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BEFORE THE INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
IN THE MATTER OF: INDIANA'S PLAN FOR THE COMMUNITY INTEGRATION OF PERSONS WITH DISABILITIES
TRANSCRIPT OF PROCEEDINGS
PETER SYBINSKY, HEARING OFFICER
PONDEROSA STEAK HOUSE
NOVEMBER 16, 2000
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Sybinsky
Bernie Tidd, Psychologist
Muscatatuk State Development Center
Written comments attached as Exhibit 1
Written comments attached as Exhibit 2
Written comments attached as Exhibit 3
Written comments attached as Exhibit 4
Southern Indiana Center for Independent Living
Written comments attached as Exhibit 5
Written comments attached as Exhibit 6
Kim Dodson, Director
Government Relations & Development for the Arc of Indiana
Mary Porter, Outreach Coordinator
Southern Indiana Center for Independent Living
Comments from people not in attendance:
Paula Baylor, Written comments attached as Exhibit 7
Barb McAtee, Written comments attached as Exhibit 8
Renee Sheffer, Written comments attached as Exhibit 9
HEARING OFFICER SYBINSKY: I am Peter Sybinsky, Deputy Secretary of Family and Social Services Administration. And because I know everybody has long distances to travel, we'll try to keep this as much on time as we possibly can. So we'll start on time. I'd like to ask, for interpreter purposes, if there are deaf people who will need use of the interpreter? We would like to shift her into place where she'll be most convenient for people who need interpreter services.
So are there any people who need interpreter services could you raise your hands?
Okay. She'll stand by, then, for people who may come in.
I want to welcome you all to our third meeting, our third public meeting on Indiana's Plan for Community Integration of Persons with Disabilities.
We have a interactive opportunity here between FSSA and public persons with disabilities, advocates, providers. An opportunity to build upon a good work that's happened across the areas of human services and to improve what we do and to in some cases totally redo what we do, if we have too.
And this planning process is an opportunity for all of us to work together in that effort. I'd like to introduce a few people here because this planning effort is authorized and ordered by the executive order by Governor O'Bannon.
It has, of course, our interest attention and very strong support at the top levels. And so we brought out folks from the very -- from central office to make sure that we hear, that everybody hears, from FSSA what you have to say.
I'd like to introduce those folks to you. From our mental health area, I have Mr. Willard Mayes who is Deputy Director of Elderly and Mental Health Services; Andrew Clatte, who is Chief of the Bureau of Elderly Adults and Persons with Disabilities in the Mental Health Division;
Ellen MaClimans, is our Assistant Deputy for Developmental Disabilities Services. And where is Geneva Shed? Geneva Shed is our Deputy Director for Aging and In-home Services.
We're really grateful for them to come down but it gives us, I think, a side of our commitment to hear what you have to say and to begin a dialog with you that will result in better services for people with disabilities and better integration into the community for persons with disabilities in Indiana.
I'd like to introduce also our court reporter. And to let you know that everything that you say is not only recorded but we're taking it down on paper. It's going to be a record; it's going to be an official record of these meetings which we will be able to use, all of us, for records and for quality, good input that will be generated here and has already been generated in the other two meetings.
These records will be, certainly, a basis for the work that we do.
We also have our interpreter; she is Dorri Klatfelter and she's back there.
The meeting has two major components to it -- oh, excuse me. I'd also like to thank Roger Hubbard and Ehren Bingaman. They are from the Office of Planning and have been really important to making this happen.
This process today has two parts. One is a brief slide show which summarizes the plan that we're going to be -- planning process that we're going to be engaging in. And then we have an opportunity for you folks to respond to that plan and to outline your goals, your visions, your concerns with the system and the systems that we have today.
So without further adieu, I'd like to go into the slide show, and then we'll move to the testimony very shortly.
The purpose of our effort is to provide-- our joint effort is to provide FSSA with information to assist in the development of a comprehensive plan which is going to improve and expand community-based services and supports for persons with disabilities.
Second issue is to assist us in the development of goals. It will eliminate unnecessary institutionalization and support consumer choice and self-determination.
Now, we can't do these things on our own. I think the government model of the task, which we're all familiar with, is government -- it sort of does its things with technically perfect people who have technically perfect ideas and then we try to work it in the community and it doesn't quite work. And we've been trying at FSSA for many years to move beyond that model and to work with various constituencies, to work with consumers and their families. And it is very, very important that we relook at those efforts that we've had to make sure that we talk to the people who are served and who need service, and the people who serve them and advocate for them in order for this thing to happen to these services, for the best kinds of services to be created and delivered in Indiana.
This comprehensive plan is important in many ways. We are actively seeking information and advice from all effected persons, and this meeting is the first step in that process. I want to emphasize it's only the first step in that process.
We are very, very interested in not only doing some other things that are going to get information and advice, but also finding new ways that we can do that. And so we are going to be putting out every opportunity that we can to get input and to get your ideas as to what we need to do.
We also need your common vision so that we can focus on moving forward with the many different efforts that we currently have together, with a common vision. We can mobilize ourselves to act with common purpose and to really get things done.
We also need to identify majors goals and values in common because these are the bases of all priorities. And really, when we get into the question of resources, we get in the question of the availabilities and funding and all of the things which sometimes serve as big barriers. Those priorities are a vital concern.
We need to figure out for sure how we're going to achieve this vision. In the Mental Health area and the Developmental Disabilities area and the areas of Aging and Services to persons with physical disabilities.
We have been working together to achieve some visions and to develop some mechanisms on how we're going to achieve them. Are these working? Where do we need to change these? Do they need to be only touched up or are there some major revisions that need to be made? What are the areas that we have to focus on? All of those things are important to achieving the vision. And, finally, to set measurable objectives so that we can actually measure any success we will achieve.
If we don't achieve success then we need to go back to the drawing board. And when we have measurable objectives that determine whether we're there or not, it will really help us with that process. Our commitment, first, is to replace unnecessary institutionalization with community supports and services. Indiana has moved very quickly in the last few years to move people into community placement, not only in mental health, developmental disabilities, but certainly with respect with aging programs.
