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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

LEAGUE FOR THE BLIND AND DISABLED
5821 S. ANTHONY BOULEVARD
FORT WAYNE, INDIANA

AUGUST 24, 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:
Warren Sparrow
Kris Taylor
Scott Rutsey
Teresa Hatten
Lorita Utley
Connie Grocost
Todd Biller
Nancy Gimmer
Bill Prather
Jose'
Donald LaRue
Ron Carpenter
Sheri Caveda
Jane Novak
Richard Frick
Roxandra Clemons-McFarthing
John Guingrich
David Nelson
Cathy Duchovic
Paula Heiselman
Robert Gunzenhauser
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. As you can tell I'm really into service.

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.

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.

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 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 Fort Wayne is not the same as it is in Indianapolis, Evansville or even Richmond, 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 there are sheets out in the lobby with the address for where you can submit written comments. There is a mailing address. There's an email 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.

So we do have a list of people signed up that we will start with. That doesn't preclude anyone from testifying. Once we get through the list we'll take anyone else who is interested in speaking.

So we will start with Warren Sparrow.

WARREN SPARROW

Good morning. Thanks for the opportunity to speak briefly today. My name is Warren Sparrow, I'm the Executive Director of the Carriage House here in Fort Wayne. We're a psychiatric relocation program, private, non-profit.

First I think generally speaking, Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities is good in principle. The fact that we argue with policy directions that a spouse get consumer choice, informed choice, support of informal networks, quality assurance and professional training. These are good things and they're good directions to be heading. Further recommendations under policy directions talk about cultivating new and creative options for community based services and supports. That's wonderful.

What concerns me is, as history has proven time and again this State seems to have an aversion to relinquishing control of services. A departmental health system supports a network of contractors. These are the sanctioned mental health centers. Which in turn are small, a small but just as complex bureaucracy. State statute mandates such a broad range of services to qualify as a provider it's impossible for small, private, non-profits to access service-related dollars. If the state government were called Microsoft they would be in breach of anti-trust rules.

Just two days ago the director from fiscal services, who were then DMHA, was speaking in funding workshops in Indianapolis, and basically stated it was his strong opinion that services are best offered by one corporate entity rather than a variety of service providers. There may be some merit in that but those set the innovation creativity. Innovation within the existing system is basically impossible. Meanwhile small non-profits who have always been the true innovators in human service history are systematically denied access to direct fiscal support from the State.

I thought the intent of this plan -- in reality are we in for much of the same? Maybe. Case in point, action Step 12, Policy No. 5, stated an improved increase of $10 million over the next two years for mental health services. My trusty calculator told me that that amount split between the approximately 26 mental health centers across the state means about $140,000 per year, per center. That translates to about three or four new case managers, perhaps, probably working within the PACT model teams now being established. Neither the sum of money nor the current direction seems to be supporting the other policy statements promoting creative or intuitive ideas.

The Carriage House is a small, private, non-profit relocation program for people with mental illnesses. We have access to Medicaid rehab option dollars for services we provide. Our gatekeeper, Park Center, closely monitors our access. Without their willingness to allow us to be innovative we would have no state government support whatsoever. Without substantial financial support from local foundations and private donors our program serving over 120 people each month would not be in existence today.

There are approximately 12 clubhouse model programs in the State. We are the only free-standing, private, non-profit clubhouse in Indiana and the only one certified by the International Center for Clubhouse Development. We have achieved the highest level of certification, which is a quality control measure, because of our determination and flexibility, not characteristic of large bureaucracies.

People with mental illnesses deserve to have the best possible choices and services. Please stay true to this plan. If you want true innovation and creativity, this commission must review existing State statutes relevant to all divisions within FSSA that promote monopolies of service provision. These statutes must support innovation and open up the door to small private entities that will truly enhance and innovate this system of services within them.

Thank you.

HEARING OFFICER BECKER: Thank you.

Kris Taylor is next.

KRIS TAYLOR

Good morning. I'm a Hoosier with a disability. I have a bipolar disorder. I was diagnosed with my disorder in December of 1995, after living through 20 years with ups and downs without realizing that I had a mental illness.

I graduated from St. Francis College in May of 1994. I was diagnosed about a year and a half later. I went through the usual treatments of going into the hospital. I was in the hospital like eight times as an in-patient for two years, and when I wasn't an in-patient, I was in the out-patient program for all of three weeks of those two years. Towards the end of those two years somebody at the out-patient program suggested that I apply for a job at a place called the Carriage House. I went there to do so and I met Mr. Sparrow, who just spoke. He said the positions had already been filled but since I had explained that I had a bipolar disorder, maybe I should hang around for a little bit and see if I liked the place and see what goes on. I've been hanging around here for three years now, and I'm going to tell you a little about how that changed my life.

When I first went to the Carriage House I was totally lost. I didn't have a clue who I was any more. I'd taken so many different medications and had had electric shock therapy. I didn't have enough confidence to look anyone in the eye when I spoke to them. Truthfully, I had no will to live, and then all of a sudden the Carriage House appeared and immediately when I walked through the door the staff was friendly. At that time there were only a handful of members, but what ended up happening there was they made me feel needed.

I started to work on a newsletter, the very first newsletter that Carriage House had ever put out. Gradually I met new people and built new relationships, meaningful relationships with people that understood me, what I was going through.

Gradually the confidence that I had lost before I was diagnosed -- I would have a job for say five years, a really good paying job, they loved me when I was up because I could work like three people but they didn't like to put up with the depression end of my illness. So I would work my tail off for five or six years and then be fired from a good job. What happens is when they see it happen three or four times you lose your self confidence. That's not an unusual scenario for anyone with a mental illness to lose their confidence.

What the Carriage House actually does is help you build your confidence by giving you the opportunity of meaningful relationships and meaningful work to do. The program is a voluntary program. You can go there for ten minutes a week or for 40 hours a week, maybe 48 hours if you include the recreation time too. What works about it is, it puts the responsibility for your getting better into your own hands where it belongs. It gives you freedom of choice to take part in the program that you want to take part in. It works gradually, and before you know it, you wake up one day and you say, I know who I am and I know what I want to do. It works like magic.

One big huge problem that we face with the unemployment program is that most of the people have Social Security disability or SSI and they have Medicaid, and Medicare, probably most are eligible for food stamps and federal housing. What happens when we take a part-time job through the clubhouse or on our own, is we lose our food stamps, our spin-down goes through the roof, our rent goes up, and we end up working and clearing about $10 or $20 extra, so it's not a really good incentive.

I would like to make a very concrete suggestion to Governor O'Bannon and to the legislature that they consider anyone who attends a rehabilitation program with the intent of trying to get back to work, that they make a spin-down absolutely zero for at least one year to give people a chance to get on their feet without having to worry about losing a vital medication and services that they need from Medicaid.

