Transcript of Public Hearing Lafayette
BEFORE THE INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
OLMSTEAD PLAN DRAFT PLAN FOR COMMUNITY INTEGRATION FOR PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
PETER SYBINSKY, HEARING OFFICER
CONFERENCE ROOM
TIPPECANOE COUNTY PUBLIC LIBRARY BRANCH
627 SOUTH STREET
LAFAYETTE, INDIANA
APRIL 17, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Sybinsky
Public Comments:
Debbie Morgan
Donna Vanmeter
Kim McManigal
Jeff Darling
Ken Paclick
Ted Harris
Ken Patterson
Sonia Long
Gary Daily
Joe Hammersback
Sharon Wood
Mike Cruz
Nathan Coleman
Jane Hannibal
Ann Shallenberger
Debra Hayes
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: Good morning. I'd like to welcome you here to this meeting. On behalf of Governor O'Bannon and Secretary Katie Humphreys, I would like to thank you for turning out for this very, very important opportunity for us all to dialogue on community integration with persons with disability.
I'm Pete Sybinsky. I'm Deputy Secretary for Policy and Research of the Family and Social Services Administration.
To persons who are hearing impaired we have an interpreter here to assist with that, is there anyone in the audience who needs an interpreter or interpreter services?
(No response.)
If not, thank you very much.
Second, for Hispanic speaking people we have available an interpreter for persons who speak in Spanish.
(No response.)
If not, thank you very much. Today we're coming out to listen to what you have to say about the principles and ideas that we've put out in our draft plan for community integration for persons with disabilities.
I'd like to mention that I'm not the only one here from central staff or from FSSA. I think a lot of us have come to listen and hear what you've said, and we're making sure that some of our top administrators are at every meeting so that people do get an understanding of what you are telling us.
I'd like to first thank Pat Casanova from the Bureau of Aging and In-Home Services; Chris Newman, who is Director of Quality Improvement Services at DDARS, and I know we have from Logansport State Hospital, Jeff Smith; and John Viernas, Director for the Division of Mental Health, who are all here with us today.
I'd like to spend just a couple of minutes giving a bit of background for the draft plan and telling you how it was put together, and then the meeting is yours.
In 1992 Central State Hospital was closed. It was the first big institutional closure in Indiana's history and looking at Central State as kind of a key point, because it really began in a real way to move to community integration in Indiana.
In 1997 and 1998 two state developmental centers, New Castle and Northern Indiana both closed and the folks who lived there were moved into community living. This started the trend, started the activity for persons with developmental disabilities large scale.
Across the board since then actions have happened to bring people into community integration. In our mental health programs we have moved people out into the community so that they're actually 500 fewer beds in our institutions because people are living in the community more successfully.
There's 74,000 people who are being treated in the community through our mental health programs. There's 700 fewer persons in institutions in our developmental disabilities program, and 4400 total people receiving community services in their own homes and the community.
We've tried in Indiana to use various funding mechanisms to pay for this. Medicaid waivers and Medicaid funding has been very critical to this effort. Very recently we completed two new Medicaid waivers, one for assisted living and another for adult foster care to broaden the array of option that can help people to move into community living or stay in the community as opposed to going into an institution.
In 1999 the legislature appropriated $39 million to assist 1300 people at risk of going into institutions to stay in the community and have community life. The mental health division has had a special effort to try to reach even the toughest persons to be institutionalized, long-term patients, and has moved 23 patients out of the hospitals who were in there for eight, ten, twelve or more years and now they're living in the community.
But this was just the beginning. We all know that's there much more to do. An awful lot begins with planning. Governor O'Bannon executive's order issued last fall made it very clear that he wants the state to build on what it's done already, but thoroughly to involve elderly and persons with disabilities throughout the process of planning a new system.
One that will provide community integration for everyone who can benefit from it. He also wants us to assess the state's compliance with the Supreme Court's Olmstead decision and ensure that we are going to be moving forward in the direction, as the state is certainly legally required to, but also to continue the good work and the good activity that has been going on already.
We've gone out already to get consumer input. We've done everything we could to get input from consumers, families, advocates and providers. In November we went out and had three public meetings across the state to get information, to get input on our planning process, on how we plan to do this.
Then in January and February of this year we called together three subcommittees. One appointed to help us with mental health issues, one with developmental disabilities issues, one with issues for persons who are elderly or physically disabled. And these subcommittees met and gave us quite a lot of direct input and feedback that have already gotten into this plan.
We also called together focus groups, consumers, families, advocates, providers from across the state to get their input, even people beyond these subcommittees, and interviewed a good number of folks to get their input as well. So we've done a lot of spade work, we hope, to gather information and to gather feelings so that we could put this set of directions together.
Now we're at the standpoint of where we want to run those up the flag pole and get the public's input. This is one of 12 meetings that we're going to be holding across the state to gauge people's ideas and reactions to what we've put down. In June we will submit our final report to the Governor and that report will basically send to him our recommendations on what we should be doing from now on.
