Transcript of Public Hearing Merrillville
FAMILY AND SOCIAL SERVICES ADMINISTRATION. STATE OF INDIANA
INDIANA'S PLAN FOR THE COMMUNITY INTEGRATION OF PERSONS WITH DISABILITIES INITIAL PUBLIC MEETING
LAKE COUNTY
NOVEMBER 15, 2000 - 10:00 a.m.
TRANSCRIPT OF PROCEEDINGS
had at the hearing of the above-entitled cause at Southlake Center for Mental Health, 8555 Taft Street, Merrillville, Indiana, on Wednesday, November 15, 2000 at 10:00 a.m.
ALLEN COURT REPORTING
(219) 322-8933
MR. SYBINSKY: Good morning. Sorry we're getting off to a little bit of a late start, but people have been trickling in. This is the first of three statewide meetings. So I hope you will understand that we will -- we tried to get everything right.
We're trying to understand both logistic and human problems that people have so that we can relate to them well. If you know of any problems or any -- have had any problems, please let us know because not only do we want to correct it if we could for this one, but also for the other hearings which will be conducted tomorrow -- or the other meetings which will be conducted tomorrow.
My name is Peter Sybinsky. I'm Deputy Secretary for Policy and Research at the Family and Social Services Administration. I chair the department's action team for community integration. That action team was established by Secretary Humphries in response to Governor O'Bannon's executive order which established the requirement for Family and Social Services to conduct a thorough assessment of our ability and our program's ability to integrate the needs of persons with disabilities and to assure that they are part of, as much as possible community life.
There are a number of persons here from Family and Social Services Administration to hear what you have to say in addition to me. Miss Joyce Rogers is our Director of Contract Management and also in charge of planning for FSSA. Geneva Shed. Geneva is our Deputy Director in charge of Aging and In-home Services. And Tom Rich is our Assistant Deputy Director or in charge of Transitional Services for the Mental Health Division. We also, I believe, have some other staff here who I cannot right now identify but we did encourage people to come and listen here because that's what we're here for.
I would also like to talk a little bit about the logistics. As you may know the rest rooms are outside this hall and to the left, and that for a two-hour meeting that's kind of an important piece of information.
We will have a court reporter here who is going to record everything that is said. We will have a total written record of this meeting and it will be used to help us and provide us the information so that we don't miss anything. We want to get everybody's thoughts who want to speak and we want to make sure that we have a total written record of that.
We also have interpreters, as you know. To my right is Debbie Pampalone, and she will be assisted by Becky Holiday who is right here in front of me. And we really appreciate them coming today to help us out to make sure that we can be as accessible as possible to people who need interpreter services.
Process today is simple. As I said, we're here to listen. I have a brief slide show to explain a little bit about the planning for community integration process. And the objective of this meeting is to get your reactions to the process and to get your visions for what we need to do in Indiana to provide the maximum of community integration for our people.
So without too much more delay, I'm going to start the slide show and we can then after that take testimony from those of you who wish to testify.
Joyce, if you could. I'm going to leave on the lights so we can see the interpreter. I hope you'll be able to see the screen. Why don't you work on the slide show? Judy, could you help, please?
I'm going to start off with talking a little bit and we'll catch up with the slide show. If you can -- we did have notification from someone here as they came in that we did not have a copy of our materials in Braille. We are going to respond to that. In fact, we have begun work on that as soon as we heard of that and if you do want alternate materials, please see Judy Tonk who is our planner -- she's leaving the room right now -- and give her your name and address and we will send you those materials as soon as they are completed.
We have got the slide show going. Great. This is our initial effort to get input from the public. We are going to ask for other -- other ways and I will cover that in my show or in this presentation. Joyce, if you could.
Purpose of these meetings is twofold. The first is to provide us with information which will assist in the development of a comprehensive plan to improve and expand community-based services and supports for persons with disabilities. We have a planning process. If there are some thoughts that you have about that process and how it can be improved, we want to hear them because it is very important that we are responsive to you and your needs.
The second purpose is to assist us in the development of goals that will help to eliminate or will eliminate unnecessary institutionalization and support consumer choice and self-determination. So there are two dimensions to this.
First is how is the process going to work. Is this going to work for you. The second is what are your goals, what do you think we need to do as we start this planning process to make sure that we will eliminate unnecessary institutionalization and support consumer choice and self-determination.
We are doing this because maybe it hasn't been as readily apparent in the past as it is right now, but the real experts -- the real experts are you, the people we serve. Disabled persons and their families know what they need and they know what the problems that they face are.
And the people that we are, both within government and in the provider community and in the advocacy community and in the community at large, are there to assist and help and to see how much we can really serve the people with disabilities with services that are relevant to their needs and which respond to those needs. So we're going to -- we're coming to you early on.
In the past government has been accused of not being user friendly. We're learning to be user friendly. We're not all there yet. You may have some experiences where we haven't been user friendly and we want to know and we want to respond to those instances so that we can respond ourselves.
Let me go for a moment into the plan. This plan is designed to actively seek information and advice from all affected persons and to describe a common vision and focus upon moving forward. That plan also is going to identify major goals and values that we have in common that will help us all to work together to describe how we are going to achieve those visions and to set measurable objectives so that all of us can determine whether we're successful or not. And that's an important part of this process because we need to measure and be accountable at every step of the process.
Our commitment is to replace unnecessary institutionalization with community supports and services. That is the first promise we have to you.
The first bottom line of our plan is to replace unnecessary institutionalization with community supports and services. We also commit to include persons with disabilities, their families, advocates and providers in the development and the implementation of this plan. And we will work with you so that we can all measure on common ground whether we're successful or not and the degree to which we are successful in meeting these needs.
Now how are we going to do it? How are we going to do this plan? We have, at the highest levels of FSSA, created a community integration action team and it consists of me, I'm the chairperson; and we have the people who are in charge of mental health, development disabilities, programs for the elderly, health care financing, planning are all the key members on that team. And we are meeting on a monthly basis to develop the framework and then to move out with this framework to individual subcommittees in the areas of mental health, elderly affairs, and physical disabilities and developmental disabilities, and to work with advocates in each of those respective areas to come up with what you might call subplans which will then work to meet the needs -- the different needs of the people in those areas. With the common framework of moving together, common set of rules and a common subcommittee structure, we will move ahead together so that everyone, all groups that are affected, will be brought into this process and will have a common ground upon which to stand.
We also are developing a process of community dialogue. First, we hope to have more community meetings such as this one throughout the planning process so that we can respond to your needs at every critical juncture. We are going to be seeking out people specific to each area who can help us through interviews and focus groups.
Large groups like this, large meetings have one particular purpose, but to get into detail, to get into how things really work, to get into real frustrations and real successes we have to ask people to spend a concentrated amount of time and we are going to do that with selected groups and/or individuals and we would like to, of course, have suggestions from those people who might best help us in that area.
We have our Family and Social Services website which has a link to all of our Olmstead planning materials. Those planning materials will be updated as time goes on and as we move forward each new piece of information will be placed on the website so that you will be able to access from your own home computer or a library what's going on at any particular point in time.
And if you have some other suggestions as to how we can dialogue with the community in any way, we have a commitment to develop input at any time in any way. So your ideas on how we can better reach you and touch you and talk to you about your needs and about how we're going to go about this process of planning, we want to know. So there's a lot of things that we are asking and a lot of information we need to put together.
We are going to have two reports. The first is a preliminary report to the Governor and it will be on the basic goals of the program. The input that you provide today is going to be very helpful to us. We are also going to have in that report budget recommendations for the next biennium so that we can readily up front recommend to the Governor what we need -- or what we can do in this area.
