Transcript of Public Hearing Indianapolis
BEFORE THE INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
IN THE MATTER OF: INDIANA'S PLAN FOR THE COMMUNITY INTEGRATION OF
PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
PETER SYBINSKY, HEARING OFFICER
INDIANAPOLIS PUBLIC LIBRARY BRANCH
2502 SHELBY STREET
INDIANAPOLIS, INDIANA
APRIL 17, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Sybinsky
Public Comments:
Clarence Bolden
Written comments attached as Exhibit 1
Bob Cantee
Jess Smith
Mary Jane Phillippe
Written comments attached as Exhibit 2
Donna Gore Olsen
Written comments attached as Exhibit 3
Sharon Byrkett
Mary Godsey
Sharon Jones
Frank Migliano
Joseph Lee
Bea Nicoson
Rod Pebody
Cindy Schoettmer
Ron Gardin
Duane Etienne, President & CEO
CICOA The Access Network,
Area 8 Agency on Aging
Lddrena Girton
Andrea Wherry
Jim Lentz
Emma Sullivan
Arlene Franklin
David Hanains
Pat Casanova
Bureau of Aging and In-home Services
Dale Dole
Bureau of Aging and In-home Services
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: My name is Peter Sybinsky. We have all sorts of high tech stuff but it's not going to work in this small room and I don't see any need to try to make something happen that doesn't -- so I'm just going to give what was a slide show or overhead line.
The objective is not for us to give an elongated presentation of everything that we want to say. The idea is to hear what you have to say. So I just want to go over a little bit of background though so that everybody here knows some of the things that have happened and have gone on.
The State, as many of you know, has been in the amidst of significant change beginning with the closure of Central State Hospital in the early '90s and with the closure more recently of New Castle State Developmental Center and Northern Indiana State Developmental Center in 1997 and '98.
There has been a large scale movement of individuals to communities from institutions in Indiana. In mental health we have 500 fewer beds than we did ten years ago, and a total of 74,000 persons are served by community services.
In the area of developmental disabilities, 700 persons have been transitioned from institutions into communities across the State, and 4400 persons are being provided community services. So there has been a movement in Indiana in that direction.
There are funding processes that have been increased and improved, and various waivers of Medicaid regulations have been achieved by Indiana, the most recent of which have been assisted living and adult foster care which makes these new services available to people in Indiana.
And then we have the 314 activity, which I know some of you here have been key in making happen, but Act 314 was a measure passed by the 1999 legislature which appropriated $39 million for services in the community for persons with developmental disabilities.
Mental Health has taken on a project of moving long-term patients from institutions into the community and that project alone has moved 23 people into the community in the past year.
These are just some of the significant things many of which have just recently happened in the last few years that are important to this effort of bringing people into the community and serving people in the community who have needs and who have disabilities, but obviously more can be done.
There are many States that provide many more community-based supports than Indiana and a wider variety of services, and the idea that we have many miles to go is something that we begin this planning process with.
The planning process that we're talking about that has resulted in this meeting started with Governor O'Bannon's executive order which was put out in September of last year.
He asked us to do several things with the planning process for community-based services and the improvement of community-based services and the de-institutionalization of many people who can be served in the community from institutions.
He wants us to build on what we have done. To involve the elderly and persons with disabilities in the process of planning and we've tried to do that throughout this process, and to provide community integration for everyone who can benefit from it.
So whether you're in an institution or whether you're not yet in an institution, we want to make sure that we provide for community-based services for those people who can make use of them. And he also asked us to assess the State's compliance with the Supreme Court's Olmstead Ruling, and we've done that.
The draft plan which I hope most of you have been able to look at has been encapsulated in the brochure that I passed out, but I've got copies of the plan up here.
We have also a braille version for those folks who might be able to use that and we also have it on diskettes for people who are visually impaired who use the computer as a mechanism of interacting with information.
So we're trying in many ways. In fact, we do have Spanish language brochures if there's anybody here who knows some folks who might benefit from them. So we have been trying to get the plan out. We have been trying to notify people.
We've begun with the process of a mailing list that has gotten longer and longer each month, and many of you are probably on that mailing list and have received the plan by mail.
But we can always do better and if you have other suggestions on how we can get to and get input from you, please let us know.
Right now we are in the consumer input process regarding this plan. In November we started the process by going out to the community and asking whether the planning process that we had put together was one that they felt comfortable with. And we got a lot of good community input on what people wanted and what they thought about the planning process.
In January and February, the subcommittees met. The subcommittees of people who were parents, consumers themselves, advocates, providers, and other interested members of the public in three majors areas serving the major population groups affected. Persons with physical disabilities and the elderly, the developmentally disabled and persons with mental illness, and these three subcommittees provided a lot of good input which helped us put together not only the plan and its major directions and principles, but those appendix which are attached to it.
We did our very best in getting this plan out in late March, so that people would have a chance to look at it and we could get a lot of thoughtful comments and input on it.
And we've scheduled these public meetings so that we can talk to you and dialog with you on what we're doing. But mostly, rather than talking, we're here to listen and to find out how these major policy directions affect you and how you feel they express what needs to be done in Indiana.
And finally, we will be submitting our report to the governor in June of this year. What we've tried to do with the plan rather than to get down into details and get down into every issue that needs to be addressed, because there are so many of them and they affect so many different kinds of people, is that we've tried to put together a road map with system goals that we can work on together. And focus that road map on one objective and that is to better serve the elderly and persons with disabilities in the community wherever they need to be served.
The focus is on how to assist consumers, families, in making -- and others who are helpers to make choices about care. And making people independent, making people more empowered to make their own decisions is what this plan is all about.
And of course, the emphasis is on community based care. It doesn't say here that we're going to close institutions, that's not the object here. The objective is to help everyone in the community who wants to be there and who can receive services, and benefit from those services, and benefit from community living, and that's the objective of what we're doing today.
There are six policy directions in the plan, and I'm going to just skim over them real quickly.
First of all, it's to increase consumer choice. To give people more options and more alternatives than they currently have with respect to the kinds of services they receive, where they receive them, and who they receive them from.
The second policy direction is to improve access to information and assistance to increase the opportunity for informed choices, so that people know what options are available to them, and can weigh the options that they have and that is what comes in to an informed choice, not just here's what we have, make this decision but rather a review of what's available and an opportunity to do that.
That means upgrading our information services. Upgrading the things that we provide in terms of education and public information, as well as, improving the whole content of services there.
The third policy direction is to support the informal network of families, friends, neighbors and communities. And to help the real driver of all this the families and communities, because they're the folks that really do provide most of the services in Indiana and, of course, across the nation. We receive incredible support from loved ones and other care givers.
The fourth principle is to strengthen quality assurance, complaint systems, and advocacy efforts. That means making it possible for people who have problems and concerns to get those concerns in quickly so that they can be addressed quickly. So that there will be enough resources so that everyone in this State can have their complaint heard if they've got one. And that means everyone here and everyone in this State deserves high quality services.