This plan is not meant to be a detailed focus on specifics. It is supposed to be a road map with system goals we can work on together and ways we can work together and directions we can go together to better serve persons with disabilities and the elderly.
I think the focus that we've gotten from a lot of the input already is that we need to really emphasis our efforts to assist consumers and their families in making choices about their care and particularly care in the community.
While the emphasis is community-based care, we do have to take care of people who are in institutions as well. Their needs are not going to be lost or overlooked in all of this. There are basically six policy directions, and I'm going to go just very lightly over them because you have them in the brochures, you've looked at them in the plan.
First of all increasing consumer choice is a very, very high priority so that people across the state whether they're in an urban area or a rural area will have choices that are meaningful to them about service, the location they take the service in and who gives them the service.
The second policy direction is to improve access to information and assistance. We want to emphasis informed choice. That unless people know what the options are there won't be any informed aspect and there won't be any choice aspect. So we really have to do a better job at informing people of what's available and how they can access those services.
Third we need to support an informal network of families, friends, neighbors and communities in general helping them to take care of people in their charge.
The informal caregiver network is such an important one and so many people have testified about their personal experience that they really need help. This is a key area where we really need to focus.
The fourth direction is to strengthen quality assurance, complaint systems and advocacy efforts. We need to have a quality system. We need to make sure that people are getting the services that they need in a respectful and complete manner. And we also have to have ways, if they aren't getting those services, that they can complain to us and let us know. So that we can rectify the matter and we need to do better in that.
The fifth direction is to increase our capacity for high quality care. We've heard many, many statements from across the state from varieties of people about the additional services that are needed and the things we have to do to strengthen our service delivery system.
The final policy direction is to create a coordinated work force development system. Again we've heard from all over the state that there aren't enough workers, there isn't enough training, there isn't enough in the way of people to provide the services that are needed, and sometimes even those that are funded.
That's the overview of what we've done and what we've said. It's now time for us to listen. We've got a court reporter here that's taking down everything we say and it's going to be a public document. It will be on the FSSA internet site so you'll be able to get it in about 10 days from now, I expect. We will basically have these documents available to people so that they can see what was said across the state.
We are going to use this information and take it back and crank into our planning process and use it to improve our plan.
I'd like to ask at least initially that you try to focus your comments and limit them to make sure that everybody says what they can say and what they have to say. If you need to you can say more at the end, because we'll give you a chance to do that too.
Letters, written comments and e-mails can be forwarded to us with testimony or comments up until April 27, 2001. We're going to read and look at and work with every comment that is made. If you don't feel comfortable at standing up and saying something today, please feel free to write it down. In fact, please write it down and send it to us, because we really want to hear what you have to say.
I'm now going to take my seat, and give you all a chance now to speak and say what you want to say in terms of your reactions to this plan and your thoughts about what we need to do.
DEBBIE MORGAN
My name is Debbie Morgan. I'm totally blind and I travel with a guide dog. One of the biggest problems that those of us who are blind and visually impaired, and there's probably others who have difficulty reading print, experience in this county is with the public transportation.
They've changed a lot of the bus routes. I thought this morning I could get down town at 8:45 and I found out that I couldn't get down here until 9:15.
We have requested -- I belong to the American Council of the Blind of Indiana and there's also a low vision support group here called In-Sight.
We had a person, a representative from the city bus company come to In-Sight last May and we asked about getting the current bus routes put in an accessible format, preferably on cassette tape. I read braille. I've read it for over 40 years. But this has not been accomplished as of yet.
We really need to have more things, such as bus routes and other public types of accommodation and documents, made accessible to those of us that are blind and visually impaired.
This is a real problem. Sometimes we get on the bus and ask about their destination and most of the drivers are very nice, but there are some who are very discourteous, and I think there needs to be more sensitiveness and awareness of people who serve the public, not only buses, but in stores, and this is a real problem sometimes. I think the transportation is the main issue. It can be a real problem.
HEARING OFFICER SYBINSKY: Thank you very much, Debbie.
DONNA VANMETER
I'd like to thank the Governor for doing what he is doing. I know Deb from Purdue. She worked at Purdue for a little while, so I know the problems she was addressing.
I live in Lafayette and I work at Purdue but I'm originally from Warren County and I am an advocate for Warren County. One of our major problems is transportation, as well as probably all of the issues in the draft. It's hard enough to get everything lined up for people who live in the city where they're close to everything.
But in the rural area, it's a real problem. For instance, today, as Deb said, she was late due to transportation. Individuals with disabilities have problems with transportation getting to meetings, stores, doctors, so on and so forth. Everything that they go to do is a long-drawn out pre-planning program. If you can't afford your own transportation you're pretty much homebound.
If you have to re-schedule at all, your attendant care also has to be re-scheduled. To begin with it's very difficult to get attendant care in the rural area because they are not paid for mileage or for the hours involved in the traveling. So these are some of the main problems.