Second, we have a final plan report and the focus is on that final plan report for the long-term. That's due in June of the year 2001. It will have not only our goals but how we seek to achieve them, a description of the changes we are seeking, and identification of resources, both external and internal that we will need. It will have measurable objectives and expected outcomes of this process. It will be a full scale plan which I frankly hope to make the best in the nation. And with your help Indiana can be a leader here.
And with that I would like to stop talking and come to the real objective of this meeting and that is to start to listen. So we are now going to enter into our testimony phase.
There we started off by asking people to sign up ahead of time to testify. There have been -- there were three people as of close of business yesterday who had so signed up. There were a number of people who called in overnight, and I didn't get their names, but we're looking forward to having them too, and then we will open it up for testimony from people who have not testified.
The priority will be that we go with the people who signed up first. We will then move to those people who are interested in testifying, I would like to ask you if you are testifying because there are so many people, because we do anticipate that a lot of people want to have input, that you hold your testimony to five -- to three minutes and we will get through the whole list of everybody. And if we have time at the end, those people who want more time can elaborate a little bit on their remarks. So that gives everybody who wants to speak at least a chance to speak and then if we need to, we can, either through the formal meeting or at the end of the meeting, get additional information from you. The first person who signed up to testify is Mary Peterson from Hammond. Is Ms. Peterson here?
MS. PETERSON: I'm going to introduce Lee Strong who will speak for our area in my behalf. I mean not in my behalf but in my place.
AN UNKNOWN VOICE: I'm sorry. Can you use the mike? We're having trouble hearing.
MS. PETERSON: I'm Mary Peterson and I want to introduce Lee Strong who is the Director of Southlake Mental Health Center. And he will speak on behalf of the mental health centers in this area and on my concern.
MR. STRONG: Can everyone hear now? Since Mary already introduced me, let me talk very quickly given the limits of three minutes of time.
Indiana through the Division of Mental Health has not requested any additional funding for community-based services in the last five bienniums. That's ten years. The only additional funding for community-based services requested through FSSA by the division has been those transitional funds that have come as a result of the closing of Central State Hospital. Any other dollars for community-based services has come as a result of citizen advocacy by parents, family members, and primary consumers.
In looking at the Olmstead materials and more recently looking at the Governor's Council on State Operated Facilities, there are some very lofty goals that conceptionally are unquestionable. They're motherhood and apple pie and I think all of us representing the community would be in strong support of those concepts. The real issue, however, is not the concepts but the values and the goals, it's the implementation. And on one of the slides one of the most important things was the presentation of a biennial budget.
I call to everyone's attention -- and I can't speak for all of the different disability groups. I can only speak for those that I have some intimate knowledge and that's the mentally ill and those that suffer from addiction disorders. But the Governor's council on state operated facilities talks about reducing the bed availability for the mentally ill by 390 some persons by the year 2005.
We simply can't accommodate the present-day need given the current availability of state operated facilities. If, in fact, there is going to be this continued transition which is -- I think is a laudatory and important goal by the year 2005, it means that there's got to be funding that's requested in this biennial budget for additional independent, semi-independent, supervised group living and equally important for someone in the supportive services necessary to maintain persons in the community.
And I'll touch on one and then I'll shut up recognizing the three minutes. But I look at several of us here across all disability groups and transportation is a critical issue.
Transportation not only for purposes of getting to and from services but also transportation for purposes of support of employment. And I see some nodding of the heeds, and I want to just say that in our narrow field of mental health, we have a number of consumers that can productively be employed especially in this economy and especially in Northwest Indiana given the job availability, but they cannot get a job and they cannot maintain a job if there's not transportation.
And outside of the cities of East Chicago, Hammond, and Gary, there is limited or no transportation available. So when we often think about services, we think not about the professional services, but such things as transportation is what helps people to become independent and less reliant upon those very same services.
So I think the challenge, the challenge that I would throw to the administration, and I don't know how to say this in a politically correct or more tactful way, but put your money where your mouth is. Thank you.
MR. SYBINSKY: The next person on the list is Rita Ruff. Rita Ruff.
MS. RUFF: Hi. Hi. My name is Rita Ruff and I'm a parent of a severally disabled person -- young man actually -- 22 years old. And again I want to reinforce the fact that we need fundings. Whatever you have said today, whatever we have seen on the slide, it's just a slide. We need this not to be just a political move. We need action. We need money. We need transportation. We need help for our kids. I know I do. I don't know about the rest of the parents here.
But even though I have some of the best agencies in Indiana working for my son, they still need fundings. I was told we cannot get so many hours which my son needs because no fundings. I like to get my son into his own place of living because it is difficult and it's very hard to find a match. So I need individual living for him. And with $460 a month through -- he gets through SSI, it's very difficult to get a place of your own. And I can't afford to support it. So by now this is where we stand.
Everything is at a halt because of fundings. It all comes down to money. And there's been promises made to us which failed. There have been meetings over meetings which also have failed. There has been promises of integrating my son into a community working place. It also failed. We were without a caregiver for six months because it was hard to find a caregiver for my son. I'm just speaking as me. As the way my situation is. I have very good -- like I said, Respite. You know Respite. Great people. They work for us.
I have factors, Noble. They are all working for us very good, but it's just so much that they can do without the help from downstate. And that's all I have to say.
MR. SYBINSKY: Thank you very much.
(Applause)
MR. SYBINSKY: Judy Abbott, Munster.
MS. ABBOTT: My name is Judy Abbott. I am President of the Board of Directors of LCAR, host association for the retarded here in Lake County and also I serve on the Board of Directors for the ARC of Indiana. In that capacity I'm chairman of our waiting list committee. I have a son. I'm also the mother of Scott Abbott who is a 36-year-old person who is profoundly retarded. He has Down's syndrome.
I put his name on the list for the Medicaid waiver in May of 1996, and in October of this year finally his plan of care was approved, came back in November -- around in November with a postdate of being approved for October 1st and we are now in the process of getting that plan.
The problem being exactly what Mrs. Ruff says that there aren't direct care workers because they don't get paid enough to handle that job. It's a very demanding job. And if you're not paid as much as you can make when you work at McDonald's, you don't last very long at that job or you have to have two jobs in order to support your family.
And I think that people's kindness and their thoughtfulness and their care about what happens to people with retardation, sometimes has to stop where they have to care for their own families. They have to pay the rent. I understand that this hearing is to provide a plan for many areas.
My question is what has happened with Governor O'Bannon's 317 plan that was provided by the task force that he activated many years ago.
That plan was brought about with the work of parents, self-advocates, legislators, professionals all working together. It was a plan that was accepted by parents, self-advocates, legislators, and the public as being very workable. It was based on personal center planning. It was still being used in the closing of the New Castle State Developmental Center. It was used in the closing up of the Northern Indiana Children's Hospital and proved itself to be extremely workable.
It is, I think, the plan that you're talking about here which is already in action in Indiana. It was funded partially over the last biennium with 39 million dollars and it is still being used in bringing people out of Muskatatuck State Development Center out of Fort Wayne Developmental Center. It's apparently very workable.
Anyone that I have spoken to or I have heard speak who knows about the 317 plan is very pleased with it. I know it may not cover things for the elderly and some of the other populations that you're talking about. I do not see why FSSA has to spend time, energy, money coming up with a new plan when there is an available plan already in the State of Indiana.
What we really need, I believe, is increased salaries for direct care staff, reasonable reimbursement rates for the services that are being given, so that providers can get workers, keep workers, and that workers can stay with a job that they love but find themselves economically unable to stay with.