The fifth direction is to increase Indiana's capacity for high quality care and that means strengthening the service delivery system.
Not only by more services but by a wider variety and a higher quality of services. And finally to improve the overall service delivery system. We really need workers to do the job. People who are trained and capable and able to do their jobs well. And these policy directions constitute the basic core of the plan that we have put out and we have presented.
Now, I just want to note a few things before we get into the listening phase, and that is first of all we're recording everybody's comments. I have Nancy Arnold here, she's a court reporter, and she's taking down everything that you're saying. And we're going to have this information and we're going to turn it around and put it on the State web site. It will be available for people to see the results of these hearings, these meetings, across the State.
And so this is all public information and it will be recorded, it will be read, and I really mean this, we're listening to everything you say and we're really trying to integrate that into the work that we're doing.
We'd like, because there are many people and two hours of time, to initially limit everybody to three minutes, if possible, so that everybody gets a chance to speak.
But then at the end if you haven't been able to say everything that you feel you need to, then at the end we will offer you the opportunity. But we want to make sure everybody gets a chance to give at least the core of what their input is and the important part of what they have to say.
Now, I keep emphasizing and I want to reemphasize, that we're here to listen. We do have some FSSA administrative staff who are, you know, in charge of programs. In charge of some of the things that we need to do to satisfy the need for community integration.
We are, in all of these meetings, no matter where they are in this State bringing some of our administrative staff in to listen and to take note of what you're having to say because you will be interacting with them again and again in the future, and it will help to start right now by getting off to that good beginning with a listening phase.
I'd like to introduce some of our staff and if you want to talk to them at the end of the meeting please feel free to do so.
Pat Casanova is with our Bureau of Aging and In-Home Services, she's raised her hand, as is Dale Dole, next to her.
Rita Martin, she's the head of Vocational Rehab for our State, and is anybody here from Mental Health? Okay. Somebody will probably be coming in later in the meeting with Mental Health.
We have interpreters here, M. E. Johnson, and Shannon Stafford. If you are in the back of the room and can't see them we can rearrange chairs. Is there anybody else who needs interpreter service? We have some folks up here who are using them. No, okay. Continue, but we want to thank our interpreter's for what is always a very energetic and difficult job to do.
The final thing I wanted to mention is the letters and written comments and e-mails to us are fine. If you don't want to speak publicly here, please don't hesitate to write us a letter or e-mail. Those are due to us, however, by April 27th.
The subcommittees that we have constituted are going to be meeting the following week and we want to make sure that we have all the comments prior to those meetings, and that we are able to discuss those comments with them intelligently, so we need to have that cutoff point a few days before those meetings. So April 27 is basically the deadline for any written input that you would like to have.
Before I start people talking, there's a chair or two here, here's one more in case anybody else wants to sit, and we'll do our best to accommodate peoples needs.
Okay, are we ready, Nancy? With that, the meeting basically is yours and I'm going to simply ask you to raise your hand, tell us your name, please spell it out so that Nancy gets it correctly. Where you're from and then please give us your input.
I would like you to think three minutes, I'm not going to hold a stopwatch on you though. Some people may take two and a half and say what they have to say. Other people may take four, but please be aware we want to get everybody's testimony and that's the purpose of that invitation. And we can come back at the end with more comments. So who wants to be first? Yes, please.
VOICE: I'm Clarence Bolden and I'm with United Senior Action. I'm standing here today to represent Paul Severance who could not be here, our Executive Director.
We want to first of all say, that we applaud the efforts of FSSA to conduct what we're hearing on this very very important issue. One certainly that has been significantly over-looked in our State.
We also want to express our opinion that the six major policy directions that have been outlined thus far probably which will form the frame work of what you do, in our opinion are perfectly fine.
We do however, having said that and without taking anything away from the fine work that's been done this far, want to point out that this is not necessarily a new approach.
In fact in September of 1997, the CHOICE Board which is designated by a State law recommended a long-term care policy for Indiana, presented recommendations to the governor in September of '97, calling for a sweeping overhaul of the State's long-term care system, to guarantee that all of our Indiana citizens will have long-term care to meet their needs with services of their choice in the location of their choice.
Then again in December 1998, the Long Term Care Dialogue Group, established by the State, presented comprehensive recommendations for a new long-term care system to assure once again that the citizens of the State of Indiana as they interact with it's publicly-funded long-term care system will have a full array of long-term care service options for all citizens who need assistance.
So we are certainly at, I think, kind of subject to reinventing the wheel. And, I think, it's our position that as much as we need a policy statement, an action plan of the kind we have, what we really need is a commitment. We need a commitment from the governor of this State as so many of the governors across the country have done, to say that as of an affective date, and it could be January 1, 2005, whatever, that there will be no more fooling around, we will have in place the many many options that our citizens deserve that will bring us into the forefront of states around this country that do a great job providing their citizens with choice.
Basically, that's what we have to say. We are hopeful that the governor will get the word that he needs to in fact make a definite commitment. Set a definite date, so that as we work as advocates, as service providers, we're all working towards the same thing and that we'll hopefully arrive by the same date.
Thank you.
HEARING OFFICER SYBINSKY: Thank you Clarence.
Who's next, please.
BOB CANTEE
I'll go. Hello, my name is Bob Cantee. I live here in Indianapolis. I'm also part of the deaf community and a deaf advocate. Thus far I have seen on the TV, news and sports or even the weather section, all three of these are live and there's no captioning involved. You know while other programs already have pre-program captioning but on the live programs there is no captioning, it's very silent for us.
It's very hard to understand what they're talking about. I don't know if it's possible for the governor to, or the State to have a -- there's just no captioning, and if the governor could approve that for the captioning, it's very frustrating for us thus far to not have that information. I don't know if the State can provide that or how they can provide that, but that's my comments for today.
HEARING OFFICER SYBINSKY: Thank you very much, Bob.
JESS SMITH
My name is Jess Smith. I'm retired several years ago. I worked several years in education, probably 50 years. I have two key things. I was on the advisory committee for the deaf and hard of hearing for seven years. And I've been involved with Mental Health work for a long time, way back when, and several of the hospitals as well.
Now I do more voluntary work with the aging. After many many years, I can say it's not 100 percent yet, but, for example, you ask me where people live in Indiana, you would be surprised nobody has an exact census of where they live.
Most of the deaf people live here in Indianapolis, about five or six counties. Evansville, and in Northwest Indiana, some are in Fort Wayne, and then there's some south of the Ohio River, but 70 percent live here in Indianapolis.
Now I'm more involved in the nursing home area, but it goes back to 1934, deaf people had nursing home very far away, Evansville, was very early and finally, you know, the money, there was no support, there were rules, the program failed.
I was on the DHSS Board for several years, it was wonderful. 5000, 8000 people on the waiting list, it was great. So again, I think, that this here is very informative, I've read 44 pages of it. I tried to separate all the information but again people need to know how it's working.
