Transcript of Public Hearing Fort Wayne
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
LEAGUE FOR THE BLIND & DISABLED
5821 SOUTH ANTHONY BOULEVARD
FORT WAYNE, INDIANA
APRIL 23, 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:
Diane Shappel
Teresa Schenkel
Alice Luebke
Mark Perry
Bob Murphy
Juanita Johnson
Fred Gilbert
Sherry Caveda
Ron E. Patrick
William Steinbach
Kathy Leighmanuell
Sylvia Adams
John Guingrich
Kathy Lyons
Patricia Jacobs
Richard Frick
Linda Wood
Junelle Austin
Kevin Miller
Jane Novak
Harold Hicks
Roxsandra Clemons-McFarthing
Sally Eulitt
Rudy Baker
Gregg Fanning
Jose Mosler
Elaine Forsythe
Deanne Woodford
Robert Guzenhauser
Marshall McGraw
Abby Flynn
Marilyn Boren
SaraLee Caruthers
David Nelson
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: Thank you very, very much for coming out. This is great attendance and we really appreciate you taking the time from your busy days to come out and talk to us about community integration for persons with disabilities.
I'm Pete Sybinsky. I'm Deputy Secretary of Family and Social Services. And I'm here to sort of conduct the meeting. Basically, what we plan to do today is to give you a short overview of what was responsible for the plan and basically outline major points in the plan.
And then it's an opportunity to listen, and we're really here to listen more than anything else, so I'll try to speed through my presentation to make sure that we have enough time, that everybody gets a chance to talk.
Before we start out I would like to do a few administrative details. First of all this is Cindy on my left here, and Cindy will be doing interpreter services for those in need. If anyone needs interpreter services for this meeting please raise your hand right now and Cindy will continue. Otherwise she gets to rest.
(No response.)
No one needs interpreter Cindy. I would like to point out some materials -- David Nelson, our partner at the Independent Living Center here at League of the Blind and Disabled mentioned to me that you have a resource center, an information center for persons who want to learn more, and we have left some materials here that we brought that can be added to that resource center. I believe it is over outside this room in the back. But we do have a copy of the plan in braille and we do have brochures which outline the major elements of the plan for you to take home with you, in addition to copies of the plan which I have brought with me. If you would like a copy of the plan afterwards we will be glad to give it to you.
We also have the data on disks and on tape so folks that need to use that capacity, those are available also.I would like to first begin by recognizing Representative Gloria Gigline (phonetic) who is here to be with us today. Thank you very much for coming Representative, we really appreciate you being here.
As I said, this is a listening opportunity and we have asked some of out top administrators to come out from Indianapolis to be here with us today.
Jackie Pittman, Jackie if you could raise your hand. Jackie is from the Division of Disability and Vocational Rehabilitation and she is a Deputy Director there and, basically, if you have questions or issues with respect to either aging or disability issues, please get to her.
We also have Gayle Rense (phonetic) and Nancy Bobay (phonetic) from our Fort Wayne office. Gayle is from Vocational Rehab and Nancy is from our Developmental Services Bureau Office.
We also have Sandra Clark from the Bureau of Aging and In-Home Services Central Office, and Willard Mayes, Assistant Deputy for Mental Health from our Mental Health District Office, standing next to Representative Gigline.
I would not be a good guest if I didn't want to recognize our host, and I really appreciate David Nelson and the League for the Blind and Disabled. I want to thank David for actually working so hard to turn people out at this meeting and getting you all here. This is a wonderful attendance and really I think it is the best we have had so far. Not that we have not had good attendance, we have had very good attendance and this turn out shows the best of the best, I think.
If I could I now would like to go through a brief presentation of the effort that we've gone through to develop this plan and first is to sort of take an overview of the background that we're looking at.
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 is 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 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 emphasize 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 emphasize 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, that 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.
I'm going to go along first of all to the sign-up list and then after that it will be an open floor and I'll call on whoever raises their hand. And that's it, that's my review. I tried to keep it short. And now it's time for us to listen to you. We are going to record everybody's comments. And we have court reporter here to make sure that we have everybody's comments down.
We do need you to speak your name and to spell it out if it's difficult to spell so that we can put you on the record. In about ten days we will have this up on FSSA's web site as we will every public meeting that we have.
We are going to take that information back and use it to improve the plan. We would, because there are so many people here and so many people have signed up, ask you to please limit your presentation to about three minutes, if at all possible, so that everybody can get their turn to say what is most important. At the end we will give everybody an opportunity to extend on their comments if they so want to.
Finally, written letters and other written type comments, e-mail, and so forth, can be submitted to us by April 27th. If you don't feel comfortable standing up and speaking today please just be assured that you can write in and those comments will be given equal weight to anything that is said in these public meetings.
Without further adieu, I'm going to literally turn the mike back to you and I will start calling out names. For the address for written testimony we are making that available at the front desk. Some of you have asked for that so that will be at the table where you checked in so you can pick that up there. We are going to move this microphone back in the aisle way a little bit and we will ask that, if you can, please come to the microphone.
If you need some assistance with it, we will be here to help with that. One other logistics thing, you probably saw that there are bathrooms, there is a bathroom right over here and there are more down this hallway.
I won't have the mike now but I think my voice projects pretty well so I will call names, and if you can get up to the mike, please do so. If not please speak up and we will definitely get you recorded.
So if I could ask Diane Shappell to come forward.
DIANE SHAPPELL
My name is Diane Shappell, S-H-A-P-P-E-L-L. I am the President of Aging and In-Home Services of Northeast Indiana and we provide services to 11,000 individuals each year.
I will just speak to a couple of the issues, I have additional comments in my written letter.
First of all we feel that it's very important that this plan speak to all ages and all incomes. Does it cover the developmentally disabled individual that has an elderly caregiver whose incapacitated? What creative options have you identified?
In policy direction number one it is imperative that Indiana reduce it's bias to institutionalization of the elderly. Indiana should set a start date to begin a transition program using mechanisms such as buying out or closing nursing home beds.
According to the administration on aging report, Florida has 306 nursing home beds per 1,085 plus population while Indiana has 787 beds and it is ranked 50th in the nation.
Indiana should use a single appropriation for long-term care and let the individual choose the option that best fits their needs.
It is important for the state to simplify the Medicaid waiver process and strengthen the CHOICE program. Policy direction number two, existing information services needs additional funding so information departments can also be open in the evening and weekends so individuals can contact them.
Maintain a single point of entry. According to a report by the Pugh Charitable Trust (phonetic), in a study of long-term care systems in the nation, and I, quote, combining as many of the services as possible will reduce considerably the confusion that exists for users of the long-term care system.
You don't have to go to a different Social Security office if you are disabled. You don't have to go to a different Division of Family and Children service office, and you shouldn't have to go to a different organization for each service that you want.
Although the system is not perfect the problem lies in inadequate funding for these services. It is vital to make sure a quality assurance plan is in place. Timelines should be set for the expansion of the Adult Guardianship Program.
In policy direction number five, it is important to have assisted living and adult foster care and that must be nurtured in our local communities. The Medicaid Waiver Program providers have dropped from the provider list due to inadequate payment. We have a provider who is going to withdraw from the program and this is a provider who has one of the few home-modification companies at all. For all the Medicaid waiver rates, it must be adequate or we are not going to have any in-home services community plan.
Funding and commitment with timelines, action steps, and responsibilities are the meat of the plan. Without them, we have to ask where is the beef.
What might appear to work in Indianapolis may not work at the local level so we very much appreciate you coming out to Fort Wayne to see what we think. We ask for continuing dialogue in this most important plan for Hoosiers who need these services. We ask that each Hoosier of all ages and abilities can proudly say that they live in Indiana where the state cares about them and where there is no place like home.
HEARING OFFICER SYBINSKY: Thank you very much, Diane. Teresa Schenkel.
TERESA E. SCHENKEL
Good morning. My name is Teresa E. Schenkel. My last name is spelled S-c-h-e-n-k-e-l. I have a couple of things that I would need to live independently in the community.
Number 1, would have access to independent living skills to be able to learn how to cook, maintain my apartment, and how to budget my own money.