I think, basically, what my concern is with the draft is in every step that is voiced in the draft, there's a problem with addressing it for the rural area, and I think that's very important that it does need to be considered, that every situation is even tougher in the rural area.
KIM McMANIGAL
My name is Kim McManigal, and I'm part of a support group that meets in Warren County. I'm from Warren County.
I think there's just two issues that seem to come up repeatedly, not only with myself but with those that are part of our group, I think one word that comes to my mind is the lackadaisical attitude people have.
Out in the rural areas -- I live in Veetersburg, Indiana, actually, I live outside the city. When I go in town a lot of times I have to wheel down through the middle of the street, or if I go to Covington, I have to wheel down through the middle of the street. If I go to somebody's office and they say here's something simple you could do to make this more accessible, it's kind of like who cares, you know, you're the only person here that needs it.
It doesn't matter if it's the Beef House or whether it's just my local lawyer. It's just the lackadaisical attitude. Nobody is going to turn me in, nobody is watching. They're really not concerned.
The second word that comes to my mind is consistency. I see a lot of times that it seems like some people -- one thing I would like to see that everybody gets the same treatment whether I live in possum squat corner or live in Lafayette, I'd like to see the same -- I love the draft. I think there's a lot of good ideas in it.
I just look forward to seeing it incorporated. I'd like to see it implemented with some teeth in it, so to speak.
HEARING OFFICER SYBINSKY: Thank you very much, Kim.
The next person is Jeff Darling.
JEFF DARLING
My name is Jeff Darling from Wabash Center. I did have an opportunity to review the state's plan prior to the meeting, something many of you might not have had an opportunity to do.
I'd like to applaud the state for this initial effort. It does go to the heart of many of the problems associated with our existing system. But I do need to point out that it is a very preliminary plan and something that will need to be fleshed out in much more detail.
Now, you did see the elements of the plan, Dr. Sybinsky presented those at the beginning of this meeting. And some of the overall issues that need to be addressed are to establish time frames and specific goals for moving people into the community and for identifying who is responsible for that task. This has to include a procedure to find out who wants to move out of the institutions -- that's not something that we've normally done in this state -- and what supports and funds they'll need.
And a most important element is a method to ensure that new people don't move into institutions for lack of other options, perhaps this could be accomplished by the development of a multi-agency commission to establish and flesh out and implement the plan.
My other comments relate to policy direction five and policy direction six. Again these are things that you saw on the overhead during Dr. Sybinsky's presentation. Increase the system capacity for provision of high quality of care and to create a coordinated work force development system that recruits and supports a stable resource of direct support staff.
I would strongly encourage the state to develop a system that is open to technological innovations that are going to occur in this 21st century that will both increase the productivity of staff that may work with people with disabilities or special needs or provide greater opportunities for independent living on the part of people with disabilities.
To often there's a service mix that's funded by the state that isn't terribly flexible and open to innovation.
That concludes my comments. Thank you very much.
HEARING OFFICER SYBINSKY: Thank you. Ken Paclick.
KEN PACLICK
I'm Ken Paclick. I come from an area near Covington and Williamsport, if you're familiar with that area, near the Illinois line.
As Kim mentioned a while ago I do come from an area that's called Possum Hollow. So I am familiar with the rural community and that's a big concern that I have myself.
First I have to mention the positive side, all of my dealings have been with vocational rehab and I have to say they've done a good job for me. In just a few months I learned the programs through our MS support group in Williamsport and began working with voc rehab.
In the seven or eight months that were involved there, they have provided me with remodeling of a bathroom and bedroom to make it more accessible and they've provided a lift chair and a hospital bed, and about a week and a half ago I picked up a van with a lift in it, and the voc rehab paid for the lift and all the hand controls that were necessary to give me independence so that I can do the things that I do.
I'm a minister and I use that. I need the flexibility to go. They've been great, and I thank the Lord for it.
Just a couple or a few points that we talked about in our support group in Williamsport.
One thing that I see that could stand some work is the payment of our vendors. As I volunteered to get the bids on the bathroom remodeling and as I tried to find carpenters and builders that would come in and do that, many are reluctant, and I believe, because they know that they're going to have to provide all the material and all the hours to get the job done and not get paid for maybe two months, maybe more. They're out this money and they have to wait, and I'm sure that applies in other areas where we're trying to get some things accomplished and the vendors know they're not going to be paid right away.
Another thing we mentioned in our support group was the need of community housing in the rural areas for families. What little housing there is available is usually geared to the senior citizens and that's great. But there are a lot of disabilities that happen to younger people that have families and there's just nothing available, at least in our area, for those people to be able to move into and raise their family.
Another thing was the need for some kind of immediate or quick help for those who are coming out of rehab and moving back home and yet the home isn't set up for them. If there could be some method set up to where this could be accomplished to get the home ready for them so they can get out of rehab and get home and move into their situation.
We talked about periodic training maybe of handicapped individuals who have been trained to take care of themselves, but as we get older as our handicap maybe gets worse, we could stand some outpatient type of retraining of how to care for ourselves so we don't put that burden on someone else.