But trying to get things done, and the financing aren't there, we have to find a way to pay. We have to learn how to face that. But again it can be done, but it requires a lot of work. We have to do what has to be done, within your community, work within it.
That's what happens here in the area, it's not like up in Hamilton County. You have to work within the community. But again it requires a lot of people and a lot of volunteers.
HEARING OFFICER SYBINSKY: Thank you, Jess.
I would like to introduce two more people, Rich Liberty is here from the Mental Health Division to listen. And I also would like to take the opportunity to thank Emma Sullivan of the Indiana Resource Center, Independant Living Center, who's our partner across the State in making these meetings possible. And Emma has done a fine job of bringing out people and organizing folks here. We really appreciate the partnership and the work that's being done.
Anybody else? Yes.
MARY JANE PHILLIPPE
My testimony will be about eight minutes so I didn't want to march up first. I'm Mary Jane Phillippe, P-H-I-L-L-I-P-P-E, and I am testifying today on behalf of the Indiana Commission on Aging.
I have been appointed by the governor to serve the Sixth Congressional District. Now, I think, I'm going to be talking about sections and all, I'm talking about this document of which the one you have in your hand is just a small part of this. Since my presentation is detailed, I'm going to read it and I hope it is meaningful to you.
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.
The policy options to support individualized and persons with services and funding. And that's this document that I'm talking about.
Point number one: That I want to talk about, reference is made in this document about Adult Guardianship Program, which is on page 37.
How many of you have the book, maybe I don't need to give the page because I'm giving you the document -- if any of you have the document or you don't have it in your hand --The Adult Guardianship Program, we, the Commission on Aging, believe that it's a very valuable program.
There are 284 individuals receiving Adult Guardianship Services, that was last year, 2000. Only 23 counties are covered by six providers. Four of them from the Area Agency on Aging and two from the Community Mental Health Association. Additional guardianships are needed on a state-wide basis.
The Commission on Aging recommends that the guardianship program be expanded state-wide to eliminate present waiting list and to serve all counties in the State. The program expanded $390,376 in the year 2000. An additional $600,000 is needed each year to implement this program.
Item number two: I want to speak about, is made about the CHOICE Program. Indiana state-wide in-home service program of which CHOICE is a part has been recognized by the National Governor's Association, as a national model for it's flexibility and responsiveness to consumer input.
12,338 individuals received services under CHOICE in the year 2000. An additional 7400 individuals 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.
Item number three: 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. The Commission fully agrees with this point.
Item number four: Speaks of the vision statement. Several groups have created a Vision Statement, 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 a beginning point to establish a Vision across all state agencies, instead of everyone having a little different vision. We all ought to be focused in one direction, we believe.
And as a starting point we would like to see used the CHOICE Board Vision Statement which is, the citizens of the State of Indiana shall have a full array of long-term care services that include a range of individual options based on the principle of independence, quality, dignity, privacy, and personal choice as directed by the consumer.
And when we're talking about long-term care we're talking about in-home care, community, and facility based services including assisted living.
Point number five: Reference is made in this document to the funding for community-based services being currently very limited. The Commission on Aging agrees with this statement and recommends that the State fund the 10,000 Aged and Disabled Medicaid Waiver slots which have been approved by HCFA but have not been funded.
The State is currently funding only 2,500 individuals verses the 12,500 approved slots. The Commission on Aging further recommends that the funding of Medicare Waiver slots be through a separate appropriation for the Medicare Waiver program and utilization of CHOICE funds as a match for the Medicare Waiver program be eliminated.
Item number six: Reference is made to the Ombudsman Program, the Money Management Program, and Adult Protective Services Program. These programs are under funded. The Commission recommends that an additional $500,000 is needed for the Ombudsman Program.
Presently $477,922 -- that's what they're presently funding us -- to allow Indiana to add more Ombudsman to bring the State closer to the standard of one Ombudsman for every 2000 nursing home residents.
The next point we want to make is an appropriation for $400,000 is needed each year for Money Management Program. To make it state-wide, presently the funding is zero. They depend on volunteers and that's approximately 200 individuals are being served this year.
An additional $1 million is needed for Adult Protective Services Program in order to expand the hours of operation from five to seven days and 24 hours of access to the services.
Presently this program serves approximately 12,000 individuals per year with a budget of $856,224 per year. Item number seven: Reference is made to the 16 Area Agencies on Aging serving as the single point of entry for in-home and community-based services.
The Commission recommends the continued support and the expansion of the single point entry for services to older adults and individuals with disabilities of all ages.
To include a new service as they become available in the State of Indiana, and to enhance the infra-structure of the Area Agency Network as necessary to stay current with technology.
Point number eight: Reference is made to Assisted Living and Adult Foster Care. We believe that full funding is needed for both these programs that are scheduled for implementation in the year 2002.
The last item: The Commission on Aging established the following priorities through the year 2006. We did this along with the Governor's Task Force on Alzheimer's Disease and Related Senile Dementia with the CHOICE Board, and Money Management Advisory Council.
The Commission further recommends that these following priorities be addressed in the Integration Plan, which we believe they are not. One, is education, and education in the area of Health, Aging, and Financial Planning.
Two, we believe Health Care, that there needs to be education in the area of Health Care, assisted living, transportation, and employment, and volunteerism.
This concludes what the Commission made as a recommendation. And I'd like to give quickly a short testimony from myself. Again, I am Mary Jane Phillippe, and I would like to make these notes.
The document title does not identify aging as a component, yet much of the material in this document addresses aging issues. We believe this should be corrected.
At the bottom of the page, the front page, is listed policy options to support individualized and persons centered services and funding. Actually, that document doesn't have anything to do with funding.
In fact, on page eight it says funding isn't even appropriate in this document. So how can you have funding here when they say on page 8 it isn't even appropriate, so I think that should be corrected.
And then my final recommendation, I'd like to say that I would like to recommend strongly that considerable focus be given to improving the imagine of aging. As long as we identify aging with negative adjectives, you know, we're going to act like you want us to act.
Presently, we're considered poor, we're sick, and we're disabled. Now, I think society -- that many of us fit that category, that I don't deny. But the larger part of us could be very productive. And much of the time, our span of life in those categories are at the very end, the last year or so of our lives. So we have all of this time between retirement and dying that ought to be a positive thing for ourselves and for society.
So I think, that if the department will focus on a positive imagine of aging, such as it's a chance for new opportunities for us, all the things we wanted to do and now can do.
It also makes it possible for us to grow personally. That during our work years perhaps we did have this opportunity. If we can look upon aging as being a positive thing, another part of our life, then society will be the benefactor.
Also, financially, if you're going to have us all poor, sick, and so forth, the State of Indiana or Commission cannot support us. So if you tell me I can do something, I will do it.
So save us financially. And, folks, we cannot have that attitude with the oncoming or on slot of the baby boomers. Let's make it a happy and a productive time for the baby boomers.
Thank you.
HEARING OFFICER SYBINSKY: Who's next.