There's a lot that we can and need to do, and our commitment is to make that happen.
We also have a commitment to include persons with disabilities, families, advocates and providers in the development and implementation of the plan. If we don't have your involvement, we really are going to do things that you don't like and then they're not going to serve your needs.
And our commitment is to improve upon and do better; interaction, involvement with the persons affected. And this is, again, one of those efforts to make sure that we start that process and improve that process. And, again, we make this commitment to set measurable objectives so that we can measure success so that we can all agree upon where we are.
The process that we have developed to involve this is a combination of government and community. Within FSSA the secretary has appointed me, Deputy Secretary, to head up Community Integration Action Team consisting of the top officials of each of our major programs for the mentally ill, for the developmentally disabled, and for elderly persons and persons with physical handicaps.
These folks have the control of the resources, and have been working to, you know, to certainly develop and improve their systems over the years.
Our commitment is to, and the secretary's commitment, is to make these work together better and certainly to come up with a uniform plan with uniform priorities and processes so that every area is treated fairly and everybody has an equal opportunity to work on this process. We are responsible for finalizing and providing the report to the Governor.
But very important to us, and very important partners in this exercise, are advisory subcommittees which will be appointed in each of the areas.
These subcommittees are essentially going to review the individual areas to look at integration, community integration, issues and to help us develop this plan because, basically, each area is going to develop its own subplan which will contain the most important dimensions for each individual area.
The process also includes community dialogue. Not only do we need to work with an advisory subcommittee of people who are going to volunteer their time and expertise to work with us, but we have to involve as many different ways of reaching the many ideas and visions and problems you face in other ways.
This community meeting is the first of a number of different mechanisms, and it will not be the last community meeting. We will be coming out again during the process to make sure that we touch bases with you and review what we're doing with you, give you a progress report, and we will have a meeting at the end of the process so that you can give input on what we've come up with.
We are also going to develop interviews and focus groups. We're going to be working with people who, in-depth, can give us a real strong idea of how they are affected by the various processes and programs that we have, and their ideas in detail on how we can solve the problems we face.
FSSA has a Web site for -- which has been dedicated to community integration issues. And at the end of this slide show, we will have the Web site address and we will be very open to not only providing information through that Web site but also getting information from you, getting ideas and thoughts from you through that Web site.
The Web site will contain all the materials, updated materials, on whatever process we are involved in at a particular point in time so that people across the state can, through their personal computers or through a library, access where we are with what we have at a particular point in time.
Finally, we want your ideas on how we can get input from you. There have already been at the other public meetings several ideas relating to the mechanisms for community dialogue that we will be able to put into place. And any thoughts on how we can better interact with you, better get input from you, we would welcome, not only now, but you can also let us know if you think of something over the next few weeks.
But our commitment is in put at any time, in any way. Finally, the planned documents that we're going to produce are going to be two in number.
First will be a preliminary report to the Governor in December, the year 2000. It will voice the basic goals that we have developed as a result of your work here and your participation here, and also the budget recommendations for the years 2001 -- or the biennium 2001 and 2002.
The second planned document is going to be in June of 2001 which will go into more detail on the goals and will include how we achieve them and the changes we're seeking with the ideas and priorities over time as to how we're going to identify resources that we will need, how we will achieve those resources.
Our measurable objectives and expected outcomes that are going to help us to determine whether we're successful or not successful at particular points in time.
This are various ways that you can get us electronically; through a 1-800 number for people who want to phone in with ideas. We have a number dedicated to that: 1-800-545-7763. Our TTY number is 1-800-962-8408. And the Web site is https://webcms.in.gov/fssa/.
At that address you'll come into our Web site and you will see a link to the community integration materials, and please use that link to get into what we have right now on the Web site. We're going to show this again at the end when we're ready to leave so that you can copy this down if you haven't had the opportunity up to now.
And that concludes the slide show, and I'd like to now go into testimony. We have a number of persons who have -- we've asked that you call up and notify our office to testify and a number of people have so done. We also have left a list by the door of people who would like to testify, and people have signed up at the door.
I would like to ask that because of the large number of people we have who are interested in testifying that we limit testimony to three minutes initially.
We'll go from the people who have asked first by who have signed up ahead of time to testify. Then we'll go to people who have signed in here. And then we'll go to people who feel -- who maybe didn't sign up but who would like to testify.
After that if there's anything anybody wants to add to their original testimony we can take that. That way everybody who's come to testify and to speak can get an opportunity and if there is extra time at the end, then we can get into detail or anyone who wants to do that who has already spoken.
So what I'd like to do then -- we have a microphone. Ehren is going to walk around, Phil Donahue style, and get to the person who is going to be testifying. I'm going to call the first person and that's Philip Robertson.
PHILIP ROBERTSON: Hello, I'm Phil Robertson. I'm from Ramsey, Indiana. That's in Harrison County; that's the home of the Governor.
So -- and the reason why I'm here is 'cause I have a daughter and she is 24 years old. Whenever she was born, she was born with multiple disabilities. And we've taken care of her and through the schools and so on, and the schools did a pretty good job. And we probably left her in school a couple of years too long, 'cause she was ready to get out.
And basically that's where she's at right now in our family. She's ready to move on; except for the last three or four years, we have not been able to find any type of, if you would, group home. We're not that crazy about a group home but we can't find one either in our area.
So that's my major concern. And there is not one in Harrison County for young females. And the way I understand, you know, the group homes may be something that they're planning to go to some other type of less restrictive type environment, which I would definitely be in favor of. That's all I have.
HEARING OFFICER SYBINSKY: Thank you very much, Philip.
Karen Marshall. Karen Marshall.
Okay. We'll move past Karen and if she comes in, we'll go back to her.
BERNIE TIDD, PSYCHOLOGIST, MUSCATATUK STATE DEVELOPMENTAL CENTER
Hi, my name is Bernie Tidd. First of all, I want to say I appreciate the opportunity of doing this. I'm a psychologist at the Muscatatuck State Developmental Center. And I've had some concerns for -- ever since the Department of Justice was at Muscatatuck.