Finally, we talked about an extended care for consumers outside of the nursing home. The people who are trying to stay at home, as was mentioned, needing care. We wonder if there could be some training for family members to do some of these things.
In lieu of paying for their care in the nursing home, some of these family members could be reimbursed for some of the work they do or something along the lines of a tax break to help them.
The question I have with all this going on, and I like what I see, is how is it going to affect us? What can we expect in the rural areas coming up?
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much. Ted Harris.
TED HARRIS
My name is Ted Harris. I'm from Crawfordsville. I'm my brother's legal guardian. My brother has been a resident at Muscatatuck State Hospital for a little over 35 years. He is profoundly retarded. He currently lives in one of the units that's been recertified and his care there over this 35-year period has been excellent.
We couldn't be any more pleased with the staff at Muscatatuck, regardless of the bad press that we've often seen in the newspapers.
One thing I'm concerned about is, even though I believe the concept of community integration is a good concept on an overall basis and probably very suitable for a great many people, for some people I believe it is not a suitable option.
My brother will never be able to live independently or really contribute to society. He is to deeply retarded. He is also one who is subject to acts of physical aggression and in fact they keep score on how many times in a month he commits an act of physical aggression.
The numbers range all over the place, but typically it's about 40 times a month. He may be required to be physically restrained for a period of time depending on the act.
My brother is not the sort of person that you really want to place in a home or send to a sheltered workshop for daily activities. My real concern here is not so much the community integration plan, per se, but with the underlying thing that is going on in our state, and that is the closure of the state hospitals and lack of funding and political support to pretty much blackmailing the Governor to close Muscatatuck.
And I think a great many of the residents there at this point in time, like my brother, really probably are not suitable for living elsewhere.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Ted. Ken Patterson
KEN PATTERSON
Thank you. My name is Ken Patterson. I actually wear three hats. A little over 30 years ago I became physically challenged. I also run and operate a business called Quality Wheelchair Repair. I get around a lot. I also play wheelchair basketball for the Lafayette Spinners.
A lot of people will recognize me from there. About 28 years ago in this town we started a group called the Greater Lafayette Handicapped Sports Association. You guys think you've got transportation problems around, you should have been here then, there was no transportation. If you didn't have a relative to take you, you weren't going to get there. Buses were totally not accessible. I took my first bus ride probably a year ago to go out and see the Christmas special at the church on 26th. I was elated.
The bus was fantastic. I can't say enough for the transportation. Yes, it needs improving, everything needs improving as times goes on.
All the curb cuts you see down town, the doors you can get in, that wasn't there 28 years ago. We had people that worked with the state to get that done. We had an awareness day, we had the governor, we had state representatives.
Maybe we need to do that again. That was probably the best thing that ever happened to Tippecanoe County.
The first thing that happened the state representative tried to go off a curb and went over backwards in a wheelchair, that's scary. We took the mayor, we gave him tasks to do. At that time the mayor's office was on the top floor of the courthouse. We put an out of order sign on the elevator. He had four Purdue football players carry him in a chair up the flight of stairs. If you've never been there you cannot experience the terror that is, that's awful.
I'm glad to see the media here today. For 28 years we've tried to get the, I guess, the game reports from our basketball team. Short of a friend that grew up with us in the Journal and Courier called Bob Scott, we've hardly got any publicity. Everybody knows about us and they're always calling. What did you guys do last weekend. There's a little bitty article in the Journal maybe, nothing radio and TV never. It's just impossible. They don't acknowledge us.
One of the things with Indiana -- I travel a lot in the United States, probably three-fourths of the states support and fund their disabled programs, basketball teams, tennis teams.
We, due to small businesses here in town, are able to get $4,000 or $5,000 a year to try and exist on. We end up paying out of our pocket for most of our transportation and our food. The support is just not there. I wish it was.
I just got back from Chicago from national wheelchair basketball playoffs and I talked to a lot of people from California, Illinois, and they get these budgets of $40,000 a year. Boy, I'd love to have $10,000, just love to. Their equipment -- they are able to compete on the very top level of competition because they have the best equipment. The basketball chair, $4,000, that's a manual basketball chair. People don't realize it. The chair I'm sitting in retails for $2100. People don't realize. And most of the athletes pay for that out of their pocket, if they're fortunate enough to have a job.
There's a lot of programs out there for the elderly, for people who can't work, have no hope of working. There's not enough programs for the people who want to work and make it on their own. Voc-rehab doesn't get it. I had a very, very bad experience with voc-rehab. Got absolutely no help whatsoever.
I approached them about a year ago. I wanted to computerize my business. No, we can't help you. We don't help businesses any more. If you're a student, great, until you go to graduate school then it won't help you.
I could go on and on and on. I get into most nursing homes, most hospitals, anywhere within 100 miles of this area, the level of care for the most part is good. They have a huge staff turnover, that's due to pay. I think that needs to change. Some of them have excellent equipment, some of them do not.