I hope that FSSA as far as those with mental retardation and development disabilities goes would stay with the 317 plan and waste no more time on planning something new for our population at any rate. Thank you.
(Applause)
MR. SYBINSKY: Thank you, Judy. I have a letter, a testimony from someone who signed up to testify today and asked that I read this as her testimony. And I'm going to do that right now before we move into opening it up for other folks.
My name is Teri Carr. Due to my work schedule I have a conflict unfortunately and I'm unable to be here for the public comment portion of this meeting.
I would like to register my opinion in regards to this subject.
Regardless of your final decision, unless you address the breakdown of the current system, it will not support families and individuals in either setting.
Until you recognize the fact that people who require support systems at any level can't wait for the ridiculous length of time necessary to gain access to the services needed. The day has finally arrived that as a service provider, concerned citizen, and most importantly as a parent, I'm able to speak out against the system that allows someone who has never met me or my child the ability to determine our fate.
Once you place a portion of the decision making process back in the hands of those who know the individuals best, I believe you will see progress.
Thank you for the opportunity to voice my opinion today, and that is from Teri Carr.
(Applause)
I also have a letter from Kristine Krueger of Goshen.
Carrie, here is a summary of the testimonies I received." The people who were here were unable to attend, and asked that I present this.
Catherine Young who has epilepsy was placed into a nursing home after having suffered from illness for a long time. She had lost strength in her arms and legs for medical reactions to some medications given to her to control her seizures.
After being discharged from the hospital, the doctor, wanting her to rest and regain her strength, sent her to a nursing home. While she -- while there she never received the therapy that her doctor prescribed and was to be administered by the nursing staff.
Since she was neglected and not receiving the care or therapy she needed, she left the facility. Catherine was fortunate to leave on her own because she had a little money with her and had checked herself in.
Catherine feels from firsthand experience that nursing homes should be better monitored. Doctors shouldn't have to place recovering patients in nursing homes to recuperate. There seems to be no community services or providers to help people return home and recuperate.
And Miss Young lives in Elkhart, Indiana. Sylvia Jackson currently lives at Greencroft Nursing Center because there is lack of support services and providers available for individuals to remain at home and/or with their families. She also has been limited with the help she can now receive because her assessment is on her 'capabilities,' not her limitations.
She is restricted to a small amount of hours in which she can receive help. With such a limited amount of hours per week for assistance, she is struggling to get basics done, like groceries, supplies, laundry, et cetera.
Her finances are very tight and she worries each day about what expenses to save for or how to cover her needs. Because of limited help she is unable to pursue her interests or be a more productive advocate for people with disabilities.
For Sylvia there is no community-based system that will help her maintain her independence, give her help or support, and there seems to be no alternatives available that will give her choice of a place to call home. And that's Sylvia Jackson and she's in Goshen.
I'm now going to move to testimony from the people here who have not signed up. Although as I said several people called in last night and I would like to give them first opportunity. If they can raise their hand, I will ask them to go first.
If you could, please, ma'am. If you can identify yourself and give us your address. Thank you.
MS. MUMMERY: My name is Karen Mummery. I'm from Crown Point, Indiana. The reason I'm here today is that I have a five-year-old child has Autism who we are currently funding a home program for.
We have been dealing with our legislators down in Indianapolis, the Commission on Autism that have been drafting some legislation recently.
We do not -- we do not meet the criteria for SSI. We don't receive any funding that way.
Currently there is an Autism waiver. There are 1200 children or people on -- with Autism on that waiver that are waiting. They are on a waiting list. That number has tripled in the last two years. Okay. The numbers for Autism given by the Department of Special Education have increased twofold over last year.
This is an increasing epidemic that we are facing. And there's research out there that shows that early intensive therapy for these young children with Autism can increase the quality of their life. It could mean not going into an institution 20 years from now.
There is also research out there that shows that if you provide this for young children with Autism, it could save taxpayers two million dollars per child with Autism.
You're looking at in Indiana that's three billion dollars. The underlying theme here is money. You have to fund these waivers to get these children services.
Currently we're contracting with an agency out of Wisconsin. That's a UCLA replication site that my husband and I are funding out of our pockets. It's costing us in excess of $20,000 a year to do this. We can not continue at this rate to do this for our child but we know that by providing her these services it's going to increase her independence and her ability to function in society.
It's just this -- this waiting list. There's also the problem with we have people coming into our ASA chapter meetings, don't even know what the waiver is. You're not getting it out to the community. Not to mention -- I mean the fact is that if they were to get on the waiver, we probably wouldn't be targeted for five years.
And according to the expert that we deal with, her window of opportunity is right now between the ages of three and seven years old. We have to supply her with this therapy now. We can not wait.
And you know we have been working with the Autism Commission and they are drafting some legislation. They are going to go to the House and Senate with it -- this year with it and they're asking for funding for 50 slots because they know that's all they can get.
So you know what do you do without the money?
MR. SYBINSKY: Thank you very much.
(Applause)
MS. MCNEAL: My name is Jill McNeal. I'm a parent of a child with Autism and I along with Karen have been going to the Autism Commission meetings trying to get things changed.
I just wanted to say a few things to that LCFA has identified principals it deems important as in the sheets that you have received that they want to -- states to take steps to prevent or correct current and future unjustified institutionalization of individuals with disabilities and ensure the availability of increased services and afford individuals with disabilities and their families the opportunity to make informed choices.
If you don't mind I'll put this down. What we feel Indiana needs to do is to exercise its options to declare people and, well, in our case, children with disabilities eligible for Medicaid without taking into account the parents' income.
I think if you could service children statewide, if you instead of using a waiver program, if you just declare children and people with disabilities eligible for Medicaid based on medical necessity, Indiana and any state has the option to do this.
All they have to do is exercise that option. If they do this, then the federal government will be required to provide in particular in the case of children -- well, actually people with disabilities from age 0 through 21, they could receive funding I believe it's 70 -- is it 70 percent, Karen?
Funding for EPS to keep funding from the government?
MS. MUMMERY: The same as medical dollars.
MS. MC NEAL: I think there is a 37 percent of EPS CD. Okay. They can get up to -- either it's between 50 and 70 percent funding for services from the federal government and so the State would have to come up with approximately 37 percent to 50 percent of the money to fund services.
This would be a solution for States. They could get a huge chunk of funding from the federal government to help meet the needs of people with disabilities in their community. And it also eliminates the problem of putting people on waiting lists.
As Karen stated with the Autism waiver waiting list, because they could get funding under Medicaid and they wouldn't have to wait on the waiting lists. That is the only way that a child or a person with a disability can get services through Medicare right now is to sign up on these waiting lists under waiver programs and wait for years and years and years and not getting any services, any funding, any help.
If Medicaid would declare these individuals eligible for Medicaid under the rule of medical necessity, you could eliminate the waiting list problem.
I also wanted to mention now this is a federal bill right now with the -- there's a bill before the Senate, The Senate and the House. It's called the Family Opportunity Act, and it would address the problem that in more than half the states, Indiana included, parents must relinquish custody of a child with a major mental health need because of the lack of insurance or Medicaid coverage.
The Family Opportunity Act would help working families who must now either impoverish themselves or hand their child over to the child welfare system to access health and mental health care after insurance benefits are exhausted. Once in foster care a child can qualify for Medicaid.
This proposed legislation, the Family Opportunity Act, would give states the option of providing a Medicaid buy-in for children with severe disabilities who meet federal disabilities criteria.
