's what has to happen. Because you see even though we approached those centers and said, why don't you let them come, those handful of people who have the nerve to say yes, have been retaliated against. They had to file complaints with HCFA.
We had a young man sitting in our office who was retaliated against and the Ombudsman said, now, if you file this complaint we can't guarantee that you won't get beaten tonight. That is the reality that people are dealing with. So those of us who hear that and then come to these meetings in Indianapolis and hear about plans and programs and acronyms and pie charts tend to get a little emotional, and that's going to keep happening. And all of us need to be emotional. This is about people's lives. This is about your life. People you care about. People that have not yet been born.
The Olmstead decision by the supreme court simply validated the American with Disabilities Act. Right now we are talking about residential placement, adequate community support, and people knowing what those community supports are, and all of that good stuff, but what we're talking about is the American with Disabilities Act. It's validity, it's very rightness was confirmed by the supreme court.
So as Indiana moves forward with these plans, projects and programs -- one thing we would strongly encourage the state to do is start getting all those agencies out there and city governments to comply with the ADA.
If the transportation system worked, people wouldn't have to be trucking their family members all over the place. If the buildings were accessible, people wouldn't have to worry so much about getting somebody to come out to them. So what we need to do is stop, as a state, stand still, and take a look at those piles of reports and assessments and evaluations that have been conducted and paid for with tax dollars to determine where we're out of compliance.
The last thing. The Indiana ADA steering committee and the governor's planning council, a whole lot of money gets spent saying well, Indiana is about a C minus, but, hey, it's only been eleven years.
All the legislative receptions, the parties don't help the people. So all we're saying is as you develop these programs and as you look to how things need to change, we don't need to develop new community supports. We need to make the community work. And the best way to do that is follow the law and make the state agencies and all of your sub-recipients and your grantees, make them comply with the ADA. You won't have to develop half as many new programs and make as many pie charts.
Thank you.
(Spanish interpretation.)
HEARING OFFICER BECKER: Next.
RAYMOND CHRISTIE
My name is Raymond Christie. I happened to be passing by in the hall and they asked me to come in and speak. I was talking to her because I work as a pre-admission screen case manager and what I'm finding out as far as the availability is concerned, we're talking about money right now, that the government needs to help this act out and to have monies put aside so people with disabilities can have the support that they need.
I review a lot of the charts and what I found out is that a lot of the medication that these nursing facilities are having for these patients inside, these clients inside, are not actually being used. These patients that are coming into the facilities are being charted with medication when they first come in and these medications are not being taken off the charts. So this is a case where the government is paying for medication that is not actually being used anymore by these clients.
So these are things that the government might need to look at very very closely. You're paying over $10,000 a month per client inside the nursing facility and that's very important to look at.
In fact I was let go because I turned that over to my supervisor.
(Spanish interpretation.)
HEARING OFFICER BECKER: I noted that some people are starting to leave so I want to make sure and hand out the address, and if you could help me pass these out and then we'll put some on the table at the rear of the room, too.
You're next, Luis.
MR. ROMAN: You can go ahead.
MARY PATTERSON
Good morning. My name is Mary Patterson. I'm on the NAMI Indiana Board and I have a nephew who is a schizophrenic and I came to give my opinion.
We've looked at the plan for the Olmstead implementation. We want to commend you for developing a plan. And it's important that we have one. I understand that this is the first draft of the plan and we will be looking for the final product with great expectations.
My recommendations are to have a time line for implementation and a budget recommendation and an independent oversight commission to assure completion of the plan.
Included should be plans for assuring that the mentally ill are treated rather than jailed for their illness. The homeless and other at-risk mentally ill people frequently end up in our penal systems. This not only doesn't treat them, but the individuals are costing much more or are being inhumanely treated in a penal institution that would cost more to humanely treat them in a facility for the mentally ill. It costs the state money to do it this way. I want you to notice that because it would be cheaper to have our mental health centers and various other facilities take care of them.
I note that the assertive community treatment teams are proposing a plan. I think this is good. I don't see a plan however to phase these in to the whole state after determining their success.
Finally, a good plan has a time line, I think I said this before but it bears saying again, and responsible oversight teams and a budget. In order for the plan to be more than just window dressing it must have all of these things.
Thank you very much.
(Spanish interpretation.)
HEARING OFFICER BECKER: Thank you.
Now, Luis.
LUIS ROMAN
My name is Luis Roman from East Chicago. Two comments that I have. The triple A was mentioned, currently they are the single point of entry, meaning that if you need to sign up for the long waiting list for the Medicaid Waiver, you need to go through them. They have people on staff who won't even take an application because they'll tell you that the waiting list is closed and therefore you won't even have a chance to apply for any of the services they offer.
The thing is why should they be the single point if there's other agencies, such as the Centers for Independent Living, who are just as qualified to assist people with disabilities applying for those services. So that definitely needs to change.