I've formerly worked for the State of New York, and the superintendent who's there now, we worked at the same facility together, so we've all ready discussed this. What I've advocated for a few years is that the State also be a provider in the community in terms of providing both residential and programmatic services.
But New York does. They provide -- there's four sectors that provide services both programmatically in terms of program services, as well as residential services. The State does that; ARC does that; UCP -- United Cerebral Palsy -- in the private sector. And New York is extremely advanced in what they do. They were providing services for 30 years in the community.
I worked at a regional center when Jackie Bouyea was there. And that regional center opened up in '74. So we were providing services to people in the community for 30 years. So what I had been in discussion with the former superintendent was making a visit to Broome Developmental Services in Binghamton.
We're both familiar with those people. She and I talked about it the other day. I was in the process of doing that two years ago with the superintendent and he was let go. I still think it would be extremely valuable to do that.
There, you know -- they have a lot of different types of -- this is a picture -- and I'm going to leave this with you.
They do things by counties. In Binghamton there were six counties, there are six regional offices. We had apartments, we had waiver bed homes, we had State-operated community residences, family care homes, clinics. A whole array of services. And this here, just pictures, this is just one state agency. There's four upstate and four downstate.
My personal opinion is I don't think from the experience that I have had in the community -- and I've worked in had every type of residential setting there is.
Day treatment programs, I've had clients in day-treatment programs. My former clients went to the ARC day-treatment in a state-run day-treatment program. I was also a psychologist at a state-run day-treatment center near Canada.
My personal experience, my professional opinion is I don't think that the private sector alone without the state's involvement will be successful. I've had major concerns the last two years and having the opportunity to express my opinion.
My recommendation would be for them visit what they do there. I do know those people. They've been -- I've been in touch with them two years. In fact, I spoke with them the other day about a training manual for the facility.
I'm working on that for the State. And that we do that -- and, secondly, to a visit, I would say that the State needs to be involved in providing residential and community services for these people; otherwise, I don't really think it will be successful and that's my personal and professional opinion.
HEARING OFFICER SYBINSKY: Thank you very much, Bernie.
She might have been up in --
Hello, I'm Randy Pierson, and I'm a local resident and I'm also a pre-op transsexual lesbian, which I doubt you've heard very much with the -- information with the other meetings.
I've had my problems in the past and in the present with the various agencies with not being able to help me with my goals with what, you know, I want to work on, with understanding that, you know, I've been in transitions for this long, and I need to find a certain type of job, use this certain type of restroom, this sort of thing.
And they've really been a kind of a hindrance all the way from voc rehab to the shelter workshops. In the past, I've even, like, tried to do some volunteer work at a shelter workshop up in Bloomington. And, you know, over at Johns, you know, I just came up to them and let them know right off that, you know, I'm a transsexual.
No way I can help out. You know, I mean, what's the harm? You know, hey, I'm just a person, you know, trying to help out and this was at a carnival. And, you know, that's first of the many, you know, things, you know, that, you know, have happened to me.
And I'm willing to being on any kind of subcommittees or anything like that, you know, within the state to help get this going, to help the transsexual with which doesn't get any kind of recognitions or, you know, any kind of help at all.
And I also have e-mail too.
HEARING OFFICER SYBINSKY: Thank you very much, Randy.
Thank you for this opportunity to express my strong support for improving and expanding community-based services and supports for persons with disabilities.
I'm Linda Witsman. I live in the small rural settlement of Burns City, which is 13 miles north of Loogootee, and next to the Naval Weapons Support Center approximately halfway between Bloomington and Jasper.
My husband, Steve, and I are the parents of a daughter, Stuckey, who will be fourteen next month and has Down syndrome. Our son, Caden, will be thirteen tomorrow and has autism. These are my children. Kids with autism are visual learners, so I always bring my visuals along.
Stuckey was the first child with a significant disability to attend her neighborhood school. Caden also attends his neighborhood school, as well.
These two children have paved the way for many others. My children attended three preschools. They attended the developmental preschool with small class size and more staff per student, their local preschool where they and their neighborhood peers could get to know each other, and another very good preschool seventeen miles from Loogootee which has an excellent teacher who was exceptionally good at including children with disabilities with their typical peers.
I was on the road constantly for years chauffeuring the kids from preschool to preschool. They didn't realize they were working hard at being educated and being included. They just thought they were having fun.
I have worked so hard for the last fourteen years overcoming the attitudinal barriers that existed for my children and it has been a resounding success.
I found it necessary to give up my federal government job and the medical benefits that came with this employment in order to open the doors of community support for my children.
I now work for ATTIC, an independent living center, and INSOURCE for wages that don't begin to cover the times I put in and no health insurance. It was a sacrifice I had to make in order to integrate my children into their community.
Although it is well worth the financial loss to me, no one should have to do that any longer. My children have Medicaid Waivers which they received after a long wait and being lost in the computer for a year.
We use these Waivers as creatively as we can to assist them in accessing their community. Stuckey plays YMCA basketball and won the sportsmanship award thanks to the Waiver.
Here are pictures of Stuckey in the WMCA program and the sportsmanship award. Her service provider attends practice with her -- just a little extra support for the coach. Stuckey plays in the games without the provider being present.
The natural supports of her coach and teammates are enough for her to participate fully, and you should hear the crowd cheer when she makes a basket. I must admit sometimes the referee is a little lenient on traveling calls, but, hey, Michael Jordan got a few breaks in that department himself.
Caden has benefited greatly from Waiver services also. A person with autism can be very socially isolated. Through the Waiver, we have developed many natural supports by hiring local college students who have family members, friends, and neighbors who have come to know
Caden and really love and respect him despite his obvious differences and sometimes strange behavior. They have become excellent problem solvers at knowing what upsets Caden and how to help him navigate what to him is a very confusing world.
So many of these people have gone on to be speech pathologists, special education teachers, occupational therapists, etc.; professions they never would have considered if not for their coming to know personally someone with a disability.
I could go on forever giving you examples of how Waiver services can benefit my children and other persons with disabilities and our communities as well, but I know our time is brief, so I will close by imploring you to continue to improve and expand services for our fellow citizens.
