Transcript of Public Hearing New Albany
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
NEW ALBANY-FLOYD COUNTY SCHOOLS
ADMINISTRATIVE SERVICES CENTER
2013 GRANT LINE ROAD
NEW ALBANY, INDIANA
APRIL 18, 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:
Charles J. Burkhardt
Margaret Lori
Rita Boone
Frank Lori
Colleen Feller
Mirian Owens
Bettye Dunham, Rauch, Inc.
Written statement attached as Exhibit 1
Geneva Sams
Written statement attached as Exhibit 2
Vickie Medlock
William E. Lori
James Boone
Muriel LaDuke
Rosemary Bland
Doris Hickerson
Sandy Braumbeck
Katie Wilson
Vickie Owens
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: Good morning. I'm Pete Sybinsky. I'm Deputy Secretary of Family and Social Services. I'd like to welcome you here to this meeting.
To begin with is there anyone in the audience who needs an interpreter or interpreter services?
(No response.)
If not, thank you very much. Today we're coming out to listen to what you have to say about the principles and ideas that we've put out in our draft plan for community integration for persons with disabilities.
I think a lot of us have come to listen and hear what you've said, and we're making sure that some of our top administrators are at every meeting so that people do get an understanding of what you are telling us.
I'd like to mention that I'm not the only here from central staff or from FSSA. John Viernas, Deputy Director of the Mental Health Division, is here, and accompanying him are Jackie Pitman, Lee Witt and Janice Miller from the Division of Disability and Rehabilitation Services, they're the folks who have services with aging persons as well as persons with disabilities, and Jerry McCullam is here from our Division of Family and Children.
I'd also like to thank Vince Kline of the Floyd County Schools. He's our Step Ahead Coordinator, and Step Ahead has brought people in and coordinated this meeting, and we certainly appreciate their help, and the hospitality of the school district is very appreciated as well.
I'd like to spend just a couple of minutes giving a bit of background for the draft plan and telling you how it was put together, and then the meeting is yours.
In 1992 Central State Hospital was closed. It was the first big institutional closure in Indiana's history and looking at Central State as kind of a key point, because it really began in a real way to move to community integration in Indiana.
In 1997 and 1998 two state developmental centers, New Castle and Northern Indiana both closed and the folks who lived there were moved into community living. This started the trend, started the activity for persons with developmental disabilities.
Large scale across the board since then actions have happened to bring people into community integration.
In our mental health programs we have moved people out into the community so that they're actually 500 fewer beds in our institutions because people are living in the community more successfully.
There's 74,000 people who are being treated in the community through our mental health programs. There's 700 fewer persons in institutions in our developmental disabilities program, and 4400 total people receiving community services in their own homes and the community.
We've tried in Indiana to use various funding mechanisms to pay for this. Medicaid waivers and Medicaid funding has been very critical to this effort. Very recently we completed two new Medicaid waivers, one for assisted living and another for adult foster care to broaden the array of option that can help people to move into community living or stay in the community as opposed to going into an institution.
In 1999 the legislature appropriated $39 million to assist 1300 people at risk of going into institutions to stay in the community and have community life. The mental health division has had a special effort to try to reach even the toughest persons to be institutionalized, long-term patients, and has moved 23 patients out of the hospitals who were in there for eight, ten, twelve or more years and now they're living in the community.
But this 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, 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.
It will be an open floor and I'll call on whoever raises their hand.
Yes, sir.
CHARLES J. BURKHARDT
I'm Charles J. Burkhardt from Jeffersonville. I have a son at Muscatatuck. He's been there since 1957, which goes back a few years. As I understood your comment, sir, I believe you were stating that those people who have the mentality to more or less take care of themselves would be good candidates for community living.
I have yet to hear anything said about those who are not capable of taking care of themselves. My son is one of them.
When we had him home he decided to get into the kitchen and pick up a knife. Unfortunately, he picked up the knife by the blade and not the handle and it was a butcher knife. My wife liked to flip before she could get it away from him. She took a series of spoons, measuring spoons and just rattled them. He was willing to trade her. How do you handle an individual like this?