Number 2, I would also need access and affordability for adaptive equipment such as effective equipment like a computer, a Braille writer, which is a machine that types Braille, and also including in this a reader that would come in and read my mail on a daily basis which would include bills and other correspondence.
Number 3, also to have affordable transportation to get to work, to the stores -- grocery store, the drug store, to get to church, the bank and other places in the community.
Number 4, to be able to have access and the training to get a full-time or part-time job in the community. At this point I am unemployed and am having to depend on Section 8 housing to live in the community at this time. Because of this I am unemployed and have to depend on this program.
Number 5, I would also need training in -- to be able to ask for services on my own. And finally, because of what I have mentioned there is affordable transportation but it is very limited. We need longer days as well as weekend services, especially on Sundays because at this point I am not allowed to go to church which I would like to be able to do. There is also Section 8 help, but there is a very long waiting list.
The things I have mentioned are they located in the plan? And at this time I would like to thank you for letting me speak this morning.
HEARING OFFICER SYBINSKY: Thank you very much, Teresa.
Alice Luebke.
ALICE LUEBKE
Thank you for coming. My name is Alice Luebke spelled L-u-e-b-k-e. I have a brother who is mentally retarded and my questions to you are what safety nets are going to be put in place if all of this falls into place? The safety net meaning the safety of the people with mental retardation.
What activities are going to be in place for these persons? And the assistance with medication is necessary. What work is going to be made available? Who is going to make the work available? Is the state providing any type of work for the mentally retarded now? If not, when can we possibly get something like that in place?
The community, as far as I know, has few restaurants, grocery stores that I'm aware of, there are others I'm sure, that's all I'm aware of.
Transportation is an issue. Knowing how to go to the grocery store, what money means, persons that have no ability to read, is this going to fall out of focus when some of this is put in place? Who is going to take care of these people for this type of thing?
Institutionalization is not an issue. Possibly a community living situation is. My brother now is in a group home. Thank God for the group home. He now has a safety net where previously he was on his own, living in the community. I was his caregiver.
My siblings were part of the care giving issue, and at this point in time that is no longer available to us due to an issue that occurred to him. Now I would like to make sure that he is able to maintain his livelihood without being disrupted again, and is that available to him? What are your plans for the group home?
And I guess that's about my bottom line.
Thanks a lot.
HEARING OFFICER SYBINSKY: Thank you very much, Alice.
Mark Perry.
MARK PERRY
Thanks. My name is Mark Perry, P-e-r-r-y.
I am a father of a son who has severe disabilities, mostly he is mentally retarded. We have chosen to keep our son at home and be a member of our family. For that decision we have been taken advantage of by the system. Our family life disturbed by outsiders and treated generally as if we are incapable of the decisions for our own child.
Our son is now institutionalized. Our family has been severely effected by this when home health agencies quit the money for caring for our son. In exchange for this money from the state to these agencies we have experienced our home being set on fire by two different aides who did not know how to even cook simple foods, boiling macaroni, turning the oven on, et cetera.
Our son, who cannot talk, was simply taken away by an aide who left a note saying if we wanted him we would have to come to her house and get him.
Our son's needs are being ignored while the aides watch television. Our son's needs are being ignored while they did their homework for school, our son being left alone in public while aides conducted personal business.
Also, I know that all the agencies did was to reassign their aides and left us with no one, not correct, the wrong one. And there is more, furniture in our home was damaged because of carelessness, aides smoking in our home, we made it clear that they were not to do that.
So what was the reaction of the home health agencies involved? They cut off our services to our son because we dared to complain to them.
At present we have not had services for six months because we dared to complain to one large group. These agencies in the state have excuses and they are just that, excuses not reasons. We have been told that because we choose to live in the country we cannot expect to have services. So does that mean that the state and these agencies have the right to tell us where to live?
The agencies have sometimes sent good people, very good people at times. These are far and few between. The agencies claim to us and to the state that their people are thoroughly trained. This usually means that they know how to get their assignments and fill our their time sheets.
Through experience we have found that few of these people know how to cook, clean, diaper a 12 year old, or deal with seizure activity that our son suffers. The agencies simply collect their money. The state forms are completed and our son and our family are not considered.
None of these agencies or the state understand that we love our son. We want him in our family. We are very capable of hiring our own aides and training those people.
Self-hire is a right that we claim. Please give us a real plan with real dates and firm implementation. Don't load us down with more rules and regulations. Almost no one understands the ones that we have now. We need this help immediately.
I want my son to come home. If a trial program is set up, please put me in it. Our needs are immediate. Our son is suffering and our family is suffering. Please allow us the dignity and respect that other people in the state are given.
Thank you for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Mark.
Bob Murphy.
BOB MURPHY
Good morning. My name is Bob Murphy, M-u-r-p-h-y. Again, I thank you for coming.
I am speaking from my own experience also. I am, according to the state, severely and profoundly disabled. I also care for my mother who is quite elderly and has had an accident and my experience is based on that or my comments are based on those experiences and those of my friends.
I think that Indiana has mostly overlooked the minority and also it's hidden treasures, the disabled people and their families. To be disabled in Indiana is to be assumed to be stupid and certainly not useful. I am not stupid and I am useful.
To be the family of a severely disabled person is also to be treated as if the whole family is not very bright and not useful. Many disabled persons are able to be contributing citizens. Certainly their families are able to be contributing citizens who vote and pay taxes.
Among the biggest barriers for full participation in society, both for the disabled person and for his or her families is the bureaucracy which will not permit self-hire.
Bureaucrats, some bureaucrats, I apologize for lumping them all together, some of whom have little or no experience with disabled people make the decision for them, shoving money to home health agencies and nursing homes but never considering the individual or the family.
In my own experience, the bureaucrat in Indianapolis is always right and always knows what is best for us even though they don't even know us.
The families who object are often treated quite harshly. Input from families is not usually welcomed by any of certain bureaucrats of Indianapolis, home health agencies, and nursing homes. The state by not recognizing needs force families to break up, possibly become dysfunctional, and obey the whims of whatever group is in power at that time.
Indiana's attitude and practice of warehousing or jailing its disabled citizens must stop. Given the decision making for a disabled person's future to so called home health agencies or nursing homes only creates another layer of bureaucracy, another barrier to full participation, another barrier for families to control their own lives.
Self-hire home health aides is years overdue in Indiana. People with disabilities and their families do vote and we do pay taxes. It's long past time to begin a clean, simple self-hire process throughout the state. And that's what I'm asking for. We need a real plan, complete with timelines and faster implementation. Put the decision making where it belongs, in the hands of those effected by those decisions.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Bob. Juanita Johnson.
JUANITA JOHNSON
I'm Juanita Johnson. I would like to thank you too for coming and I would like to thank you for the opportunity of speaking on behalf of our two adult mentally retarded sons.
Our oldest son spent about, almost, 30 years here in the Fort Wayne State Developmental Center. He has since moved into a group home. He has been there about nine years. There has been good and bad things.
We have a second son who is also mentally retarded and lived at home until he was about 23 and he too is in a group home. And I guess the thing that bothers us the most is the fact that both of our kids are heavily medicated. Mark, after leaving the Fort Wayne State Hospital, has developed diabetes as a result of a lot of medication and a gain of about 70 pounds.
Steve, when he was home, was a very mild mannered, laid back individual and now he is on a lot of medication, has a lot of problems.
And I guess our concern is that we think the group homes are great, but we think eight people is about twice as many as should be in them because it is stressful to the staff, it is stressful to the residents. That causes the staff to not stay. It causes them to hire people who are not qualified and consequently that boils over to disturbance for our kids. So we find ourselves doing most everything the group home ought to be doing, and I don't know what happens when we are not able to do that.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Juanita. Fred Gilbert.
FRED GILBERT
I am Fred Gilbert. I am an impact and refugee worker at the Division of Family and Children. My comments today are especially related to the work I due with refugees.
I work heavily with refugees. One of the major problems that I am having in access, especially with disabled, and primarily families who are at risk of institutionalization or further degradation is interpreter services.
We are a pilot county for electronic benefit transfer and Allen County has taken it on their own to translate those materials, provide training in Vietnamese, Burmese, Bosnia, and also the Hispanic. The Hispanic has very good support in state agencies.
But if you look at the study that I also presented, this is a graph study from Indiana University, commissioned by the Fullinger (phonetic) Foundation to assist them in planning for Allen County.
