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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
JACKSON COUNTY PUBLIC LIBRARY
303 WEST SECOND STREET
SEYMOUR, INDIANA
APRIL 26, 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:
Richard Sturgis
Jim Coran
Jewel Echelbarger
Gary Gambino
Gary Graves
Don McGinnis
Diane Cantrell
Victor Sarno
Jerry Castman
John McCauley
Bill Hadar
Ed Anderson
Tom Becker
Eldena Shurm
Mary Stockton
Mary Owsley
Doris Inman
Denise Mullis
Joan Shelton
Adjournment

PROCEEDINGS

HEARING OFFICER SYBINSKY: Good afternoon. Can you folks hear me? Okay. Welcome to the community meeting on the FSSA draft plan for community integration. I have a couple of details to start off with so if I could do a little housekeeping, let me first introduce myself. I'm Pete Sybinsky and I'm Deputy Secretary of Family and Social Services, and when we get my voice modulated I think we can move ahead.

We are supposed to have an interpreter. If you could join us up front. Does anyone need interpreter services? I think you need to maybe come up here. If anybody needs interpretation services, please put your hand up. Okay. I don't think we do. Okay.

I'd like to point out some of the available materials over on that table. We have a Braille copy of the plan and a couple of paper copies of the plan to enable people who have vision problems or who are blind to interact with us. We also have a plan on diskette for those of you who might want to use a computer. So if you could identify yourself if you need diskette.

Okay. We'll move ahead with that. I'd like to identify some of our staff. I want to mention that I'm just going to do a very brief overview of how this thing evolved and what it is for and then I'll basically turn the meeting over to you folks, because the purpose of this meeting is to listen what you have to say, to see what your thoughts are on the document that we put together, and how you feel we need to change it, and those things that you really like about it.

Along with me here from FSSA we've got some staff who are leaders in the programs with which they are associated. I'd like them to raise their hands when I mention their name, because if you'd like to say something to them or talk to them after the meeting I'd like you to at least know what areas they are in and who they are so that you can ask any questions or give them any special thoughts you have.

The first person is Jackie Pitman, Deputy Director of DDARS. That which is the division of disability and aging and rehabilitating services. Janice Miller is also with that division.

Lee Witt up here in front. We also want to thank Tom Rothring of the Jackson County Step Ahead Council. He's just outside the door.

Dennis Carmichael of our local DSC office. He's right outside the door. Also Cliff McCullough and Roger Hubbard from our planning office. They were down here this morning with the Step Ahead Program, and so they are putting in a full day here in Jackson County.

I really want to thank the Step Ahead Council and the work they have done, and the partnership that they have had in helping us to get such a good turnout today. We really appreciate all of you coming and we appreciate what you have to say. So with no further adieu, I can start this presentation. I guess I'll use the computer.

Our state is in the midst of change in terms of how we view services to persons with disabilities. The beginnings of change happened with the closing of Central State Hospital in 1992, and the later closing of both New Castle and Northern Indiana Developmental Centers in 1997 and '98. These signified something that had been happening nationwide a lot earlier in many places and somewhat later in others. That is a large scale to move into communities by people who had previously been thought to be best served in institutions.

Since that time, the mental health has 500 fewer beds in it's hospitals. That means fewer people are going into the hospitals and they are staying for shorter periods of time.

There are 74,000 people that are being supported with various services through mental health services across the state in their communities.

We have moved 700 persons into community living in our Developmental Disabilities program and we are serving 4,400 people across the state with developmental disabilities in their own communities.

These are changes that are just beginnings and the state has been moving ahead with other efforts such as expanding our Medicaid Waiver program --, and these waivers enable people to live in community settings and are very flexible. Two new types of waivers have just been approved, one for assisted living and one for adult foster care. So this will open several new types of service to people and will help various people live in the community.

Act 317 in 1999 was appropriated to provide services to people in the community to keep them in the community and to avoid institutionalization. Right now 1,300 people are receiving services in the community under that program. And mental health is moving it's programs toward trying to get the most mentally disabled people into communities.

In a special effort to meet the special needs of people who have been in the hospital for 10 or 20 years has come about, and people are moving into the community from that program as well.

I just quick clicked over a slide that's just a few words and it says more can be done and more can be done. A lot more can be done. And Governor O'Bannon, in the fall in the year of 2000, set an executive order into place which basically asked the family and Social Services Administration to provide a plan for community based services.

First of all, to take a look at what we've done and build on what we have done in Indiana to involve the elderly and persons with disabilities throughout the process. And provide community integration for everyone who can benefit.

That's the key element of this executive order. It is to direct the state to plan for the community integration for everyone who can benefit. Also to assess the state compliance with the Supreme Court's Olmstead ruling. The planning process began last fall with the November meetings in three parts of the state, one of which was here in Seymour, which we asked for input on the planning process from folks who lived in communities and we did get good input from them.

From that input, or out of that input, we created three subcommittees consisting of consumers, families, advocates, providers, and members of the public with the idea of looking at specific target areas such as mental illness, developmental disabilities, and services for the elderly and persons with physical disabilities.

These subcommittees met in January and provided a lot of the input which helped to shape this plan we have put together in this process.

We have also done focus groups across the state with the help of some consultants we brought in from outside. We conducted a lot of focus groups and a lot of interviews to give us a very good idea of community sentiment. Perhaps people who couldn't get to the meetings or people who maybe had written in and had not gotten an opportunity to in other ways interact with us.

These led to the drafting of this draft plan. We are in the third stage here in these April public meetings to get your input on these major directions that are outlined in that plan.

And then finally, in June, we will send a report, send this document to the Governor after we have made the changes the public meetings dictate that we make. What the plan is, you'll notice, it's not a real big, thick document. Most of us have seen plans that are about this thick and have lot of words and lots of figures in them.

This plan is designed to be a road map to set up the major direction that we will follow and then setting into place processes that will help us to stay on that road map and to define more clearly the dollars and cents and the various other aspects of the picture that we need to do.

We want to focus this attention on how we can better serve the elderly and persons with disabilities and how to assist consumers and families in making choices about their care.

I think if there is one message we got from the public meetings in November, and the input from the subcommittees and the focus groups, and the interviews, was that people want choices. They want options and they want to hear ways that we can develop options for them. And of course we want to emphasize community-based care. Not to the exclusion of institutional care.

This is not a plan to close the institutions. This is a plan to serve in the community everyone who can benefit from community-based care and to do it well and to do it safely and effectively.

I'd like to outline, very briefly, the six policy directions we came up with.

First, is to increase consumer choice. I said this was the key finding of all the interactions that we have. People feel that they do not have enough choices. They do not have the service they need perhaps in certain parts of the state or they can't get the provider they want, or even a provider of service in certain parts of the state. And so, choice needs to have different focuses. But certainly we need to look at ways, both in terms of looking at the supply of services, the types of services, and where the services are provided, to increase consumer choice.

The second policy direction is to improve accessed information and assistance. To increase opportunities for informed choice. If you don't know what your options are, you really don't have an informed choice and we found that many people feel that they don't know either now or maybe they didn't when they started the process, the range of alternatives that were currently available for them and the idea that we create better public information. That we give people better information about what is available and how to get into it is another important policy direction.

The third policy direction affects the informal network of families, friends, neighbors, and communities. To a very great degree they are bearing a chief burden of care for persons with disabilities across the state and it's up to us.

It was real clear that people need support, need better support in helping care givers serve their loved ones. Another key element that came up when we talked to people around the state was the quality assurance. Complaint and advocacy efforts. Quality assurance.

Everyone is concerned about quality assurance no matter where the services are located and it's of vital importance that we guarantee people safe accessible services. And if they are not getting those services to some capacity we want to get that problem remedied quickly. So adult-protected services, guardianship services, and so forth, are a very, very important part of the quality assurance effort.