A second recommendation would be to allow us to keep our food stamps, which are usually inadequate to begin with, but at least that would help a little bit to fill in the gaps. It's really disheartening to have hopes and dreams of working part-time and then working up to full-time and it's so difficult to maintain that part-time because you're in constant fear of, I'm going to lose this benefit, I'm not going to be able to get my medication, and I won't be able to stay healthy, what's going to happen? All that anxiety does not help one's work performance. So I think that if they would possibly increase the amount of food stamps for everyone to start with, and then not take those away.

I don't know if the State can do anything about the HUD housing to control that, the rent from going up? I think it's important that they realize that if you go back to work you should be able to try to save a little money, maybe buy some clothes, or a muffler for your car -- my muffler fell off on the way here, but I'll deal with that later.

The other thing that I think is right, and I'll touch on what Warren talked about with this clubhouse certification, I am so thankful to our local NAMI organization because the clubhouse would not exist if it weren't for their insight and their determination to make it happen. When they decided to bring Carriage House to Fort Wayne they wanted it to be the best clubhouse in the world and believe me it is on its way, if it's not there already.

The certification process is like a watchdog that's already in place and we are the only certified clubhouse in Indiana. What certification does is that it ensures that certain standards are followed and that persons with mental illness receive the best possible treatment that they can receive. To me it would make total sense for the state legislators and the Governor to look at better funding for the clubhouses that exist, and maybe put a stick on a carrot and say, you have two years to become certified and we'll partially fund you until then, or we'll fully fund you. But right now as things are, the clubhouses, besides ours, that are scattered throughout the state are not certified. So some were like dropping incentives and some were just like regular group therapy and that sort of thing, that's not what the clubhouse is. In my opinion the ICCD, International Center for Clubhouse Development, that certifies clubhouses is automatically a watch dog in place that would ensure that those services throughout the state -- without having to go through the expense of making sure of taking care of the quality assurance type of thing.

I want to thank Governor O'Bannon and the Indiana Family and Social Services Administration for laying the ground work for the Indiana Comprehensive Plan for Community Integration for Persons with Disabilities. I hope they have done so freely and because it is the right thing to do and not because it has been mandated by the federal government. I would also like to thank them for having the good sense to hold meetings like this one all across Indiana to get an input from those of us with disabilities who know firsthand what it is that we truly need.

Thank you for asking for the input from those who know which programs work and which programs don't work. Input from those who know which programs are valuable and which programs are a bureaucratic waste of money. I believe that truth really does set people free.

I hope that you are listening carefully to what we are saying to you today. We are speaking the truth about our disabilities and what we think you can do to ensure that the path is clear for us to seek life, liberty and the pursuit of happiness. We are asking you to recognize these truths and support us with integration into our communities. By doing so you make Indiana not only the home of the brave disabled but also the land of the disabled who are free.

Thank you very much.

HEARING OFFICER BECKER: Thank you.

Next on the list is Scott Rutsey.

SCOTT RUTSEY

Hi, my name is Scott Rutsey and I thank the committee for having this here in Fort Wayne.

There's a couple things I'd like to discuss. I have a couple of recommendations that I feel are strongly needed. I do support the clubhouse for one. I have known people there that it has absolutely changed their lives, and some have actually been able to go back to work because of the clubhouse. I don't think the state realizes how well the clubhouse really does work. It not only supports consumers, it finds employers that will support the consumers, which is extremely important.

Another thing I want to bring up is the importance of insurance. I know some people that are on social security disability that do not have any insurance that really helps them with their medications. I know of two people that are on Medicare and not Medicaid, I'm not familiar why the laws are like that. I do know that they have to fight to get their medications that they need.

I know one of my friends, he at one point was getting sample medications from an institution I won't name, but, unfortunately, that ran out. Well, he ended up making $700 on disability and he owed $300 for pills, so obviously that does not work. He was fortunately able to find medication through another way. However, there are others that cannot find that medication in another way, and that is extremely important that the consumers have some type, that are on disability, to get the medications that will help them get back to work, help them feel better, and help them feel a part of society.

The last recommendation, which is the most important to me, because I've worked nearly all my life with a mental illness. After I graduated from high school and then college, I was diagnosed with schizophrenia before then, however, not until after I started working in corporations did I discover a discrimination that went on. One of my first employers illegally asked on the application if I had a mental illness, which is absolutely illegal, and I'm sure it's still going on.

I believe the current disability law in Indiana is more in relation to the fireworks law we have, where there is no protection. I don't believe that there are any employers that actually take it seriously.

I was discriminated against at a job. I was going to file it with the EOC, but I talked to the Indiana Protection Advocacy Services and they told me not to bother because the EOC does not do anything. They will file the claim. They will research it, and then nothing will happen. If you expect the consumers to be able to work at a job and believe that employers don't discriminate against people with mental illness, which I can say goes on more likely than not, is ludicrous.

We have no support and the disability law is not being enforced. I went and applied at another job. That job on the pre-employment physical, which according to disability law, when it's pre-employment you are not allowed to ask anything about disabilities. They asked me if I was taking any medication. They asked me if I was hospitalized at any time. They asked me if I was ever diagnosed. These are all illegal questions.

Again nothing is being done about it. I did mark no on that application, because I did have every right to mark no because they had absolutely no right to ask me if I had a mental illness. It's extremely important, this is the final step that goes on with the consumers, not only people with mental illness but with any disability, that there be no discrimination. I believe like I said before, there is no enforcement of the ADA Act, I believe it was 1990, not here in Indiana.

One night I was laying in my bed, just recently, and I came over the feeling that I just got oppressed, and at that moment I understood what the founders of our country felt when they fought to live in a different country created by their own ideas and values, and that is that all people are created equal. Everyone in this country has a right, an absolute right, to further opportunity, to contribute to society and that includes employment, which is not being currently done. The laws are not enforced and there is discrimination going on.

I know of another person that was discriminated against, harassed, she was sexually harassed, she told them she had depression. She started coming to NAMI and ended up finally telling something to the employer about the harassment and telling him that she did have a mental illness. She was later moved to another department and within a couple months, fired. Of course we can sadly say that she did not win any court cases, nor did the EOC do anything to protect her rights to work and to be treated equally as everyone else in the country.

So I strongly urge this committee to not only support the ADA but act upon it. Not only for people with mental illness but for people with all disabilities. People in wheelchairs where it quite evident that they have a disability, to people with mental illness, who may not be as obvious.

I appreciate and strongly urge that our rights under the ADA be enforced.

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is Teresa Hatten.

TERESA HATTEN

My name is Teresa Hatten. I'm the president of NAMI here in Fort Wayne, which is the National Alliance for the Mentally Ill. I'm also the mother of a 28-year-old young woman who has bipolar disorder and the grandmother of two young children with bipolar disorder.

I moderate an on-line support group of families that consist of members throughout the United States who have children with bipolar disorder. So I have the unique  opportunity to learn about services available in other parts of the country.