When we did our EBT papers we ended up with 100 letters in Spanish. We ended up with over 150 letters in Asian languages as well as Bosnia. And the report indicates an enormous increase in the immigrant community. And, specifically, I would like to ask Gloria to take that back to Wynn and Jeff and all the others including the Governor's office because when Dr. Rita asked for 13 million and 10 million in both years of the biennium for English as second language, and the last word I had was a $700,000 appropriation for English services. This is ridiculous.
Again, we are proceeding with our own county purchase of interpreting services. The biggest trouble I am having right now is just as your policy direction number two says, culturally appropriate. We have many families who are not American, whose background is often traditional but their vision of what we can offer is often couched in fears and unfamiliarity.
Interpreting services paid for by the state, I think they are critical especially having been through the OCR presentation last December. I appreciate the invitation to appear today and especially the invitation sent directly to me at the office.
We are proceeding, we are putting these language services into our budget and have identified interpreters, who right now largely take care of our responsibilities by doing it on their own.
I appreciate Gloria's attendance today also. Anyway, language services and access to culturally appropriate services, especially for the disabled, has been a major, huge factor that I have seen in my professional world, especially with refugees.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Fred. Sherry Caveda.
SHERRY CAVEDA
My name is Sherry Caveda, C-a-v-e-d-a. Thank you, sir, for taking this time and coming to our town and giving us an opportunity to share with you.
I am the parent of children with disabilities. Eleven years ago when my children were injured in an automobile accident I entered an entirely new realm and that is the world of disability.
Prior to that time I had raised three children who were at that stage and had become adults already. Never in the time prior to my children being disabled had anyone ever challenged my ability to parent, question my judgment or suggested that I did not know what was best for my children.
From the time that we left the hospital after my children finished rehabilitation and I went home I have not experienced a day, I don't believe, that someone hasn't challenged my ability to parent or had some opinion other than my own, regarding what was appropriate or best for my children.
Entering into this world of disability has had a profound effect on my family. And I would tell you it is not the issue of disability that is my concern. It is the ability or inability of the system to provide needs to my family.
Everything we receive, we receive in relation to a medical diagnosis. Everything that is available to us is available to us based on the particular medical needs that my children have.
Rarely does anyone consider the dynamics to the entire family situation. I would also say to you that we do have some very good programs. My children are, after a period of eight years on the waiting list, were waiver clients. These programs are wonderful.
However, not one single home care agency has ever been able to fulfill the plan of care in eleven years.
Each year money that is allocated to my children for home care reverts back to the system because there is never, nor has there ever been in that eleven years, sufficient workers to fulfill the care that we require.
There has also not been a system in place that enabled us to have the care when we needed the care. When we as a family determined that care was most appropriate. In particular for our family because my children are in regular education classes, early morning care. We tried for five years to staff our home situation in those early morning hours, it never happened.
I now, and have for the last five years, gotten up at 4:30 each morning and done the care that my two children require alone so that they could be on that bus at 7:00 or 7:30.
That was a much easier plan for me than waiting to see if workers would actually show up at my house. We also require care in the evening.
Again, because my children have in fact been integrated into their community. They are in school. They are in regular activities and so the only time that their care can be done is in the evenings. That is also very difficult thing. And I cannot tell you how many times, as a family, we have been accused of creating problems or being the problem when, in fact, we know the reality is there just simply are not workers available.
I would also say I have worked really hard for eleven years to be a part of the answer. I am not a whiner. I believe that if we come together in dialogue that we can solve problems, but I do not find that the system is responsive and I stand before you today, sir, and I say, I feel very skeptical about this system.
I've read the draft. I do not see within that draft answers. I see a reasonable identification of the problems that we, people such as myself, have been saying for eleven years. These are not new problems. These are problems that have been exacerbated year after year after year.
I believe that we have to be a part of the answer but I believe that we have to know that the Family and Social Service Administration, that the Governor's office will generally be responsive to the input that we give you, and that, today is my greatest concern.
When you actually develop a plan -- because clearly what you have there is not a plan -- it does not say how you plan on resolving these issues. It simply says what the issues are. Are we going to have an opportunity to respond to that real plan? Because so far the programs that have been implemented by the Family and Social Service Administration are not necessarily the answers that I, as a family member of individuals with disabilities, would choose as answers.
And I hope that you would continue this dialogue. That you would allow us to be raised to a new level. That we would have an opportunity, after you have real answers, to give response to that.
I would say to you -- and I speak this on behalf of my daughter who would have been here by the way, but she happens to be ill today. She wants to know -- we've worked so hard, even particularly this year on House Bill 1950 and that is the Medicaid buy-in bill. The bill that would allow individuals with disabilities to buy into their Medicaid insurance, return to work and -- we thought we had come pretty far with this process this year, you know, it's come through both the House and the Senate and I'm very concerned about whether the Governor is going to actually sign that bill into law.
Because all of these other things that I have said to you are relevant only in this sense, if we don't give people with disabilities the opportunity to work, to earn their own livelihood, to live in not just apartments but have home ownership, to raise families in the community, are we really free? Have we really provided equality? Have we really, truly made an effort as a state to do for people what they really need?
So many people with disabilities don't want to be cared for. They simply want to have services available so they can care for themselves and provide for themselves. And so I would say to you, sir, as we all leave today and you put this plan together, make another effort to have public dialogue.
I thank you for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Sherry. Ron Patrick.
RON E. PATRICK
I'm Ron E. Patrick.
Hi, Peter, remember me from Lake County? I was a case manager. I have a lot of experience with community living for people that are, quote, unquote, mentally retarded, have mental illness, and are living in a community. But at that time in Lake County I spoke about, you know, how important it is for people that I was case managing for to live in the community.
But for me to live in a community, because I do have a disability, a physical disability, even services for me impacts those people as well, so I want you to understand that when I talk about a disabled person I'm talking about everybody that needs that sort of support, that direct care support.
And I think the key is going to be greater funding for that direct care staff that works with me, that works with that person with the disability, that person that you make a relationship with that comes into your home, that, you know, cooks your food, that puts you to bed, puts your pajamas on, that washes your clothes, that takes you out to the grocery store. There has got to be money for them to be able to survive. There is not money there for them. And so greater funding for the direct-care staff is very important.
You know, families are overburdened by the responsibility of the disabled relatives. I am the oldest of four and the state actually relies on my parents to keep me at home so that they can care for me. Fortunately, I was able and
I'm also informed enough to, once my father's primary insurance no longer funded the care that I needed, you know, I went to poverty so that I could become a recipient, quote, unquote, of state Medicaid funds. And so I live independently.
I've been living independently for five years. I have home health services which I've needed since '96. I was able to take care of myself up until '96. And what these people do they come into my home, they bath me, they put my clothes on, they help me with my medication, they cook for me, they wash my clothes, they will pick up things for me to go shopping, they will also give me emotional support if I'm feeling bad because you develop a relationship with people.
This is a very intimate relationship that you, the State of Indiana, must fund. You must fund this relationship the staff is going to have with that person with the disability that lives in the community.
The quality that I have experienced over the five years has varied. Many times I have had very troubled individuals come into my home to assist me. They do good work sometimes. I have been very fortunate the number of people that are very helpful, that I still keep in contact with that, you know, truly cared about me in a holistic way.
But there is others that have come in, they have problems of their own and they don't take care of me to the quality where I tell them to put my pajamas on and please get out of my house.
This is the kind of quality that you are going to get if you're just paying them $7.00 an hour. And you don't pay them for mileage. I get aides that come in that don't have insurance benefits. They can't get their teeth fixed.
Their back is killing them because they can't go to the doctor. They have poor wages and they don't have any reimbursement for traveling to my house. So what they try to do during their day is they come to my house and they have to rush over to somebody else's house, and they've got to rush over to somebody else's house, and they've got to rush over to somebody else's house so that they can make a living wage. And these are the most important people in my life.
It's not the schedule or them sending people out. I can see why organization might be important in terms of getting everything to work together from the agency standpoint but from my standpoint that person that comes to my house and puts my clothes on for me, gets me out of bed, cooks my food, is the person that now helps me to be independent.