DONNA OLSEN
My name is Donna Olsen. I'm with the Indiana Parent Information Network and Mary Jane's a hard act to follow. What I would like to do is kind of ask this community to shift just a little bit and look at the issues for children with disabilities on the other end.
As a mother of two young people, a 19 year old and a 22 year old, who have now launched into employment issues and all other kinds of things -- I believe it's been a lifetime process of beginning to help these two young people transition into community and adult living.
It's not something that occurs when they're just 14 or when they're 18, or as my son -- as he graduates this month. I would ask that -- in looking at a lot of the materials, I didn't see much that would reach out to me if I were a mother of a two year old, with a child with significant disabilities.
To help me begin to think about where do I want my son or my daughter to be in 20 years. And in my work at the Parent Network I talk with families of a lot children with significant disabilities. And I ask those parents that question. And so often no one has ever asked, where do you want your child to be in 20 years.
I think also I'd like to comment that as a mother of young children, I really benefited from the opportunity to hear adults with disabilities talk about what they appreciated, what their families and parents did and what they wish their parents would have done differently.
That has guided me in more ways than I can tell you. Now, I have prepared some written remarks addressing a specific issue around the direction. So in order to adjust with time, I'll just read that, if that's all right.
HEARING OFFICER SYBINSKY: Sure.
MS. OLSEN: Okay. Thank you for allowing us the opportunity to share our perspective about issues for children and adults with disabilities.
The Indiana Parent Information Network is a state-wide parent-to-parent organization that provides information, support and education to families of children with special needs and to the professionals who work with them.
Today I would like to comment specifically on one of the Policy Directions that the Family and Social Services Administration discussed in the April 2001 issue of Transitions.
I did not have access to the other information, so I'm missing that.
Policy Direction No. 2: Provide information, assistance and access to consumers to increase their opportunity for informed choice. IPIN was established on the premise that the greatest need of families is the need for information and the best source of information is another family. And here I'm defining family as not only parents, but adult consumers.
We applaud the commitment to providing information and encourage FSSA to collaborate with other state agencies in developing user friendly information systems that may include, but not be limited to, web based computer information databases.
For families that know what questions to ask, feel comfortable accessing computer systems, and are comfortable reading a computerized system is just one answer.
Our experience at IPIN indicates that more and more families access the internet but still need another knowledgeable person to help them process the information. Frequently there is a large gap between how the system is supposed to work and how it actually works in a local community.
We believe that knowledgeable family members, including both parents and adults consumers, should be included in the development and implementation of these information systems.
We would like to encourage FSSA to look at ways to support the role of families and adult consumers through either existing or new community based, family directed family resource centers and independent living centers.
In the area of case management, we would like to encourage FSSA to not only clearly articulate the various roles of case managers but also examine the duplication of effort that is currently present across systems. Where possible, allow for case managers, service coordinators and care coordinators to be cross trained.
Develop a tiered compensation rate for those who demonstrate competencies in critical areas needed by families including health care financing and future planning.
Find ways to allow current case managers to be involved in the appeals process or find a way to compensate advocates who are willing to assist families at hearings and appeals.
Allow families and adult consumers, who are willing to be trained, to serve as case managers, service coordinators and care coordinators in associate position roles.
Please let us know what we can do to help you do in this important work.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Donna. Could we have a copy of that, thank you. Next person.
SHARON BYRKETT
My name is Sharon Byrkett, I'm a person with a disability and I am a case manager. I have a prepared statement. I'm not going to read it. I'm just going to give some highlights on it. After Mary Jane and Donna, there's no way I'm going to follow their act.
But I do want to say we need to be aware that right now even the 317 money and the CHOICE money, in fact, may not even get funded from the legislators right now. So we need to be aware of that before we even go into future things.
We need to ensure that the people we have are funded before we add more people. And I hate that because I hate institutions. And I don't think anybody should ever have to live in one.
Some of my suggestions for -- there's a great lack of home care personnel or some of the home care personnel that you get, either have not been trained or they are being sent out by agencies or providers who pay them such a low wage that you are not going to get top notch people. And it's very difficult if you're going to pay $7.00 an hour, you're going to get what $7.00 an hour gets, and that's all you're going to get.
And we need people in all the communities so we can have people living in their own communities around their families, around their friends. Not only for the person that needs the assistance but the people who are doing the assisting. They are happier and have less funding for gas money if they don't have to go so far.
We need more places to live. When people come out of institutions they are often -- most of them are low income and we need more low income housing and jobs. People need jobs, they need some place to go and it helps their self-esteem. It connects them to their community and it builds friendships.
Assisted technology and devices -- if people don't have any problems with speaking or need any kind of assistance, or they need computers, those things need to be available so that their thoughts and their ideas can be heard and recognized and listened too.
And choices, people who are living in institutions, coming out of institutions, may have never made a choice in their life and yet -- or they are asking them, where do you want to live, and who do you want to live with, and they can't even choose what they want for breakfast.
So let's start some training before we take these folks out of the institutions and start with small choices and work up to the big ones, which means that we need to start now.
And support, people who live in institutions need other people with disabilities they can talk to, their peers, and as well, support groups for their families and for themselves.
There's a great deal of guilt, and sometimes anger for having been put into an institution and these things need to be worked through. So we need more independent living centers, we need more case managers, and we need more waivers.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Sharon. Okay, next.
MARY GODSEY
My name is Mary Godsey. And I don't represent an organization and I don't have a written statement. And I don't hate institutions. And it seemed like an appropriate place for me to say something.
I would hope that in the times that are going to be available would be a choice for those individuals who may have found an institution to be an appropriate placement. And if there are individuals who have tried the group home placement or tried some other kind of placement without success and sometimes with great disaster that those individuals would have a placement.
I have been to a somewhat similar, although not as well organized and orchestrated meeting as this, when Central State closed and when New Castle closed. And I have a son who's now placed at Muscatatuck.
And I believe that if it is truly going to be a CHOICE Program, that I would like to hear someone address the options and the choice of that individual or individuals who might choose an institutional placement.
HEARING OFFICER SYBINSKY: Thank you very much, Mary. Next person.
SHARON JONES
My name is Sharon Jones. And I, like the lady who spoke just a minute ago, have a daughter who has been at Muscatatuck for 26 years. I was not -- at the time she was taken there, that was not my option. I didn't have an option, as I was not her legal guardian at the time.
However, she has been so well cared for there. They love her. They take excellent care of her. The people that are there to work every day need to be commended. There has to be a place in heaven for those people who put out that energy to take care of those like my daughter.
My daughter does not know me, but she knows the people who work on her ward. She does not adjust well to change. And just to say we're going to close this and move her somewhere, she is not able to live in a community situation because she doesn't understand anything about money.
She only understands where she goes to get her food, and where her bed is, and where her clothes are, and where her chair is that she will sit in, and where the bathroom stall is, and that's the only one she will use. She understands those things.