Finally, the two that we have heard an awful lot about, and probably people think of first, is the fifth policy direction. It is increasing Indiana's capacity for high quality care. Strengthening the service delivery system.

People are looking at the legislature for funding, people are looking at the state for new alternatives, and we need to focus our attention on increasing that capacity, providing more services and high quality services.

We will also need, as policy direction six notes, to upgrade our efforts finding and training and paying a good work force in the community. So we have to develop a work force development system that will help train people, give them the skills they need, provide them the capacity to serve the many persons with disabilities who need the services and can't get them right now because there aren't enough staff to provide those services.

I told you it would be a short presentation and it is. The time is now for us to listen. We are going to be recording everybody's comments here. These comments are going to be put down on paper and will come back to us. We will try to have them on the web in about 10 days so that you, yourselves, will be able to see what is happening here, what is happening elsewhere in the state in terms of peoples comments and input. We want -- we will take these back and we will use them to improve the plan.

Because there are a lot of people, I'd like to ask, at least initially, that you keep your comments to about three minutes. I'm not going to run a stopwatch but I do want to make sure that everybody in the room who wants to talk will have an opportunity to say at least what they can put into three minutes. At the end those people who have more to say are welcome to append to their remarks after everyone else has had a chance to speak.

Finally, if you don't want to speak, letters or written comments or e-mails can be sent into FSSA by April 27th and we will read every comment and basically use any written documents that you send to us the same way we are going to use this verbal interaction that we have today. Are there any questions? Yes.

RICHARD STURGIS:

I live in a group home and I want to live out on my own sometime out in the community someplace and I think I am well enough to live on my own and stuff. Right now I live in a group home with six other people and I know several people from the group home, and stuff, that wants to be out on their own. For myself, I want to be out on my own for myself.

HEARING OFFICER SYBINSKY: Okay. Thank you very much. Could you give us your -- I'm going to ask everybody to give us your name at the beginning of your testimony so that we can keep a record. So what is your name?

RICHARD STURGIS:

I live at Grandview Group Home. I'm Richard Sturgis and I'm just concerned about myself because I'm ready to move out and there is a lady right out here, Suzie, she's the director of options for fair living. She's over it and she's the one that can really do well at understanding me. She's the one that can help understand me. I've been in a group home for almost a year now, in a group home, and I'm also, right now I'm just right at the point where I'm a grown adult man.

I think that people who want to should be able to live out on their own if they want to. You don't have to. And I am just waiting for the state people to send me an okay sign for options for the group home, Grandview Group Home, because the state people have to give me an okay first.

Whether you live in a group home, Grandview Group Home, or any group home, if you live in any kind of a group home or anything and you want to move out, the state has got something to do with that. Group home people don't have nothing to do with that. The state does. The state or county does.

HEARING OFFICER SYBINSKY: Okay. You're Roger Sturgis?

MR. STURGIS: Richard Sturgis.

HEARING OFFICER SYBINSKY: Richard Sturgis. Okay. Thank you very much, Richard. You are our first testifier here in Jackson County. We appreciate your input. What I would like to offer -- you have a very strong voice Richard and you project around the room and those who feel comfortable staying in place and can project their voice like Richard, please feel free to do that.

But I'm going to give up the microphone for anybody who does want to come up and use it so that everybody can hear it, and it will help, for the record, if everybody can hear you.

So before I start, I want to introduce one more person from the state who's come in and that's Janet Corson. She's the Director from the Division of Mental Health. Janet, thank you for coming.

Okay. I'm going to open it up to everybody else so please just put up your hand and I'll call on you and you can speak either back there or up here at the mike. Thank you. Go ahead, sir.

JIM CORAN:

My name is Jim Coran and I'm from the Indiana Commission on Aging. I represent the 9th District.

The Indiana Commission on Aging provides the following comments relative to the draft plan entitled Comprehensive Plan for Community Integration and Support of People with Disabilities, Policy Options to Support Individualized and Person Centered Services and Funding.

Reference is made to the adult guardianship program on page 37, Appendix E of the draft plan. The adult guardianship program is a valuable program. 284 individuals received adult guardianship services last year, fiscal year 2000. Only 23 counties are covered by six providers, four Area Agencies on Aging and two Community Mental Health Associations.

Additional guardianships are needed on a statewide basis. The Commission on Aging recommends that the guardianship program be expanded statewide to eliminate the present waiting list and to serve all counties of the state. The program expended $390,376 in FY 2000. An additional $600,000 is needed each year.

Reference is made to the state's CHOICE program on pages 37 through 43, Appendix E of the draft plan. Indiana's statewide in-home services program of which CHOICE is a part has been recognized by the national governor's association as a national model for its flexibility and responsiveness to consumer input.

12,338 individuals received services under the CHOICE program in FY 2000. An additional 7,400 individuals were on the waiting list for CHOICE services. The present CHOICE funding is $42,623,785 per year, each year of the biennium.

The Commission on Aging recommends that an additional $32 million per year for each year of the biennium is needed to meet the growing demands for services.

Reference is made to the need to redesign the home and community based service waivers to incorporate the flexibility currently exhibited by the CHOICE program, page 43, item 17 of the Appendix of the draft plan. The Commission on Aging agrees with this statement.

On page 37, Appendix E of the draft plan, reference is made to the need of a unified vision across state agencies. Several groups have created vision statements including the CHOICE board of which the Commission on Aging chair is a member.

The Commission recommends that the CHOICE board vision statement be used as the beginning point in establishing a vision across state agencies.

The CHOICE board's vision statement is: The citizens of the State of Indiana shall have a full array of long-term care services that includes a range of individual options based on the principles of independence, quality, dignity, privacy and personal choice as directed by the consumer.

Note long-term care includes in-home care, community and facility based services including assisted living.

Reference is made to funding for community-based services being currently very limited, page 38, item 2, Appendix E of the draft plan. The Commission on Aging agrees with this statement and recommends that the state fund the 10,000 aged and disabled Medicaid waiver slots that have been approved by HCFA but have not been funded.

The state is currently only funding 2,500 individuals versus 12,500 approved slots. The Commission on Aging further recommends that the funding of Medicaid waiver slots be through a separate appropriation for the Medicaid waiver program and the utilization of CHOICE funds as a match for the Medicaid waiver program be eliminated, $4.9 million per year.

Reference is made to the Ombudsman program, the money management program, adult protective services program on page 37, Appendix E of the draft plan. These programs are under funded.

The Commission recommends that an additional $500,000 is needed for the Ombudsman program, presently $477,922, to allow Indiana to add more local Ombudsman to bring the state closer to the standard of one Ombudsman for every 200 nursing home residents. An appropriation of $400,000 is needed each year for the money management program statewide, presently zero funding. It depends on volunteers. And approximately 200 individuals are served each year.

An additional $1 million is needed for the adult protective services program in order to expand the hours of operation, from five to seven days and 24 hour access to service, presently serve approximately 12,000 individuals per year with an $856,224 budget per year.

Reference is made to the 16 Area Agencies on Aging serving as the single point of entry for in-home and community based services, page 37, Appendix E of the draft plan.

The Commission recommends the continued support and the expansion of the single point of entry for services to older adults and individuals with disabilities of all ages to include new services as they become available in the State of Indiana, and to enhance the infra-structure of the Area Aging network as necessary to stay current.

Reference is made to assisted living and adult foster care on page 43, Appendix E of the draft plan. Full funding is needed for both of these programs that are scheduled for implementation in fiscal year 2002.

The Commission on Aging established the following priorities through year 2006, along with the governor's task force on Alzheimer's disease and related senile dementia, CHOICE board, and money management advisory council.

The Commission on Aging recommends that these priorities be addressed in the integration plan: Education, in the areas of health, aging, financial planning; health care; assisted living; transportation; and employment volunteering.