I do not want to overburden my family. I have responsibility to them as a role model. So I need to do that. It's not going to get better for me. And there is other people in the state, I know, that are experiencing these same sort of things. But the state relies on my family and other families to keep us a secret. We are silent.
And the funding needs to be there for the direct care staff or there is not going to be any community living. You're going to have more fires, people's houses burning down, you know, people dying because of direct care staff.
I think though it's a good initiative because there are people dying in those institutions and those state hospitals and, you know, we have a right to live in our own homes, you know, equal with everybody else. So just respect the family of the disabled individual, the caregiver that comes in to help the family, and most importantly me, people like me. That's all we're asking for because we are, sorry to say, and I don't mean to surprise you, we are citizens of the United States of America.
HEARING OFFICER SYBINSKY: Thank you very much, Ron. William Steinbach.
WILLIAM STEINBACH
My name is William Steinbach, I am representing myself. And S-t-e-i-n-b-a-c-h, my wife has suggested that I spell my last name.
Now, why I do make appearances such as this, the Olmstead decision has become a repetitive fact of life. What makes legislators come to the decision as follows: How can they reach a judgment that it is preferable, for example, to sentence a fellow human being to the rest of their natural life penalty in the health care center of exorbitant monthly cost over treatment at home which can be many times happier.
How can self-hire by the patient be compared to the more costly nursing home environment currently offered? Very clever rules have been introduced to prevent certain patients from hiring their own aides. For example, if you can stand and transfer, but if you have to have a lift to get out of bed and into your wheelchair the home health aide is not able to do this.
If I can't transfer from my wheelchair to the bed by standing and -- I need to use a slide-a-board -- but indeed a home health aide is not able to do that.
If a patient can't be bathed and doesn't have a shower stall that will accommodate a wheelchair, ship them to a nursing home where it is readily available. What's stopping them from having a self aide to give them a bed bath?
How in this time of physical constraint the obvious dollar savings of self hired home health care over nursing agency costs are not being realized by the Indiana legislators, it's almost "constrictorial" or at least somebody has been bamboozled.
Please don't force your disabled constituents into a court of law. Thank you very much for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Ron. Kathy Leighmanuell.
KATHY LEIGHMANUELL
It's Kathy Leighmanuell, and it's spelled L-e-i-g-h-m-a-n-u-e-l-l.
Three years ago I made a decision, medical decision, about midnight that put my mother on a ventilator and she went through rehab.
It was as a result of post-polio syndrome and a mild stroke. She went to rehab for about six weeks. When I left rehab I had not a clue what bringing her into my home would mean. I sought education as one of the policies and I can't stress enough, I have learned so much in three years but it has not been easy and I often would feel -- I tend to be more of a fighter than a backer, you know, someone who backs away. But I think about families who don't have someone or people who have a disability who don't have that fighting family member who will make five phone calls a day to find out what the real deal is.
So I really stress to you education, Medicaid waiver, Medicaid PA, none of it meant anything to me. It does now. That's my first point.
So many people made such wonderful comments. The other thing is supplement. I keep my mom at home because I had two choices, she could come home with me on 24-hour care or I could send her to Valparaiso or Indianapolis.
I could not have her that many miles away from me, in that kind of, you know, in that kind of a condition. So I made the choice to bring her home.
For the first three months we were on Medicaid waiver. I had one hour per day out of 24 hours that I had a nurse who would come in and suction her trach. Even though I had nurse aides in the home I still had to be there to suction the trach. What a waste of dollars was that?
I had to learn about PA and then when I learned about PA I was able to get nurses in the homes. Three years into this position she is very stable. She gets up in the morning with the help of a nurse. When she is in her wheelchair she cooks her own meals. She can do everything independently. She has friends in the neighborhood. She is able to be with us in our home to see her grandchildren. However, we cannot leave her alone because her previous polio condition made it impossible for her to rehook herself, suction herself.
We get about eleven hours a day, five days a week of nursing care and shorter hours on the weekend. Everything else we supplement. Our family is big enough to pitch in and we can supplement.
My feeling is with the hire your own hours or whatever that is called, Medicaid is paying a nurse and I have not an idea what that rate is right now, for eleven hours in my home and most of that time they are baby-sitting. They are there in case a hose comes off. If we could use those dollars we could hire college kids.
Sometimes we hire really good, responsible high school kids to do the same care once she is off and she is stable. I think it would be such a savings if we could decide what to do with those Medicaid dollars.
I think that, you know, I have learned that you are the victim of the regulations. You are a victim of the regulations and obviously the state puts those regulations into effect because you think you're going to protect us and protect the client. However, who best to protect my mom than me. I should be making those decisions and I think that it would be cost effective. I'm not sure, but I think it would be.
So thank you for your time and thank everyone who may come.
HEARING OFFICER SYBINSKY: Thank you very much, Kathy. Sylvia Adams.
SYLVIA ADAMS
Hi, I'm Sylvia Adams. Thank you for letting me speak. I am speaking for my son, Zach Adams, who is twelve years old and has cerebral palsy, has a mental disability, and he is legally blind.
I am taking care of my son. I want to have him in my home. I do have aides right now that come to my home. Unfortunately, they just recently took all the insurance away from the employees. Some of them stayed and some are leaving to find agencies that do carry insurance.
The ones who have stayed they have compensated them by giving the aides more hours. So now you have people working 12 to 14 hours trying to care for people and they are totally exhausted.
He receives PT, OT, and speech. Our insurance takes care of 80 percent of it. Medicaid waiver takes care of the rest. As of now he does have aides. I don't like the word homebound. I hate to see that futuristically for him. I take him everywhere. I go to McDonald's, to church, everywhere I go there he is right beside me.
I have tried to before to get baby-sitters to take care of my son and they are fearful of taking care of a child who has disabilities. They are afraid they are going to hurt him, not take care of him correctly and then get sued.I do not want my son institutionalized. I want him living at home with me but I need your help.
Years ago when we were considering taking my son to the School For The Blind we had asked them for help, how do we get through this?
What they had told my husband was to go at the lowest poverty rate, go get a job at McDonald's and for me to quit my job and then my son could have all the care that he ever wanted, ever needed. This is wrong. My husband should not have to quit the job that he had and I should not have to quit the job that I had, and we didn't.
People with disabilities is not going to go away. People are getting older, accidents happen. It could happen to you or it could happen to me. More premature babies are being born. Please hear what I have to say today and take what is being said today. I know that you are one person, but I know that you can make a difference. One person can always make a difference.
Please get rid of the word homebound. My son is young and what happens when he gets older is in your hands. Please give my son a future.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Sylvia. John Guingrich.
JOHN GUINGRICH
My name is John Guingrich, spelled G-u-i-n-g-r-i-c-h. I live here in Fort Wayne. First let me tell you that I am a son, a brother, a husband, a parent, an employee, an advocate, and oh, yeah, a person with a disability. So as you see to me it's one part of me, it's not all of me. Each one of those things I mentioned carries certain responsibilities and thankfully for me at this moment in time my disability, in my opinion, doesn't greatly impair any of those. The most that I can't do is tie a tie so we can thank my wife for getting up at 6:00 to tie my tie.
However, in the future it is possible and pretty likely that my disability will impact me greater, that I won't be able to care for myself as I do now. I always wanted to be independent to do what I can for myself and to know that there are resources available if I can't because that's the way it should be.
It scares me at the time when I may need services they won't be there. The state needs a plan that is quick and efficient and meeting the needs of people with disabilities. It needs to be based on the people it serves as opposed to paper and process. Because, quite honestly, the person with the disability we don't give a damn about process, we care about our needs.
Ronnie and Elaine both mentioned that, you know, there are times whether you lie or not you get the services you need. As I get older and my kids get older before I make them provide the services I need, I expect those services to be available in Indiana. They are available in other states. And probably the reason I'm crying is because this is the part of my life I don't think about. I refuse to think about the future because I don't know what it will be in Indiana. I want it improved. I want it improved.
And today should not be the last meeting on this. We know what we need. The state should know what we need. In the draft that I've read it mentions tons of problems and very little solutions.
People with disabilities are the most creative in the world coming up with solutions to meet our needs. I expect us to be included. I expect a plan from the state. I expect it to be quick, efficient, cost effective, and to keep me in my home as opposed to a nursing home as I get older.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, John. Kathy Lyons.