I would hope again that before everything is just shut down and they're shoved out into a home with one person to watch them, and to try to take care of all their needs, that we, as the parents, would be very much interested in being kept informed of what kind of policy and things that are going down, because not all of us are unsatisfied with institutions.
I don't necessarily like that word. I think, maybe larger group homes or something might be better.
But as a mother of a child, and as I say, she's been there 26 years. I feel that if I was to die tomorrow, I would like for her to remain right there. No one would have to take care of her or change anything in her life style.
Someone else would be -- one of my sons would be appointed guardian and she would go right on living.
My hope is -- and I know this sounds terrible to people, but my hope is that she goes before I do, because then I know where she will be.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Sharon.
FRANK MIGLIANO
I'm Frank Migliano. I'm past president of Muscatatuck Association for Retarded Children.
Currently the treasurer of that organization. And I would just like to reinforce what the last two ladies said.
They say that our children should be in the least restricted place possible and from what we've seen over almost 40 years, Muscatatuck has been that place -- he's got wonderful care, he doesn't adjust.
I think, our organization agrees that there needs to be different options for different people with different needs.
Some of us prefer the institution, which I've pointed out before, there are other institutions in this State that we don't look on in a harsh way, that's Indiana University, Purdue University, so institution is not a bad word.
I think that, you know, there should be many options, we all agree. I would hate to think that Muscatatuck was going to be closed because of the money, because what I've heard that's really a drop in the bucket compared to the money we're talking about operating this program.
That's all I really have to say. Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Frank. By the way, you took the initiative and stood in place and spoke loud. This is a small room and those of you who don't want to struggle across other peoples legs, feel free to stand up and speak where you are and just project your voice so everyone including Nancy can hear you.
Okay, next person. Yes.
JOSEPH LEE
My name is Joseph Lee. As the brother of a client at Muscatatuck, I've been given the honor of assuming co-guardianship of my brother on my father's death back in '92. My brother is quadriplegic and requires 24 hour attention.
Now, once again I'd like to echo basically the same thing that the last three people have said. My brother has been a client down at Muscatatuck for the last 30 years. He's found that place to be a safe home for him. He likes where he's at. He still has a lot of involvement with his very large family.
And the only thing I'd like to see changed, I mean, I've seen a lot of changes at Muscatatuck over the last 30 years, I'm down there a lot, but the one thing I'd like to see changed is I'd like to see the people that are down there are getting what they deserve.
They're not making near enough money. Reduction, you're talking about, you know, spending, you know, $4 million here, $6 million there, you know, put some more money into Muscatatuck and give the people that are down there a good wage that will attract the best and brightest people and you'll make that place the show place of Indiana.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Joseph.
Yes, ma'am.
BEA NICOSON
I won't repeat the things that these people ahead of me have said. I am a parent of a person at Muscatatuck for the last 51 years. So I have seen a lot of changes. I can't say everything has been good, but I don't think you could find a better place for these people right now.
One of the arguments we get is, we'll place them close to you so that you can visit easier. It's true I have a long drive and I do visit often. I go at least every two weeks, maybe oftener. But I do want to say that I'm 81 years old and why would we place my son who has a home where he is, take him somewhere and make changes in his life, I might not be able to visit him two weeks from now, but there are many many arguments for the institutional care. Let's remember that when we're making decisions.
HEARING OFFICER SYBINSKY: Thank you. Okay, next person. Yes, sir.
ROD PEABODY
I'm Rod Peabody. I have a son also at Muscatatuck for the last 29 years. And the lady who just spoke before me -- we've seen a lot of changes at Muscatatuck, some good, some bad, but overall the care has been very satisfactory and helpful to our son.
We have trouble anticipating him being placed outside of Muscatatuck into a place where he can have the same predictability and care that he has had at Muscatatuck for the last 29 years.
And we too, are very much concerned about the accuracy of other institutions which may not be nearly as good as a State run institution.
Thank you.
HEARING OFFICER SYBINSKY: Thank you. Next person, please.
CINDY SCHOETTMER
Hi, my name is Cindy Schoettmer, S-C-H-O-E-T-T-M-E-R. I have a sister who is a patient at Muscatatuck and she has been down there -- she was there for 35 years. She was out in a group home for 10, and she returned to Muscatatuck six years ago with a mental breakdown.
She functions very well at Muscatatuck but she is probably not a good candidate for outside care now. She came back to Muscatatuck violent and unpredictable. We know something happened to her in the group home, and we were given the run around and we aren't sure what did happen to her when she was out.
Our mother is 80 years old now and she is also in a nursing facility and she's unable to be here today, but we too feel like Muscatatuck is the best place for our sister.
And if the State is really considering closing Muscatatuck we would at least like to see them consider a place or another -- maybe a smaller institution built where these people can go, because it is very scary to all of us to think about these people being out.
Kay was out for a while and she did very well for 10 years. But when this happened -- she is not nursing home material. I wouldn't want her next to my mother in a nursing home seeing how her moods change. And the people at Muscatatuck are very attentive to her and deal with her very well.
I know she's not group home material because she just cannot function out in the community well. So, you know, I would really like to see them consider at least -- I know Muscatatuck, it's stuff is very outdated and, you know, if they're going to close that up, at least consider another -- maybe a smaller institution where they can cater to these people a little bit better.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Cindy. Next person, please.
RON GARDIN
My name is Ron Gardin and I've listened to, you know, a lot of people talk about Muscatatuck, I'm not familiar with that hospital or institution.
But what I am familiar with is Opportunity Enterprises in Porter County. For all of you people who need to see how a program ought to be run, you probably ought to visit Opportunity Enterprises in Valparaiso.
Our son lives in a group home that is sponsored by O.E. They have four fellows and two girls living in the home, it's a six-person home.
We're trying to get him to Indianapolis area, however there are no openings here. We have been told he ought to get a waiver so that he could live by himself in an apartment, which I think would be the most ridiculous thing in the world, because he has to have 24-hour care, which means at least four shifts of people living with him.
How are you going to pay for that?
That's going to be terribly expensive and to just simply say that he needs to live on his own, or he needs to live in the community, that's fine.
But if you take a ride to the community, do some research you'll discover that a good share of the homeless people are people who have been kicked out of institutions, it's cheaper.
What we need is a combination of housing. We need housing for the young lady who can live by herself or with help. We need housing in which you need to have four or five roommates, if nothing else to keep you company.
My god, if my son had to live by himself with one caregiver, he'd go crazy. You need to have institutional care for people who simply cannot take care of themself.
I spent a lifetime in education. I've taught across the hall from special ed classroom.
The teacher was a good friend of mine and he said, Ron, this is driving me crazy. I said, what's the matter?
He said, every November parents come to me and ask me if I've gotten their children straightened up yet. I'm sorry, mentally handicapped people, you know, some of them are handicapped. Some of them need a lot of care and they're not going to get it by living in a community by themself.
They will be living in cardboard boxes. We've got to keep that in mind.
HEARING OFFICER SYBINSKY: Thank you very much, Ron.