It would also extend access to home and community-based services for children with severe mental disabilities. So, you know, if you're concerned with this issue of meeting the needs of children with -- children and adults with disabilities in the community, it would be in everybody's benefit to support the Family Opportunity Act to contact the Senate and the House regarding this bill.
So, that's all I have to say, thank you.
(Applause
MR. SYBINSKY: Anyone else who has called in? Okay. I would like to -- I'll take hands and we'll just go on a first-come, first-serve basis. Ma'am.
MS. PATRICK: My name is Roni Patrick and I am a Medicare waiver case manager as well as a person with a disability obviously.
My own experience aside, as a waiver case manager I've seen many families forced to deplete their funds and their emotional stability to assist their child with a disability, adults, children, meaning adults as well. We're talking about people 22, 30, 40 with disabilities.
The core issue obviously is the funding. And I repeatedly have to tell families we have to get the funding. We have to get money.
I don't understand what Indiana's problem is in funding this. From what I understand we have a surplus here. We also were awarded tobacco monies from -- from the lawsuit from tobacco hearings so I don't understand what the problem is. Why do I have to tell these families we can't help you? I also know families that the one family member or -- yeah, one child has a disability and then the other family -- the other brother or sister also has a disability, they have been waiting on a list for four years but the other brother or sister is on the waiver. I don't understand why there is that difference.
Why can't Indiana fund these families?
I also had something else...The issue also is about caregivers, too, on getting the funding that they need. And I see a lot of caregivers that are very committed to the job that they are doing.
They see the importance of supporting people with disabilities in the community. But the funding isn't there for them. Agencies can't give them insurance benefits because they can't get paid for the services that they need to employ good quality workers, so where's Indiana's commitment?
Because we have caregivers in the community but where's our State's commitment in serving people with disabilities in the community? I mean Family Social Services Administration's motto is "Helping People Help Themselves." Are you really helping us?
I know one guy what was at NISH, Northern Indiana State Hospital, and at the time that he moved out he was banging his head on the wall, banging holes in the drywall because when he was in an institution that was all that he could really do.
Now three years later he doesn't do that any longer. He's engaging with people. He likes to jump on the trampoline. A lot of things that are being developed within himself. But in an institution that development wasn't happening.
It's better to serve him in his own apartment with roommates or without in the community because he is an American. He's a human being and he's a Hoosier. So please -- if Indiana could please serve those that live in their own state, disability or not, we would really appreciate it.
(Applause)
MR. SYBINSKY: The fellow in the back, please.
MR. ARMOGOST: My name is Larry Armogost, A-r-m-o-g-o-s-t. I'm from Hammond. And going through the document that has been provided to us today, I notice on the very first line Indiana is in the midst of a paradigm shift but the entire document is written supporting this single point of entry system that we have now by throwing more money into it.
I've listened to these ladies speak about their frustration with the waiver program. As late as two weeks ago an individual with a disability called the local triple A and asked about the waiver system and was told the waiver is closed. We are not taking names but thanks for calling.
This is ongoing. The only way that this can be solved in my opinion is through a paradigm shift like it says on the paper. That could be done by maybe having consumer-based controls. What a concept.
All through the document we talk about professionals. We talk about case managers. We don't talk about people with disabilities that have a better understanding of what they need than anyone else. This State could be served much better by FSSA if they would in fact get some people together like they are talking with the slide show but let's leave some professionals at home where they belong.
Let's get some people with disabilities out there. Let's get some advocacy groups out there so we can accomplish something rather than this plan-to-plan mentality that Indiana seems to have. Thank you.
(Applause)
MR. SYBINSKY: Next gentleman who has his hands raised. Your cane up.
MR. BENNETT: My name is Amos Bennett and I work for Everybody Counts Town Center here in Merrillville. And we are disappointed, however, not surprised, by the exclusionary process that FSSA has taken in warning the service providers, of advocates, and more importantly people with disabilities in this particular area about this hearing, about this document that you guys have passed out today.
However we were fortunate enough to after asking and jumping through a few hoops getting a copy of the document of the plan that you have. A draft of it at least. And we then talked with some other people across the State that are advocates and down South they have had this thing for a while now.
In addition to that they have also received a letter asking them to be part of a task force. We haven't made it to that point yet and I really don't understand why this keeps happening. But it's very unfortunate and it's very unfair for the people here in Northwest Indiana. And we have to be honest about it and talk.
And speaking of honesty, that sort of leads me into my second comment.
In this plan after reviewing what we have here, it states and it uses words as if FSSA voluntarily closed down some of those institutions that warehouse some people with disabilities, some people with mental disabilities. However, what actually happened and again we are going to be honest here, what actually happened was that these people were being abused, the residents of these facilities were being abused.
They were being neglected and some ended up dying. So, you know, I mean that's -- that's pitiful. And so let's be honest. FSSA did not close those facilities. Those facilities were closed and there was a big uproar about that. Okay. So if we planned on making a concerted effort to get Olmstead passed to implement it as a law and to get people out of those institutions and prevent others from going in and having community-based services, then let's start off by being honest and let's put the real deal out there and then let's proceed from that point. Thank you.
(Applause)
MR. SYBINSKY: Okay. Next. In the back in the center.
MS. GROSS: Your paperwork here with the processes of filing for the waivers at Medicaid --
MR. SYBINSKY: Excuse me. If I can ask you first of all for your name and address.
MS. GROSS: I'm sorry.
MR. SYBINSKY: And I think your voice may not carry too well up here to the front. Could you come up to the mike so that everybody can hear you? Thank you.
MS. GROSS: My name is Susan Gross. Do you need my address?
MR. SYBINSKY: Yes, please.
MS. GROSS: 3140 Highway Avenue, Highland Indiana. I'm a grandparent of a little guy with CP. But besides that, talking about the medically fragile part of the Medicaid waiver, the paperwork from FSSA gives you the steps on how it should work.
I find it very confusing. Isn't there something simpler to give out to the parents or whoever the caretaker is for these children or people with disabilities to understand about the waivers? That's it.
MS. RUFF: Look at the voting in Florida.
MR. SYBINSKY: Thank you very much, Susan. Next person I think is with the glasses.
MS. TORRES: My name is Theresa Torres. I'm here in Merrillville.
You read a letter earlier from a woman who talked about how important it was for us to move forward and some honesty to actually start, and that's something that Mr. Bennett here said. And I want to echo that.
We talked about getting input from the people and this is a room full of good people but only a handful of people who are directly impacted. And those are the individuals that ought to be here today.
I think it's going to be very important as Indiana develops its Olmstead plan to actually talk to the people. As many people as I talked with, my staff has talked with, I'm not comfortable saying I can speak for all of them.
Surely FSSA has the ability to get into the facilities and talk to the people. That's who you need to hear from. You really need to do that.
Another thing for Olmstead to really work in Indiana, to work in any state really, the state has to make a commitment to see that the ADA, the Americans with Disabilities Act, is being complied with by all of its State agencies, cities, towns, and this is what Lee Strong was saying. It's not going to work.
People are not going to succeed if we have to say we have to go out and develop new programs and new systems. Yes, we do need some. Indiana has an inadequate personal care program, personal care assistance program.
We can give you horror stories about people's attempts to access services through the local triple A and through their interaction through the staff there and there inability to file a complaint without worrying about retaliation.
I'm concerned about our seeing this as something which requires us to go out and get a bunch more money to put into a system that already isn't working. What we need to do is make what exists work effectively or do it differently. We need to have people complying with the ADA. A person gets out of a nursing home and goes into the community and can't access transportation and can't get into a grocery store and can't go to the doctor. It's not going to work.