Probably one of the biggest things I get day in and day out is information. There's no good information highway. People call me, hey, where can I get a ramp built? Well, I don't know.
What do you need, maybe I can help. I go out and do a lot of volunteer work. They want to know what's the status for a ramp. I had a guy call me last week, he says how steep does it have to be?
I said, are you going to push the person up or they going themselves? Well, yeah, I think they're going themselves, they're strong. Okay, you need to go an inch per foot. The guy called me back and thanked me because he tried to put down an 8-foot ramp, he had a 16-foot grade he had to go up. He said, you're right, you can't do it. You've got to have that inch per foot.
There's no information out there. We need a central information place. That's all I've got to say.
HEARING OFFICER SYBINSKY: Thank you, Ken.
John R. Johnson had to leave but he wanted to make sure that his speech was received from the Commission on Aging.
Sonia Long and Tim.
SONIA LONG
Tim is a very special friend of mine. First of all I'd like to tell you I wear several hats today. We live in Logansport, Indiana.
The main reason I came today is because John, my husband, and I are Tim's legal guardians.
Three years ago Cardinal Center asked us to take over guardianship for Tim. Tim is a special person. At the age of five Tim's family placed him at Fort Wayne State Hospital. He lived there for over 40 years.
After Fort Wayne he moved to Cardinal Center group home where he stayed for the next nine years.
After they asked us to take guardianship I asked them to get Tim on the Medicaid waiver waiting list. They challenged me stating that wasn't a good thing for Tim. I asked the Woodlawn staff to consider Tim as one of their new residents and they kind of said that's not a good idea.
After four or five months I called the state myself and said I want his application submitted and after reviewing that they said yes.
Then they had a couple of more hurdles, first of all with the hurdle of Tim's choice because BDDS told me unless Tim said in his own words that he wanted to move, that would not happen. I want to tell you I used every form of bribery possible to convince Tim to move.
In fact, I find it interesting this morning that when I told Tim we were coming to a meeting and we were going to talk about his move and his home, he went back into his bed and got Zoro bear because Zoro bear was one of my bribes.
But it also told me something, it showed me the insecurity that is still there after that move last November. Tim finally said yes to the move.
Between the three, John, myself and Tim
we had a living hell over Thanksgiving and Christmas because he wanted to go back to Cardinal. He wanted to be back with his friends. He wanted to be back with the staff that he had known for nine years.
Now, I can tell you today that Tim has blossomed since the move. He moved from the group home where eight individuals and he shared a bathroom with three other gentlemen. He now has his own bedroom. He shares his bath with one other person. There are four gentlemen living in the home.
My long-term goal, and it has to be his choice, is some day that he lives in his own apartment. I'm very pleased with the actions the state is taking to move forward to serve folks with challenges but I'd also have some questions and concerns.
First of all Tim is a smoker. He smokes cigars. He learned how to do that at Fort Wayne. He doesn't understand the concept of putting those cigars out. He doesn't have feelings in his hands and fingers any more because of the many times he has burned himself with the cigar. He has blisters on his lips and tongue from burning himself.
If he has access to cigars he will smoke every one he can get his hands on, one after the other.
So what I want to know, if we are fortunate enough to get a waiver for Tim and he can live in an apartment either by himself or with a friend, is the state going to provide him with the 24-hour care that he must have to live safely and securely. Tim could not evacuate in the case of fire. He has no way to control his own feelings about those cigars. If they're available to him, he will smoke them all and when they're gone he has an anger problem. That would be an explosion.
In our small community of Logansport we have limited transportation. Area 5 Senior Citizens Center serves the folks from 7:00 in the morning until 5:00 in the night, Monday through Friday. How is he going to get to the basketball games? How is he going to get to church on Sunday? Right now I assist with that transportation. But both Tim and I are 57 years old, one of us is going to go some day and it could be me first. Then what's going to happen.
Housing is a severe problem in our community. We have a wonderful new group of folks who have come to town and we appreciate the newcomers, but it has challenged the community of Logansport. I moved down there five years ago, it was an all white community. We now have approximately 5,000 individuals from the Hispanic culture who have come to live with us.
Housing has soared. In order to rent a three-bedroom home in Logansport you're going to pay $600 or $650 a month plus utilities. There are very few, if any, apartments available and those are astronomical.
So he's going to have to have some financial assistance.
I see this as a positive move. The state is moving forward, but please understand as Tim's legal guardian I will fight for 24-hour service to protect him and make sure he lives comfortably within the community.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you, Tim and Sonia. Gary Daily.
GARY DAILY
Thank you for this opportunity to be here.
My name is Gary Daily. I live about 180 miles northwest in North Aurora, Illinois, I'm currently the guardian for my sister in the Fort Wayne institution. She's been housed in Fort Wayne since she was nine years old. She hasn't left the facility, so she's been there about 26 years right now. She needs constant care pretty much 24 hours.
I attend meetings. She's on VMPs for aggression, et cetera. It took approximately 20 years for the state to determine some type of medication that would really work with her and in the last five or six years it's worked very well.