Who else would like to speak.
JESS SMITH
I have another two points, if you don't mind.
HEARING OFFICER SYBINSKY: Okay.
MR. SMITH: My name is Jess Smith again. We talked about that institution. I'm a person who has visited there, way back when. In my opinion it is a very good place or it was until it had problems but basically I don't understand the problems.
The location, that area, the area of that institution it's really changed that place. They have industrial business that's pulled away people. For a long time, people in the community worked there, it's really changed.
And another point, once again, we need a better tracking system, a very good tracking system. What I mean by that is we need a person who can help with care or whatever is needed for the young people, middle aged people, or older people. We need a good tracking system.
Confidentiality, we really need that. We need that to help to pass on the information confidentiality. You know people have got to start all over again. We need a new good tracking system.
And second, is the money. Well, what can I say. We say it's going to happen in 2001, 2002, we all know that it's going to happen, but the services, the institutions and otherwise, it's really not cheap, we know that.
But the worst thing that I've noticed in the last 10 to 15 years, we're trying to place people in a community setting and it's not right, it's not appropriate. You can't just say we're going to set up a service, the people in the community would fight about it.
I think, again, some people have children who have lived there all their lives and they face that. Sometimes when they're three or four, you know, these younger people will die. And then there's people that are older adults that can't take care of their kids.
I'm 81, if I had children maybe they would help me but it would be reversed. I think, the public needs more education in general on this subject. I tried, you've tried, you've tried.
But again my suggestion is that we have this on a priority list. What seems to work most, what we really need, I can explain, a simplified form. Who's experienced in this area?
You're experienced, you've been through this experience your own self, each individual. Some people don't understand it, you don't have to live with it.
But again, I'm telling you we definitely need a new tracking system. For example, if I was two, and my family or someone needed help to place me somewhere and then five years later I'm moved to another area, and I'd have to start all over again. We really need a good tracking system.
HEARING OFFICER SYBINSKY: Thank you. Who else would like to speak? Yes, Duane.
DUANE ETIENNE
Dr. Sybinsky, thank you. I'm Duane Etienne and I'm CEO of CICOA, the Access Network which is the Area 8 Agency on Aging here in Central Indiana. I do have some prepared remarks, I'll give you copies.
I'd like to address my remarks specifically to the six policy direction, in the drafted plan thus far. This is a reminder that the first one deals generally with increased consumer choice.
First I'd like to congratulate you for your development of the plan to date. And I think in the Governor's plan it acknowledges our State has a ways to go to get into compliance with the -- at least the sprit of the Supreme Court ruling as I understand it.
But to the Policy Direction No. 1: We'd like to comment that the plan needs to address the issue of funding more directly, and it needs a time line to accomplish the funding goals. The plan should set a start date to begin a transition program using mechanisms such as buying out and closing nursing facility beds.
The CHOICE Program should be strengthened so that it fulfills it's vision of prevention of institutionalization and impoverishment of moderate income Hoosiers.
Policy Direction No. 2: Speaks about providing information, assistance and access to consumers, and so forth. Absent are references to collaborative opportunities with private sector businesses, especially in marketing efforts that can heighten awareness of needs and opportunities.
We recommend that this section be addressed to strengthen existing information services, including funding, so that the services may be staffed on weekends, and funding be made for regular and appropriate training for those who operate information networks.
The Area Agency 800 number, the 211 service which is expected to go state-wide. Senior Legal Hotline, FSSA 800 numbers. We recommend that the State use the State Case Management Standards already in place to measure the work of case managers.
We recommend adequately funded training for case managers. We recommend the strengthening the single point of entry through the area agency system to home and community-based services. We recommend the aggressive pursuit of funding including grants available from the federal government.
Policy Direction No. 3: This talks about supporting the informal network of family, friends, neighbors and communities. As we know 80 to 85 percent of the caregivers in this country is given by families and informal networks. People like me, you know, do a percentage of it.
How about seeking tax incentives and supports for caregivers? We strongly support additional funding of the National Caregivers Act, that was approved in this last reauthorization of the Older Americans Act. I think was partially funded, very partially funded, and we think there's strategy to develop, to expand the accessibility of the services that will be made available to the National Caregivers Act.
We encourage the development of a Caregiver Alliance. This is something that has been done extensively in California and at least from the reports we have it's a wonderful thing for caregivers, that the State is putting resources into it. It has acknowledged the role that caregivers play. And what they're doing is trying to enable caregivers to continue to do what they do and do so well.
Policy Direction No. 4: Talks about strengthening quality assurance, monitoring systems, and so forth. There's a statement in there about -- it came out of one of the focus groups, and it talked about the potential conflict of interest between providers and case management and services, and we recommend that the final document make a clear distinction between case management as an administrative function and the service.
We think there needs to be a stronger statement about the State's commitment and role in assuring quality assurance, monitoring, compliant resolution and advocacy.
Again, we recommend the setting of timelines for expansion of Ombudsman and Adult Guardianship Services, and the expansion of the Money Management Program. And we really appeal for the targeting of the funding for quality assurance as a high priority in the 2003 budget.
And we -- most of us see the writing on the wall, and think 2001 probably is going to be a lost cause in that regard.
Policy Direction No. 5: Which it talks about increasing capacity, system capacity. We see no mention whatsoever of the key problem created by under funding in general and what we think are ridiculously low rates for providers in particular as being a deterrent against capacity system and capacity development.
We encourage the use of incentives to encourage the development of assisted living and adult foster care providers.
Policy Direction No. 6: Talks about a coordinated workforce development system. And our comment is, again, there's no mention of the problem of being unable to compete with the pay scales made possible by today's funding in general and provider rates in particular.
We call for the raising of the Medicaid Wavier reimbursement rates so that direct care workers are paid a living wage as the highest priority. There must be a workforce before training and certification are practical.
In summary, we think the plan generally lacks specifics for it to become a true plan and blueprint for action.
There is no expressed strategy to increase resources. No definition of funding mechanisms.
There are no timelines against which to measure progress and ultimate success. And there are no assignments of responsibility to allow the plan administrators to hold the Governor, the General Assembly, the State staff and other collaborators accountable to the public.
I'd like to thank you for this opportunity to comment on the drafted plan. I always feel like we come into these things like we're all negative but that's the way we strengthen these things I believe.
My agency stands ready to enter the next generation of community-based service provision in Central Indiana, as do our counterparts throughout Indiana. We hope to be at the table with you as you bring your commitments to its final action plan.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Duane.
LDDRENA GIRTON
First name L-D-D-R-E-N-A, last name G-I-R-T-O-N. And a lot of issues are hitting me in coming here. I was invited by Sharon. And I'm a CNA and I know about caring for the aging because I had Alzheimer patients at one time.
And I know about the children because now I'm being faced with a four year old that is autistic or in the autistic spectrum. I was also told just on March the 5th of this year that be prepared for mental retardation. So everything is starting to hit me sort of in the face here.