HEARING OFFICER SYBINSKY: Thank you very much. If you can get that testimony to us at the end of the meeting we'd appreciate that. Okay. Yes.

JEWEL ECHELBARGER:

I'm going to come up front because I don't have everything written out like Jim did. I see many friends here and I'm glad everybody has come because this is an important day in Indiana to hear everybody's voice on the Olmstead Act.

I represent Owen and Monroe Counties and I also have the pleasure to work with some folks in Lawrence County as well and work with the elderly and disabled.

I would like to ask No. 1, that persons 65 and older be treated as equally as those who are disabled. At this point, for those of us who are working with the elderly population and with the disabled, disabled folks may find this as something that's absolutely incredible, but the elderly folks are being discriminated against.

And so if we could please equalize that we would certainly appreciate it. We have an adult day care center for elderly who are developmentally disabled. There are such people in this world. They deserve the same services as other people who are developmentally disabled. We don't want that taken away from them. At this point, as some of the programs in Indiana, the Medicaid waivers are taken away from them.

So if you'll please correct that we would appreciate it. I think the disabled and the elderly would all appreciate it.

We would like for the disabled to be able to certainly select their setting. We respect that right for everyone. I personally believe that Mascatatuck can be made into an excellent setting choice for the disabled. I've been there. I spent a week there and there are very caring people at Mascatatuck. I am very concerned to learn that the Governor plans to close down Mascatatuck. I would wish that that, at least, is left as an option for folks. Not a forced option, but an option.

I think everybody is on board when it comes to everybody having choices. I have some other suggestions I'm not sure everybody's going to agree with, but I would -- it's very obvious when you look at what's happening with some of the disabled home care funding and some of the elderly home care funding.

Look at the figures. There are lots more elderly served, right? And it's very few disabled, and some people may begin to ask why and what's going on because there's no more money for the elderly. Please notice that.

Our studies show that the Medicaid waiver services are costing ten times that of the choice services. Ten and a half times to be exact. I believe that something needs to be done to correct that system and I've come with some suggestions.

I will respect my colleagues if I am wrong. One suggestion is that there be a cap placed on the amount of money that you will provide for case management. That's one of the things that's happened with choice.

Choice has a cap on case management. The reason for the cap is to -- and this is my humble suggestion and I'm no expert, but I'm suggesting a 25 percent cap of all the funding for case management.

That would force those people who are out setting up services to focus on services to get the people the help they need and not a line of case management costs.

We are looking at folks, all of us here in there room I think, for direct services for you and not a bunch of administrative costs.

That's what I'm coming to you to try to help put together. We realize the value of the case managers whether it's mental care managers, case managers that are working with the developmentally disabled, with the elderly, it does make a difference. We recognize the value but somewhere along the line as I have looked at those things that come through our offices, services get left out sometimes and I'm very concerned about services.

The other suggestion I have is that the state please look at streamlining the administrative policy and regulations procedures, and I think that they ought to be such that every person that's sitting in this room can understand them and follow them. That we not have to have a lawyer to interpret them, please.

Everybody ought to be able to pick up a set of procedures and say this is how I do it. Can we do it on three or four pages? Wouldn't that be wonderful.

There's got to be a way to do that. If we are trying to give access let's include simplicity in the process.

This may be another debatable item but I'm going to bring it up. I believe that there needs to be at some point a cap on how much money you are going to put on services.

We have looked at some of the services and we have Medicaid waiver services running at $6200 a month. That's $72,000 plus -- think about it guys. You could do good, right? If you put a cap on how much you are going to pay, this would allow more people to be served. I think everyone in this room is looking for more people to be served. People need help.

The states got some funding problems and we all understand that, but there are other ways to do it. There are other ways to spread the money around so people can get help. So think about that. Everybody in this room, think about how it's going to affect you because that's what we are interested in.

We are also asking that providers be locally based so that people could get in touch with them. They don't have to call an 800 number and beep through three answering services before they get through.

We believe that providers need to have the same simple types of application and procedures to be able to provide these services as anybody else. And maybe a simple one page form ought to be good for providers so that we can get local providers.

Right now we are getting metro providers in the rural areas. And I'm very concerned about the rural economies. And I'm also very concerned about what's happening out there and who's really going to help each other and if they are going to help or just walk away come the weekend and say, good-bye I'll see you later.

The local people are there 7 days a week 24 hours a day. That's what we're looking for. And so we would ask that there be some kind of effort put into getting local providers.

I know our system would be happy to help you with that. We've been very successful with the choice program and we are very proud of our providers. They are quite good and we think they need to be expanded into the new system. I thank you. I wish you all well. Especially those folks that are going to be working with putting this thing together.

HEARING OFFICER SYBINSKY: Could you say your name for the record, please.

MS. ECHELBARGER: Jewel Echelbarger. Area Agency on Aging. 7500 West Reeves Road, Bloomington, Indiana. We are actually in Ellettsville. Thank you.

HEARING OFFICER SYBINSKY: Thank you very much, Jewel. Next person.

GARY GAMBINO:

Good afternoon, and my name's Gary Gambino, and I'm the Washington County Outreach coordinator for Southern Indiana Center for Independent Living.

I came from Salem with my friends Reverend Donald King and Mr. Graves, who is right here. First I'd like to get on the record something. I had a conversation with a gentlemen named Bradley Golden this morning.

Mr. Golden is 61 years and he's a paraplegic, and he's diabetic, and has some other physical problems but he lives on his own in an apartment in Campbellsburg, that's in Washington County, with attendants and things helping him.

I asked him, you know, what do you think of nursing homes? The first thing -- well, actually I woke him up -- but the first lucid thing he said was "Nursing homes. That's where people go to die." Be that as it may, part of my job is part of -- also my wife's worked in a nursing home before. I'm not a big fan of nursing homes. They are where people go to die.

And this is my friend, Gary Graves. I don't know how many of you were here, I think, in October and he had some real good testimony. And the one thing I'd like to say about the six points on the board there, on the screen, is that more accountability as far as complaints received through Ombudsman. We need more of that definitely because there was a complaint filed by me not so long ago against a nursing facility and it just kind of died on the line and that's a shame and I turn it over to Mr. Graves.

GARY GRAVES:

I don't know what hardly to say. Its such a deep subject and it troubles me to think about it, you know. There is one thing I desire as much as anything else is a little more independence.

This business of being tied to a place where you've got to sign a paper, have somebody else to sign a paper, before you can leave your property, that irritates me. I don't -- I ain't never been tied like that and I don't like it too much. The thing is they got me there for my own good, as they said. And they are paying twelve times as much to keep me there than it was beforehand.

In 20 years the price has raised a little bit but not that much. I'd kind of like to be free you know. So I can be myself in place of having to beg somebody to go there and then have to beg them some more to go a little further and so on and so forth, and it kind of irks me as we'd say around home.

I'd like to be able to do what I want to when I want to and not bother anybody. Like I did for 18 years when I was living by myself, but of course things like that is not proper for this time I guess. But I just think persons like us should be allowed to move into group homes or places like that.

I was talking to a fellow about moving into a group home the other day and he asked me about my insanity or how good my IQ was. I don't know how good my IQ was. I don't want to go to an insane asylum. I'd just like to be able to leave when I want to. And not stay away forever and it's obvious that when I have to sign a paper anytime I want to go anywhere, it's obvious I ain't going to leave. I've been there five years and ain't tried to leave yet.

I could keep on thinking about -- talking about things that irritate me but I think you got the idea that there are just things that ought to be changed and could be changed but -- and cheaper than they're being exploited now but they aren't, and I'd just like to know why you can't have a little freedom in an independent house situation in place of a nursing home or something for we people that are mildly handicapped.

I can't do much, but I can walk around a little bit and I don't have any trouble getting up and down.