I see a future where persons with disabilities can live in their own homes with the assistance of paid and natural support. They will have real jobs and be contributing members of society.
There is no need to finance expensive institutions and group homes that always end up being warehouses that dilute the quality of life to zero. Please, please take advantage of the gifts all people have to give their communities and don't waste our precious resources on outdated situations that have been proven at best ineffective and at worst barbaric.
If you have any questions or would like me to elaborate more fully on any of these issues, please do not hesitate to contact me. Thank you again for this opportunity to contribute.
HEARING OFFICER SYBINSKY: Thank you very much, Linda. Excuse me, could we get the copy of what you just read? The court reporter will get it back to you.
MS. WITSMAN: Okay. And also I have two letters from other parents that were not able to be here.
HEARING OFFICER SYBINSKY: Okay.
MS. WITSMAN: And they forgot to put their addresses and phone numbers, but if you need these I can get them to you.
13 HEARING OFFICER SYBINSKY: I'd really like to have both of those, if we could. Thank you. John McCauley.
I want to thank you for this opportunity here. I want to tell you that I do believe in treating people of all kinds where they want to live. They have that right to live where they want to live.
I live in the nursing home in Columbus. I love it there. I do a lot of stuff. I'm learning to knit. I'm on a couple of boards in the state. First, the counsel where I live, and I do all this stuff. I do not want any law or any rule from the state that says you gotta live somewhere else.
Inaudible law says that people ought to have the right to live where they want. If that is in a home health aide, they ought to have that right.
We've got to have money to follow the people. We need at least some money from a state-run facility. You're saving money, but you need that money to follow the individual to their community.
When they closed central State in early 1990, I felt like that that was a mistake, but it wasn't. A lot of people do live, a couple of people died at the State hospital.
One person died from freezing to death under State because a window got broke and it wasn't repaired until Monday, and that's stupid. So I want individuals, I don't want State government to mandate where I live and when I live. mean that and I thank you for your time here and patience.
HEARING OFFICER SYBINSKY: Thank you, John. I'd like to move to the list of people who just signed in. Suzie Rimstidt, please.
You're welcome to stop me, 'cause I'm sure I have more than three minutes. I'm assuming that living in the community is more humane, more dignified, more opportunities for education, jobs, family interaction, social interaction, and choices of places to live.
People with disabilities, like all other valued humans, should have this opportunity and choice, which was certainly expressed more elegantly then I in the previous speaker.
I have a son who does live in the community who has autism. I also have a brother-in-law who has been at Madison State Hospital for many years. And I want to speak to a couple specifics. T
he plan down the road, but I think it has to be planned now: Any plan must examine and remedy the shortage, turnover, and quality of direct care employees in the supported living programs of the State.
And I mean supported living in the broadest sense for personal care, physical disabilities, TPI, developmental disabilities, or whatever.
In Bloomington, many companies run newspaper ads constantly asking for direct care workers. Families including my own see more turnover in caretakers than you see different faces at fast-food restaurants.
Agencies are turning down people with disabilities because the agency is struggling to staff the people that they are already committed to. Staff turnover is difficult and costly for agencies to deal with. It is certainly frustrating and in many instances damaging to persons with disabilities.
Think about it, a child in a two-parent home has difficulty when he receives two different messages from two parents. He may be confused in all kinds of ways that affect development, security, and self-esteem. Children and adults in supported living homes may easily have six to ten different staff persons in one week. When this staff turns over several times per year, there may be 20 to 45 persons who have been supporting the person with a disability.
While we want choice and dignity for people by placing them in the community, we need to think about the quality and the quantity of people we're putting in their lives. The best training in the world and the best communication and supervision in the world will still be a struggle, to say the least, to provide a consistent program to the person.
Better training and better pay are all I know that would affect direct care staff; working with people to saturate the community with additional people with disabilities who are currently in institutions. There certainly must be thousands of well-trained, well-paid, additional employees and perhaps additional residential providers.
Pay for direct care workers needs to be increased over the next few years to be equal to fast-food workers, greater than fast-food workers, and eventually on a comparable level with other skilled workers.
This often part-time job must be elevated to a desirable career, not a part-time fill-in job. Making it a career level job seems to only to be possible if in addition to drastically improved pay, appropriate quality training is done and provided on an ongoing basis.
The Olmstead Planning Committee should dream, investigate other states, and come up with a one year Ivy Tech Community College program of training. One comparable to LPNs or some other formal and hands-on training program that is not even related to the often current program of shadowing someone for four hours to two days who has only been on the job for a few weeks and was trained in the same way. Supervisors must also be given time and training to do more than train on correct paperwork.
Absolutely, people with disabilities belong in the community in Indiana. But we aren't going to be able to do a quality job of offering them this opportunity unless we turn direct care staff into career positions by training a whole lot better and paying considerably more.
I appreciate very much the opportunity to express this. I work for an independent living center also, and we do constantly want to keep people in the community and help facilitate their being in the community. I guess I would plead that we would have a role on some of these subcommittees, as well as some of our consumers.
HEARING OFFICER SYBINSKY: Thank you very much, Suzie. Could we get the copy of what you wrote? We'll get it back to you. Thank you very much. Paula Guzzo.
PAULA GUZZO I do also appreciate the opportunity to speak on these issues. However, I must admit I'm a little disgruntled in having to travel 163 miles and almost three hours to be able to do so. Evansville is a long way from here. So, please, in planning future meetings, could you have some that's maybe a little bit closer to the southern tip of the state.
I know there are families who would be here who are also e-mailing or faxing their comments in because they were unable to either leave their children with disabilities or because they have disabilities themselves that does not allow them to spend six hours in a day's time to come to travel.
Since the clock's ticking, I'll leave off most of my credentials other than the fact that my number one credential is I am the mother of 17 year-old son who was born with multiple disabilities, later diagnosed as Crane-Heise Syndrome.
And after being on a waiting list for three years, my son is also on a ICFMR Waiver and that's why I'm even able to get out and do the type of thing that I'm doing here today and also to work part time for INSOURCE.