KATHY LYONS
My name is Kathy Lyons, L-y-o-n-s. I live here in Allen County. I wasn't even planning on testifying today. So many individuals have given such excellent testimony regarding many of the needs and the lack of services in the state of Indiana.
I've had a disability for over 30 years. And like John and a lot of other adults here as I mature in age I will probably need more assistance. Right now I am working so I can hire those things done that I can't do for myself in order to live in my own home.
I have worked for the state previously and I have heard many excuses over the decades, and I'm talking decades, at least 26 years of excuses with the state when it comes to, well we can't do this, it's going to take years to get this implemented, we will not allocate the money.
Recently in the last year I was asked to work with the Indiana Medicaid Action Coalition working on House Bill 1950 which would enable many individuals with disabilities to be able to go to work and to be able to buy into Medicaid so that they would be able to still receive the medical services, the prescription drugs, and the in-home services that they would need.
We got a lot of feedback from the state and some of it was very disconcerting to me. They were coming up with budget projections saying, oh, well it will cost so much more money if we implemented this because we'll have these people that we have to pay in-home services for. Our response, of course, was, you're already paying for those in-home services you don't count them twice.
One of the big concerns I have regarding funding for many of these programs is what kind of a stand are you for, Mr. Sybinsky, is OMMP for, is the head of FSSA going to take when it comes to getting the funding to get these needed services for people with disabilities in the State of Indiana.
Are you going too take an active stance? I challenge you to basically say, we want these bills funded, we want these services funded. If you sit back there and you don't take any stand at all your silence is basically telling the Governor, don't fund it. So I challenge you.
HEARING OFFICER SYBINSKY: Thank you very much, Kathy. Patricia Jacobs.
PATRICIA JACOBS
My name is Patricia Jacobs. And I have had the same answers that Kathy has only mine has been for going on 31 years. I have a daughter who had viral encephalitis at the age of two months. Now anyone that has lost a child to some kind of a disease or accident or death knows that when they come home disabled and especially when they need care and they are going to remain as little children for the rest of their life even through adult life they grow that they have many health problems.
And it started back, first of all when she was about eight years old I was told if I didn't get her into the school functions that I would be taken to jail. That they now had special ed that she could go and be schooled and I was very innocent because I was a very protective mother. Then I said, well, I can't go to jail or I won't be there, because I had no knowledge. As everyone has said, they have no education on what's out there. What really is offered. It has gotten better through the years.
So I started her in school and they said she could be schooled in her own home district. Well then the, quote, unquote, normal children outnumbered our group of ten and they moved them and they rode by bus. And I'm sure there has been a lot of people that know the experiences of being bused out of their home district to go to school someplace stuck off in no-man's-land because we already live in Pony Town, we can't get the services there. Nobody knows where we are.
If you are not in a big city and I feel for the people that even live in a city that is well known and don't get services. Us people that are on the outskirts that live in small towns or farming communities don't get a fraction of what they get and what we do get we have to fight for.
We have to call --I've been with every agency in Fort Wayne. I've been in agencies in Elkhart, Goshen, DeKalb, and I want to tell you something, I see waste in all the facilities.
It would be better to let the people -- and I'm sure you have to run, you know, a check and balance system on it but if they really have the need there for their loved one to be taken care of there is a way to follow that without setting all the rules because each of these individuals are different and each of them need different things.
Why they have to go out and fight for something that someone has that choice, and I am not downing people on drugs or alcohol, but they had a choice to begin with whether they wanted to take this stuff and they take it and they can get help and they get special privileges. And my child is told, we don't have the money. And I turn right around and I see people that are -- even in my own family, extended family, that have been alcoholics, paid. They go and dry out, get them in a home. Get them started on their own feet. And I'm thinking, why is it that they can get this help and my child who didn't have a choice, who is now a young adult, and I'm getting close to the age where I may have to end up being taken care of because things are physically going wrong can't get the help.
Parents that take care of their children are under stress and it's one of the worst things that could happen. And I can imagine how you must feel sitting up at that table getting all of this up there but it was a choice you made because you wanted to get into politics.
My husband was in politics and I know how stressful that can be, even in a small town and he is representing, you know, quite a large number and, I mean, after eight years of service my husband said, to heck with this stuff, it's not worth it, it's killing me. So good luck.
But in the meantime think about it, you may need us. But I am just here to say I thank everyone for listening. I admire all of you people that have come to talk out. I just -- every time I see this I just -- and I wish I could get down to Washington, I really do, and down to Indiana because I would like them to take care of my daughter, the ones that make the decisions, for a month. They would have her back. But I would just like to see them experience what some of us go through and the rest of us have to deal with and take care of and watch a loved one suffer.
So that's all I have to say.
HEARING OFFICER SYBINSKY: Thank you very much, Patricia. Richard Frick.
RICHARD FRICK
Hi, my name is Richard Frick, and I'm from Hunter Town, Indiana. My disability is a quadriplegic from a spinal cord injury 13 years ago. In '94 I was divorced, which I was under Medicare. During the divorce it -- and the revamping of the Medicare -- my private insurance that I had at the time wouldn't cover my cost. I was without for practically a year. That was the hardest part of the time of my life. I had to have the help and to get it covered and I ended up having to pull out of my pension.
I had learned about the CHOICE program, and I'm on the CHOICE program finally, after a little over a year's waiting period. They sort of rushed me on, to get me on as soon as possible. I have had the CHOICE program ever since.
The private hire program when they got that initiated -- I've been on that for right around a year now and it's been working out fairly good. I still have to rely on the agency to fill in the extra days, because the private hire program does not have the nursing program which I have to have skilled help so I can do my other bodily functions.
The work with the agencies -- I've went through practically every agency in town. They are very much understaffed, no nurses, no home health aides. I have heard just about every story in the book.
The problems with some of them too is -- I had a nurse who basically put me in the hospital. She was changing my catheter -- she changed my catheter. She ruptured my bladder. She put me in the hospital so I could get it taken care of because I was bleeding. By the time that the urologist got the bleeding stopped my blood pressure was 220/140, I was near stroking. I spent 24 hours in there, came back home, turned right around and switched companies. Everything that could go wrong just about did go wrong.
For me to stay, you know, as a viable human being we need more nursing, more in-home health aides. And public transportation out in the -- more in the outlying areas. I am just about five miles from public transportation, so if my van goes down I've got to rely on my kids. One which lives about 25 miles away and the other one lives in Ohio, and family and friends and stuff like that.
The longer that you're injured and if you don't stay in constant touch with everybody or
11 -- you lose a lot of your friends because they don't really know how to accept you or to deal with your problems. But as far as my mental condition, it's never changed from what it was before.
We have got to try to teach you all of our needs and wants to keep us out of the nursing homes. I've seen some friends who have gone in there. I talked to them from the paralysis care network that I'm associated with. Friends who don't get a bath but maybe once or twice a week because of the state rules, that's the minimum.
Bed sores, pressure sores, and it goes on and on. That's why we need as much of your help as possible so we can get the extra funding to keep everybody out of nursing homes so we can live a halfway normal life.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Richard. Linda Wood.
LINDA WOOD
Hi, my name is Linda Wood. And I am more or less, kind of, speaking on behalf of the group that I am associated with, and it's called Partners in Policy Making Class of 2001.
In my group we have, like, seven women who have autistic children and one woman has two and they have been on the waiting list for CHOICE and Medicaid waivers. And I know that the Governor and the law has been passed for 200 more Medicaid waivers being added. And I know the law is currently being reviewed because of the budget plan, and I know that it is 923 million short.
And I feel that these women have had to go through an awful lot. They have had to endure a lot of things that most women would not even be able to deal with.
We were talking over the weekend and we were informed of the problems with the budget and everything and a lot of them are frustrated. They don't want to have to give up their child just to be able for that child to get medical attention or the equipment that they need.
There is one little boy that was trying to get a companion dog, and the mother was denied, so he could go to school. And I know the school systems can deal with a dog in the school and I know they should be made to do it. And this little boy is a unique little boy.
The Medicaid buy-in would help a lot of disabled people go to work and continue making a voice in this community.