I'm here to speak for the families of children with these invisible disabilities called aero biological brain disorders who are often overwhelmed by the high needs of their children. These families are exhausted. Many times they are too exhausted to advocate for their children and so I am here to advocate for them.

For these families blame is placed on them when others believe that no fault biological brain disorders are the result of poor parenting. So friends and families don't understand the situation and so many times supports are not available or at least limited. The community certainly does not understand and often not even the professionals caring for these children understand the demands that are placed upon the families of these children. For some employment is not even an option because child care for the children is not available.

These families need respite. For those families that I know of here in Fort Wayne and throughout Indiana they are told that respite is not available for children with brain disorders. I do know that respite is available for children with other disabilities, but at this point, at least, we can't find any that are available for children with neurobiological brain disorders.

Respite services is a blanket term describing a wide range of services that provide care for a child with a disability while primary caregivers engage in other activities. I have an example of another state that is able to meet those needs. In Texas the MHMR Centers must include respite in their core services in order to receive general revenue dollars. This can be either program based respite services, temporary residential placement outside  the usual living situation, or community based respite services, which brings respite providers in the usual living situation, provides a place for children to go to during the day, or offers other respite services.

Caregivers may feel guilty for needing respite, but such services can help them cope with their sometimes overwhelming responsibilities.

One example of a program in Texas that does work. It's called the Respite Reimbursement through Austin Travis County, Texas, MHMR Center. This is to provide aid to children residing in private homes. The program negotiates a quarterly amount of financial reimbursement. Services are provided inside or outside the home. The caregiver has the opportunity to select the provider. Respite services honors the special child/family bond and supports their visits that strengthen those relationships. Indiana could adopt this philosophy and respite could become a part of an entire wrap-around service that would keep stressed families intact.

The alternative is often acute hospitalization, long term residential care or in the worst case scenario this could mean incarceration, because in the United States the largest facility for those with mental illness is in the prison and juvenile justice system.

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is Lorita Utley.

LORITA UTLEY

My name is Lorita Utley. I'm in Fort Wayne because my sister is very ill. I'm originally from Evansville, Indiana. I've been in a nursing home since the early 80's and they are terrible. They lose your stuff. I had one box completely disappear from one of the nursing homes.

They do not -- I have problems with my checks, I have no checks. It takes them forever to transfer one check to another place. It took me six months to even have it appear on my book and I only get $50 a month, and right now I'm waiting for September to get a check in the mail. I get total disability.

I do have a lot of problems with my back and the nursing homes do not care. They just keep pushing and pushing until you're exhausted. I try to put things away, but I can't bend because of my disability, and they just don't care. They're supposed to provide privacy and I don't get any privacy where I live.

Transportation is terrible. You have to almost beg them for your medicine. I did not get my inhaler this morning. I begged and begged since 8:30 this morning to get it because I knew they were coming to get me. I have no inhaler with me at all. I asked them to please bring it, they would not. It's just really hard with my transportation. There is only two transportations here and half the time you don't know if you're going to get there on time. I had a doctor's appointment one morning. I was just in tears. I had had eye surgery and you have to be there on time, and I had a friend come by and get me so that I would make it on time. I was so thankful to him. I would like to have some transportation provided for the disabled because there isn't any in Fort Wayne.

In Evansville I would take a city bus. Sometimes they won't even let you out the door with transportation here, the city buses. My wallet was stolen when I was in Indianapolis and I've been trying to get to the bus station so I can get an I.D. made. I think it's like $2. If I had transportation maybe I could get an I.D. for myself. I had over $60 stolen one time trying to get a pair of boots for winter time. It's ridiculous. I've got a test coming up. I am terrified of going.

The air conditioning -- they don't care and I have asthma and with the air conditioning, it's like 60 degrees. I have severe headaches, I pass out. They only have a dining room for people that can stand the noise.

I was just 52 Monday, and I just hate what they're doing to us. I've been in a nursing home since the '80s and I'd like to have a home.

Thank you very much.

HEARING OFFICER BECKER: Thank you.

Next is Connie Grocost.

CONNIE GROCOST

Please excuse me, but I've been really touched by the things everyone else has said. I was diagnosed with bipolar about ten years ago. I've had trouble with getting a job because I was told by the Jobworks program that I was too educated for their job training. I've been told by my counselor that I wasn't ready.

Rehab told me a couple years ago that my case was closed. So I've attempted twice to get a job on my own. The first time I think I kind of made a poor choice because it was a factory job. I'd never worked in a factory before so that didn't work out very well.

Anyway, now I'm employed and I've been employed for three months. But it wasn't through any assistance from anyone else. I don't really have any encouragement.

I also have problems with my rent going up. Government housing is going up very steadily. So my son finally told me that I could come stay with him for awhile, otherwise I would be homeless. I was determined I was going to work no matter what.

I was disabled for over six years before Noble County finally said that maybe I was disabled enough to have Medicaid to buy my medication. It isn't that I haven't worked professional jobs -- I was a director. I've been a therapeutic foster parent. I cared for the elderly who needed assistance in their homes so they could stay there. I have two master's degrees. The master degree seems to cause me more problems than assistance, and if I didn't have any education at all --

I have a lot of concerns. One of my biggest fears is that I'll lose my job because I've spoken out today and they'll find out about my disability.

HEARING OFFICER BECKER: Thank you very much.

Next on the list is Todd Biller.

TODD BILLER

Hi, my name is Todd Biller, I'm from NAMI. We have a good representation today. I had this really cool speech written but as I was sitting here listening to some of the people talk it kind of reminded me of why I'm here.

My wife was diagnosed a few years ago with being manic depressive or bipolar. That answered a lot of questions that took ten years or there about, to be asked.

I married a very beautiful young lady, she wanted to be an interior decorator, she wanted to have a big family, nice house and things like that. She turned into someone who couldn't even take care of herself.

I'm not so concerned about the insurance because I do have a good job and I have insurance. My insurance wants me to go see the doctor. It costs $10. Her medication cost $7 per prescription, which is very reasonable for $1,000 a month worth of medication. Her therapist is $15.00. She has the best of everything. She has an excellent doctor that responds to her immediately. Basically she has everything she needs to get on with her life, but there's a small problem, she can't, she's not able to.

But the thing that is concerning me now as I sit here and listen to this is, what happens when I'm gone? What happens if I'm in an accident on the way home? What is she left with? Is she left with losing her two children? She can't hold a job. She's left with no medication because she can't afford $1,000 a month with no job. She has no doctor visits. She has no therapy. She has nothing. She loses her home.

Even in the situation when she was first diagnosed we tried to get some help with the electric bill, things like that. We had like $28,000 in credit card debt that she had ran  up. We were basically broke and on the verge of bankruptcy, and I was told I made too much money, so she didn't qualify for any services. So having a spouse that does well created a lot of other problems that a lot of people don't see.

That kind of ties into some of the stuff that I did write and a lot of it does come down to money. I can stand on soap boxes all day long, I'm very good at that. But money is a big issue. Every time somebody needs help it costs money. To talk to a doctor, it costs money. To see a counselor, to get your wheelchair fixed, it costs money. Anything you do costs money, and without a job it's physically impossible.