So Indiana is already compelled to comply with the ADA in many areas other than that which Olmstead impacts directly. And to be honest, and as Mr. Bennett said, we need to be honest if this is going to work.
In Indiana we are nowhere near in the work in our cities, in our towns, and in our businesses, our state agencies and those agencies with whom you contract for services. Let's make sure that those currently existing mechanisms are up to speed so that there will be welcoming to the people as we get back into the community. Thank you. (Applause)
MR. SYBINSKY: Thank you very much. The lady in the black coat.
MS. CHAJA: My name is Barbara Chaja. And I hope you can hear me because it's a little difficult to get up there.
But I wanted to ask about the funding formula which is put out. You are only allowed so much services before they recommend you go into a nursing home.
Now the formula is by income. And -- not by income but by services that you need. And if you need a certain level, you're forced to go into a nursing home. Now the person that needs a little more care could still be at home but because they are so over the cap, they are forced into a nursing home. And most of it is supplies that they need. They are not getting any from Medicaid, Medicaid waiver or Medicare.
They are buying their own supplies out of their own pocket. Is there some way we can adjust this so it's a little more better?
MR. SYBINSKY: We'll take that input and go down and talk to the programs affected. We are not so much answering questions right now, there were a lot raised already but we'll get the input -- if we can get your address, I'll try to get an answer for you. And where are you -- could I get our address?
MS. CHAJA: 1311 West 61st Avenue, Merrillville. 46410.
MR. SYBINSKY: Could you please spell your name?
MS. CHAJA: C-h-a-j-a
MR. SYBINSKY: Thank you.
MS. CHAJA: Barbara
MR. BENNETT: I didn't get that. The funding formula for what?
MR. SYBINSKY: Could you repeat the funding formula that you were -- was that for Medicaid?
MS. CHAJA: That's for Medicaid waiver. They have a cap where the services you need, if it exceeds a certain amount, then they recommend you go into a nursing home even though you are still able to function at home, but you need just a little bit more services. Somebody coming in more often or helping you dress and stuff like that with dressings. But because they charge you for each person that comes into the home, you're only limited to so many people.
MR. SYBINSKY: Thank you very much, Barbara. Next.
MS. CHAJA: I was going to say, too, the funding that's -- the funding formula does not take into consideration the rent that would keep you at home versus the rent that you're paying in a nursing home.
MR. SYBINSKY: Thank you. The gentleman with the blue sweatshirt and raised his hands. Again, name, address.
MR. ROMAN: My name is Luis, L-u-i-s, Roman, R-o-m-a-n. I hope everybody can hear me. I live in East Chicago and I work in Merrillville at Everybody Counts.
My first comment is the ultimate format. We sign in Braille. Also we need this on cassette and disks. Okay. And, Miss Tonk, you can mail this stuff to Everybody Counts, 9111 Broadway, Merrillville, Indiana 46410. Okay.
The second comment that I have is in regards to according to the -- this integration planning process and the document, Olmstead not only pertains to nursing homes but nothing was mentioned in the document about the process that's going to be taking place or happening with sheltered workshops. That's also included. Okay. I don't know if it's been thought of or what's going to happen with that. But definitely that's something that needs to be taken a ook at. Okay.
The other one I have is this document talks about state agencies and things of such. Here again it's a document -- going over the document nothing is mentioned about those state agencies such as vocational rehabilitation, centers for independent living, and what have you. A thousand different types of these assessments have been made and I don't know if additional ones are needed. But this Olmstead talks about people going into the community along with those agencies, the housing authorities need to be included in that process too. Because the people are getting out, where are they going to live at? Okay.
So that has to be something that has to be looked at as well.
MR. SYBINSKY: Thank you very much, Luis.
The lady in the back. Yes.
MS. INCH: I hope you can hear me because I can't get up to the mike. My name is Mary Inch, I-n-c-h. I live in Dyer, Indiana and I live in a nursing home.
In 1993 my father -- my mother got very ill and my father was my only caregiver. I had home health coming in through Medicare. Medicare denied me after six months. I could not afford to pay a caregiver to come in and bathe me three days a week which would have been more than what my check was. So in 1994 on April 7, it was determined by me and my father who was 83 years old who could no longer care for me, I entered a nursing home where I have been for the last six and a half years.
I do not belong in a nursing home. All I need is for someone to do the bathing, dressing and the toileting because I do not have the strength or the dexterity to do these things for myself. All I need is some place to live, some place to clean my house -- someone to clean my house, someone to cook my food. I can purchase it myself, assuming I can find a way that doesn't cost an arm and a leg to get to the store.
Which I am even capable of working. I am a student at Indiana University Northwest. I have made the Dean's List the last two years and I have a 3.85 GPA and I am able to work. I am stuck in a nursing home because I can't get out, because I can't afford to pay a caregiver. I don't have the money. And I don't think that's right.
MR. SYBINSKY: Gentleman in the back with the gray sweatshirt.
MR. ANTHONY: Miss Torres is going to help me because of my speech. Because my speech some people can't quite understand. Okay. In this the state plan I want to know how many people with disabilities who are going through these changes. My suggestion is people without disabilities, everything that was said by Larry and Shirley, people without disabilities are making decisions for people with disabilities. And they don't have any idea what they are doing, what the decision -- what the situation is. All I'm trying to do is tell the State when they make plans like this, give people on the planning committee that have disabilities that are going through this so they have an idea on the planning committee so people that are going through this so that they will have an idea of what's really going on. And they, the people with disabilities, would show people what is needed and what is not needed for their lives. And I am done.
MR. SYBINSKY: Can I get your name and address, please?
MR. ANTHONY: Christopher Anthony, 3488 Industrial Boulevard, Gary, Indiana.
MR. SYBINSKY: Thank you very much, Christopher. Lady in the blue jacket.
MS. SUDOWSKI: My name is Georgine, G-e-o-r-g-i-n-e, Sudowski, S-u-d-o-w-s-k-i. I'm a utilization reviewer and discharge planner at the Methodist Hospital in Merrillville, Indiana in my day job, and I'm also a board member of the Indiana Association of Mediators.
And one of the things that I have noticed in this area is that there are no community mediation facilities so the people with disabilities can address their disabilities with the people who are involved their care.
I've written case management articles about having mediated plans of care. What I find with people with disabilities is that somebody dictates a plan of care for them and they don't have to live with it. And it's very difficult to live with something that's dictated by somebody else. You have no reason to participate in what somebody else dictates to you.
You have no buy-in. Why would you buy in to something that nobody else -- you know, they don't know what your life is. And I -- I don't know what to propose.
I have some things that I brought along here. There's Collaborative for Conflict Management in Mental Health but it's easily applicable to other areas for disabled people. I can mention there is a facility -- one thing that we have in this area -- five schools of nursing, probably schools of social work that do not include their students in the community as part of a community-centered approach where they pay back some of their grant money or scholarship money by working for the community.
And instead just get to walk away free. There's a lady who could very well work, be trained to work in the community and we are wasting it. She wants to work and we are not doing anything.
So I'm going to leave this off about the Collaborative for Conflict Management in Mental Health knowing it's just as applicable for other areas. Thank you.
(Applause)
MR. SYBINSKY: Thank you very much, Mary. In the back the person with the pink shirt.
MS. FLORES: Yes. My name is Melva Flores. I live at 36 Luber Boulevard in East Chicago. I'm happily married. I have four kids. Today living happily, tomorrow we don't know what the future means to us.