Myself, I am a very stubborn person and I like to speak out for a lot of people and I know the hearings are being held in different parts of Indiana and I know you are heading to the southern part of Indiana pretty soon, but the people in my group are up in the northern part, LaGrange and that area and they could not do it.
I still feel that the Governor -- I think if he is really made aware of what is going on with the disabled people I think he would change his mind. Because I did meet the Governor in March and I did shake hands with him and he seems like a very nice person.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Linda
Junelle Austin.
JUNELLE AUSTIN
I'm Junelle Austin. I am a person with a disability. I am friends with Elaine Forsythe, and I consider her good friend. And Kathy Lyons, and you heard from Ron E. Patrick, and John, and I am going to tell you a little bit about my story.
About 15 years ago I was diagnosed with a disability and I was told that I would never work, walk, drive, basically, would be a burden to my parents for the rest of their lives which scared them. They very much overprotected me.
I am the oldest of three kids. Needless to say, we will cut to the chase, because I graduated from college. I have a four-year degree in social work.
Right now one of our biggest needs, at least to me, is the House Bill 1950 and I am here to talk to you about that and how it's effected me.
For 19 years I lied. Okay. Just point blank that, I lied to get my way through college, to live in my parents' home, to do an internship, and I had a spend down that was huge. When I graduated last April I decided to stop lying and to come out and to speak. The only problem is I got my first job and it was full-time. And when I got my first job they said there is no preexisting, well, there is.
When I was hired I was told that insurance would come within 90 days and all the other perks of the job seemed good for someone who was coming right out of school and who is a social worker, case management position, and working with people with disabilities, it was great so I took it.
Thirty days after I was into the position I get a notice from my employer that the benefits would not start until 120 days after I was employed. Okay. So after I was there for 90 days I get another memo that the insurance had been changed and I had to wait a year. In the meantime I'm still getting spend down but because I've chosen to work, because it's my choice, my spend down was $1500. My medications average $1200 a month which I need to be able to work.
Now, I was bringing home $1800, give or take, and if you want to figure that, comes rent, medications, utilities, and such things it doesn't add up and it doesn't work.
I now have insurance. I have regular private insurance. And I am here to say I am a positive thing for the House Bill 1950. This is something that the government needs to see that it can work. I am off the system but what I had to do to get there didn't have to happen, and it doesn't have to happen for other people. And I am here to challenge you to stop the lying and to make a commitment and to be honest.
You know, I guess my biggest thing is that I have had so many people lie to me in my life that I promised myself when I became a social worker that I would never lie to those people, and I want you to make the commitment so I can go back to my job and work with people with disabilities and tell them that they can stop lying, that it's going to be okay.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Junelle.
VOICE: I would like to thank you for the opportunity of speaking here today and I am here on behalf of the Fort Wayne Alzheimer's Support Group.
We desperately need an increase in CHOICE funding. Presently we have such a long waiting list that by the time the CHOICE services come around for the patient who has Alzheimer's, since it is such a progressive disease, they usually, one, have either died, or, two, they are now institutionalized in a nursing facility. So the Alzheimer's patients basically, many times are totally left out of the CHOICE program due to the lack of funding.
The second thing that is a concern for us is we feel that there is a definite need for a free-standing therapeutic adult day care center. Definitely for the Alzheimer's patient because this would really give needed relief, rest for that caregiver who is caring for that patient at home.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you very much.
Kevin Miller.
KEVIN MILLER
My name is Kevin Miller, and I am a student at Ball State right now. I am here doing an internship at The Sentinel and the thing that I have had trouble with is getting attendant care. It was almost impossible to find people that would help me for the 10 weeks that I was going to be here. And I have already had five people in nine weeks and none of them have been paid. They are being paid through voc-rehab and it takes forever for them to get paid and they are getting -- the one is getting so he doesn't even want to work any more because he is not getting paid.
Another thing is getting information about services available is almost impossible too. Voc-rehab has never informed me of CHOICE or Medicaid waiver until this year, and I am now signed up but now that I am on the waiting list that's going to be five years before I get that.
And the last thing is how can you hold a job and keep all your benefits that you need to pay for your attendant care.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Kevin.
Jane Novak.
JANE NOVAK
I am Jane Novak, N-o-v-a-k, with the Alliance for the Mentally Ill. We have 1700 family members in the State of Indiana, 250 of those are here in Fort Wayne.
I am the mother of a 47-year-old son who has schizophrenia. I have taken care of him now for 27 years. I must say at the beginning with not much care or help or education from anyone.
I, at that time, was a full-time employee of Social Security. I am well acquainted with many kinds of disabilities but I have never seen so little done for those persons who suffer with mental illness and mental retardation. The stigma that they have to endure is horrible.
As a parent I too suffered with that stigma but I didn't let that stop me. I have been his caregiver entirely. Many times we were told my son should attempt to be independent, should be on his own. We tried all those things.
Housing becomes a big problem and this is where the Olmstead Act is very important to our people. We all need a home. What would happen to you if you lost your home today, much less be suffering with a mental illness. Much less, our people when they do finally receive medications that work for them, and my son is one fortunate enough to have that luxury and is able to go to work, but there are many people that will not hire our people with mental illnesses.
My son was hired by my brother-in-law's company. He is the owner of that company, and I more or less started our own kind of supported employment system a long time ago with a family business. And my son will tell you today, now that he is doing so well on one of the very new drugs, and I want to touch on that, that what gave him back his self esteem was the opportunity to get up and go to work and pay taxes. And he has gotten some of that money back because he didn't earn enough and that too was a delight for him.
So like all of us these are the things that we all want. I don't want you to forget these are human beings that deserve the same respect that you and I do and I give my son that respect. This is the way we have raised him and we still have him in our home.
My husband is 77. I am 75. We will not be here forever. My concerns are what does happen when we are gone and many of our family members in the alliance who are the caregivers are in their 70's and 80's and what happens with these people.
So we all need to pay attention to those things. A home is of the utmost importance. Very good, low cost housing has to be created for these people.
I must now touch on Medicaid buy-in and I must say at this point, ditto to everything Sherry had said earlier, not to go into all of that detail but the Medicaid buy-in is a very important piece of legislation. And being the full-time volunteer advocate that I am, I am pleading with every person in this room to go home and either write or call your governor and your legislator and the director of Medicaid and tell them how you feel about this piece of legislation and the pieces of legislation relative to the medications.
Because you must remember, once our people get well enough, as my son is, in leading a productive life and working, if they do not have the means to pay for their medications what happens? Relapse, re-hospitalization. Medicaid is very important and our people are entitled to what we call the first-line drugs. Our physicians should be able to direct what medications are needed for the patient like my son. I don't want that to ever change.
Medicaid, in the State of Indiana, we are one of 14 states in the entire country, that now may be 12 but I believe it was 14, where we do not have automatic entitlement to Medicaid based on the disability termination by Social Security.
That's disgraceful. If Social Security is paying disabilities, why are we in Medicaid spending all that money to reinvent that same wheel and then take all that time that our people are without the coverage that they need. You are paying a bigger price in order to maintain those programs when you don't look for these kinds of shortcuts.
The caregivers, as I mentioned earlier, are getting older and they too are going to be needing certain kinds of care themselves. We have one family that they are 85 and 87 taking care of a 43-year-old young man and I don't know who is worse, but yet the family continues to plug away.
So I thank you very much for being given this opportunity today. And as an advocate, again, I must plead with every person in this room to write to your governor, your Medicaid people, and your legislator. You will make a difference on the pieces of legislation that are pending there. This week is very important.
Thank you all, very much.
HEARING OFFICER SYBINSKY: Thank you very much, Jane. Harold Hicks.
HAROLD HICKS
Thank you very much for the opportunity to represent Clark Center, my name is Harold Hicks and I represent Clark Center.
We have taken positions on each of the six policy directions and I won't go into that in the interest of time. What I would like to do is note that we at Clark Center served about 7,000 people last year. Our beds at the state-operated facilities were reduced from 60 to 41. We wholeheartedly agree with the community reintegration, and as a matter of fact have two projects which we are currently in a cooperative venture with BMH to reduce the beds at the state-operated facilities.
I would like to focus on two things. One is the ACT teams which we have put the structures together for and are implementing and we would solicit support for that effort because what we see is, as the level of intensity and need for those people coming from the state facilities, we are going to need those ACT teams to shore these people up in an appropriate way.