So I'll go on out now and you take what I said and if you find anything you can use, use it.

MR. GAMBINO: I'm constantly assuring Mr. Graves that he will be out of his prison fairly soon. That's all I have to say. Our homes, not nursing homes.

HEARING OFFICER SYBINSKY: Thank you very much. Okay. Who's next? This gentlemen here's had his hand up.

DON MCGINNIS:

My name is Don McGinnis from Stonebelt Center in Bloomington and I would just like to say that I think more choices need to be addressed for consumers, you know, I mean, I like my way of living for eight months now. I really enjoy it and everything, I really like it.

There's only like a couple of case managers for me to choose from, between a gentleman in Indianapolis and a lady here in -- a lady from Bloomington. And I just think they should have more choice for consumers who are going into the support setup to make a choice about who their provider's going to be.

I want to be given a list. I only knew of two or three agencies and, you know, I mean, I didn't know -- they were pretty much the same but, I mean, you know, what makes one stand out from the other? What could one provide me that the others couldn't? Case managers, I think, there needs to be a more wide range of case managers. Especially if you prefer working with a guy and not a lady. There's not many guys out there. Like I said, I only knew one gentlemen in Indianapolis who I met. And the lady I have now, and she is fine, but I just think there needs to be a wider range of choices.

And I agree with the lady who spoke before about policy. You know, I was reading the pamphlet on the way down here and that was just the pamphlet and I needed a -- I felt like I needed an interpreter to read the pamphlet. And I spoke out on this issue on behalf of Stonebelt of the options a lot around the area of Indianapolis and, you know, if consumers are going to speak how the -- on this issue for others that are at home who can't speak for themselves, you know, we have to be able to understand what we are talking about and we are not going to be very effective either so that's basically all I wanted to say.

Thank you.

HEARING OFFICER SYBINSKT: Thank you very much, Don. Who else?

DIANE CANTRELL:

I'm Diane Cantrell and I'm with Aging & Community Services of South Central Indiana. We are the designated Agency on Aging for Bartholomew, Brown, Decatur, Jackson, and Jennings counties. We have been in existence for 25 years, 18 of those years we have been involved in case management for the elderly, and 13 of those years we have provided case management services for the disabilities community as well as the elderly.

The comments that we have today, I'm going to make those based on the six directives that you have. The first directive on increasing consumer choice. We would recommend that Indiana should set a start date to start a transition program using mechanisms such as buying out and closing nursing facility beds.

I'm sure that you recognize that this is speaking to the elderly and disabled who are in nursing homes and who would wish to be moved back into the community.

We suggest that FSSA, in order to demonstrate it's dedication to this type of action, consider a single appropriation for long-term care where the individual chooses his or her preferred and most appropriate setting.

Use the single appropriation dollars to fund 10,000 aged and disabled Medicaid waiver slots currently approved but have not been funded.

We also suggest as Jewel mentioned, that we simplify the waiver process so that it becomes more like CHOICE. And also strengthen the CHOICE program so that it fulfills its function of prevention of institutionalization and impoverishment for moderate income Hoosiers.

For the directive on No. 2, which was to provide information, assistance, and access to consumers to increase their opportunity for informed choice, we recommend that the state strengthen existing information services which would include funding these services so that they may be staffed on the weekends as well as the weekdays.

We suggest that they find regular and appropriate training for those individuals who operate information networks provided by the triple A's through their 800 number, from the 211 service which is expected to go statewide soon, the senior legal hotline, and the FSSA 800 numbers.

We also suggest under this directive that the state use the case management standards that are in place to measure the work of case managers and to adequately fund training for case managers throughout the state.

We also recommend that the state strengthen the single point of entry through the triple A system to home and community-based services.

I think it was mentioned earlier that the National Governors Association has recognized Indiana as one of the five model states as far as access to home and community-based services.

We'd really like to see this strengthened so that -- and I think this term many of you will have heard, pre-admission screening -- so that pre-admission screening takes place at the beginning of a process and not at the end. We would also encourage the state to aggressively pursue funding, including grants available from the federal government.

For directive No. 3, which supports the informal network of families, friends, neighbors, and communities, we strongly encourage that the state provide additional funding for the recently enacted National Caregivers Act and we would recommend that they provide funding for that particular program to the tune of $10 million.

We would also encourage the state with the development of a caregivers alliance to formulate a program similar to the caregivers alliance in California.

For initiative No. 4, which is to strengthen quality assurance, monitoring systems, complaint systems and advocacy efforts -- this happens to be a big issue with me personally -- I would -- we would recommend that specific timeliness for the expansion and increased funding for Ombudsman and adult guardianship services be established.

We would highly recommend, and strongly recommend, the expansion of money management programs statewide. Presently this is not a statewide program nor is there any funding available to assist those agencies throughout the state who are providing it at the present time.

We happen to be one of those. We have about 40 individuals that we assist on a daily basis with managing their funds and it's a very time consuming program and service, and so we really do feel like it's a very valuable service and one that the state should consider providing some financial assistance too.

We recommend the development of processes and procedures for quality assurance and we would suggest that the states expand the use of the Quality Improvement Program, developed by IU, through a grant from the Robert Woods Johnson Foundation.

The Area Agencies on Aging in their role for quality assurance and their responsibilities for quality assurance, for the Choice Program for Medicaid waivers, Social Service Block Grant and the Older American Act funds and services, have used the quality improvement program to monitor the quality of services of case managers, providers, et cetera, and we personally in this area have found that it was a very effective tool to be used with particular issues.

This particular area of the plan, of the state's plan, really does need timeliness established. If timeliness are not established we really do feel that people will have unrealistic expectations. We really do compliment the state and their staff and the programs that do impact the lives of the disabled and the elderly because the state, their staff, the Area Agencies on Aging, the providers that are here today, we have really been working diligently to implement a comprehensive plan of quality assurance, and it takes time to get a good quality plan in place. And the state needs to let the people know that a plan is going to be in place but definitely say when that's going to happen so that we don't expect it in place today, because otherwise we are setting up some false assumptions and some big disappointments and big headaches.

We would encourage that the state target funding, additional funding, for quality assurance and place it as a high priority in their FY '03 budget.

For initiative No. 5, which is increase the capacity for provision of high quality care, we noticed in the plan that the state really is going to be looking at housing and transportation and that is a big issue within the plan. We really do feel that this is an important issue.

As guardians for a number of residents at Mascatatuck, as we have worked to move those individuals into the community it's been quite difficult to find appropriate, adequate, affordable housing. So that definitely is an issue that has to be addressed within the plan.

Transportation in rural areas has always been an issue, and as we move people into the community and as people need access to services from the community they have to have, in many instances, countywide and regional transportation. So we really are very glad to hear as we read the plan that that was a high priority with the state.

We would mention that the Department of Transportation has developed a map of the state where public transit is available and they are looking at even the rural counties to establish public transit systems.

So I would encourage the Indiana Family and Social Services Administration to work closely with the Department of Transportation with these particular needs. We would also encourage that incentives be used to encourage the development of assisted living and adult foster care providers.

Presently these options are not available for low to moderate income individuals. And finally -- I don't have much more to go.

For initiative No. 6, which is creating a coordinated work force development system that recruits and supports a stable resource of direct support staff -- and as I look around this room I recognize there's a lot of staff here as well as consumers, and I bet there's not a one of you that does not agree that we need to raise Medicaid waiver rate reimbursements.

We need to do that so that direct care workers are paid a living wage and this needs to be the highest priority. We must have a work force in place before we can provide the training and require the certification that is mentioned in the plan.

As we look at the plan, I know at the beginning it talks about the fact that funding was not going to be addressed in the plan.

However, to have a plan in place and to have something that's going to be reasonable and is going to work you really do have to discuss funding, and so that's an issue that our particular area would also suggest that you do need to address, funding issues.