I think a lot of it also comes down to accountability. We have some good legislation coming down. We have a lot of different laws. We have this program now that's being worked on, but where is the accountability? Community Mental Health Centers are required or mandated by the state to provide specific services. Do they provide those services to the fullest extent? It costs money I know, so if there's anybody here today, Paul, or anybody like that they can back off because I'm not pointing any fingers, but it does cost money to provide these services, but they do need to be offered somehow. There's got to be some other way than just to not take care of the people.

While education I think is a very large tool, of course Family To Family, I think is an excellent education program, but I think everybody deserves the right to education. Families are kind of left to flounder out there by themselves. The family member does get service then there's nothing for the families themselves. The centers do not provide very good family counseling and unless somebody is good enough to tell them about NAMI then they don't get it. So the sooner education comes, the better off the people are. I have heard a million times, I wish we would have known this, because we would have done things very differently.

As far as legislation goes, we've come a long way. But what's next? How about unrestricted access to front-line meds, front-line therapy, front-line services. I think that people need those services to be able to go on with their life. Rehabilitative programs, such as the clubhouse, community centers, things like that should not be left to little non-profit organizations that have no budgets and try to foot the bill on their own. They need some assistance for that.

It's good to see all the people here. I know in Warsaw we didn't have very many people. So I'm glad to see that we were able to come to Fort Wayne again and have a good turnout.

I thank you all for listening to us.

HEARING OFFICER BECKER: Thank you.

Next is Nancy Gimmer.

NANCY GIMMMER

I really appreciate all of the personal stories that we are hearing. It takes a lot for you to share that with us, but that's what we need and that's what makes us better understand what the real problems are.

I approach it more from the programs.

I'm with the case management department in our agency. I found myself starting out positive because I hear all these stories, I hear all the problems. But I think we need to look back at what DDARS has done in the past 12 years in in-home services. Since the advent of the CHOICE program in 1989, then with the subsequent development of the various Medicaid waiver programs for in-home services, and then with the establishment of the single point of entry for all people needing long term care in their homes. And then with the development of an absolutely premier computer system for data entry in the field. Then electronics, fast transfer of the forms, paperwork, that brings the services to the clients quicker. That has been a real plus over these past 12 years. We're beginning to get into consumer directed care services for people. This has been a real need. Granted we had a long way to go when we started in 1989 and we have a long way yet to go. But we implore you to build on these wonderful gains that we have made. Let's all work together, feeling pride in what we've done, but urgency in what we have yet to do.

We have over 2,000 people on the in-home services program over the nine county area who are elderly or who have disabilities. We didn't have these 2,000 people receiving services 12 years ago. We have so many success stories. Let's do more about telling these success stories too in addition to the problems so that the public will know what we're doing, what their dollars are doing. We need their support in expanding the badly needed funding and the commitment to these programs.

Let us begin this new plan with some measure of pride for where we have come from and vigorously tackle the problems as we move forward. I would also like to see us set some higher goals and a greater vision as we establish this plan.

A few years ago I was in Toronto, Canada. I was standing on the sidewalk and was almost run down by a young man in a business suit, in a wheelchair. He was in a big hurry on his lunch hour. A little while later I was in the subway and another individual in a wheelchair came zooming into the subway car. The doorway was plenty wide, it was level, and perfectly accommodated wheelchairs. How refreshing it was to see this. Maybe our goal could be to create a society where we had to live in fear of being run over by a person in a wheelchair.

To point out some of the problems locally that we encounter, and I won't spend a lot of time on them. But to give you an example, I'm working on a problem right now that shouldn't exist. We have a disabled, elderly lady who has been receiving CHOICE services while she's been on the waiting list for the Medicaid waiver program. Now the Medicaid waiver program is available for her and we are required to move her from the CHOICE program to the Medicaid waiver program because that's utilizing more federal dollars, which is good. She's one of those lucky people who has had the same attendant for several years and she has a wonderful, trusting relationship with her. But we must ask in switching her from the one funding source to the other, we must ask the home health agency to accept $2.50 less an hour for service for this under the Medicaid waiver program. Fortunately this home health agency is willing to take the less amount. A year ago they wouldn't, they're a part of a big corporation and they couldn't even take Medicaid waiver clients, their home office would not allow it. But they did achieve that. However, the administrator became worried because he has a number of people on the CHOICE program and he was wondering how many were going to be switched over to the waiver program, and how much of a decrease he would take.

The other problem I'm having is attendant care with the CHOICE program. It was signed and approved but when we get into the federal programs then we have a lot more restrictions. I'm having trouble getting attendant care level approved with this home health agency for her. We don't want her to lose that relationship that she has with the worker, but that's what's being threatened. We spend time on the phone trying to get some people to get the system to change.

I'd also like to see a vision for the type of total environment we want to create in all of these programs. It shouldn't be necessary but we recently had four case managers resign from working in the ICF/MR waiver, the waiver for our mentally retarded, developmentally disabled people. In talking with one of them as to why -- they're wonderful case managers -- she was leaving this position, she said, it didn't take me long to figure out that I was working in a very hostile environment. This is the human services we're talking about? We should have a team approach of working together, but it's the providers against the case managers, the advocates, parents and guardians against one another, the quality assurance people and people at the various state levels. We can't help the people who need services with environments like this. We would hope that this can be addressed, through whatever we're doing, to help support our people who are working in the field, who are trying to help everybody.

We have some specific things, questions about the plan. There is a time line of July 1, for the government to appoint members to the Medicaid buy-in program. We haven't heard that these time lines have been met. Has this stuff come about and we just haven't been informed? Frequently in the document the term "should" has been used, the state should, the program should, we would like to see a more positive action term, the state shall, the program shall.

In Action Step No. 1, it talks about $6 million that was appropriated for the in-home programs. Our understanding at this point is that there is only going to be $3 million of that $6 million available. I guess we need clarification on that.

Another question we have is: What is the state doing to build the infrastructure to meet the challenges of the revised DD waiver and the inclusion of our targeted case management? October 1 was the date we have seen. We have 572 people on this waiting list in our area. We are very worried about this.

One last question: With recommendation of a Real Community Choice Commission where does the current CHOICE board fit in? Where is the recognition for the roles that they have done over the 12 years to bring us this far?

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is Bill Prather.

BILL PRATHER

My name is Bill Prather, P-R-A-T-H-E-R.

I'm sight impaired. I don't have any problems compared to some of the rest of these people. You just feel like crying when you keep hearing the same thing over, and over, and over.