My son was also the first student within the Evansville-Vanderburgh School Corporation with multiple disabilities to go into an inclusive classroom setting. And as a result of his success there and in the community was invited to be with President Clinton at the signing of IDEA '97. So we've been out there championing the cause for a long, long time and also trying to pave the way for other people.
Along the way what I have found within the State of Indiana is that attitudes are the main barrier to people with disabilities being served in communities. And in large part I think this is due to historically, the administrators of FSSA -- let me start over with that thought.
I feel like the State of Indiana is behind where we could be because previous administrations have not embraced the concept of community inclusion for people with disabilities as quickly as what other parts of the country was.
And as a result of that, I know what we're seeing is that the resources which need to trinkle [sic] down to community levels have been slow in going into the communities.
And I think building community capacity is paramount to the success of people with disabilities being able to survive within the communities. And here I'm talking about public transportation, housing, low-interest loans available for people with disabilities to even have the possibility of owning their own home.
Employment opportunities, recreation, leisure, advanced educational coverage opportunities, and also health care coverage. To take people and put them in the communities without these proper supports, we're doing a disservice to everybody and it's sure to fail if we don't have supports in place.
I don't think I have a lot to add to what Suzie said about attendant care, appropriate attendant care. Right now at my home, probably the ninth or tenth attendant this year is being trained as we speak in my home with my son.
Securing adequately trained personnel and then also tackling the issue of how to fund it certainly is instrumental in making all of this work.
And the other thing I questioned and just want to comment on: The State of Indiana is preparing to build a new state hospital in Evansville right now for people with mental illnesses. I think this flies directly in the face of promoting community inclusion. And I think the state and whatever committees we're on should take a long hard look at exactly what the intent of that facility will be and how it's to be used.
Also, the lack of Medicaid Waiver slots in this state is the cause of numerous families being placed in jeopardy of institutionalizing loved ones. The numbers of people on the waiting list and the length of time that one must wait is far too long.
Also, lack of interim supports within the state while families are waiting for a Waiver slot really needs to be addressed.
I'd like to give an example of one family I work with in the Posey County area. The mother has three children with autism, has been on a waiting list approximately two years and sees no hope of getting on a Waiver any time soon. The dad has had to take a job out of state. This mother never gets to sleep longer than two hours at any one time during an evening. She's home schooling one of her children because she feels there's lack of adequate support within the school corporation.
And there has to be some type of a program put in place and some type of priorities given to special situations like this, as well as just saying you're a number and when your number comes up, you'll be served. Because if we're looking as Olmstead is asking us to at what is going to cause institutionalization, this is a prime example here.
The mother may very well be the one who needs the help, as well as the children, if we don't do something about these situations.
Also, more dollars to fund the CHOICE program would certainly be helpful, whatever we need to do through the legislature. I think there are many of us in this room and throughout the state who are willing to tackle that one.
And, lastly, I want to just mention that right now in Evansville, a group of Christian businessmen have secured 133 acres and are undertaking a national fund-raising effort to build a segregated village which will house adults with disabilities, Alzheimer's patients, elderly residents, and ministers in crisis.
During public meetings, the supporters of Jacob's Village have quoted the numbers contained in Indiana's 317 Task Force Report in order to support the need for such a segregated community within the State of Indiana.
Many elderly parents of people with disabilities are welcoming this village because it offers them a place for their loved ones to go once they are no longer alive.
Unfortunately, right now the State of Indiana doesn't offer a viable alternative to them. And even though those of us who are disability rights advocates just totally detest the idea of a segregated village, it is easy to see where it does offer hope to people who are grasping at straws and not knowing what else is going to happen to their loved ones with disabilities.
So, again, thank you for this opportunity and I see this certainly as an opportunity for all of us to mobilize and move forward. And I think there's power in numbers and it seems we have the numbers, so let's do it.
HEARING OFFICER SYBINSKY: Thank you very much, Paula. Monica Smith.
I think I'll just sit. My name is Monica Smith and I moved to Indiana June of '98; moved here from Oklahoma City. I was on a Waiver service. Geneva, you probably remember my name.
Knowing -- when she was 5 years old, she was not eligible for the Medicaid Waiver until she was 7. So, at age 5, we put her on the list, so whenever age 7 came up, they'd be knocking down the door.
Well, they did knock down that door and as a matter of fact we did get the services. That was in March of 1992. And so we moved here in January of '98; we relocated here with Toyota. And was told I could not transfer that service with me. They said I had to get on another waiting list. So after writing Frank O'Bannon, Lugar, our senators in Oklahoma, Mr. Hume, and even the Council on Aging, the FSSA, basically everybody's passing the buck on who is the gatekeeper, really, in the State of Indiana for a program that is federally funded along with state dollars.
I feel like the program has been just ripped away from us just because I moved out of state and when I move into another state to have to get back on another waiting list when the money that we all ready had, federal money and state money, for her to regress.
We spent thousands of dollars in services from 1992 to 1998 and then just because we moved, to stop? By this all stopping, I have been able not to go back to work because I moved into a state where I have no supports, no family, to nothing to when I had it all before I moved here.
Should I have known what I was faced with coming here, I probably really wouldn't have moved here and kept my good quality husband at home, per say. But I didn't want to hinder his life. So I took the beatin' and I stayed home.
So I can tell you, though, from leaving Oklahoma to maybe possibly something that you all could look into -- 'cause I'm hearing people talk about trying to find a provider. Once you get on the waiting list, great. Well, then, where are the providers coming from?
People are not signing up to become providers probably because of lack of pay. So in Oklahoma they allot "x" amount of dollars to family members like myself. They mail you out 20 or 30 thousand and then you go get your providers. You pay them, you hire them, you train them. That cuts the cost of spending in different areas, but I'm not the expert in that area, but it would definitely be something to look into.
HEARING OFFICER SYBINSKY: Thank you very much, Monica. Denise Mullis.
SOUTHERN INDIANA CENTER FOR INDEPENDENT LIVING
Hello, I'm Denise Mullis and I'm from Southern Indiana Center for Independent Living. And so I represent persons with disabilities through my current employment. Just as a little bit of background: I worked 12 years in home health care. And during those 12 years I saw a change from it being a viable program that kept people in their homes to it being a program that made one cut after another.