But I must say that we need to look up to people like Olmstead to help people with disabilities to keep giving into the community because I don't know where my husband will be tomorrow; and with my low income, I don't want to be paying for the nursing home and I wouldn't let anyone pay for a nursing home. I want my kids to come home and visit me when they get older and say Mom, we have a life to live together and we have a future ahead of us. And there's many people with disabilities that are not being heard. That are not being heard because people that live in the community have hopes and dreams also.
Just because we have a disability doesn't mean that we have to be put in a nursing home and locked up and throw the key away. People that live in nursing homes have no hope. And I feel that the Olmstead, that Medicaid can help us and help really make a difference as the people that live in Indiana. If it's -- if it's passed elsewhere and people have hopes and dreams, then we have the right to also wait for that dream also.
So I feel that you can make a difference in our lives today because I don't know what's going to happen from today and my kids need to have answers for tomorrow. So please listen to us being heard today.
(Applause)
MR. SYBINSKY: Thank you very much. MS. CHAJA: I know one thing out of 127-bed nursing home, 21 people have bed sores. Because the care is not there that would be provided in a home.
And some of the supplies needed aren't being supplied either like the incontinence supplies, they have to be bought out of pocket. Sterile gloves have to be bought out of pocket. Other types of supplies that that. I wish you would add that in there too.
MR. SYBINSKY: I would ask those people -- there are some -- if there's anybody else with the kind of specific comments relating to substandard care in a licensed facility, if they could get that information to me or one of the people who I have pointed out here, we will get that information to the Department of Health and that's basically what we want to do. What we want to do is make sure that the standards are upheld.
We are starting to get people that have things to add. We are starting to get people that have things to add. I would like to get people that have not yet spoken.
The lady in the back next to the closet. Thank you.
MS. COOK: My name is a Diana Cook. I'm communications manager for two of the mental health enters in Lake County through an organization called Geminus Corporation.
A couple of vintage faces in the back will remember in the mid- to late-'70s I did some speaking out and tried to make in roads in -- across a variety of disability areas and I heard the FSSA make mention of the Internet and your linkages to that which I commend you for.
The Internet has opened up the world to all of us but particularly for people who may be homebound or institutional bound and have the extra money to pay for Internet access which again is in -- a lot of people don't have that extra money to get on the Internet.
I want to offer to the FSSA to add to our mental health linkages any information about the Olmstead Act and your process if it is helpful and I'll leave the information with the coordinators out front. Thank you.
MR. SYBINSKY: Thank you very much, Diana. The lady here.
MS. SIMONS: My name is Mary Simons. I am a consultant. I do work with Step Ahead in Porter County on the community capacity studies on services for the disabled. I haven't heard any mention of how -- what role the results of those -- of those studies will play in this planning process.
But I would like to simply state for the record the concerns of that group which did involve a significant number of inputs from disabled individuals themselves. Included again what has been mentioned before, the Medicare waiver issue, in particular certain categories of the waivers in Porter County are even three to four times as long a waiting list as in other parts of this -- of Northwest Indiana.
The housing issues again that have been mentioned before. But just for the record I want to reiterate that through Porter County the transportation and also the personal caregiver issue.
So...
MR. SYBINSKY: Thank you very much, Mary. Ma'am?
MS. KITT: I happen to be connected with the local care giving agency. We handle the developmentally disabled persons in all of Lake County. We also do a lot of Medicaid work -- waiver. I just want to say that the people who do the care giving that are in on the front lines are being asked to do much more than just care giving. They are asked to transport or they are asked to use their own funds to help feed families that are in distress. We pay the best rate for any caregiver in Lake County.
You know why we can do that? We are a non-for-profit agency and our Board of Directors has said if we get a lifting from the state, it goes to the caregiver because that's the person that's on the frontline doing the work.
That's how we operate. And I'm asking the State and the Medicaid waiver: These people can't afford $2 a gallon of gas and do the job that they have to do with taking the person into the community, into his job site, into socialization.
You can't ask a person to do that that only makes nine fifty an hour. So you have got to lift those ceilings for us, please.
MR. SYBINSKY: Ask you to give us your name.
MS. KITT: Oh, yes, Respite Care Services, Adj Kitt, Director, 6525 Columbia Avenue, Hammond.
Incidentally, I want to know how do we get a list of your task forces because I want my agency on that task force?
MR. SYBINSKY: We will get public information.
MS. KITT: Thank you. Because I didn't know of this meeting. This came secondary. I don't know how you publicized this either.
MR. SYBINSKY: Anyone else? Yes, sir.
MR. SHOAN: My name is John Shoan. I'm Associate Director of Transportation for LCEOC in Hammond, Indiana.
I would also like to reiterate the need for affordable public transportation. As our counties grow, more and more residences are being put in rural areas.
More and more jobs are being accessed at off hours and, in other words, folks work different shifts. They never know when they are going to work and a lot of folks that are getting into the work force have transportation problems. The problems are that there's transportation out there; it's not always affordable for them. The different types of transportation that are affordable, there's a lot of private providers, but it costs me -- it may cost anywhere from 10 to $40 to get to work and back.
Most people that are making 7, $8 an hour can't afford that if they are only working four to five hours a day.
It's a huge problem, public transportation, and one of the things that there is not a regional -- totally regional transportation system. We are a system that tries to cover all of Lake and Porter County but we do that with only a small number of vehicles.
There's been other public transportation providers that have withdrawn from the business because it's -- they lose their transportation funds because it takes local matched dollars to come up with those.
A lot of the transportation grants all require a local match and without a stable source of funding locally, to be able to maintain those dollars, it's very difficult for transportation providers to survive.
So I would like to make sure that transportation is brought into the planning process on the front end and not at the rear of the program and I think it's extremely important that it be made affordable for the people that need to use it.
MR. SYBINSKY: Thank you very much. More persons to testify?
MS. RUFF: I think I have something to add.
MR. SYBINSKY: If I can go in the order. Theresa you had asked.
MS. TORRES: I just wanted to ask that the woman over here mentioned where she knew if there was some problems and you said to make sure that you file a complaint. All you have to do is read the headlines. All you have to do is go to the website. I mean what basically happens when a complaint is filed, is what? There's a report written and they get a fine, and then somebody comes out and they paint the walls and then it happens again.
Reality is the system doesn't work. Not only the home health system but also the nursing home. So she can file a complaint.
We have helped many, many file complaints. And what happens they are retaliated against and the ombudsman says to them, I can't guarantee after you filed this complaint that you won't go back today and get beaten. That's a reality. That's what people are living with. Okay.
So we can come up with all these nice words with personal centered planning. The reality is when people file complaints, they are at risk of retaliation. And your own ombudsman can attest to this. They'll tell them that. So that's a bad thing. So moving away from that bad thing means we really have to be sincere with their effort.
We really need to get past the frontline people. Just one other comment about providing payment to frontline providers, frontline services. Many, many, many states are looking to finding something a little bit out of the ordinary and that is rather than someone like Iris being the recipient of a provider, she's the employer. And she hires and monitors and fires her own assistant services. That's not going to happen.
You talk about saving money, if we'd get rid of some of the middlemen, we'll save a lot of money.
MR. SYBINSKY: Thank you, Theresa.
MS. KEATING: I am Ursula Keating from Hobart, Indiana. I wanted to make a comment to the fact that many services that should be available for some reason do not quite make it to Northwest Indiana.
For instance, in the field of mental health, particularly, and also Alzheimer's disease, early onset of memory lose, of which I myself suffer, I have the big thing in my head. But at any rate, I think there are -- really services should be provided to the step child of the Indianapolis -- how shall I say, powers that be, because we have really not a single patient support group for Alzheimer's patients or patients with other reasons.