The second thing I would like to do is as the deinstitutionalization process continues the level of intensity also increases. We would like to be in negotiation with what parameters are reasonable to be able to take people who are severely mentally ill and maintain them in the community.
Our anxiety is that we will be required to essentially service people without the necessary assets and level of intensity to do that.
Again, we have been able to take 16 people in about the last seven months who some had been in the state operated facility for as long as 17 to 20 years. The projects are still new but they are operating well at this point.
Thank you again, sir, for the opportunity to talk to you.
HEARING OFFICER SYBINSKY: Thank you very much, Harold. Roxsandra McFarthing.
ROXSANDRA CLEMONS-McFARTHING
Good morning. I will pronounce my name very slowly and then I will spell it for you also. I know that my name is an opportunity for many people. My first name is R-o-x-s-a-n-d-r-a C-l-e-m-o-n-s, hyphen, M-c-F-a-r-t-h-i-n-g.
I am a member of the Indiana Governor's Commission on Aging and this morning I am representing the Indiana Governor's Commission on Aging. I am providing a statement on their behalf.
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.
Thank you for this opportunity.
HEARING OFFICER SYBINSKY: Thank you very much, Roxsandra. Sally Eulitt.
SALLY EULITT
I'm Sally Eulitt, and it's spelled E-u-l-i-t-t. I want to back up what Gene said about Medicaid. It is very, very important and very difficult to get through the system. For those of us that are on disability and receive Social Security disability income, sometimes our medications are more than our income. Sometimes I have doctors that help out and give me some of my medications that if I bought everything every month it would be $300.00.
I am also concerned. I'm an advocate for people with disabilities. I'm concerned about senior citizens I live with that go without medications or take it every other day to manage. Something needs desperately to be done about it.
I also come from a rural community that we have transportation problems desperately, you can't go anywhere. We have counsel on aging which has our NTS system but our NTS system would charge me $82.50 to come to the doctor here in Fort Wayne and back which is ridiculous. Who else would pay that much to go to a doctor? Fortunately, I don't have to go to the doctor except every three months for my vision and my diabetes and other problems.
And fortunately, I have a brother that brings me, otherwise I would not go to the doctor. People with disabilities need education and implementation back into the community.
Fortunately, I've always worked, for many years before I became disabled and have been able to function. This last year because of diabetic complications I was laid up for a couple of months with my legs and had to have help with home-care nursing. And I understand these people that have to help every day are desperate and I only needed it for a couple of months but I was told I had to be homebound and couldn't go anywhere.
I couldn't go to church. I said, what am I going to do about my advocacy meetings because I'm on the board and I'm also a partners and policy graduate and I need to do lots of advocacy.
I write many letters and your letters do count. Get busy. Two years ago I wrote a letter concerning the assistive technology that most of us need to function in this world. It took me 16 years to get through the rehabilitation system to get the equipment I really needed. And I don't want that to happen to anyone else.
The process has to change. And my assistive technology letter was read on the House floor by Gloria, praise the Lord.
HEARING OFFICER SYBINSKY: Thank you very much, Sally.
RUBY BAKER
My name is Ruby Baker, sir. I would like to say thank you for allowing this time for all of us people, the ladies and gentleman, here in this room that are speaking here today.
I am a person with two types of disabilities, one physical, one mental. My physical happened when I was seven years of age, polio, which is reoccurring. My mental has happened through all the domestic violence that I went through over the years from my children being sexually abused.
I am an advocate for the people with mental illness. What I am here to ask you today, sir, what do you have to offer us, for the people that equal rights assists to maintain our independence with care? Provision for personal needs of daily living include independent living centers. And the assistance that we need to get to our jobs and education, transportation to help us people with all disabilities, individuals reach our goals so we can feel more confident, and be more independent, and so we can support our families.
Thank you, sir.
HEARING OFFICER SYBINSKY: Thank you very much, Ruby. I have three people mentioned here to speak together: Greg Fanning, Mark Eckert, and Jose Mosler, and Elaine Forsythe is going to do an introduction.
GREG FANNING
Yes. My name is Greg Faring. I would like to live in the community.
MS. FORSYTHE: My name is Elaine Evans Forsythe. I am an advocate with Indiana Protection and Advocacy Services and we just heard from Greg Fanning.
I've had the unique pleasure, as part of my job, to work with colleagues who are residents of the Fort Wayne Developmental Center and they are very proud to be here today.
Greg just told us that he would like to live in the community, and Jose who is also the president of People First, which is an advocate consumer organization for the developmental center, is here to share.
JOSE MOSLER
My name is Jose Mosler and I am the president of People First, and I want to live in the community. That's all I have to say.
ELAINE FORSYTHE
I would also like to speak as Elaine Forsythe, the consumer. I agree with Ronnie a colleague and friend. I agree with Sally, also a colleague and somebody I consider a friend. I am an individual with a progressive illness and as I see things like House Bill 1950 potentially not be signed due to budgetary concerns I realize that effects me.
I am one paycheck away from not being able to support myself. Any of us with a physical disability that requires attendant care do not have private insurance that will cover that.
The day is going to come that I will either have to declare myself as homebound in order to receive Medicaid personal assisting, or I will have to lie like some of us have had to do in the past.
My options, currently, are either being home-bound and poverty struck and let my college education and my many years of experience lay by the wayside in order to receive the help dressing, eating, and in my transportation that I need.
It was ordered that this state, as well as the 49 other states, quite a while ago were to remove homebound language from the Indiana code.
That was part of the Olmstead decision. Yet it remains and because that remains, individuals, like myself, every day must get up and make the decision to either forego care, lie to the State of Indiana, or give up any hope we have of independence so that we can receive the very basic medical and attendant care that we need.
And I'm here today as a consumer to state that I believe that is illegal but more importantly for an event like today I think that all of us, the secret as Ronnie so eloquently put it, suffer daily from the indignity of that. I beseech you to not be silent as an organization on issues like House Bill 1950. Your silence is a message.
We know from other states that things like Medicaid buy-in, which would be an opportunity for an individual like myself to continue to work yet have the services that I need, we know that it's fiscally sound in other states yet we have agencies here in Indiana stating that the fiscal impact will be a negative one.
It doesn't take a rocket scientist to figure out that if I purchase Medicaid and can keep personal attendance so that I can go to work every day and remain a taxpayer this is fiscally sound. And the multitude of other programs that I remain off of will also impact positively fiscally.
So I beseech FSSA, I beseech OMPP to not remain silent on House Bill 1950, and I also beseech you to take a look, once again, at the memorandums, all three of them, that were issued to this state as well as the 49 others, and most other states have responded, to remove the language that requires me to remain homebound, unemployed, unable to go to church, unable to participate in my community, so that I can receive the assistance I need in dressing, in feeding myself, in obtaining my medication.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Elaine. Deanne Woodford.
DEANNE WOODFORD
I am Deanne Woodford, W-o-o-d-f-o-r-d. I am with United Senior Action. Just real quick the United Senior Action is a senior advocacy group.
We have about 50,000 members statewide and approximately 1,000 in the Area 3 area. We are in support of the concept of most everything that has been said today. However, we just want to bring a couple of things to attention.
First, we want to thank The League For The Blind and Disabled for hosting this meeting and we want to thank FSSA for being here.
The six major policy directions outlined in the draft plan sound fine. The myriad of options presented sound fine but they do not produce a comprehensive plan. United Senior Action says, so what?
The CHOICE Board which is designated by the State, by State Law, to recommend long-term care policies for Indiana did so in 1997. Did it go anywhere? No. This plan guaranteed that all Indiana citizens shall have their long-term needs met with services of their choice in the location of their choice. Did it happen? No.
In December of 1998 the long-term care dialogue group, also established by the State, presented another comprehensive set of recommendations for a new long-term care system that would ensure that the State of Indiana is publicly funded long-term care system shall provide a full array of long-term care service options for all citizens who need assistance. Did it happen? No.
These are just two of the sets of recommendation that's been made. We do not need another vision statement. We do not need another set of major principles. We need a commitment from our State Legislature. We need a commitment from our Governor to implement the plans, whether it be this one or the ones that we already have but we need a commitment to get the work done.