Thank you very much.

HEARING OFFICER SHBINSKY: Next person. Okay. Right here, the gentleman in the blue sweatshirt.

VICTOR SARNO:

My name is Victor Sarno. I live at Stonebelt. I live at a group home. Suzie, she's the one that's here. I have Medicaid. I worked two years at the city and I worked for Southern Bell. I worked for GE. My friend, Jerry, he was one that hired more jobs for us. He's the one who's my boss. So he was telling me. It would -- I want Medicaid to send money for my home.

I want to live on my own. I want to make more money. Don't want Medicaid to take money away.

HEARING OFFICER SYBINSKY: Yes.

JERRY CASTMAN:

Just building off of what Victor said my name is Jerry Castman, (phonetic). I work at the Stonebelt in Bloomington. Some of what Victor was saying was that he lives in a group home now and he wants to move out on his own.

Integrating people into the community is, it's our mission statement and I'm sure it seems like that's what we are here talking about. We are not an isolated group of staff and consumers.

We are not isolated from the community and the state has been a bunch of faceless, anonymous people who gives us money. Granted, we need those fundings to provide some of the services that we need, but by going out and integrating people into the community we have made this -- I don't even want to say issue because it's not issue -- but we've just made it part of peoples normal everyday lives to see someone like Victor working at the same job, well, he's been working at the same job for nine years now, and to make it a topic of concern for people.

Not just the state and not just us and I don't think -- we don't want to work against each other, per se, but to make everyone aware.

Maybe that's what we started to -- we wanted people to be aware of it and now that they are aware of it I think Victor's general manager would be terribly sad if Victor up and quit or had to go somewhere because maybe certain fundings weren't in place to provide him the services that he needs and what I think we've already accomplished is that we've made it.

We have integrated into the community and we've made this an issue that is important to people. And if the state -- because basically people give the state money and that's where the money comes from, the people. If it's something that they want, and obviously, it's something that we want, and I think it's something that we can all agree that is needed and obviously people can make contributions to elderly people.

We have elderly people that come out of these facilities at Stonebelt and a fair number of them have been in workshops or they have jobs or they work in both so they are contributing members of society.

If we can have the state realize that people that are in the community, the tax payers basically, are aware that people are tired of people making great contributions and it seems that the funding that we were talking about before that that should be able to be accomplished.

HEARING OFFICER SYBINSKY: Thank you very much. John.

JOHN McCAULEY:

I am one of the people on the community help segment of problems and I'm here tonight -- I apologize because of being late. I was in Indianapolis. We have a real big problem in the state because the money from the 317 plan $49.5 million, the house put the money in, but there is no money because the senate took the money out.

With the basic crisis, we are not going to get the state revenue this year. There are certain programs which we can't get for people with disabilities. We can't go 5 or 10 years and we just can't and to do so would be a very bad mistake.

I urge you to call or write your state House of Representatives and your Senators and tell them that we need this money. We need it for all our stuff and need it for people with disabilities. We all pay taxes and we need more money than anyone because we have more problems than a lot of people do, and I urge you to call your state and let them know that they really need to put the money back into the budget.

Thank you.

HEARING OFFICER SYBINSKY: Thank you, John.

BILL HADAR:

Hello. My name is Bill Hadar, H-A-D-A-R. And I am the Executive Director of Developmental Services, Inc., here in the Columbus and Shelbyville area. We have been here for over 25 years and we are also local providers. I wanted to get that in.

I want to talk a little bit about what John said and also what Diane had said. This morning when I was reading this on the internet I decided just to come and listen and learn a few things and not to participate but I felt compelled to make some remarks I feel very strong about.

First of all, I'd like to commend Peter and all of his staff and the advocates and the parents and the providers and everybody that worked very hard to come up with this plan, and there's so much in there. The transportation issues, the housing, the deinstitutionalization issues, there is just so much in there to talk about.

I'm going to concentrate my remarks on the capacity issue because when I look at the plan, the Olmstead case and the issues of Mascatatuck, we are talking about an eventual deinstitutionalization and for a lot of people an opportunity to participate in the community.

That capacity has to be there. So my comments are going to be related to the capacity issue in the community and I'm going to narrow that down very specifically to what I'm going to refer to as a term in our industry that's called wage parody. And specifically for those of you that have the plan, I'm going to reference those points for you, and if you don't I'm just going to read them for you, so you don't feel left out in the dark.

In the draft plan there is a -- on page, first of all, page 6 I believe it is, it refers to what was already up here on the screen as well as what Diane had mentioned. It's called policy direction No. 6 and it reads this way. Create a coordinated workforce development system that recruits and supports a stable resource of direct support staff -- now bear with me because I need reading glasses but I'm too young and I'm kind of vain right now to buy them -- it says here in order to meet the needs of current and future members of disabilities needs supports and services so they can live and work in the communities.

The pool of workers with significant skills and training needs to significantly increase, it is important that the state take steps to ensure a stable and motivated workforce.

Now page 7 of appendix A, item 3 it says consumers need of services of direct care employees who are qualified and trained to support people in the community. It says extreme shortage of professionals and caregivers, consumers need a choice in their caregivers as this gentleman mentioned from Stonebelt.

Current waiver rates, this is what I'm going to talk about more specifically. Current waiver rates are $7 an hour for paraprofessionals. McDonald's pays up to $10 an hour. I'm going to take you down a real fun ride on this issue in a little bit.

Many home care agencies can no longer afford to take the loss of stopped waiver services. People are going out of business.

High turnover of direct care employees, needs continuity in providers, the quality of care being provided is low due to lack of knowledge and training provided to employees.

Opportunity building between family members and neighbors being caregivers. Not enough respite care. Bear with me. There is two more references and that's going to address the point that I want to talk about a little further.

On page 19, and I believe 28 down in there, there's a couple more references where it says additional consumer advocate provided concerns are, there is one bold point that says high turnover for direct care staff and shortage of qualified and trained paraprofessionals and direct caregivers. And then there is also a little point that says financial incentives do not exist to support the transition of current providers to community based services. This is real important.

And the last point is on page 21 item No. 9 under policy options where it says, recognize the long term and detrimental affects of the direct support staffing crisis on individuals and families and the ability of the state to developing services.

Make it a priority to create a coordinated workforce development initiative with a focus on improving wages and providing educational training in the hands of recruitment to reduce turnover. So those are the specific points in the draft plan that I would like to talk about.

I've been in the business for about 30 years, 15 of which has been the director at Developmental Services and I would say folks that we are pretty much in a crisis situation when it comes to our current staffing patterns. It's extremely difficult to recruit and keep staff and there is constant turnover which I believe affects quality.

The things you just read in there are really attributed a lot to the wage issue. And I know the studies show it's how you treat people and training opportunities etc. are important too, but the bottom line is people gotta feed their families. They gotta raise a family, they gotta make mortgage payments and they may love working for you but if they can make two bucks more per hour they're out of there. And that's the reality.

And so I want to say that this is a critical area. I think it needs a priority. I think that state agency folks, obviously no one in this room, and some of our legislators are so far removed from that reality that you have to raise money to pay the wages.

You can't show up for work, go through the motions, and pick up a paycheck where we work. You've got to generate a revenue. And the reimbursement rates is how we pay our staff. Some of our reimbursement rates are 5 and 10 years old. Okay. Now let me give you an example of what's going on.

We haven't given a pay raise in two years and we'll tell you why. This year alone the price in gasoline has soared in our operating budget. It was equal to about a two percent pay raise for every employee at DSI. The natural gas that went up in the 30 facilities we have in the 10 county area was equal to almost a half a percent wage. The worker compensation premiums that I have to pay to legally stay in business equaled another percent.