She doesn't adapt very well to change. She's one of those people I would say that's really not adaptable to a group home. My curiosity is for those folks. What's going to happen. Because as they move people out of these homes, what will happen to the quality of care in the institutions. These are the goals of the state to actually reduce or eliminate the institutions. For those people that really need the institutions, what will happen to them?
Thank you.
HEARING OFFICER SYBINSKY: Joe Hammersback.
JOE HAMMERSBACK
My name is Joe Hammersback and I live in Carroll County. I have worked in Lafayette for 14 years. I work in the human service field. I've worked with adult productive services and other programs. And I guess what I would like to say, and I'll keep it short, is that I think a lot of people that I work with in social services -- we have the same values as these policies are representing. One of the values is keeping somebody at the highest level of functioning as possible regardless of the disability.
And I would like to just simply say there's a framework there to put these things into actions. For years and years I would deal with cases where I didn't have the resources to do what needed to be done.
And I know there's a lot of other fine social services organizations here and we would all work together on this. And I hope the state knows that. We haven't gotten the leadership to do that.
One last thing I'd like to say, it's very important, is disability can affect people mildly and severely and everywhere in between, you need services that can help people at whatever level they're at. And that can be in an institution and that can be keeping them in a home-based situation.
HEARING OFFICER SYBINSKY: Thank you. Sharon -- I'm sorry I can't read the last name.
SHARON WOOD
Many secretaries have not been able to read my writing. I'm handwriting challenged.
I'm Sharon Wood. I'm the Executive Director of the Area 4 Agency on Aging and Community Action Program headquartered here in Lafayette. And I want to thank you for allowing me to comment on the proposed integration plan.
We certainly applaud the effort that has gone on so far and we feel that this effort is certainly necessary to provide safe comprehensive support and services to persons who are elderly or disabled.
However, as an area agency we actually feel that we have a unique perspective, because we feel that we have been, actually, doing this work of trying to integrate people into the community for our entire existence.
So we would like to talk about just a couple of things in this plan. I have had the opportunity to look at the plan before today so my comments do refer to specific parts of the policy, that of directions that are being proposed. First, in terms of increasing consumer choice and enabling individuals to receive types of services they desire in a location they prefer.
There is nothing that we don't agree with. These are very broad and wonderful ideas that have come forward and of course the devil is always in the details and we'll talk about that in a little bit.
But certainly in terms of the elderly, specifically, we think that it's important to look at this opportunity to kind of flip our system, and by that I mean that -- one tool that we use is pre admission screening for people who are just about to go into nursing home care.
We feel that should be at the front of the process for people, not at the end. In other words, we take people and screen them for appropriate nursing home placement, but the main point is to explain to them what other community alternatives they have, but we tend to do that when we're going to put people in the nursing home.
What we're suggesting is we use the same tools actually when we screen people for any kind of care, and what we ought to do is look at that first and then look at the whole continuum of what exists for folks between that and nursing home care.
That's not to say that nursing home or institutional care doesn't have its place. We've heard from many different people with different kinds of disabilities that institutional care is the right choice, and certainly for the elderly that is their choice. But we know that there are many, many times in the community when we could have people kept in their homes with help.
The second policy has to do with giving people access to choices. Both good things. When I think about access and choice I think about two levels. There is kind of the small choices.
They're the micro choices when you're working on a plan and you already know that you're going to get a certain type of care and you have choices among like, for example, people who might give you the same kind of care.
And there are the kind of macro choices which have to do with the larger choice of what kind of supports do I need, what kind of life goals do I have, what kind of dreams and plans do I want to be able to have. And that's not the kind that's limited to that small menu of services.
What I'm really concerned about is that this plan for me and things I've heard sort of imply we need to have some sort of major education and the public needs more education about what's available out there.
My concern is that we don't want to raise false hopes, and that's probably my biggest struggle as a director of an area agency. We have fabulous programs already in place. We have great single points of entry. And many many things that are wonderful, but you have to wait two years to get them or four years to get them in the case of Medicaid waiver in this eight-county area.
So my concern is how do we balance that struggle between getting people information about all the kinds of things they need, because some of them we can do rather quickly, but others are really rather hopeless.
Unless we change our fundamental system of how we give people care and how we allow that to happen through the funding sources, I believe we run some danger of raising people's hopes when there's nothing to give them. I'd like to see us flesh out further how we can struggle with that particular issue.
As well as making assistance uniformly available in all geographical areas is admirable and we agree that all basic services should be available, but again we believe surprising enough that we have a good single point of entry system, at least for some of the population we're talking about, and the way to implement that is to strengthen the area agency system as it currently exists.
In policy four where we talked about advocacy and monitoring and complaints, we think that something was missed that ought to be added there and that is we feel the money management program is a very specific and strong advocacy program. I'm not sure people think of that in those terms but if you think about the fact that volunteers and/or staff actually get someone's Social Security check, they pay their bills, they give them an allowance, they negotiate kind of how their life is going to be, how their money is going to be used to provide that life, and that's primarily what keeps people in their homes.