And just yesterday Bloomington Hospital of Orange County announced that they would be closing their home care agency and joining the ranks of many, many agencies in Indiana who have closed their doors because what should be a service to our population has become somewhat of a charity thing where people can't make any money in home care.
I saw the experience of one of my friends who was receiving home care, but home care decided that his severe mobility problems and inability to do his own hygiene and his very unstable diabetes was no longer any reason for him to have home care.
And so someone up there that made that rule looked at all this savings of tax dollars because he was no longer eligible for home care. What they didn't see was the fact that he would have two very extended stays in hospitals and in rehab hospitals to deal with the decubitus ulcers that resulted from him having -- lacking the care that he needed to stay in his home.
I know that the other issue that faces people who want to stay at home is the fact that if you receive home care you are bound by law to be homebound. And so in addition to the other problems, people who receive home care become prisoners in their own homes.
I know that these are federal issues that we can't make a direct impact on, but we need to always be advocating that as a state we support not decreases in the amount of people who can receive home care but increases in the amount, recognizing that that represents a savings; that that represents another person who doesn't go in a nursing home.
In the meantime, for the State of Indiana we have two sources of other ways to look at this problem. And one is through CHOICE dollars. And I come to you as an echo of myself and many others who testified to try to get a piece of the tobacco money to increase the CHOICE dollars, and we were dismally disappointed in that.
The other thing is Medicaid Waiver. And I think we often fail to recognize that increases in Medicaid Waiver services are subsidizes by the federal government. They're not all Indiana tax dollars. But yet we don't expand our Medicaid services and we have untold numbers waiting for not only CHOICE but Medicaid.
I was fortunate to be among the pilot counties for the CHOICE program and as a employee in a home care agency, when someone needed CHOICE services it was a beginning program and I could immediately tap into it.
That's not the case now. When someone is in need of CHOICE services, they may wait two, three years. So that needs to be addressed.
I think we need to recognize that we are not lobbyists; that we don't have the dollars to have a professional lobbyist to speak for us, so we have to speak for ourselves and for the people we represent.
I want to be the voice of my friend who, because he could not get the care he needed in his home, ended up institutionalized for extended periods of time. I want to represent my friend who cares for her 100 year-old grandmother and has a strong determination that she will remain with her, that she won't go in an institution.
I want to be the voice and the plea for those who can't speak for themselves because there are so many that need to be here to tell their story today, but because of their disability or because of their lack of transportation or because of their inability to leave an institution they're not with us.
And I thank you for your attention.
HEARING OFFICER SYBINSKY: Thank you very much, Denise. We'll go back over the folks that I've called before who did not testify yet.
Okay. I'd like now to open it up to anybody who has not signed in and who would like to testify. If you could, please clearly give your name and address so that we can get it on the record. Thank you very much.
My name is Gary Gambino from -- I live at 408 North Water Street, Salem. I've got written testimony for you also.
I work with Denise and Suzie at the SICIL. I see consumers on a monthly basis. I'm at Boston County; I'm the coordinator for SICIL. And many of you in this room know what we do and for those of you who don't, we try to be a four-course services of information or referral, independent with in-school training peer support, and especially advocacy.
I see consumers on a monthly basis. And several of them actually would be in nursing homes right now if it weren't for some of the community-based services that exist in Washington County.
The only bad thing as Denise mentioned, is -- I'd like to repeat -- that some of these people are prisoners in their own homes because of a statement -- mostly federal regulations that require, you know, that require in-home services.
On the other hand, I'd like to introduce to you a gentleman -- okay, he is in the nursing home right now. I sprung him this morning. I've got to return him now, darn it.
Anyway, he is a bright, witty young fellow; he's 60. Several years ago, I think, had a -- what, a kitchen accident, Gary?
MR. GRAVES: No. It's a little more complicated than that.
MR. GAMBINO: Yeah. Okay. Well, the situation being he was stuck in a nursing home. He wants to get out of the nursing home desperately. But I consulted an ombudsman from the state, and she said because this gentlemen was on case management at one time, it would be pretty difficult to get him out of a nursing home setting.
I offered him several options, you know, we'll write our own nursing home placement from one to another one with, I guess, lower security.
And for whatever reason, he just wants to be out on his own or as independent as possible. And the nursing home has been very uncooperative. And this man, he was in the the nursing home -- and please talk to me privately afterwards and I'll spill what I know.
And without further adieu, here he is.
Hello, I am Gary Graves, as he said. I used to live in Salem till '82. I'm back here now, for the last 5 years, since I've been in a nursing home. I wanted to live in my own apartment but the government didn't like that too much. This and that and something else again. This is the place for you and that's the only place you can go. They won't allow you to move out of here unless you go there and you can't stay here cause he's selling the place, blah, blah, blah, blah, blah.
I'll tell you, thank the Lord for the situation, as good as it is. I'd be in awful shape if it wasn't for them permitin' me to be here. What I want to do was live in my own apartment with a nurse seeing me once a week or so. But that won't work. I don't know why.
I'm happy the way I am, though. It's better then it could be. There's a whole, whole other things that could be worse about me.
Well, when I was in the hospital the last time -- the first time -- they said to me, you know, sir, I wouldn't believe that you had what you had unless it was written down here on this paper. Most people can't see the difference between daylight and dark when they had what you had. They wouldn't be able to think about getting out of bed. You can.
Thank the Lord for that, you know. I can be a lot worse than I am. But thank the Lord, I'm still alive and I trust you folks to do the best you can for me.
HEARING OFFICER SYBINSKY: Thank you very much, Gary.
MR. GAMBINO: And just in closing very briefly -- I know my time's up -- but a couple of clichés here. I've seen buttons, bumper stickers, you know, things that say: I am not a case and I don't want to be managed, that kind of thing.
That's Gary Graves personified. And the other thing is: Our homes, not nursing homes. Sounds like a cliché but I just hope the great State of Indiana would see fit to make the Olmstead decision a decision to its fullest.
Thank you for your time and attention and have a good day.
HEARING OFFICER SYBINSKY: Thank you very much, Gary. Thank you to both you Garys. Next, anyone else? Back in the corner, please.