It doesn't have to be Alzheimer's. It could be dementia. Could be invisible brain damage. It could be all kinds of things. We should have such services here in Northwest Indiana. It is very difficult to convince anybody in that field to do that outside of Indianapolis or Chicago. And I really feel that is a crying shame.
The other thing that I also think is very important to put up here for discussion, is the Choice program or I don't know if the Choice program that I'm referring to is the one that Mrs. Maria Calavonic is administrator of in Area 1. That is in Hammond. And she has made a very compelling statement that the people who are eligible to go out into nursing homes usually do not get the funds which are less expensive than the cost of being in a nursing home, to go back to affordable housing.
And because that is not possible and we have, with all due respect for any service organizations here, we certainly have a very strong lobby for nursing homes and assisted living facilities. They are springing up like mushrooms all around.
Do I need to say anything more? There's a very strong lobby and a very big business. And I think that is something that maybe your organization should look into. The cost efficiency between having to have a person put in an assisted living or nursing home if they can afford it or if it would not be for the state much less expensive if they would implement more generously the Choice program.
(Applause)
MR. SYBINSKY: Thank you very much. The gentleman in the back by the window.
MS. KEATING: I wanted your free toll call to Indianapolis. Do you have a free toll call number?
MR. SYBINSKY: The 800 number -- Joyce.
MS. ROGERS: I'll get it.
MR. SYBINSKY: We'll get it and we'll announce it at the end of the meeting. Okay. Gentleman in the back by the window you have a maroon or burgundy sweater on.
>THE GENTLEMAN: I just couldn't hear.
MR. SYBINSKY: You couldn't hear. Okay. Sir?
MR. O'KELLY: My name is Dave O'Kelly, Lake Station, Indiana. I'm associated with Everybody Counts Town Center for Independent Living and I just wanted to say that I believe in freedom of choice in the system of living and I think Mary Inch over here is a shining example of why it's a right to choose to become a part of society and get into the community and make themselves productive exactly why they should be able to do so.
I was just here to, you know, give my complete and utter backing to -- my moral support to the issues here, and me and two others arrived almost an hour late, by the way, because of transportation issues that Mr. Shoen was talking about a few seconds ago due to miscommunications I guess it was. Thank you.
(Applause)
MR. SYBINSKY: Thank you very much. Okay. The second time around. Please.
MR. ARMOGOST: Mr. Sybinsky, the document also makes reference to targeting individuals that are at risk of going into nursing homes as being more cost effective than actually facilitating getting people out of nursing homes and back into the community for very good reasons because they have had to get rid of everything they own in order to get Medicaid to help them -- to get them into the nursing home.
I find that kind of problematic if, in fact, we target one group over another group. Also people over the age of 65 appear to be in the same boat as people with disabilities who are already in the nursing home and the fact that the document says it would not be cost effective to get those people out and once again that almost borders on discrimination. And any -- any task force that comes about, I would certainly like to be in on it, kept apprised of it or something.
Up here in Northwest Indiana we seem to have a real jet lag when it comes to information coming up here. The one lady, she was not informed at all. We were not informed of this meeting until last week. PSA announcements went out on the radio yesterday.
You know, I mean we need to be in the loop more. Yes. And there are some of us up here that -- that we are deliberately left out of the loop. But there are others that those people down south certainly couldn't have anything against and certainly they are left out of the loop as well. And we need to remedy that situation and we need to remedy it pretty quickly I would say because we have an awful lot of important input for your task force, for your -- for whatever you call them. It's not going to be easy to make these things work and we have one of the finest advocacy organizations in Indiana, in the United States as a matter of fact, in Everybody Counts.
And we need to be part of the process, and yet we are left out. And so I would put it directly to you. Please sir, include us. Thank you.
MR. SYBINSKY: Thank you very much.
(Applause)
MR. SYBINSKY: Yes. You first and then the re-address since he's a new person, and then you two folks. Is there a way we can get that mike to you?
MR. JANICK: My name is George Janick and I represent no one but myself. I'm basically a user of the services and any kind of plan or facilitation which is offered by organizations or the group.
And being fairly new to the disability community, just within the last five years, it gives me an interesting insight as to a lot of the problems that disabled people with lower level disabilities like myself do encounter.
And I too have been a victim of many of the services and problems that occur today and that are being challenged on an ongoing basis by the State.
The problem is that the plans are ongoing and they have never provided any kind of impact or any kind of peek into resolving a lot of the issues. I too have been a problem of transportation problems for a number of years until I got in a position or in a situation that I could in effect provide my own transportation. I can tell you there is nothing more frustrating than being caught out in the middle of nowhere at some ungodly hour because you were assured of transportation whether it was provided or you paid for the services and no one shows up. And you have no alternative.
You don't know who to call. It's probably one of the most -- no, it's more than frustrating. It's a genuine fear because you have no idea where to go, how to get help, and who is going to come and get you. Because you are disabled to begin with, people are reluctant to come by and help you out because they have all kinds of excuses. That's just from one standpoint.
And I can honestly say that I was truly victimized by a local concern that I wouldn't name, but very large in the disability community, and that has undergone a lot of managerial and directorship changes over the last number of years.
There's more chaos in the organization than there is stability and they offer false hope to the people that look forward to their services. If you don't -- you know, I guess there's a lot of truth to the statement I have heard many times "You need to walk in my shoes or actually ride in my wheels before you can appreciate the problems and the fears that people have to go through."
The other issue also is the State's vocational services. I've had an opportunity to be involved in that arena and for the most part the people who work the services do the best that they can with little or no resources or tools. But even going outside of that venue, going out into the public sector, applying for meaningful occupation. I'm not looking for people -- most people in the disability community aren't looking for a job. They don't want to sit there and sell pencils and push pens. They want to develop a career.
They want to be -- they, like every other employee, 18 want to feel that they're an important part of the team; that they have meaningful contributions. They want to pursue a career opportunity.
They are being stymied. Why? Because most employers -- and I can tell you this from a fact because I too at one time was on that side of the fence, meaning management in industry. Industry is very reluctant to do anything with the disability community. They will ascribe by the letter of the law and no more. But the law goes much further than that.
There is a spirit of the law that's important and that's never been given any kind of emphasis by state and federal agencies. For the most part they too discriminate against people with disabilities because they have that constant fear that gees, if we hire one there's going to be a flood of these people over here. And, my God, what's going to happen to our organization then?
The bottom line will suffer. Our accountabilities will be shattered. And this goes on and on and on. This is a daily occurrence. This is not something that is isolated to one particular industry, one particular element in a private sector. This holds true for State agencies, State employment opportunities and all the way on through the federal government because everybody is too worried about covering the back side and whether or not their accountabilities will be met and whether or not they'll get the Christmas bonus as to whether or not they can honestly employ somebody that will have not only a lot of opportunity to contribute but to become a meaningful member of the team.
So if there is anything that you do in your organization or your plan, which is nice to write it down on paper, the problem is are you going to turn around and actually implement that and put some teeth behind your plan more than anything else.
(Applause)
MR. SYBINSKY: Thank you very much. Madame.
MS. EATON: My name is Rita Eaton, and I supervise the supportive employment program here at Southlake. And I guess we can basically see what the theme has been for the last several comments.
It's about transportation. And that's where I do have a president -- my president of Southlake started out and he mentioned one of the largest barriers we have is the lack of transportation, and we've heard it throughout this whole meeting practically.
>It's very frustrating to get to our meetings with Voc. Rehab. who funds our program and the person having a smile on their face because they think okay, I think I'm ready to get employment now.
Someone is going to assist me. We ask the question: How are you going to get to work? They usually have no transportation.