I'm on the board of directors here at the League for the Blind and Disabled and do some volunteer work. This building was given to us two years ago, April. We had to raise $700,000 to redo it, you should have seen it when we walked in. It was raised right here in this town. Thank goodness David Nelson was our CEO and there was a handful of people that believed that we could do it. It's done and it's paid for. It's here for one purpose and that is to serve people that are sight impaired and that are disabled. I'm tickled to death to see it used this way. We have the ability here to staff and do a lot of the work that needs to be done. As I hear these other not-for-profit organizations up here today, they have the ability also to do a lot more and they lack only one thing, and that is funds, to expand and do their work.

There's always been a knack for federal, state and local governments to take a lot of time and not do much. What we really need is for someone to expedite this program through so that we can get started. And remember it's for the individuals, not for the State of Indiana. It's not for Fort Wayne, it's for the individuals that need this help. If the individual cannot understand it, how can people put it into effect. 

We have the ability here in this building to staff more people and to perform more services. Not to duplicate others, but services that need to be performed. I'm sure this is true for other not-for-profit organizations that came in here today and said what we need is to move forward.

So I guess if I was to say things then, number one, get this plan going, make it for the individuals. If it isn't for them, then it's not going to amount to much. We need the funds down to the local level. We have to raise 55 percent of our funds right here. State and federal government funds about 45 percent. So if we expand, you know how money is going to be raised locally, and there's a limit on what we can do. So we need aiding from up above. So if you can expedite this program that's going to be a big help. We don't need many more hearings, we just need action. On top of that we need funds to  put into effect anything that will help. I think the organizations are here to perform a big percent of your work for you, and most of those are not-for-profit, and we'd be happy to do it.

Again my heart bleeds for some of you people who were up here today. I'm sight impaired. I don't have any problems.

HEARING OFFICER BECKER: Thank you.

Next is Jose'.

JOSE'

My name is Jose'. I'm representing Other People First. They would like to get out of this place one of these times and get into a group home. He was in one once before and it was kind of rough but he had to come back so his son could stay in school. So that's what he wants to do. I don't know where he's at but he's ashamed to come out here and testify that he wants to come into the community. So I just want to tell him to wish me good luck. This is my second year out. So that's all I had to say.

HEARING OFFICER BECKER: Thank you.

Next is Donald LaRue.

DONALD LaRUE

Hi. My name is Donald LaRue. I don't have any problems. I do but I don't. It's like for Ron and myself it's keeping two places and like I say we were lucky enough that we brought in by Royal to take our wheelchairs. This is my life. But like I said I really don't have any problems, not compared to a lot of people here.

I'm sure that everybody wants to feel freedom and that's what we're all after. Everybody's got something that's holding them back. We just want to feel the freedom. I cry at times if I feel I'm not trying hard enough but I try. They call me the Kid and that's Sundance, and I'll let him talk now.

RON CARPENTER

My name is Ron Carpenter. I've had MS for 21 years now. I've pretty well set myself up here. I can get all over town. Everybody in town sees me around. I used to get called Don, Hi, Don, and I said, nope, I'm Ron. So we've been speaking for each other all the time and now we're roommates. We're going to name our room the Danger Zone. So we get along, like Don said, there's really nothing wrong with us, we just need a little hand once in awhile.

I've come back from some major spine surgery and I got put in a nursing home. That was the only place I could go. I needed a nursing home then, but I've been trying to get out for the last three years. Because nothing against the old folks but, it's like visiting your grandma and never leaving. It's fun for awhile but it gets a little boring after awhile. So I do get out, I do have this, and I do get out and get around. If I could get a new one, Medicare would pay for it, but if you're in an institution, they won't even talk to you. I'm president of the resident council there at the nursing home and that doesn't carry any weight either. So that's about all I need to say.

Thanks for listening.

HEARING OFFICER BECKER: Thank you both.

Next on the list is Sheri Caveda.

SHERI CAVEDA

My name is Sheri Caveda and I am the mother of three children with disabilities as a result of a car accident. A lot of you know my story, as a matter of fact one of the things that I think 12 years ago was the first time that I came out to a public meeting and shared my concerns.

Unfortunately, I would say to you that some 30 times later of coming to public hearings such as this and offering my comments, two things are clear to me.

One, the quality of my life and the life of my children is far worse. Two, I have never, not one time testified before the same person twice. There's a swinging door in the managerial or supervisorial level of the Family Social Service Organization. Every time I identify a person that has been allocated or designated to handle a particular issue or problem, and I go back a second time to deal with that person, they no longer work for the Family Social Service Organization. This is not an exaggeration, this is an absolute fact.

Twelve years ago I spoke to a gentleman named Bob, who was very involved. Him and Geneva shadowed with the CHOICE program, and I said Bob, there are not enough direct care workers to provide for my children what they or we as a family require. I'm told that no one can implement our plan of care because there are an insufficient numbers of people. He said, I don't want you to say that aloud, Sheri, I don't want you to go to any public meetings and make these remarks because we want to make sure that the State Representatives and the State Senators will allocate sufficient money for the CHOICE program.

We need to make sure that they know that the CHOICE program is good. I said I'm not challenging or questioning whether the waiver programs are good, whether the CHOICE programs are acceptable, I'm questioning whether we today, yesterday, eleven years ago, have had the sufficient infrastructure to provide the services that we supposedly, right on paper, are to be available to people. That is a chronic problem that concerns me.

I could tell you stories too that would make you cry. Our lives have continued each year to get worse. Disability is not the problem. My children are not the problem. They are wonderful people who have made adjustments to disability.

But the very systems that are in place, that I am told are to be my supports and my answers, are so incredibly complex, so incredibly difficult to access, that my life is a nightmare of trying to keep straight the supposed help that's available to me.

I have not in twelve years gone a month where the plan of care that was written by my wonderful case managers from aging and in-home has been implemented. Did you hear me? In 12 years.

So at the same time that we are discussing new programs and new plans, I need to see in a plan, this plan, real answers for infrastructure needs. I need to know, not only as a parent of a child with disabilities, but as an advocate now for all people with disabilities.

How many apartments are really available for the population of people that we want to place in the community? Does anyone know that answer? How many have accessible vans and access to transportation? What is the capacity of the transportation available to meet the needs of the disabled population that needs that transportation? I want to see those figures. How many direct care attendants do we need to provide the services for these individuals? How many homemakers do we need to provide the homemaking care that is necessary? I think I reached a conclusion some years ago that we probably do a reasonably good job, I think in response again, Nancy, to something you said, to our seniors if they have access to the money they need for the programs.

If you are in this area you can receive your care somewhere between 9:00 a.m. and 3:30 in the afternoon, and you're at home and it doesn't really matter if the workers show up at 11:00 or if they show up at 2:00, if you have that kind of flexibility in your life. I think we're doing a pretty good job of keeping people safe. If you have any other needs, if you need intermittent care, nursing procedures, or nursing care in addition to attendant level or home making services, if you need care at different times.