We think that's enormous advocacy ADN we feel that ought to be added to the plan. We have 15 years of experience here. We have had money management almost since conception nationally. We have actually the fourth largest program in the country in Tippecanoe County. We have an impressive -- at any one time around 76 volunteers working with over 125 people. We have clients that are more difficult and we have one and a half staff people to work with them as well.
When I leave here people from Washington are coming to talk with us about our program for the second time in two years because we're about the purest one there is. We have a very strong vested interest in seeing that as something that helps people keep people as self sufficient as they can be.
Lastly, in terms of increasing the system capacity for provision of high quality, we really feel that we really need some further definition for the rules for assisted living.
There's been a lot of concern and we've had some legislative movement in that direction. We don't want to have regulations like nursing homes because that will end up too costly and it's not necessary.
Nursing homes tend to look at people in their disability or their problem. We like to look at people in a more holistic fashion and what medical needs they have are just a part of the whole person. It's not the main thing that drives their lives. So we very much support assisted living and the application for waiver, but we want to make sure that the rules are really clear and that we also get some good training for the people that are going to monitor those programs, as well as people working in the programs.
We talk in the policy number five linkage with housing. Some people have already talked about housing issues. I just want to make sure people understood that many triple A's already have housing developers. In the last four years we've worked on four projects in various counties. And we have always included handicapped accessible apartments in those communities.
In some they are multifamily and senior. It's a wide variety. I agree in the eight-county area there's a need for good housing. I think you need to continue to look to the triple A's and the community action agency to help with that process.
And last about transportation, I wanted to talk about that as well. Many triple A's and community action agencies do have transportation programs but they are clearly not enough. We've been running for many, many years an all volunteer transportation program in six rural communities in this eight-county area in six different counties.
We administer that program. The transportation is extremely limited that people are able to provide. So we would really support the continued work -- I'd like to see some coordination between FSSA and INDOT because all of this has been done with INDOT. The FSSA has had very little to do with this activity and it seems to me if, at the state level, if there could be some coordination and work on that level it would certainly help us at the local level try to put together programs and systems which would help everybody.
Thank you for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Sharon.
Anyone else want to speak?
MIKE CRUZ
I'm Mike Cruz. I'm with CDC Resources and we're a provider, based out of Monticello and Rensselaer. We serve five counties north and somewhat east of here.
I really want to reinforce the comments other people have made before, but I wanted to focus a little more on the housing arena as Sharon did. There is an acute shortage of affordable and accessible housing. I'm sure that's true in Lafayette, but it's particularly true in the rural community.
And I would also say there is a need for that to be expanded dramatically by the state. And as you look through this, although this is a broad plan and difficult to critique from that perspective, if you look at the specific options it mentions no specific options or no direct steps to be taken by the state to address this. If we're going to be moving people out into the community, and creating opportunities, there has to be affordable housing for those individuals.
I would also encourage the state to look to other states such as New Jersey which have developed very positive programs to serve individuals that are particularly challenged that are in institutions and may be moving back into the community.
I would reinforce the comments the people have made about the transportation across the board.
I feel this is a very positive step. As Sharon said the devil is in the details and the next steps are going to be very important as we go forward and we hope the state continues in its direction.
Thank you.
HEARING OFFICER SYBINSKY: Anyone else?
NATHAN COLEMAN
I'm Nathan Coleman, and I have many hats that I'm representing today. I'm the Chairman of the Step Ahead Council of Cass County. I serve on councils in Cass and Fulton County, and am member of the Executive Board of the United Way of Fulton County, and the Chief Financial Officer of Four County Center. And I had the pleasure to be an assistant superintendent of the State Hospital working with Jeff Smith.
By profession I'm a health care administrator. There's a couple of comments from all of these agencies that I'd like to make and that is when we make the funding decisions -- I know it's going to involve the Step Ahead Councils, we've been told. We've been educated in that process, and I think that's going to continue -- but if that continues we need education and will probably need financial support for training Step Ahead coordinators because from the Step Ahead perspective we're all volunteers.
There are Step Ahead agencies that are very active, and if you ask them to be involved in making any financial decisions on how we're going to administer the funds, those that are very active will be very involved. We commit that from the Step Ahead in Cass County because we're very concerned about that.
The other comment is that everybody has talked about the differential between urban and rural funding. Simply said it costs a lot more money to provide services in the rural area, and I see that in almost everything that I do. So I think everybody has spoken quite eloquently to that but I would strongly recommend that strong consideration be given to more of a rural differential. It just costs more money to provide those types of services.
This is a good effort and I think all of us are very much concerned about providing the best quality of services for the betterment of the individuals we serve.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Nathan.
Anyone else?
JANE HANNIBAL
I'm Jane Hannibal, and I'm representing severely mentally ill people, especially the National Alliance for Medical Illness, on the state level and the local level.
I've been a member of the committee on community integration. Gotten many packets of great numbers of papers and hard work by many people. I'm not really real encouraged by what we read in these papers.