We have used some of the local transportation venues here and it absolutely costs too much for a person who's working part-time hours, making anywhere from five fifty to maybe $8 an hour to spend $20 on transportation.
So I would just ditto what everybody said about the transportation issues and ask that you include in your plan some kind of monetary provision for people trying to get back to work.
These are 3 people who are motivated to work. They want to get back in the employment arena and they want to be successful citizens. So I just ask that you include that.
I know you've heard it over and over and over again. I've heard it practically at every meeting I have been to. I haven't seen the fruits of it yet. I'm hoping that there will be something monetary that will be done for people with disabilities that want to work. Thank you.
MR. SYBINSKY: Thank you very much, Rita.
(Applause)
MR. SYBINSKY: Okay. Miss Ruff. You have been waiting patiently.
MS. RUFF: Yes, I have, and you might not like to hear what I have to say. I'd like to know if this community dialog is going to go past Governor O'Bannon's desk. Is he going to know about this?
MR. SYBINSKY: Yes.
MS. RUFF: Yes. He is? And I have something for Mr. O'Bannon to realize. I'm a voter. My family is voters. My neighbors are voters. My friends are voters. Their friends are voters. And right now, Mr. O'Bannon's popularity is really declining so that might be something that he wants to think about next time he puts his name under any bills. Thank you.
MR. SYBINSKY: Thank you very much, Miss Ruff. Ma'am.
MS. LONGFELLOW: My name is Gina Longfellow, and I work for Everybody Counts. I live in Crown Point. I'm an advocate for the deaf and what most deaf need.
What about the deaf program? They need to provide all different types of things, like job sources, a lot of different things. What about the deaf? I don't see the State planning anything for the deaf.
(Applause)
MR. SYBINSKY: They are included in this effort. Thank you very much, Gina. Anyone else?
MS. MUMMERY: I'd just like to say one thing. Getting back to --
MR. SYBINSKY: Could you go to the mike, please?
MS. MUMMERY: Sure. Getting back to what you were saying about Governor O'Bannon, I think it's very important, especially families that are here, they need to get in touch with their legislators and tell them -- the people that represent them -- tell them what their issues are and get on the website, Indiana Access, whatever it is, and see what the Senate bills and the House bills that are coming up.
There's commissions on Autism, mental retardation. There's commissions on every disability out there. These are people that are making decisions. You're taking this back to the Governor and the bottom line is what's going to happen.
You know I've talked to Kathy Gifford. We told her what other states are doing as far as Autism is concerned. This is something that Medicaid is covering in other states. They choose not to in Indiana. That's a directive she can make. She's chosen not to make it a directive. She's chosen to put it into the legislative field and let it go into the House and get voted down because the bottom line is money. Going to cost them money to do it.
You know, these -- you know, the commissions going and they are asking for 50 slots to be funded on the waiver. There's 1200 people waiting. What good is that going to do when next year they go into their interim session and they start talking about what they're going to do for the following year. It's going to increase another four hundred people. It's just ludicrous.
You know I've had people from the legislature say to me, you have to realize Indiana is a conservative state. They don't want to spend their money. You're talking about the 317 task force. That money is gone.
We have been told by the commission on Autism appointed by the Governor that the money is gone. It's been used. We've also been told that Medicaid is in the red. It all comes down to money.
You know there's a senator, a representative, who has been trying for five years to get some things passed as far as SSI. Indiana's requirements to meet SSI criteria is one of the highest in the country. There's only two states in the United States that use the formula that Indiana does. One other state uses it. Every other state in this country does not use that formula. Therefore, making it harder for families to get money to provide the services.
We have people that are in this area that I wouldn't let touch my daughter with a 10-foot pole. I have seen people that are sitting -- that are qualified Medicaid providers at Impact that don't even have the criteria that they say they have. It's a vicious circle.
She says supply the money. It's not going to do anything. What I have learned in other states where they started supplying money to provide services is that you attract people who are qualified to treat these people. And that's what you need.
MR. SYBINSKY: Thank you. Karen Mummery; right?
MS. MUMMERY: Yes.
MR. SYBINSKY: Thank you very much, Karen. Amos.
MR. BENNETT: Amos Bennett again. In this planning document there's a -- there's information in there concerning the assess process. It speaks here to the assessment being done by a doctor or a professional. Then goes on to say that "the assessment should also -- or the training to do the assessment should be geared towards some family members and even neighbors.
That's a conflict I really don't understand. That these people are going to be deemed professionals as well, and what about informed choice of, you know, that particular person with a disability.
I think when, you know, the committee is formed to look at this assessment process they really need to focus on, you know, other ways and other means of making sure that people, you know, have informed choices as well as this whole process of making the assessment whether or not a person should be in the nursing home or in their own community.
MR. SYBINSKY: Thank you very much. We have -- we have about a minute left before we have to start leaving the room. But, if I could -- Barbara, go ahead.
MS. CHAJA: Medicaid, if I'm in a nursing home you have to turn over all of your assets and they return you $30 a month. How are you going to afford a telephone or television or any other luxury you might want on $30 a month at our prices today.
There ought to be some kind of a formula for that.
MR. SYBINSKY: Okay.
MS. CHAJA: The nursing homes are making out like bandits.
MR. SYBINSKY: Thank you very much, Barbara.
MR. BRAUER: A few months ago I was in a nursing home. My name is Jesse Brauer, 2818 177th Drive in Hammond.
Now I had to work to get out of it. Through my daughter's help I was able to get out of it. But you can't live in a nursing home on $30.
Like she said it's impossible. You can't pay for your phone. And a phone is a luxury that you have to have. To be able to talk to your relatives, you have to get in a wheelchair, you have to roll down to the nurses' station to make a phone call and they're listening to everything you say. It's no privacy.
And then some of the things that I seen in the nursing home give you nightmares. It give me nightmares and I'm glad to be out of it. I'll tell you what, you'd have to kill me to put me back into one. That's all I have to say.
MR. SYBINSKY: Thank you very much, Jesse. There was a request about the 800 number. I didn't have it in front of me. The number that we have got is 1-800-545-7763. Press zero, identify yourself as having questions relating to Olmstead or community integration. 1-800-545-7763. Press zero and ask -- and ask for Office of Community Planning.
Ask for the Office of Community Planning after the zero.
Let me give you the website, FSSA's website, so that you can access the information we have available at that site. That is 1 -- I'm sorry. It is FSSA, www.in.gov/fssa.
MS. KITT: How about your TTD number for the hearing impaired?
MR. SYBINSKY: I will get that. If you can identify yourself as hearing impaired, wait here at the end. We will get that number to you.
MS. KITT: We handle some hearing impaired so I need it.
MR. SYBINSKY: Yes, we'll get it for you. Otherwise I would like to thank you all for coming and for spending, I think, a very, very productive morning with us here. Thank you very much for coming and we look forward to working with you to make this process a resounding success. Thank you.
(The hearing was concluded at 12:05 o'clock p.m.)
STATE OF INDIANA )
) SS:
COUNTY OF LAKE )
I, DARLA R. ALLEN, CSR-RPR, do hereby certify that I am a court reporter doing business in the State of Indiana, County of Lake; that I reported in shorthand the proceedings at the given hearing held on November 15, 2000, and that the foregoing is a true and correct transcript of my shorthand notes so taken as aforesaid.
___________________________
Certified Shorthand Reporter
Registered Professional Reporter
Notary Public, Lake County,
Indiana
My notary commission expires
February 17, 2001
ILLINOIS CSR NO. 084-003523
RPR NO. 025085