For instance, a friend of mine that's here, is an adult, can I mention you Rick? People like Rick because he's very much like my children. My children don't want to go to bed at 8:00 at night. And they have to have care in the evening, and I hear of many people telling me, the home care system with the whole way it's set-up has a great deal of trouble, having workers that want to work the evening, or early morning. My children need care before school. I've solved my personal problem by getting up at 4:30 each morning so that I can provide myself all the care that they need before school. Every day I do that. I don't get Christmas off, I don't have any day off, because there isn't any home care system that is ever been able to meet that need for me.

We really want to be a part of this process. And as I bring my remarks around full circle, I need real information about how you're going to provide the services that people need. I need real information regarding how we're going to generate enough people, people to just provide services. I need to know what's going to happen to this plan.

I'll tell you my biggest fear, and this may not be fair, I don't direct this to you individually, I have a sense that all this wonderful -- we do a good job. In this area we get along, there's this kind of natural enmity that's fostered by the system between providers and consumers and amongst ourselves. We've managed to behave like adults here in this area and we all come to the table trying to find answers. We have a lot of information here, we can make the system better, if you'll let us. I'm afraid that you're going to take everything we've done, everything we've said and it's just going to fall under the same nebulas, nothing, something out there, and nothing will ever come of it. Because that personally has been my experience for twelve years. I've really tried to be a part of the answer. I firmly, philosophically believe you don't complain and moan, if you don't have some willingness to be a part of the solution. 

Please access that. I want to see posted the names of the people that are going to design the programs that affect my life. I need to see that, I really do. I don't want the same four or five people -- what I'm really trying to say is, if it doesn't work, do something different. Let's not keep doing the same things over and over again without coming to any real, bringing anything to any real resolution. We're desperate. I can't tell you, I'm a very strong person, and I do what I do every day because I love my children. I don't know how I've done it. I do not know how I've done it. The things I've been called, and the things I've been labeled, and we have this society, I was in a room at one point with a bunch of parents very much like myself and we've developed this different personality. We may have all started out with a whole variety of personalities, but we have a particular personality type that I would love to have somebody follow. It's this aggressive, no you don't understand, you will do this for me, my child will not be left without care, my person whom I love will not be treated this way again, we're all in your face. We work really, really hard to not be labeled nasty people, difficult people, simply because we insist that we not be abused or mistreated, or left without vital care. Think about doing that every day of your life, every single day, fighting just to have the basic life needs that you have met, and then to be labeled difficult because you think you ought to have those.

Please use us. Please let us be a part of the solution. Let us tell you how to really keep us safe. We spend an awfully lot of money on levels of supervision that do not keep us safe. I've had this talk with many people. We do need oversights, I know that, but would you please ask us what we need to be kept safe. And not spend millions of dollars on peers and levels of supervision and management that does nothing for anyone except cost money.

I've gone on for a long time and I thank you and genuinely appreciate the fact that you're willing to come and sit in that hot seat and listen to these things.

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is Jane Novak.

JANE NOVAK

I'm Jane Novak for NAMI, Fort Wayne, and what an act to follow. Sheri is a very good friend of mine and I have to say ditto to many of the things that Sheri has given to you.

I am the mother of a son who's now 47 years old, diagnosed with schizophrenia at the age of 20, a freshman in college, who had all those wonderful ideas about what his life looked like and what he thought it was going to be. Some of you may know who that young man is. That happens to be Chip Novak, who is a wonderful golfer in our community. He is known various places around the country because of his golf. That's what he had hoped was going to be his career, but schizophrenia took over. Twenty-seven years ago there wasn't anything for me, as a parent to find out how I was going to take care of this son. I at that time was employed by the Social Security office. I worked for them for 30 years. I ended up taking early retirement to take care of my son who needed me at home, to give him the support that he needed, in order to learn to accept the illness that he was dealt, and was going to have to live with.

Now today at 47 with the miracle drugs that are available, he is doing better than I had ever dreamed he would do. He's back pursuing golf. In fact, he says maybe there's hope for me on the senior tour, that's how ambitious he is now. Before that ambition wasn't there. Our people with schizophrenia are robbed of all of this kind of motivation and capabilities.

He's also working part-time, so he now is a taxpayer and he feels good about that. He likes being able to file that return with the Internal Revenue Service. I can't say that I do, but he does.

So what I'm saying to you is, there are varying degrees of this illness. Some of us are more fortunate than others that medicine works. It does not work for everyone, I want to make that very clear. A very good friend of mine, who I travel the roads with between here and Indianapolis regularly, because she and I are both out there advocating for all persons with serious mental illness, her son is in an institution. None of these fabulous drugs have worked for him.

I happen to be 75 years old. My fear, like many of our parents, is what happens with our family members when we're no longer here. That's why your plan has got to provide for our people the accessibility to what they need in order to have some quality of life.

I also want to point out to you that we are a support group organization. We meet every Tuesday night, and every week we have anywhere from three to five new families coming every week, that have just been dealt this illness. How am I going to handle this? Where do I go for the resources? What does our future look like? These are young parents that are frightened to death. 

So because of the progress I, personally, and many of us have made with our children that doesn't solve it. There are those new people that are coming along every day and you must not ignore them. You have heard many of them speak this morning.

By the way, I want to thank all of our NAMI people that showed up for this hearing. This is very important for you to hear what those stories are. So I ask you, as Sheri has asked you, to let us know what is in that plan. Don't come and tell us after you've already done it. Ask us. I've got some valuable experience to offer you, 27 years of hard, total work, seven days a week, 24 hours a day. Like Sheri says, when you have an ill family member there is no rest for you. There are no holidays. I'm not complaining about that. I'm thankful that there are now the medicines that help my son and until I breathe my last breath I will continue to advocate for those who are unable to do that. My son is one of those, he says Mom you can speak, go talk, you can tell them anything you want about me. He himself finds difficulty doing that.

When he's in his realm, as he is with golf, he will tell his story, and as far back as 1981 when he won the tournament here in Fort Wayne, he told the reporter everything.  Think about that, that's 20 years ago, that he spoke openly about his mental illness. You heard several of our people talk about their mental illness this morning. That's a very difficult thing for them to do because they felt ashamed, which they shouldn't. These are truly biological brain disorders. It isn't something that our children did or didn't do and it isn't because I was a bad parent. But I had a psychiatrist tell me that and didn't even want to include me in my son's plan for his treatment. That's pretty sad. I believe we, NAMI, here in Fort Wayne, have changed that a lot, through the education that we have provided, everywhere that we have had that opportunity. I must also add that we are more fortunate, I think, than most in the kinds of projects we have. We are a community to take the responsibilities. As Sheri has told you about things. This gentleman that we had that told us about the League for the Blind and Disabled and what they've done here. Warren Sparrow who told you about our clubhouse that we've implemented in order to help our mentally ill. I happen to have been invited to serve as a member of the board of directors of Park Center, our community mental health center. We can now make the next step in hopes of putting a consumer on that board of directors. That's progress. That's the kinds of things that you have to help open doors for the rest of our people in the State of Indiana to be  able to have some of those advantages. Some of those things do not cost money. Don't always think that there has to be money involved.