But the very first point is, I don't want to see her in an institution. I think that in 20 years, I think we're going to be okay. I'm trying the best that I can with her, and her name is Patrece (phonetic) Hunter. And right now like I said she's four years old. She's what they consider non verbal or has a severe language disorder, or communication disorder. But we're working on it. We're working on it every day.
On the finance issue, I'm not receiving any help for her, except for SSI. And that was told to me by my uncle. I had no idea that I could receive some help for her from both the State government or whatever. So he said you need to go down there and fill out paperwork so you can receive help.
On the income issue, I go and apply for a job, for a CNA position, they're saying $6 or $7 an hour. That's not going to get it. I work for an agency, it sounded a little better, $10 an hour, and then on the weekends $11.25.
But when you look at trying to own a decent car, you know, walking in and buying a car, hey, you know, they saw a woman coming, boom, I'm paying $300 a month on a car. I have fallen asleep at the wheel, trying to work. I flipped a car last year. My insurance went sky-high. The gas prices are going up.
I can't make it on $10 an hour, and then paying rent $666 a month, and that's only for two bedrooms, I only have two girls, so that we can have a cool, nice place to stay. And $10, $11.25 an hour is not going to get it.
And to pay the life insurance, and I'm not even talking about, you know, the light bill, the phone bill. I don't even have cable. But I'm talking about living and having a decent life for them and providing for life insurance and health insurance and things like that. It's really hard for me to make it.
Unfortunately being confession-day, trying to help other people I have run out of gas, and I have to ask for help for gas money. Because I can't keep up with the rising price of gas.
And then, you know, my insurance bill came in the mail the other day for the car. You know, it's just stacking up and just voicing -- my voice about the income that these health professionals that I say -- I would like to call myself a professional. I've been doing it, I'm 33 -- I've been doing it on the work force since I was 18.
And I tell people I was taking care of people before I knew that that was a real job. I had a cousin that I grew up with and she had muscular dystrophy. Pulling her in and out of a chair that was just the thing to do, you know, taking her to the bathroom. I didn't know that was a job and I could get paid for it.
So just on the income level, income has to be raised for professionals taking care of and I know there's different levels of professionals and I'm going to say I'm at the bottom of the hole.
But, you know, I've been attacked, people say that CNA's are very important when it comes to taking care of people in the hospitals and the nursing homes, and these -- I don't like to call it institutions and these facilities. But like he said, Purdue and IU is an institution so, hey, you know. I can't take care of my kids making $10, $11.25 an hour. And having to pay for gas, a car payment, insurance payment, you know, the life, health insurance, I can't do it.
And on the part of Patrece, I don't want her to go to an institution or a facility like that. I'm working on that, she's four. I'm working on getting her independent, you know, she does very well with the television and the VCR, I said hey, if you can do that you can do anything.
So, that's all I really have to say but, you know, a lot of things are hitting me that I didn't even think about, you know, about this deal and things. But, you know, there's a lot of work that we have to do and we all have to work together on it.
And I totally agree with what he said, the tracking system, that's a really good idea, you know. That's all I have to say.
HEARING OFFICER SYBINSKY: Thank you. Yes.
ANDREA WHERRY
My name Andrea Wherry. I am a registered nurse. I am the mother of three children, one is 24, one is 17, and one is 8. My 24 year old son is on the autism waiver. We were lucky to get him there. We feel that that saved our life.
When he was transitioned into the community after high school, the program dissolved. They were like smoke, no longer there.
At 21 he got on the autism waiver and received services at home for one year, quality services with integrity. Even though it was a lowly paid job.
We had promises -- and my son wished to move into the community. We had promises and plans and numerous, numerous ways to increase his independence in the community. We moved him out into an apartment, the provider had the plan.
The rehabilitation was there, the behaviorist was there, the psychiatrist was there, the psychologist, every kind of support you could imagine. The staffing disappeared. When I was told there's a crisis in quality staff in Indiana, we just can't get them. I said, you promised this plan, you promised this rehabilitation plan, you promised you'd get him to the psychologist and the psychiatrist, why aren't you doing these things. Well, we can't. We can't get quality help. I said, well, it's your problem. It's your agency.
They kept forgetting that we were discussing the same thing month after month. So we began writing, expressing that the agency keep their promises and the plans to increase my son's independence in the community with a roommate. And my son was paying for his apartment.
One month after we got our first response that they gave us eight or ten different promises of what they were going to do to increase the quality of his care, we where fired in our second communication in the letter of response. They hadn't even kept one promise on the only other letter they had written us about the quality of care they were going to provide us.
Now, I would like to speak about the integrity and the kind of help that somebody like my son would need. He has high functioning autism. He needs a program of quality support and structure and that has to be maintained and driven by the personal assistant. If we cannot train our personal assistants, and we only require that they have no felony records and a clean driving record we will not get quality help for our children who are going into the independent community and their own apartment.
I am requesting this funding be put aside so that the families and the guardian and the consumer themselves cannot be fired when they ask for quality help and for their promises to be kept.
When they see someone stealing their stuff and their money disappears and their things are broken, that the agency must step forward and say, we are responsible because we were the ones that sent someone in there who was not of integrity.
To date, the agency that was taking care of my son has never taken responsibility on an executive administrative level where their lack of professionalism and plans were never followed.
They produced them, they ignored them, but they got paid. Families need to be involved in this and make sure that people like that are held accountable and do not receive funding of hundreds of thousands of dollars only to ensure that someone becomes more and more disabled when they move into their own place.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Andrea.
Who else would like to speak? Yes.
FRANK MIGLIANO
I don't really want to say anything else, but would you briefly explain the Olmstead decision by the Supreme Court and how it affects all of this?
HEARING OFFICER SYBINSKY: Okay. I'll be as brief as I possibly can. There are -- in 1999, the Supreme Court ruled in a case where there were several women with a dual diagnoses of mental retardation and mental illness that they had been seeking community placement.
The professionals who evaluated their needs at the institution said that they could well be placed in the community and could function well in the community but the State of Georgia which was the Olmstead did not put them into the community but instead kept them in the institution.
So the case was appealed to the Supreme Court. The Supreme Court said that the people -- those two people should be moved into the community, they said that when someone wants community placement, when professionals say that there is capacity and a person could succeed in a community and to the extent that it does not, say, affect negatively other people with disabilities, the State has to make a reasonable accommodation to place people in the community.
So there's a lot of words that are interpretable in the decision. And it is one that is very often very person centered in relating to the individual circumstances of individual people. We don't have one of our lawyers here to -- that's the best jailhouse law I'm trying to do.
MR. MIGLIANO: Thank you. I wasn't sure. I've heard a lot about it but I wasn't sure what it was.
HEARING OFFICER SYBINSKY: Okay. I'll be glad to answer questions and everything afterwards. But I would like to focus this on input to us.
MS. GODSEY: I think the Olmstead decision says first though. That the first consideration is the choice of the individual.