The cost of living for just things like health insurance, workers comp, gasoline, natural gas would have paid a three to five percent pay increase this year. And this is two years in a row.

The point is we are going backwards. We are going backwards because I'm going to tell you what's going to happen next near. If we don't get reimbursement rates it's not going to be you don't get a pay raise. It's going to be some of you are going to get laid off and at least one of my colleagues in this room has already done that if you read through these papers.

Now this is a crisis situation and I want to bring this to your attention because I want you to take some action on this when I'm done speaking. It's real important and there is a society here of providers, parents, advocates, employees, everyone wants the best quality care.

We want to do what is right. We all want to do what is best but we are not getting the reimbursement to do it. It's like me going on to a car dealer lot down here and there is a $50,000 Cadillac over there. I walk up to the dealer and say I want that car, I am taking this car, I demand this car. Here's $10,000. I give it to him and I drive it off the lot. I'd be arrested.

You see you can't buy a $50,000 car for $10,000 and that is what's expected of us and it's got to stop. We are going to have to address this situation head on.

The thing I just want to just say -- and you know another example is, while I'm doing the poor me thing, we are trying to make the budget work and we got news, unfortunately because of shortfalls in funding, that title 20 funds which is a major funding source for all of us providers, we are going to lose at least a months funding for the month of May.

That's over $100,000 for us who serve the 7 to 10 county area. And we don't have it so I have got people here in this room that are going to county governments, United Way, begging money. They are doing chili suppers and everything else just to make ends meet. We will continue to do it but the point is we've got an immediate crisis right now we're trying to solve.

So we've got to deal with that first of all and the whole issues of pay increases down the road and it's going to take some major action. I want to share this with you for those of you who are really interested in this issue if you want to see some sparks fly in the future.

There is currently in the state of California and the Northern Federal District Court, the 9th district, a lawsuit that's been filed and it's called, I'll give you the web site afterward if you want it, it's called Sanchez v. Johnson.

This is a test case for the nation because if they can win that one we are going to roll this baby all the way across the country.

Here's what it is. I hope you got a pencil and paper because you might want to write this stuff down. In this particular case there are people in institutional care who are denied access to community care opportunities because there is not adequate caregivers to provide this service.

And the reason why there is not adequate caregivers for community based programs like a DSI is because they can't find people to work. Now check this out. Here's the lawsuit.

The lawsuit -- by the way, there's reference of the lawsuit is in reference to three federal acts. One is the Rehabilitation Act, the other is the Americans with Disabilities Act and the third one is the Title 19 Social Security Act.

You've got to get a copy of this off the web. Here's what it is. These families and individuals with disabilities are suing because they cannot get decent care because the wage reimbursement system is not there for community based services. This is the fact that's uncontested in the lawsuit. Individuals working in community based service, this is primarily nonprofit community based services, their pay range for direct care work is between $15,000 and $18,000 a year. Okay. If you're not sitting down, sit down.

Employees doing the very same work for state institutions who are state employees, their salary range is between $36,000 and $52,000 a year. I'm going to say it again. $15,000 to $18,000 if you are in the community. You do the same work working in the State of Indiana -- excuse me, the State of California it's $36,000 to $52,000. Plus the average employee of those institutions gets another $3,000 for sign on bonuses. You can imagine the fringes are a little better too.

So as you can see, this wide discrepancy is basically saying if you stay in institutions we'll hire the best that money can buy and I'm glad those people make that. But if you want to live in the community we don't care if you get served or not. So you get my drift.

You really ought to read this because it's an interesting thing. It's a test case supported by our industry as a whole and if it can be won it's going to have an impact because it will basically go through the federal courts and will force the states to put some money into reimbursement.

Which in my opinion, I think legislators like that in Indiana and the judges can be the bad guys and they don't have to raise you're taxes and they can't vote the judge out of office because he's appointed and that's kind of a political game.

But I've been up here too long so all I want to do is first of all, hopefully the people I know that work for the State of Indiana, hopefully our legislators need to do three things.

One, they really need to understand the crisis. They really need to understand it. And two, they need to care about it. They really need to feel that this is an issue that they care about. And three, they've got to take action.

And folks, as John said, it's going to come down to appropriate funding to raise these reimbursement rates because it is the reimbursement rates that allow us to pay our people. And there's a saying no money no mission. And none of us can serve anybody in bankruptcy court.

So we've got to have the funding from the legislator to FSSA in order to get those reimbursements. So we can hopefully deal with this issue without going into federal court for the next several years.

So I just want to leave you with that and if any of you are interested in that lawsuit I've got a copy with me. And as John said, call your legislators and let them know that you care about these issues.

We lose a month of Title 20 we may have to shut down. You don't see them shutting down high schools for a month. You don't see them shutting down a nursing home for a month. You don't see them shutting down public schools for a month in our society.

They are still treating developmentally disabled people as second class citizens and they treat funders and providers as a second class citizen and it's time that we make our voice known and set them right.

Thank you very much.

HEARING OFFICER SYBINSKY: Thank you, Bill. Who is next? Yes, sir.

ED ANDERSON:

My name is Ed Anderson. I appreciate what Bill had to share because what I want to speak to I think goes to the very heart of things that he'd been talking about.

First of all, I'd like to make a comment about the plan. According to Webster's, plan is a detailed method formulated beforehand for doing or making something. So far I don't see it. There are some fine principles.

So far I don't see a plan here. And you're going against the government by doing that. There's an awful lot of work I think has to be done.

I really want to address the fact that disabilities to me is a waste basket term. It covers a multitude of conditions, challenges, what have you. And I think that's one of the problems in trying to draw together the plan that we have. We are trying to cover the waterfront. And I guess we have to but there are so many different things that we have to cover in this.

I've been interested in the writings of two authors, Fleishner(phonetic) and James(phonetic) about the disability movement and they point out, to quote from yet another author, that there are four prejudices that have really covered our country in the last 50 years.

That's anti-Semitism, racism, sexism, and homophobia. But not one reference is made to disability discrimination. And that's just as real as the discrimination made in the other areas.

Disability is labeled, and wrongly so, though we understand the rationale as a health, economical, or safety issue rather than that of discrimination, and prejudice based upon disability has not been recognized by most people who are major policy makers even yet today.

Now perhaps an oversight or prejudice stems from really a fear, I think, by the public. Since everyone is subject to illness, accident, and divine powers of advanced age, all forms of human vulnerability. Well, "handicapism" is the only "ism" to which all human beings are susceptible.

We are all susceptible to that. That results in stereotypes. Many films today continue to present people with disabilities either as inspirational or endeavoring to be normal, whatever normal is, as possible by overcoming their limitations. Or some films portray these persons as disfigured monsters fighting their way to box office success as we saw in the movie Mask.

The inspirational type is personified in the Dicken's writing Tiny Tim in The Christmas Carol. And of course the recent controversy over an appropriate memorial for FDR again points out that FDR had a disability and people raising the human cry over the plans to portray our former president in a wheelchair.

The media doesn't seem to be aware of the significant number of people with disabilities in our country. Even that beyond the more obvious ones. The invisible disabilities such as psychiatric disorder, heart disease, diabetes, cancer.

According to a study published by US Department of Commerce, John McNiel said that   according to the 1994, '95 data, that over 20 percent of Americans are disabled with almost one half of those being severely disabled. Interpret that into Jackson County alone. That means 8,000 citizens are disabled, 4,000 severely so and due to medical and technological progress the disability and aging population are going to continue to grow.

It's not surprising that as people age there's a probability that they are going to become disabled. The likelihood increases. Let me just share with you the prevalence of disability and the age groups: 45-54, one fourth of the people are disabled; 55-64, over one third; 65-79, almost one half; 80 and over, three fourths of those are disabled.

These are serious realities we have to face. I've been facing that in that I've been able to stand here with this help. Otherwise I could not stand this long due to some physical limitations.