Hello, my name is Linda Simers and I'm from Osgood, Indiana, which is down the road a piece. And I am a private care provider. And it's like this: You can open up 50 Waivers for every Waiver slot and anything, but if you don't have the providers to provide the services, it's not going to do any good.
You're not going to have the providers unless you're willing to pay. 'cause you pay for what you get. And that's one of my concerns and I'm a private provider, so, therefore, I make less than if I worked for an agency, which is next to nothing. So that is a concern of mine.
Another concern is when a person is getting ready to get out of an institution, the people that make the assessments for that person to get out, what professional does that? It shouldn't be a professional. It should be the person that works with that person every day, and sees them and knows what they can and what they can't do.
I don't think it should be a person that comes in, stays for two hours, looks at them, says they can't go or they can go, or whatever.
I think the people who work with those people every day are the real people to make that decision. And thank you for your time.
HEARING OFFICER SYBINSKY: Thank you for your testimony, Linda.
MR. GRAVES: You know, it seems to me a little bit funny.
HEARING OFFICER SYBINSKY: Yes, Gary.
Mr. GRAVES: Not funny, ha ha, but funny, hum. If they want to evaluate you, whether you're going to move out or stay or whatever, the state always has somebody with a vested interest that's going to lose a great deal of money if you do move out to decide whether you ought to move out or not. That to me is a little bit funny.
HEARING OFFICER SYBINSKY: Thank you very much, Gary.
I'm Cary Whitman. I live in Paoli, Indiana. I'm a State employee. I have advocated for individuals who are differently abled for over 25 years both as my vocation and as my advocation.
And I speak now on behalf of hundreds of individuals who I represent or have represented here in southern Indiana. And I would like for recognition and action from the FSSA planning process on already existing state statutes.
Our agency is already on record and identifying statutes that already exist that would do much of what is being threatened by actions through the Olmstead decision.
Indiana Code 12-24-19.3 specifically provides an individual shall be discharged or transferred from state operated facilities to the least restrictive settings.
Subsection 1: When discharge or transfer is appropriate to that individual's unique needs; 2. To prevent unnecessary and continued inappropriate hospitalizations; and 3. In accordance with standards of professional practice.
Indiana Code 12-24-19.7 provides for transitional services to facilitate an individual's transfer from mental health institutions to community residential settings or discharge from such.
And that statute specifically calls for resources to fund the transition to be made available from the total funds allocated to the particular facilities, and it calls for adjustments to those funds to meet the needs of consumer demand.
It seems apparent that the Indiana State Legislature has already committed to the principle of least restrictive environment. Therefore, Olmstead v L.C. threatens nothing new to Indiana other than to follow its own statutes.
So excuse me and our agency for not being on the bandwagon or pat the state on the back for something they should have been doing for years.
At the very least, the position set out in this planning committee are being done because of the threat of action, lawsuit from the Olmstead decision.
We feel that the existing statutes, if implemented, if Indiana will go after the funds that they rightfully have access to through the federal government, they will keep reverting funds back to the federal government, there will be funds to do what people here are asking for and have a right to.
HEARING OFFICER SYBINSKY: Thank you very much, Cary. Next person. Anyone else? Right up here please. Thank you.
Yes, I'm Frances Donaldson. I'm work at ATTIC in Vincennes, which is an independent living center. And this is kind of a follow-up to what Gary was talking about:
About four years ago I did accomplish getting a person out of a nursing home; it took me eight months to do it. The nursing home censored all of her phone calls. They talked to the first -- we had three home health agencies before the fourth one would take her, because the nursing home would get to them and say, Well, she can't do this or she can't do that. And they would only spend maybe 15 minutes with her when they went to assess her.
The doctor that was seeing her in the nursing home is unlicensed. He walked down the hall once a month. He got paid. He actually saw her twice in three years. And he refused to sign the paper to get her assessed.
So I went to the nursing home; I brought a person with me that had a van that would transport her. The nursing home wouldn't transport her to an outside doctor.
We got the assessment permits then, and it still took us about six months before things could be worked out. But she lived in her own home three years after that before she had to completely give up.
But she had the aged and disabled Waiver which meant that to keep her home health, she was not allowed to leave her apartment. And her apartment that I got was completely wheelchair accessible. But we had to wait for somebody to die to get it, because there's not that many in our community. There's none practically.
So it is very, very difficult and the government kind of works against us because they allow the nursing homes to censor her phone calls. When I went to visit her they sat in the room or right outside the door where they could hear what was discussed. And they held it up for almost nine months.
HEARING OFFICER SYBINSKY: Thank you very much, Frances. Anyone else? I'd like to get through everybody -- if we could get through everybody who might be interested in speaking, then we'll get back to second times.
KIM DODSON, DIRECTOR
GOVERNMENT RELATIONS & DEVELOPMENT
FOR THE ARC OF INDIANA
I'm Kim Dodson and I am the Director of Government Relations and Development for the Arc of Indiana.
And I would first like to state that the Arc is very committed to working with the State in implementing a Olmstead plan they decide to go forward on.
I would also like to thank the State for holding public meetings around the state. And I agree with Paula, it would have been nice to have more, as we've had lots of calls from families and advocates who would love to be here but are unable to do so because of the long distance that they would have to travel to attend.
The Arc of Indiana can only echo the many statements that were made here today from families, advocates, and self-advocates. So I would only like to stress just a couple of things, because I know we are running out of time.
The first and foremost, Arc of Indiana really stresses the need of the State to change its current system. The waiting lists in Indiana are entirely too long, and waiting three to five years for services that people needed yesterday is by far from being a reasonable or prompt time manner.
There is also a critical need for direct care wages to be increased in Indiana. We strongly agree with meetings services out in the community. But if people aren't out there to provide those services, we are jeopardizing the lives of those that we want to live in the community.
In closing, I would really just like to say that, most importantly, people with disabilities and their families deserve choices on where they live and who provides services to them.
And, again, I could only echo everything that was presented to you earlier today, and I would just really like to express the Arc of Indiana's commitment towards the state in seeing a plan implemented.