So then the Governor, by January 1, 2005, hopefully before, to make a public commitment that no elderly or disabled Hoosier would be forced into a nursing home or other institution because no other options are available.
Again, choice, we've heard it so many times today. Choice is the answer. Now, I've had my state legislators ask me, well, how are we going to fund it? Well, it's going to come out of Medicaid money. It may cost the State a few extra dollars the first year or two but when the Medicaid money goes down for what we're paying for the nursing homes because we're paying less for home services we're going to start saving the state money.
Surely enough national experts have been consulted, planning meetings have been held to know what is possible to make such a commitment. It is this commitment that the consumers want. We have been encouraged by the application for Medicaid waiver for assisted living, adult day care, and adult day care services.
Now, I will testify here something good about FSSA, they do listen because in Richmond, when this man presented his opening statement he said that there was a Medicaid Waiver Plan in place that was going to be implemented and I asked, how soon? I didn't get an answer but he also didn't say that again today, too.
We are deeply discouraged by the fact that they've applied and received from that waiver for 10,000 home care slots including 5,000 for bringing people out of nursing homes and has done nothing to implement. We are deeply discouraged that the administration seems bent on a funding additional Medicaid waiver home care by taking money out of CHOICE. Won't work. Rather than funding by diverting Medicaid money from nursing homes so the money follows the client for the service of their choice in the place of their choice.
All of these recommendations have been given to the Governor. The United Senior Action calls for a recommendation to the Governor to start with the recommendations that he's already had and make a commitment to long-term care.
HEARING OFFICER SYBINSKY: Thank you very much, Deanne. I also want to thank Elaine, Greg, Mark, and Jose who I neglected to thank after their testimony. Robert Guzenhauser.
ROBERT GUZENHAUSER
That's close. My name is Robert Gunzenhauser, that's, G-u-n-z-e-n-h-a-u-s-e-r. I just have a very short story I want to tell you. I have a young friend who is in his middle 30's now. He was hit by a truck getting on a school bus when he was about nine years old. He has been wheelchair bound since that time. His life now is completely controlled by having services in his home at least twice a day. Once to get him up in the morning and get him in his wheelchair and in the evening to take him out of his wheelchair and put him in bed.
Three years ago his father died. His father and mother were providing the other services that he needed during the day. Now his mother, who is in her middle 60's, is his sole caretaker at the home and there is nothing, that I know of, in place that if she can't provide services that he will have to be -- if he can't get services the way he's getting them now, be put into some protective atmosphere, which I think would probably destroy him because he's had independence all these years and now he wouldn't have it any more.
That's my comment for today.
HEARING OFFICER SYBINSKY: Thank you very much, Robert. Marshall McGraw.
MARSHALL McGRAW
Thank you, my name is Marshall McGraw and I just want to say that I am homebound and I have bad days and good days, and you know you are always going to and for the most part -- I used to -- before I used to work and I still want to work but I won't be able to make it at home alone. And that's all I want to say.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Marshall. Abby Flynn.
ABBY FLYNN
My name is Abby Flynn, that's A-b-b-y F-l-y-n-n. I have three children, two are mentally ill. My son, the second one, has been in Richmond State Hospital since '77. My daughter, who is my youngest, is here in Fort Wayne. I have three beautiful, healthy, grandchildren and that's the reason why I'm here today.
My organization is the organization of National Alliance for the Mentally Ill. There are three points that I would like to make. I really have a lot of them but they were so well covered before now I won't go back to them.
The first one is, are you preparing my son, who has been there for 77 years and others like him, to return to the community before they leave the hospital?
And the second one is, quality assurance. Do we have the quality assurance needed?
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you very much, Abby.
Marilyn Boren.
MARILYN BOREN
My name is Marilyn Boren and thank you for having us today.
I guess I'm one of the fortunate ones. I have real good help from CHOICE which I didn't even know that we had CHOICE when my Medicare stopped. The girl that was with me she told me that because I needed extended care and with all the things that were wrong with me I would have had to go into a nursing home which I wouldn't have been here today if I had gone there because well, I have fought lots of battles with the help of CHOICE.
But the thing I had to wait two years before I could get the help and I have found out since then that there are lots of people that don't even know CHOICE exists, and they have asked me about it because I'm not supposed to be here anyway now, but I am.
Thanks for all the help and the people that kept me in my home so that I could get better and be here today. And thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Marilyn. Saralee Caruthers.
SARALEE CARUTHERS
Hello. I want to thank you for your time today. My name is Saralee Caruthers. First name is S-a-r-a-l-e-e. The last name is C-a-r-u-t-h-e-r-s.
I am here today to state the fact that I was working at one time, I believe, twelve, if I've got my history correct, full-time and since the summer of '94 I have experienced quite a bit of total confusion and have been up in the air about if I really do fit into the social world.
Surprisingly I was able to get on Social Security disability after so many years of my parents trying to get me on it earlier and they were always told that I was not qualified.
I have been very, very fortunate with many helping people from many organizations: Goodwill, Vocational Rehab, Turnstone, Lutheran Social Service, and let's hope if I left out anyone I will think of them before I get through here.
However, I have needed transportation, and although they do have transportation coming through it's not always reliable. I have appointments to get to on time. If it is a 12:30 appointment then I need to be to them -- coming to pick me up at 12:40 ain't going to cut it. And believe it or not, yes, there was a situation like that.
And I need to have the continued support to be allowed to live out independently on my own. I have been living out on my own pretty much close to about 15 years now. I feel as though that if I could just get back to work full-time that I would be much better.
Hopefully, it would be much better than it has been since the summer of '94, because I feel like I'm still dragging my feet, although I have all these great people helping me. You know, why aren't I getting up and getting going and getting things done the way I should be?
I also have procured in the last, luckily, two years a hearing disorder, Central Auditory Processing Disorder, that this headset and my microphone and the adaptive equipment is not covered by Medicare and it was $600 hobby that I took on myself. I've been in speech. I've been struggling. I'm still struggling with time management and disorganization and that is probably, maybe, close to a 90 percent roadblock for me still. I'm just getting tired of being ragged out and I want to return back to work full-time.
There is still a lot more work to be done.
Thank you for your time.
HEARING OFFICER SYBINSKY: Thank you very much, Saralee. We have gone through the list of persons that have signed up to testify. I want to ask one more time if Betty Paradise is here?
(No response.)
Now, I will ask if anybody else who has not signed up would like to say something, please come on up and give your name and we'll move ahead.
DAVID NELSON
Peter, I want to thank you for not having a watch because you should have been out of here a half an hour ago. Thanks for coming out today. I wanted to comment on just a couple of things. Maybe some tie into what's been going here but I think you've seen today that there a lot of people with a lot of different disabilities that have a lot of things in common and yet there is a lot of things still missing in the community.
We're looking for your plan to include those but it doesn't right now. The meat is not there right now, and I understand that it will be forthcoming. But there is some common things that you've heard here. Not enough workers, we need to pay them more. We need to make sure that people can hire their families and friends. Not enough transportation, no ability to maintain health benefits when they do get into the community. A myriad of problems that we need you to attend to but they won't be attended to until you put them in your plan.
Our hope today was that you would see the faces and hear the voices of the people that you are talking about. I think you've seen that. I would like to ask that when the nuts and bolts of this plan are done that you bring them back to the public for a review period.
Because until we see what's happening we don't know if it's in your plan. And that's been one of the things today. Is it in your plan? Today it's not. We want to see it when it is. We want to see it before it goes to the Governor. So that's my number one request.
I thank you for coming out. For going all over the state because I know you are putting in some miles on this project.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you very much, David. Good summary. I really appreciate the hospitality that you folks have given us here and the opportunity to interact with you all and to hear the many compelling stories that make up the lives of the persons here in Fort Wayne and the Fort Wayne area.
We really appreciate this and I will be taking all this back and will breaking that into the planning process and I can only say that I really expect that we will be getting together again on a regular basis because this public dialogue is very helpful to us.
Thank you very much for coming.
(Hearing concluded at 12:00 noon, April 23, 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 10:00 a.m. on the 23rd day of April, 2001;
That said hearing was taken down in stenograph notes by Andrea Jacobs 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 4th day of May, 2001.
_______________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2009