I also work with other groups such as Accessibility Council. There are people who face the realities of disability every day. They're hidden in the closet. People don't want to recognize it as such and we don't get policy changes such as we are asking for and we've got to demand that. That's the only way but we need to do it together. We cannot do this by one agency fighting another.

One thing that's been disturbing to me the last year or two has been the attempt to attack certain agencies that they're not doing their job. We don't build responsible programs by doing that. We need to work together as all agencies work on behalf of those who are disabled.

Thank you.

HEARING OFFICER SYBINSKY: Thank you very much. Next person. Yes, sir.

TOM BECKER:

Well, I'll tell you what. I didn't realize that there was so many people interested in the welfare of those of us who are not able to physically do for ourselves. I look around this room and I see a lot of smiling faces.

I want to thank particularly Karen over there. She's the one that told me to come up here today. She said you'll enjoy it. Besides that I haven't been out of the house for about a month. I've got a good education. I went to third grade three times. But the honest fact of the matter is I'm not here to -- I don't want to beg.

My condition is caused from being in the military. Now it seems like I need them and they are not there. I think that one of the biggest problems is -- it's not that fact that they don't care. It's if they are going to buy everybody in this room a cup of coffee and they all paid 50 cents per person but before we could even get the coffee they'd have to have somebody in there to make sure it was really coffee and if they are using purified water they would have lots of litigation that would take away from you're regular program, hundred cups of coffee, by the time they take that money they've probably got, they've only got enough for 50 cups.

We all should get right on our phone. I can't write any more. I make a joke out of this. I am afraid if I go to scratch my nose I might poke my eye out. We need to get on the phone.

Get a piece of paper write our congressmen and say, look, you're not looking at me you're not looking at all the needs of all the people.

That's what it's supposed to be. Somebody to be a representative of all the people. Not just certain ethnic groups. Everybody as a citizen, as a person.

If we all get on our oars and pull, our boat will go further but if somebody slacks off then it's going to go in a circle. I've been in enough circles that I know that this is not productive. It doesn't get you anywhere but right where you were awhile ago. I know the funding is a big responsibility. And it's a big undertaking for anybody to say well we are going to give this much money to these people, but we need it. I don't know why we need it but I know I need it. I'm not physically able to do for myself.

The gentleman before was talking about going into a nursing home to die. Well the truth of that is, that's the last stop. I am not ready to go in one. I don't want to because I've got a lot more living I'd like to do before I hit that and if I'm going do die I'd rather be right here amongst my friends than a bunch people being paid to watch me go. It's so much -- you know, your independence is worth much more than you ever thought.

Your independence is what really keeps you going from day to day and I have a motto that I try to live by. If I can't do it today, I'll try to do it tomorrow. If I can't do it tomorrow, I'll try to do it next week. But sometime during the next span of time I'm going to do it. You've got to try. Not being able to try you've lost it. If you don't try, you might as well go ahead and go to the nursing home and let them watch you go.

I didn't come here today with any words prepared. I just came here because I thought it was going to be protecting my right. And believe me, it is. It's not a guaranteed right, but then again, it is. It says we the people it doesn't say we the people that -- did any of you read animal farm?

That was a required reading when I was in school. They all wanted to be equal but then another group said well we're a little more equal than these other people so we aren't going to listen to you.

Well that's what it's like. It's like being put on an animal farm and being kicked around from one mud hole to another without having -- there's nothing wrong with my mind. As long as I have that I'll be in this chair. I'll do whatever it takes to be where I am.

Thank you.

HEARING OFFICER SYBINSKY: Excuse me, sir. Could we get your name?

MR. BECKER: Tom Becker.

HEARING OFFICER SYBINSKY: Tom Becker, thank you. Yes? You want to testify? Please come up.

ELDENA SHRUM:

I'm Eldena Shrum (phonetic) and I was created in Indianapolis at St. Francis Hospital.

But my mom and dad said I had like brain damage and all through my growing up years I had seizures that I couldn't help. I've been on and off of phenobarbital through my growing up years and now I'm on a different kind of medicine.

Not long ago, a few years ago, I lost both of my parents. My mom had never smoked but been around quite a bit of smoke and got cancer and passed away. My dad used to smoke and worked up in Indianapolis. He used to be a truck driver.

Then he retired but then he passed away. He had Alzheimer disease. And I lost two sisters and one brother. I got three brothers left and two sisters but I'm almost to lose another sister.

It's really pitiful and upsetting that I'm in a group home. I've been in a group home for quite awhile. Almost to go out on my own.

It's really tough I tell you and it's really pitiful that it's hard to get through and it's really nerve racking.

HEARING OFFICER SYBINSKY: Thank you very much, Aldena.

MS. SHRUM: Aldena Shrum.

HEARING OFFICER SYBINSKY: Aldena, thank you. Who else? Yes.

MARY STOCKTON:

I'm Mary Stockton and I work at an Agency on Aging with some of the people from the Jackson and Jennings county area.

I used to work at Mascatatuck for over six years and I have something which concerns me about individuals going into the community, their safety. Some of the individuals I would be concerned for the public's safety. I know that. Been there, got my emergency room trips, and everything.

I work with getting waivers and I really enjoy it. There is a lot of concerns out there that are not being addressed especially with the Mascatatuck people. There's some that can and will be very beneficial to society.

There are some that, I don't know. I was scared to work around them myself. If I'm scared to work around them and you're going to pay somebody $6.50 an hour to work around them? It's not going to happen.

The flip side is the taxpayers, the funding. Where is this money going to come from? It's never been mentioned that I know of. I've got a big concern coming in September, I'm pregnant. What monies going to be taken away.

I'm a case manager, I love my job, and yet as a taxpayer, where is the money going to come from? That's never been discussed. There's not a big magical bubble of money somewhere. You know, it needs to be used wisely.

There was a mention about the $6500 budget for someone a month on a waiver. I could live really good on that money. I have several clients who are waiting on a waiting list that could benefit from $1,000 a month. There's a lot that's not explained.

I worked at Mascatatuck with parents that want their child to stay at Mascatatuck. They've been to those other places, they've seen the abuse. I've seen the abuse. I've had to deal with the abuse. It makes you throw up. It's not perfect.

Right now we are working with two or three providers in our area. I can't get staff for some of my clients. They are not there. They're not there. Thank god these people are living with their parents. But there is a lot of concerns there.

My family's dealt with Mascatatuck in working there and with me working at Hoosier Upland. There is a lot of safety issues there.

There is people out in the community now and that's great. They're doing great but some of these individuals, particularly at Mascatatuck you can't take out and put them in a setting and put somebody there that's not trained and that doesn't care and expect to do something and that person not end up hurt. It took everything and anything sometimes at Mascatatuck to keep that client safe, period. Keep them safe. A whole bunch of horror stories there. I know that. I left in 1998.

I fortunately did not get to go through all the wonderful things that happened over there but I did read about two of my clients in the Indianapolis Star. After they were named personally, both of my clients, and it made me sick to think about what happened to them. It's kind of like I wasn't there to protect them. I'm emotional about all of this. I get that way but there's a lot of answers that aren't being addressed. There's a lot of problems.

Everybody pretty much knows the legislators, they are up there and we are down here. They don't see us, they don't know us.

There are a lot of politics being played right now. Everyone does deserve what they can handle.

They deserve the community but on the flip side, what's the cost? Is it fair for my family to pay for someone to live in the community for $10,000 a month, one person, while you've got five other people over here that you could serve with that $10,000.

I don't know. I don't have any disabled people in my family but if you've got one person versus five or ten people, is it fair that five or ten people are waiting on services while this one person is getting all of them. My clients do know that. They know who is getting those services and they are not.

There is a lot of issues there that are not being addressed. Parents, like I said, who do want their children living at Mascatatuck and they know what's going to happen and they're scared.