It was mentioned the paradigm shift, well that's where the shift has to take place, open it up, allow us to have more options, and if LCOC is the single point they are controlling our information or the knowledge that we can acquire so they limit our basis.
The second thing is for those people who are not able to read, we need access to that information, whether it be on tape or on disk. It's fine you have it for people who read English, fine you have it for people who read Spanish, however we need it available in all formats. So we need to be able to review it to give knowledgeable input.
Thank you.
(Spanish interpretation.)
HEARING OFFICER BECKER: Next.
LAURENE JACKSON
My name is Laurene Jackson. I, too, live in East Chicago.
I've been sitting back listening to the questions, the comments, and the tension in this room is deep because there's a lot of emotion.
One person said, and I could not see who she was because my head was to the back of her, she said, take it to Washington.
For those of you who would like to know and for those of you who don't know, many in this room have gone to Washington numerous times. We sign under National Adapt. We have a First National Adapt in Northwest Indiana and I am a member and so are some of the people in this room. National Adapt is a grassroots not-for-profit organization that has gone out there, fought for the ADA, fought for the issues of Olmstead.
One of the other things that I'd like to bring to your attention there are grants, that if you cannot afford to take yourself that you can file through your governor to get those grants through their planning council that will pay for airfare, your hotel, and some other things that you may need. There are monies out there to do that.
When we went to Washington several times it was a small group of us that went but we were represented. There was 12 or 13 of us that went out there. If we could bring 12 or 13 of us for each one of us that goes, we could bring a million people. Now you guys saw the million man march, why can't we do it?
You say take your issues to Washington, we've been to Washington. We've had dogs set on us. We've had water hoses set on us. We've been hit in the face with dirt by street sweepers. We've been out there. We did that. We need some more of you guys to take all of your frustration and your anger to come to Washington with us. Get out there and get your feet wet. Sit in the rain and say what you've got to say and watch your governors come -- and sit in a meeting that says you've got all these rights as a citizen in the United States and we're here to represent you, but where have you been?
You say take it to Washington, take it with us. Don't let a handful of us go out there and get beat up and broke down and chairs broken on us in jail. Yes, we've gone to jail. And yes, we still come out here every day.
Someone said we heard these same issues last year, you're going to hear them next year. You going to hear them after that until it stops. But for some of you and not all of you, maybe you don't know, don't you understand that is the system, that is their way of brainwashing you.
We have segregated ourselves from our populations as people. We've got power. We put them in there. Let's take it back. You vote every year, vote them out.
We need cross programming. We don't have that. Some of us have cerebral palsy with complications and, yes, we are getting older and our condition progresses. Our parents are getting older and, quite frankly, I wouldn't want to look at my parents all my life. I would want some of that independence given back to me. But yet you say bring the money into the community, where are you to speak for it? So until you actually go to Washington, until you meet some of the various disabled people, even if you go to represent your disabled child, then pull back a little bit and look at where we've been in order to know where we're going, because that's where's at.
That's all I have to say.
(Spanish interpretation.)
HEARING OFFICER BECKER: Next.
BARBARA LOVE
My name is Barbara Love and I'm with the Lake County Association of Mentally Retarded. I'm a job developer. I work with the developmentally disabled five days a week, seven days a week. I've been doing it for over two and a half years.
One of my greatest concerns and something I would like some attention paid to is transportation. It either costs way too much. It's not going to take someone in a wheelchair. It's never on time. It runs between certain hours.
My job does not pin me down to certain times but most of my clients work 10:00 to 2:00 because that's all the transportation company can provide. They earn $5.25 an hour. They work six to twenty hours a week and they pay as much as $26 a day for transportation alone. That doesn't leave them anything left over.
They consistently ask family members who are elderly and have their own situations and may be working to drive them. That doesn't come through. And honestly I've listened to everybody here and I know that you can make a difference and sometimes it only takes one person.
Last year I happened to see that the City of Hammond was starting a transportation to work voucher for residents. I contacted them and because of effort, consistent effort, and I am telling you every single day I contacted the same people and explained our situation and what I needed for me to help my clients get to jobs, just a job, not even go out to a party or anywhere, and because of that right now there are six people, and they're not all clients of Lake County Association either, but there are six people who ride free right now and that will continue until the end of the year, and that is because of efforts and going to Indianapolis and constantly making a loud voice.
Try not to deal with the whole thing at one time. Focus on something. Make a little bit of a change there. Move on to the next area, make a little bit of change there.
But transportation is something that is very near and dear to my heart, because without it I can't get my clients back and forth to work because I personally can't drive them.
So I would like to see some money going into areas to either fund transportation so they can get more vehicles and expand their hours of service so my clients are not locked in to all working from 10:00 a.m to 2:00 p.m. and then they've got to come back to the workshop or go home and that's the end of their day.
Thank you.
HEARING OFFICER BECKER: Next.