So ask us. When you're sitting down putting the plan together, get people from the various illnesses that have knowledge and background that can sit and tell you what our family members need. Go directly to those people who suffer with the various illnesses and ask them. I know 27 years ago you wouldn't have gotten anyone to stand up here and tell you, that's the progress that's been made. I must remind you again don't think that's everybody. There are newly diagnosed people every day that are experiencing that same devastation that I experienced 27 years ago.

Thank you very much for listening, and I wish you good luck and I'm really serious about you asking us to be included in getting this job done.

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is Rick Frick.

RICHARD FRICK

Hi. My name is Richard Frick. I am the Co-Director for the ADA Coalition here in Fort Wayne. I serve as an assistant with Paralysis Care Network. We talk to new injured people.

My injury is a spinal cord injury. I was in a traffic accident 14 years ago.

First time I ever met Sheri Caveda, her kids about run me down in the hospital when I was going around a turn. It was troubling to see little kids in wheelchairs. It really hurt me at the time, because, you know, to see two little kids in a wheelchair, I knew what they would have to go through their whole life because I'd already been in the chair for a couple years. They've got it a little bit harder than what I do because they've got to experience things for the first time in a chair.

In this area of the state it's not easy.

I spent five and a half months in the hospital before going out to Colorado to a spinal cord specialty hospital. Out there I was able to be taught the fundamentals of taking care of myself as best I can. As a result I've kept the pressure sores down to a very bare minimum. I've been able to stay in a manual chair for quite some time, even though now my shoulders are about shot. I'll need to start using my electric chair.

Now I've been able to do quite a bit more. I do have a college education. I still haven't been able to find a job but at least I do have a college education. I do go around and talk to high schools and talk to them about the different things of taking care of themselves, watching out for drugs and alcohol, drinking and driving, doing dumb stuff, and thinking before they do something stupid.

But what you've got to do is to help us be able to be more active and to be able to get us out more. I didn't get here today until about 11:00, and I live probably about an hour away, but my nurse wasn't able to get there until about 8:00 in the morning. I mean for today it worked out all right, but for work, I checked around and I interviewed and you have to be able to start at 7:00 in the morning. That's impossible for me. My nurse comes in the evening at 7:00 and I have to go to bed. At 7:00 I'm not quite ready to go to bed, but you have to do everything to work around their system or you don't get care. You complain and you get blackballed.

The last agency I had, it was two days after Christmas, and they said well sorry but we can't care for you anymore. They gave me about three or four days to find other people to take care of me. So I'm on the phone trying to find people to help me out, and luckily I did, but I had to pay for a whole month of partial care because I have to have a nurse for my knee. Just from that alone I still owe the company about $100 of a $1,000 bill just for a month of care. That's just for a nurse every other day.

The cost, expense, is so much less than what it would be if I was in a nursing home. I have a friend in a nursing home right now, still trying to get out, but it's so hard, trying to find people to help him get out. You just can't take someone and stick them there, or pull them out without any support. It's not impossible, but it is very hard.

I thank you for your time.

HEARING OFFICER BECKER: Thank you.

Next on the list is Roxandra Clemons-McFarthing. ROXANDRA CLEMONS-MCFARTHING Hi. I'm Roxandra Clemons-McFarthing. I am here on behalf of the Indiana Commission on Aging. I'm a member of the Indiana Commission on Aging and the Commissioner came up with a position statement with regards to the Olmstead plan. The statement I'm going to read this afternoon is an extension of our position statement that we made at the first hearing.

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.

1. 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.
2. 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.
3. 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." This statement was approved by the Indiana Commission on Aging.

Thank you.

HEARING OFFICER BECKER: Thank you.

Next is John Guingrich.

JOHN GUINGRICH

Let's see I'm going to have to figure out how I'm going to do this. Last time I got pretty personal and emotional. I'm going to try to stay away from that this time.

First of all when we were at the training in Kansas, which you had the opportunity to go, I learned something that I didn't realize that under 20 percent of Indiana's Medicaid dollars go towards community care, goes towards long time care in the community. That's 80 percent going toward care to provide people with care in nursing homes or institutions. If that doesn't change, nothing is going to work. So in the plan I would like to see a schedule of how that percentage is going to change each year down the road. Hopefully with that becoming 100 percent being open and available to people in the community.

When it comes to the consumer real choice board and what's going to be created, I ask that it be an equal number of consumers to anyone else that is on the board. If it's not equal, it's not going to mean anything. I also ask those consumers to come from the various districts around the state and the congressional districts.

That seems like a pretty decent way to start. There's nine congressional districts so have at least one consumer from each one of those districts. Let's have people with different disabilities. Don't have the same people that you always hear from. I am pretty sure that if I ask for a list of all the committees that the people with disabilities are on, I'll find the same names most of the time, and that doesn't do any good. The same names aren't cutting it, whether they have disabilities or not.

I'm also concerned because in this last week as I've been getting calls about the hearing, because my name was listed on the website, which is cool, as I've been getting calls -- I received a lot of calls from front-line state employees. State employees who go into people's homes and who help people create plans of care, who are told, you do not go to that hearing, by their supervisor. If we can't get the people who are providing natural services here along with those who want to direct their own services, how can we make a change? The message that is coming down is the state is going to create this plan but it's not really going to mean anything because they're not being allowed to give input as well. I have a big problem with that.

Now here's the League and if we're going to make changes, we always ask for our staff's input, because they're the ones doing the direct care, they're the ones out there meeting with consumers and helping consumers. If you don't want those front-line people to speak their mind and tell you what's working and what's not working then you'll never hear. If you're never going to hear, then things aren't going to change.

I know people who lie on forms to get the care they need. I know of a woman who recently claimed her son as Amish because she needed some way to get her son the appropriate services that he needed. To classify him as a member of a different religious group she was able to qualify. She did that and she lied. 

You know in the last hearing I said I don't use these services now. I'm pretty lucky, I don't have to. While my disability looks pretty severe, I don't have to use services right now. Eventually I may have to. If my leg ever gives put to the point that I can't walk any more and I can't provide limited care for myself, I said that I'd lie, because I won't have my kids taking care of me.

I teach my kids to care for themselves, and I teach them how to find the resources available. With all the people I work with that can't find the resources they need, they have to depend on family and friends or they lie. If changes in the system don't take place, and if you don't include us in the plan, down the road I'll lie.

HEARING OFFICER BECKER: Thank you.

Next is David Nelson.

DAVID NELSON

We get two League people in a row, that's probably too much for one day. Sheri Caveda asked me yesterday or the day before, as I looked at the plan what exactly was it that I wanted. So I started thinking about that.