Mascatatuck has been a safe place. I know what's there. I know some of the staff that's still there. I know some of the staff that left because of what happened, but there are parents that still want their children there.

Why are they being denied that option? Why is it -- you know. The Yeagers out of Yorktown are very outspoken in this. They are going to be denied the option of Nancy living where they want her to live, where they know she's safe. A lot of these medically fragile people when they go into the community, who is going to see them medically? I know doctors that won't see these people. You know, they have to go to the emergency room because that's the only way they can get help. People that are medically fragile they have 24 hour nursing care at Mascatatuck.

If they are in the community, staff has to know that person. If that staff doesn't know that person that person could die with a simple cold.

There is a lot of things. Everybody thinks close down Mascatatuck get rid of all of it. Well that's going to be a bigger problem because like I said there's people there that if they -- I would not want to work with them and I know who they are and I would be scared to work with them. Physically scared for my own safety to work with them. That's not fair for the community to be put in that situation.

That's not fair to that person to be put in that situation because what happens with these people coming out of Mascatatuck when they are in a group home or apartments and they get out of hand, their behaviors out of hand. 911 is called, the police come and get them. I know for a fact that that has happened. My husband works at the sheriff's department. It has happened.

They don't know what to do. They've pulled people out of homes that were naked and they had to ask for a sheet to wrap around the person.

There's all different sides and there's no clear cut answer but somebody needs to think about something. There's a lot of different issues here because it's going to get bad and it's going to get really bad for some of these individuals.

Thank you.

HEARING OFFICER SYBINSKY: Thank you, Mary. Is there anyone else who wants to come up and testify? Yes, ma'am.

MARY OWSLEY:

Now I don't have a badge on my shirt and I don't have a big title or anything. I am Mary Owsley. I live over in Campbellsburg, Indiana.

I have a brother that's in Mascatatuck. We lived on a farm all our life and my father died in 1956. When he was living he was a good man to him and took very good care of him. After he passed away my mother took care of him until she died in 1983 at the age of 93 and I want to tell you that she did not have any life for trying to take care of him. She lived his life and not her's.

After she passed away we took him to Mascatatuck. He went there and he adapted to the place. He has done very well. He has his medical needs taken care of and we do not want to see him taken out and put in a group home because that is not where he needs to be.

He is satisfied there. He loves the people he lives with. He loves the staff. We bring him home once a year for his birthday for a family dinner and then he's always ready to go back because he wants to be with his friends, with the boys. And we want to see him left there. And like the lady said back here that I think there is positive things about Mascatatuck and it should be left open for people who wish to stay there.

Some of these people will fit in fine in group homes. My brother is not one of them because he can get very violent. Although, after he's been at Mascatatuck he has settled down. He has learned there was rules there which my mother could not do. So he has adjusted very well and we want to see that place left open and him left  there.

This is the first meeting that I have been to. Me and my sister are his co-guardians. She couldn't be here today and I'm glad I did, but there is eight of us kids and three of his brothers have passed on. One lives in Florida.

My older sister is 80 years old. There is no one in our family that can take care of him now physically and we were just so relieved when we got him in Mascatatuck and he has adapted as well as he has. We were just thrilled to death. Although, like I say I know there's a lot of these people that will adjust to a group home but he had always lived on a farm and Mascatatuck is like a rural setting more like what he was accustomed to and he has just adapted great. So I think it should be considered being left open.

I can't figure it out. You have the facilities there, why it shouldn't be left open. I mean, to me it seems foolish to do away with something you've already got. It's been in operation there for years. It should be left there for the ones who want the services there.

Thank you.

HEARING OFFICER SYBINSKY: Thank you. Who else would like to testify?

DORIS INMAN:

I'm Doris Inman, and I have a daughter that resides at Mascatatuck, and I agree with the lady that just spoke. I think that we should have an option to leave our daughter, or our families, at Mascatatuck as long as they are able to stay there. She has constant care. Medical problems is addressed as they come up and I just want it to stay open.

HEARING OFFICER SYBINSKY: Thank you.

DENISE MULLIS:

I'm Denise Mullis from Southern Indiana Center for Independent Living and I talked to a friend and told her that I would speak for her today because she is unable to come. Jane has MS. That's not her real name but Jane is 51 and she lives with her mother who is 91. She enjoys staying in her home.

I need to tell you that Jane is paralyzed and all she can move is her head.

She enjoys staying in her home and she listens to talking books. She chat's on her hands-free phone and she looks forward to the visits of her friends. Her life line gives the security of knowing that she could get help if her mother goes out to the grocery.

Jane has a home aide that comes daily and that aide gets her up in the morning, gets her dressed and she doesn't wear a nightgown all day. She gets dressed in street clothes and sits in her living room during the day where she can look out the window and see the birds and enjoy it. She has a nurse who visits twice a month. She and her mother hire someone to put her back to bed every evening. They also hire someone to help with housekeeping and cooking.

When her mother was hospitalized, Jane had to hire round-the-clock help. Had she not the resources to do that she would have been forced in a nursing home. The family have been told that they are six months away from getting CHOICE services. Jane feels blessed to be able to remain in her home. She knows that since her mother is 91 she may not have that option forever.

I wanted to speak for Jane today because I too think about the cost of closing Mascatatuck and the cost of moving everyone out in the community and I think that some people do benefit from going to the community, but I don't think that we can lose sight of the fact that we have an aging population. That this lady who is 91 years old is not an isolated example of someone who is caring for someone else.

We have many aging people that are caring for their children at home and have done that for many many years.

They have great anxiety about what happens when they die and I want them to be able to die with peace because I want them to have the resources that that loved one can stay in their home or stay in their community.

So I think it's very important as we set priorities to look at the needs within the community. To look at the needs of an aging population with aging caregivers that need the help and support they need to keep their person at home.

HEARING OFFICER SYBINSKY: Thank you very much, Denise. Who else would like to speak? Richard.

RICHARD STURGIS:

Hi. I'm Richard Sturgis. I live in a group home in Bloomington and I've been there almost a year now and the same things that I heard about some of these group homes that are out of state and stuff I want to see them left open so people who does not -- cannot afford to be out on their own can stay in a group home as long as they can and to get help when they need help and to have friends there who are nice to them and to like them and to get along with them.

Whether it's a roommate or just a friend they need it. They need a friend that can count on them and care like I do. I live in a group home with six people and I've been caring for them for most of my life.

Ever since I've been there I've been nothing but good help and my staff and my people that I live with are the people that are out in this community, they need to be in a place where they need to be trusted and helped and not dying.

I don't want to see people go into a nursing home who don't need to be in a nursing home.

I think you have a right to live in a group home if you want to be and someplace where you can get help. In the Bloomington, Indiana, area and if people want to get a hold of me I'm at Grandview Group Home. I've been there almost a year. I'm just here to help if you need any help.

Thanks.

HEARING OFFICER SYBINSKY: Thank you, Richard. Anybody else want to testify? Okay.

JOAN SHELTON:

I'm Joan Shelton and I work for DSI also. And the only comment I really want to make is as you are looking at this plan and implementing it please don't try to put so many folks in these boxes. Our folks have a lot of complex needs.

You can't just say I'm going to serve people with disabilities. I'm going to serve people that are aged. You also have to look at, what are their mental health needs? Where are they going to access services in the community? So please be aware of that. Nobody is the same. Every one is unique and you need to have responsibility to meet their own special needs.

Thanks.

HEARING OFFICER SYBINSKY: Thank you very much.

Anybody else want to testify? Okay. We've reached 4:00 and I want to thank you all very very much for coming in and supporting one another in what has been a very very good and compelling series of testimonies.

So thank you very much.

(Hearing ended at 4:00 p.m., April 18, 2001.)

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