I would like to read at least one or two sentences from the part on mental illness under the draft on page 24: Despite the best intentions of the people in the delivery system, the incentive seems to favor the status quo. There is a little accountability to the consumers or the community.
There is little incentive to innovate or to develop new best practice program based programs. There is little incentive to identify and serve people who are not eligible for Medicaid. There is no incentive to reduce state hospital use. That's item five under accessibility on page 24.
And I would just like to say that the Alliance for Mental Illness will continue to press in our own community for a greatly improved and increased services for the severely mentally ill. Particularly in the areas of CHOICE, in the area of having more contact with staff and physicians, and having better quality staff and physicians, and finding housing in the community and getting them services in general.
I commend your efforts here greatly. This is not really a comprehensive report. It's mostly a description of options. There's a long way still to go. We don't really know how or when, but we're hoping for the best.
HEARING OFFICER SYBINSKY: Thank you. Anybody else?
SONIA LONG
I forgot to tell you one thing and I think it's very important. I moved Tim last November. I moved him and I don't -- even though I work with the service I don't know the levels of care, but I moved him up one level of care, by moving between those group homes. Three weeks after the move the state survey came in and they watched Tim go outside on the front porch and smoke the cigar by himself, and their comment was he doesn't need to be here. And they gave him, I believe, they call it a 198.
This is a gentleman who cannot cross the street alone safely. Tim is very impulsive. When we're out together I ask him if I can have his arm please and let him assist me so I know that he won't walk out in front of a car.
But three weeks after that move, moving him up one level of care, they said he didn't need to be there. I'm extremely grateful to the Woodlawn staff who stepped in and said he doesn't know how to cook, he couldn't evacuate in the event of a fire, he can't safely cross the street, there are numerous things that Tim still needs to learn before he can go out on his own. And they pulled that 198 back.
But I live in fear of next November because I've been told that the chance is extremely good that that tag will be put on him again and this time it will stay. This cannot happen and I will fight it all the way.
Like I said I would be thrilled if he could get a Medicaid waiver and get an apartment for 24-hour services so he can be safe and secure. But I look at the process I went through with moving him when they said it had to be Tim's choice, the words had to come out his mouth that he wanted to move, and then three weeks after that he has to move, it was the state's choice then.
Now, we have to be very practical here and make sure we look at the needs of every consumer and make sure that those needs are met and it still needs to be their choice to move up or move out and not someone else's.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Sonia.
Anyone else?
ANN SHALLENBERGER
I'm Ann Shallenberger. I'm a psychiatric social worker at Home Hospital, and my concern would be closing or reducing the allocation of psychiatric beds at the State Hospital.
I haven't really read through the draft but I know that there are patients and certainly families of the mentally ill who need placement in a state facility for long-term care, and that the acute hospitals are just not set up to provide that.
Specifically there has been a couple MR/MI people who have come on our unit and getting them state placement is nearly impossible and they're the ones who are left to suffer as well as their families.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Ann. Anyone else?
DEBRA HAYES
My name is Debra Hayes and I have a brother-in-law in Muscatatuck. What are they going to do with him? I mean am I to understand they're going to take all these people and put them where? Are they going to try to place them someplace where they will fit in society and stuff.
But I understand we closed down Central State, why? What is the plan? I know they're making a plan to do something with all these people. Is it because of money that we're taking them out? I don't understand because I don't have all these titles. I just have a family member. I need to know why they're making these plans.
Thank you.
GARY DAILY
One thing I forgot to mention is the resource pool that we have. I've been doing staffing for my sister for the last 11 years since my parents passed on. I'm the legal guardian for my sister. And what I noticed going through the staffing and the programs that are identified that are available currently, you've got psychology, nutrition, sports, all these tools are available on site.
Now, you're going to pull these individuals out of this setting. You may have access to more types of programs but they'll be isolated. Overall the institution has more programs to offer.
Now, staffing is always an issue at the institution, as you know, but one thing maybe the state should think about is going to the community and ask community groups to help assist, volunteer, to maybe better the institution.
Because not everybody is going to fit, it's like putting a square into a round hole, just doesn't work. Not everybody fits. It's very embarrassing getting my sister out of a restaurant when she's naked or when she drank the shampoo for not being watched, that type of thing. You've got to protect these people.
Thank you again.
HEARING OFFICER SYBINSKY: Thank you. I'm here to take input, and I'll be glad to answer any questions afterwards.
Again, I thank you all for coming out and being here with us and making comments. I want to remind you of both the website, FSSA, as well as the option of writing if you have additional comments or additional testimony, but please get anything else you want sent to us by the 27th of April.
Thanks again for coming and we look forward to working with you all to make the programs better for Hoosiers. Thank you.
(Hearing closed at 10:45 a.m. on April 17, 2001.)
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Linda R. Merkl a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration in the matter of the Olmstead Act, beginning at 9:00 a.m. on the 17th day of April, 2001;
That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 27th day of April, 2001.
____________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2001