The first thing that I thought of, was I'd like to see a plan. The fact is when I look at this and I see policy statements and recommendations and action statements, if I turned a draft in to a private foundation or to Indiana that was designed like this, you guys would laugh me out of the county. We need a plan, we need a real plan, that has goals, that has objectives, that has outcomes, that has evaluation criteria, has target dates, has responsible parties. Something that when I read it I know here's where we're going, here's how we're going to get there, here's when we're going to get there, and here's who I'm going after if we don't get there. I need a real plan. We need a real plan. These bullet statements of what we already have are not going to do us much good.

I would like to echo one of the things in that plan that I would really like to see, John talked about moving dollars from institutional care to community care, moving that ratio of 80/20, to something more reasonable. That needs to be stated in here. We're going to move those dollars from this ratio going to institutional-based settings to this ratio going to community-based settings. We need to make that a priority, say it, and work toward it. So that goal needs to be in there.

I saw several references in here to consumer directed personal reference. I kind of laughed at that. Something that folks here have been talking about for a long time -- the original bill in the House 11-77 came out of people from Northeast Indiana. People who said, I want to be able to hire my neighbors, train my neighbors. I want to be able to hire family members, train family members. I want to help solve this problem of lack of workers by pulling in a new workforce.

I applaud the fact that we reference community direct personal assistance in this plan, but my message to the state is we just need to start doing it. We've studied it to death. We killed 11-77 in favor of an administrative solution that took far too long to get off the ground. We know this is the right thing to do. It's being done in other states. Let's stop talking about it, let's do it. I heard a gentleman when I was in here earlier, and I'm just kind of going down bullet by bullet, talking about employment discrimination.

It made me think, this guy is right, some of these things we don't have to invent, we have the Americans with Disabilities Act. For most communities though, we don't have a way to enforce it. Where does this plan put in place the advocates to enforce the civil rights that people with disabilities already have? The people that will watch their neighborhoods, their communities, to make sure that's happening. I would recommend that we really zero in on that. That we recognize that there are things that we have the teeth to do, we just haven't put the people in place to do them.

Along with that, I saw references in the plan to providing more information. When I started in and peer support and support groups and things like that, and when I saw that, advocates, peer support, information and referral, I started looking for where are the centers for independent living in this state plan? Those consumer controlled organizations that focus on advocacy, peer support information referral, and skilled trainings, where are they? The fact of the matter is I couldn't find them in here. We have a network of eight centers and one satellite in this state right now that could be used and it's not even referenced in here. Figure out how to use what we have, fund it better if we need to, but use what we have.

On that same line I would like to point out, and when I was talking to folks in developing a state plan for centers for independent living, for probably about the fifth year in a row, the state informed this network that there was no money for increases because it was a bad year. It struck me that this is the first bad year that we've had in about five or six years. Where were they in all the good years? It's starting to not float anymore, to tell us we have financial trouble in Indiana when we didn't do anything when times were good. You can't make one argument if you don't let us make the other argument. So that's just a little side line, but I needed to get that in because I know it will be there for posterity then.

Finally for the opportunities that we do have in the community, the Medicaid waiver homes, or so called Medicaid waiver homes, the different things that are already out there, the plan does reference some quality assurance stuff. But I'm not sure that's really there. We need some real quality assurance. We need some real monitoring by the state and we need some real enforcement. If we're going to send people out in the community, we need to make sure that they're getting what they're entitled to and if they're not, the people screwing up pay for it. What we have right now doesn't do that. This plan needs to give us real quality assurance, real monitoring, and real enforcement.

I'm sure I could find more things if I had more time to go through it, but that was the high spots for me. I do appreciate the fact that you did come out here and you're spending so much time out here. I appreciate the fact that the hearings were opened up again and that we get another shot at this. As time goes on though, I hope we do get it right.

Thank you.

HEARING OFFICER BECKER: Thank you.

Would anyone else like to speak?

(Positive response.)

Yes.

CATHY DUCHOVIC

Hi. I'm Cathy Duchovic, and I'm with NAMI. I just want to thank Jane Novak and Teresa Hatten for what they said earlier.

I'm here as an advocate for my son and  for other children with mental disabilities. I would ask that the input of people who have been active in this community, who have been active in looking at services that need to be provided, and who have funded Grass Roots Project be listened to. So that policies and monies that are going to be spent are actually used in ways that people in this community, and other surrounding communities, actually feel that they need. We are the people who know what we need and what our children need. I spent two hours this morning with disability problems at school and doing assessment for emergency placement in emotional disability programs. I'm one of the lucky ones. My husband and I are able to advocate for our son. There are other parents who don't have that capability. I would like for there to be resources for people to turn to so that their children can have proficient advocates.

I would like for my son to complete high school and college, and to be a productive member of our community. That's what he wants. Sometimes it's not really possible. He has missed so much school with hospitalization. He's not stabilized on medication. He is lucky to be a productive member of society. He's a very talented, bright young man. He has good times and he has his bad times. I want him to be a productive member of this community and not end up in the criminal justice system like so many of our young men who do not have advocates.

Do you know that in Fort Wayne right now we no longer have a switchboard type of organization for our young people to call in when they have suicidal thoughts. I have a whole network of people they can call, utilize Park Center, but the teenagers are not good at calling on those resources. My son and other young men and woman like him need services where they can call and talk to someone and help them through an immediate and impulsive period. We don't have that resource here.

I live out in a county and I'm very impressed with the services that NAMI has been able to work out with me and the Fort Wayne County Police Department. We need money so that we can also have training for the outlying counties, sheriff's department and such.

Twice in the last six weeks I have had emergency situations with my son where I have not been in a position, because he is under 18, to be able to call for effective help, unless I want to call for police officers and perhaps have my son incarcerated, instead of transported for appropriate services, I have had to transport my son myself, putting myself, my son, and probably everyone else on I69 in jeopardy of their lives. I do not want to have an accident because I do not have transportation services in emergency situations for a child who is at that moment, that moment, not capable of being rationale and being able to cooperate with needed help, a child who is impulsively suicidal at that time. Those of you who have not ever seen this don't understand how quickly that somebody with bipolar disease, who's a teenager, can cycle, you have no idea how quickly they can go from being normal to being high and invincible and dangerous. I have no transportation means other than punitive criminal justice.

Then there's the issues that Jane also touched on. My son's a teenager. Some day hopefully he'll be stabilized on medication. I am in fear that if something happens to me, who will be there for my son? I want my son to, and all the men and women with disabilities, to have someone there for them so they can be productive members in our community.

Thank you.

HEARING OFFICER BECKER: Thank you.

Is there anyone else that would like to speak?

(Positive response.)

Yes.

PAULA HEISELMAN

My name is Paula Heiselman. I wanted to share with you that 20 years ago I went and applied for a job, and I liked this person, and when I found out he only had one leg, it upset me. So I now, 20 years later, realize my grandfather only had one leg. I see now how blind I was at the time to let that bother me. These things don't bother me any more. I just want to share that with you.

Sometimes people are actually afraid of people with obvious disabilities, but many of us have disabilities that you can't see and that's the nature of mine. I have an off the chart under active thyroid which is boring to most people. I trip over my feet. I look like I'm

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