HEARING OFFICER SYBINSKY: Thank you, Kim. Anybody else?
Okay. Now we'll give folks an opportunity to add to previous -- you already did two. Wait. Let me get Mr. Tidd's first.
Dr. Sybinsky, thank you. I'm Richard Simmons. Today I'm with the Indiana Council on Independent Living. We work across disabilities and we're very interested in seeing it implemented.
First, I'd like to say that I'm a veteran of the armed forces and I draw V.A. benefits. I get my equipment, medical supplies, nursing help and stuff. I don't have to fight V.R. to get my van modified near my home, instead of having it sent out of state. I don't have to fight with V.R. to get my wheelchair repaired. I've had a disability -- really hasn't made compared to the civilians with disabilities.
Being able to survive outside of an institution. Even though I work with disabilities a long time, it wasn't until I was put on the council that I worked across disabilities.
It was only a few weeks ago that being moved from an institution into a group home is not the end goal. The end goal is to move out of the group to a more individualized setting once supports and systems that they need that the state provides in accommodating the person in an individualized setting after they leave the group home.
HEARING OFFICER SYBINSKY: Thank you very much, Richard. Anybody else to testify?
Okay. We'll follow up now and go back to Bernie Tidd.
MR. TIDD: One of the things, you know, there's so many things we could probably talk about. I think one of the things that many people are saying is about the quantity of services that are available.
There is a deficiency in that right now in terms of the availability of residential services, first of all. And, second, programmatically in terms of the program services people do.
I've gotten the impression when New Castle first closed I felt that we're not going about this right. I seen the other side of what happens. It's not as easy as what people think. There's a lot to it. The first place is having a residential setting available and then what kind of services are we going to provide these people?
I know when I was work for the State back there, there was around 30 of us as psychologists and there was more of us that worked in the community to maintain people there than what there was at the developmental center. And that's not going to be any different here then it was there or any state.
You need a full array of clinical services in the community. And in addition to direct care providers -- and what you said -- if everything the people are saying is true and that's why I still emphasize those points -- I think that, you know, if we can just access those -- and I would, you know, myself personally, the research that I have available to the people from New York -- and they have volunteered to have us come there.
I know the people there and they wouldn't have any problem with that, and Jackie Bouyea does too. I would be willing.
And there's another manual that I had given John Hill before; it's called The Key. It's community-based Waiver system of services.
Max Chmura is the author of that. And we have that at Muscatatuck and I've given it to some folks in Indianapolis. I gave that to them two years ago. I think that would be helpful as well.
Anyway, I think -- what I'm just trying to say is, is aside from the residential services, there is a compliment of clinical services that need to be maintained in the community.
You have psychiatric services, dental, medical. The psychiatric, medical, dental are the three that are prominent in terms of doctors refusing clients initially or thereafter. And so there things I just wanted to add to it.
I think the folks in Indiana need some outside consultation.
HEARING OFFICER SYBINSKY: Thank you Bernie. Randy Pierson, I think you were next.
MR. PIERSON: Some other things I need to add with my case is that along the way I found out that I'm not eligible for any kind of Medicare insurance or Medicaid.
There's certain guidelines to that. I'm not eligible for group home or disabilities, which in my case right now I'm kind of limited to living at home with my family. And finding jobs, you know, is real hard too.
So -- and I don't know what kind of solution or things are going to have to, you know, come from this to try to help people like me in Indiana. But I feel kind of stuck, you know, where I'm stuck, you know. Some of them aren't.
Some of them, you know, have really gotten along well with their lives and, you know, have jobs and that sort of thing. But I'm just kind of wondering has that gone so far and just, you know, can't go any further.
And I know too, you know, if, you know, if I could have a job or even be able to be in a group home which could help me be, you know, independent, you know, which I'm not now -- so, you know, put the state on notice that, you know, to kind of help, you know, some.
HEARING OFFICER SYBINSKY: Thank you very much, Randy. Anyone else?
MARY PORTER, OUTREACH COORDINATOR
SOUTHERN INDIANA CENTER FOR INDEPENDENT LIVING
My name is Mary Porter, and I work for the Southern Indiana Center for Independent Living. I'm Crawford County's outreach coordinator there. I'm also a disabled person. And I really -- I have a family that I've been working with, and yesterday I made a phone call for them to see where they're at on the CHOICE program and Medicaid Waiver.
There's a terminally ill child that is still going to have at least a five-year wait. He's going to be gone before he becomes eligible for services. I mean, this is a child that's in the home and the grandmother is raising and she's trying to keep in the home and trying to keep the family together.
And it's a struggle for this lady. It is a real struggle, and I don't know, you know, -- it's at least a five-year wait.
And this comes from the Area on Aging, the ones that handle the Waivers. You know, what do we do for these people? I'm just frustrated, you know, what can we do? How do we get these funds in there to help these people sooner?
The answer to me was it was based on the time that they applied and not on the need.
HEARING OFFICER SYBINSKY: I'm going to ask you to talk to Geneva and see if there's, you know, anything in terms of the rules that affect that particular case. At least maybe you can get the name to her and -- I don't know whether there will be -- we'll be able to do anything with respect to that, but at least we can look into it.
And I do want to mention that we do have our state people here. If you would like to ask questions or point out things, please stop by and talk to them before you leave.
I'd like to remind you of our 1-800 number, our TTY number and our Web site. If you'd like to copy them down, we'll leave them up there.
I'd like to thank you also for coming today. Some of you traveled significant distances and we really appreciate that. We will stay in touch with you and look forward to further dialogue with you as we proceed in this process.
Thanks again for coming.
(Hearing adjourned November 16, 2000, 4:00 p.m.)
STATE OF INDIANA )
COUNTY OF JOHNSON )
I, Nancy L. Arnold, a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration, in the matter of Indiana's Plan for the Community Integration of Persons with Disabilities, beginning at 2:30 p.m. on the 16th day of November, 2000; That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief; IN WITNESS WHEREOF, I have hereunto set my hand and affixed my notarial seal this 28th day of November, 2000.
Nancy L. Arnold
Residing in Johnson County
My Commission Expires:
April 27, 2008