HEARING OFFICER SYBINSKY: Yes, the individual choices. Okay, next. Mary Jane.
MS. PHILLIPPE: I would just like to add, there's been a lot of talk about semantics, we don't like institutions, we do like institutions, we don't like elderly.
I think, that we ought to go to what the federal government uses as a definition in the case -- I'm not sure about institutions -- but in the case of older people, they use older not elderly.
And there's many other words along the same line that will raise different issues, that we ought to stick with whatever is used nationally that must be accepted, whatever that is.
HEARING OFFICER SYBINSKY: Thank you, Mary Jane. Is there anyone else who would like to speak? Yes.
MR. LENTZ
I do not have a prepared statement. My name is Jim Lentz, L-E-N-T-Z. I'm a private individual, a senior citizen. I'm here as part of USA just to say that I support what they have said about the CHOICE Program. I do think it needs to be expanded.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Jim. Anyone else, yes.
MR. GARDIN: Yeah, I have just one question. How much does it cost per day for our sons or daughters to be taken care of? We used to get a paper from O.E. and it told how much was being spent and it seemed like a god awful figure, like thousands of dollars a day. Do you have any idea what it cost? What an organization can be reimbursed for a person's care?
HEARING OFFICER SYBINSKY: It is almost -- and again, I'd be much more comfortable addressing individual questions, you know, with you folks after the meeting.
But in a general sense, I think the best principle would be that those are very variable based upon the person and the skills and abilities. The various choices and some times even things like locations and the availability of certain services.
There are many different variables and cost could be relatively low for someone with a lot of skills and a lot of capacity. Cost could get very very expensive for someone who needs a lot of supports.
I will close the meeting for the State -- oh, Emma, go ahead.
EMMA SULLIVAN
Hi, my name is Emma Sullivan, and I'm the Co-Executive Director of the Indianapolis Resource Center for Independent Living.
And I would first of all like to say that I appreciate everybody who came out today and spoke. This is the way America is supposed to run. We're all supposed to give our input on what we think should happen.
I would remind you all that times are changing and for those of you, parents, who have children who are living in formal institutions, you made that decision in good conscience in the best interest of your child.
And for those parents who are struggling now to decide what to do with the new babies that they're bringing home, who may have one disability or another, they're going to make those same choices based on the best interest of their child, but they have more information now.
And what we want to make sure that happens is that they are aware of the options that are out there.
The Independent Living Movement is about consumer choice. And we don't want to force consumers to live where they don't want to live.
We don't want to force them out of institutions if they don't want to go. We don't want to force them into institutions if they don't want to go.
But when we know better, we do better. When we know differently, we do differently. And our challenge to the governor is, if not now, Frank, when? When is the money going to be made available?
And the other question would be, who is going to be in charge of implementing this plan? It's not something that needs to go under yet another division, of yet another division, of FSSA, blah, blah, blah, blah.
It needs to be something that the governor's office has direct responsibility for. And it needs to include direct input from consumer community advocates, from parents, from people with disabilities to make it happen.
It can't be something that they, -- I'm going to pick on you Rita -- that they say, Rita okay, go forth and make it work. Because it's not about providing yet another program. This is about community life. This is about consumer choice. This is about human rights.
This is not about what other program can we come up with and what can we call it and what acronym can we give it to make people think that they're getting something that they're not.
And I want to encourage everybody here to -- don't call me, but you could call me, call the Indianapolis Research Center for Independent Living if you want to talk about what the options are, and what the possibilities could be.
What would it look like if an institution was, a good institution. What's the cost for your child to be cared for, compared to what does it cost for somebody to be cared for in the community?
If you want to talk to people, adults with disabilities who are making it work; if you want to talk with people who are concerned about consumer choices and human rights, give our agency a call, give our organization a call. We can tell you who else that you can call.
But we want to have more conversations like this. We want to have more input into what the governor is planning on doing. And I repeat, if not now, Frank, when?
HEARING OFFICER SYBINSKY: Thank you. Okay, anyone else, this is the last chance.
ARLENE FRANKLIN
I'm Arlene Franklin. I'm the State Long-Term Care Ombudsman. I just want to remind everyone that we have people in nursing homes who would like to leave.
We have people in the community who are going into nursing homes who would rather stay in the community, if we had the services available and if we had all of the caregivers that we really need.
So as you're thinking about all of this, it's not age versus you, it's not age versus disability, it's for everyone who needs and has a disability, and older people have disabilities as well. They may not be the same type, but they have disabilities.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Arlene.
MS. NICOSON: Just one more comment. I think that a lot of people who frown on institutions are not really aware of what all happens. I cannot think of any kind of service that's available in the communities which are not available to those who are in institutions, and sometimes it's even better.
You have a doctor on call 24 hours. You have nurses on duty all the time. You have OT and PT and you have dental work and you have field trips and you have entertainment. You have special meals planned for entertainment. A lot of people don't realize that.
Tomorrow beginning at 6:30 in the morning, the parents at Muscatatuck Association will have an extended -- well let's call it a party -- where we recognize the employees and the staff and the good works they do and try to get better acquainted with them.
We'll have punch and cookies all day, we'll have occasional entertainment. We won't have any formal meeting, but if anyone would like to see what happens at Muscatatuck or to view some of the facilities, I personally would be glad to find a guide, if I can't do it myself, I'll find one for you. And I'd be happy to show you my son's facility for one. I say him because I'm more familiar with his than all the others.
Recently I had -- was appointed to do some studies of other facilities and I made the reports on what I saw there good and bad. My son's facility is almost perfect, if there is such a thing. It's decorated with Colt's bedspreads, and draperies and he has at least three people on duty all the time and usually more. He has anything that anybody could -- not just him, I use him as an example but I find that with all of the people.
I believe people who talk about institutions are not always familiar with the facilities available. I can't think of anything in the community that can't be found there.
HEARING OFFICER SYBINSKY: Thank you. Okay, we still have some time if anybody wants to speak. Otherwise I'll close the meeting and be glad to talk to anybody afterwards. Would you like to speak?
DAVID HANAINS
Hi, I'm a homeowner. I can't see who would want their loved one to be in an institution. I work with COVOH.
HEARING OFFICER SYBINSKY: Thank you, David. Okay, if there is no more testimony, or comments or questions -- I'll be glad to stay around, if there are any questions you might want to ask of me, please don't hesitate to do so.
Our staff will also stick around for a few more minutes, if you have any questions of them too.
So thank you very much for coming, and we really appreciate your input, and we look forward to working with you to make a good system with choice for all.
Thank you.
(Hearing concluded at 6:00 p.m., April 17, 2001.
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Nancy L. Arnold, a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration, in the matter of Indiana's Plan for the Community Integration of Persons with Disabilities, beginning at 4:00 p.m. on the 17th day of April, 2000;
That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed my notarial seal this 27th day of April, 2000.
Nancy L. Arnold
Notary Public
Residing in Johnson County
My Commission Expires:
April 27, 2008