PATRICIA RAMSEY
Hi, I'm Patricia Ramsey. I'm from Lake County Association for the Retarded.
I was just basically kind of looking through this package of the action steps, goals and time lines related to policy direction No. 5. And I was looking at No. 3 dealing with the increase of your provider rate. These increases are targeted specifically for direct care staff to enhance the quality of care and the responsibility for the time line would be implemented beginning October 1, 2001.
I guess, basically, my question was whether that means that the staff, those working for the mentally retarded or handicapped, does this mean that they will be receiving increase in their pay? Basically, people that work with the mentally challenged or whatever, you can work at Burger King and make more money, and when you leave from work, you go home. You don't have to deal with nothing else. You don't have to worry about somebody calling you to see whether you can come back to work. You don't have to face that.
I don't have anyone mentally retarded or handicapped in my immediate family. My nephew was, but he died. But the mere fact that I'm on the other end where I deal with staffing, where people are having to take care of, and sometimes be their family because the immediate family has gotten older and they can't come, just like we are all getting older. So staffing becomes that person's family.
That's basically all I wanted to say. So again, I hope that there will be an increase in October of 2001.
(Spanish interpretation.)
HEARING OFFICER BECKER: I would like to break the rule just a little bit and tell you that, yes, there will be a rate increase starting on October 1st for Waiver and CHOICE providers. It will be a 9 percent increase targeted to direct care staff and providers will be required to pass on at least 80 percent of that increase in direct wages to their workers.
Next.
MR. PARKER
I'm Mr. Parker. I thought this was for senior citizens. I want to hear if the senior citizens is going to get enough money from the nursing home so that the little social security they get the nursing home don't have to take that from you when you don't have nowhere to live.
I'm looking for someone who know more about senior citizens. I want to hear how I can take care of my wife, she's in a nursing home, without them taking her social security check. They take half of her check just for her to stay in a nursing home. And all this money coming here, except I never heard no one say nothing about a nursing home. I want to talk to someone who know about nursing home.
That's all. Thank you.
(Spanish interpretation.)
HEARING OFFICER BECKER: Who's next?
(Spanish testimony.)
MR. TORRES: This lady is 82 years old. She has a niece that seven years ago was in a terrible accident and she's totally paralyzed. And the problem is that she is far away from where she lives, and the husband leaves at 6:00 in the morning and comes back from work at 2:00 p.m. and during that time there is no one there to take care of this lady at all. Only once in a while a good neighbor will go over and provide some help, clothes and bath, and provide the food. She has to be fed.
I would like to find is there any program or someone to provide some kind of therapy to this lady or someone to even go over there to talk to her during those hours she's alone.
HEARING OFFICER BECKER: Anyone else?
PATRICIA LAWSON
Good morning. My name is Patricia Lawson, L-a-w-s-o-n.
And I work for an agency here in the local area and one of my problems is I speak very little Spanish and I have a client that speaks very little English, and I'm very new to this organization. I don't know if I'm asking the right question, but I have a problem delivering quality service to my client because I can't talk to her. My high school Spanish has about run out. I need help. I need assistance. Where do I go to get a translator? I've called over here to East Chicago where there is a larger population of Hispanic persons but I haven't found the right avenue to get assistance.
This client has been in the hospital, state hospital, for many many years and she's now -- the state is asking the agencies to receive more and more clients from the facility to reduce the bed count. We're faced with persons who have chronic or acute mental illnesses that we can't really help because we can't relate to them. We can't discuss what their particular problems are. We're not trained that way. I hope I'm in the right place to find out where I can go
(Spanish interpretation.)
HEARING OFFICER BECKER: Anyone else?
(Spanish interpretation.)
(No response.)
Well, on behalf of Secretary John Hamilton and Governor Frank O'Bannon, I'd like to thank you for being here today and giving us your comments.
It has been really interesting and I completely understand your frustrations especially with the significant numbers of staff turnover we seem to have. It is my hope to prove the skeptics wrong and to be around for a while, especially because my cat likes his house very much and wants to continue to live there, and I have nowhere else to go.
But I encourage you to continue to communicate with us, keep pushing us to do better, keep us informed of what's going on, the questions that you have and the concerns that you have.
The transcript that was taken today will be available on our website and so your comments will be world famous. You can tell all your friends in Japan to take a look a them. If you don't have access to the internet and would like a copy of the transcript, you can let us know. You can note that on the sign-in sheet.
But again, I wish I could give you more answers today. I can't. But please know what you have said will be looked at, not only by myself but by people throughout FSSA and the rest of state government.
And I certainly hope that if we do this again a year from now, which we will be back, but I hope a year from now the issues that you bring are significantly different than the ones we've heard today.
So thank you very much and I appreciate you coming.
(Hearing closed at 11:50 a.m., 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 9:30 a.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 10th day of September, 2001.
_________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2009