You put them out in the community, who's going to take care of them. It has to be at least a one-on-one. I just don't see it. I wonder what the provisions are for these people. It seems to me, and maybe I'm wrong, this has been going on for quite a few years, two anyway. It seems more or less that the government, our government, is interested in balancing the budget on the backs of these individuals. I for one don't appreciate it.
Thank you.
HEARING OFFICER SYBINSKY: Thank you.
Who else would like to talk? Please come up and state your name.
MARGARET LORI
I'm Margaret Lori. I live in Clarksville, Indiana. We have a son in Muscatatuck. He's 53 years old. He has a mind of a three year old. He's considered profoundly retarded. He is difficult to manage. He has no knowledge of the dangers of the street. If he decides to break a window, he will.
I would like to know how this type of man can be cared for? How we can feel secure that he will be safe in a community?
So far at Muscatatuck the services have been good. There's been a lot of mistakes, but this is very natural where the mentally handicapped are. Now, we understand that at the home up in Indianapolis there are men who cannot cope on the outside in the community and they're being re-entered into Muscatatuck.
There was no way that they can be in a private home cared for day and night.
Our son has a sleep problem. Many nights he doesn't sleep at all. How this can be cared for in a private home is certainly beyond us. And we are asking for compassion, for help, love for these individuals.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Mrs. Murray.
RITA BOONE
My name is Rita Boone and I'm from Madison, Indiana. I don't have to say a lot because the other two people have said exactly what our thoughts are. I have my husband here with me. We also have a son in Muscatatuck. He's 44 years old. He's the oldest of five children.
We kept him at home until he was 14. He's severely retarded. We have been very upset about all of this. I have an article here in the paper. It said that they plan to withhold $93 million in proposed funding for the disabled unless Governor O'Bannon publicly commits to closing Muscatatuck.
That's scary for me and most of the parents that have severely retarded children. I'm afraid if they go into community living they're going to end up being the street people.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Ms. Boone.
FRANK LORI
I'm Frank Lori and I'm Margaret's husband. And our son is at Muscatatuck. But I want to talk about a couple of articles that I read.
Yesterday I read one from the Washington Post where a home for the retarded was taken over by a provider called CPC, I believe. But anyway, through mismanagement they went under and they had to take these people and crowd them into other facilities.
Our son even if he moves from, say, 5A to 4B for a while is upset. It's like moving a child from one foster home to another. They have different people they have to learn. It's like leaving home.
I have some articles, and one of them was from Louisville, and i seems like the people went into the community but the money didn't follow, so these people were crowded into facilities where they weren't from. They were mentally retarded people put in with people who had more severe mental disabilities. And I wonder how the state is going to police all of this and how they're really going to show compassion for the people who need it.
That's all I have to say.
HEARING OFFICER SYBINSKY: Thank you very much.
COLLEEN FELLER
I'm Colleen Feller. I'm not very good at this. I agree with everything these people have said. I have a sister up there that's profoundly retarded. She's been there since she was 11 years old and she's 71. I'm well pleased what time I've been guardian with what they've done up there. The people have always treated me kind.
Now, my question is what are you going to do with these profoundly retarded people. They cannot go out in a home.
They brought my sister down to see my mother in the nursing home and all she wanted to do was go outside. She had my arm trying to pull me outside just wanting to go. My arm was bruised. I couldn't deal with it. I mean that's all she wanted.
You put her out in a community home the first time she gets a chance to go out the front door she going to be out in the street to go for a ride in a car. She has always been like that. I am very, very upset and concerned that they will put her out and I do not want her out.
Is there going to be a place fixed for these people?
HEARING OFFICER SYBINSKY: Thank you very much.
MIRIAN OWENS
My name is Mirian Owens. I too have somebody at Muscatatuck, my adopted daughter. And I want to tell you what it's like to really, really have problems with a child.
When Amanda was born her mother had mental illness and could not take care of her. Her father hired a full-time caretaker. She could not handle my daughter. They put her in a foster home. They could not handle her. By the time she was three years old she was entering her fourth home.
She went to Silver Crest, they got her out of diapers. They taught her the rudiments of speaking. She did not speak. They did all they could for her which was a lot, but she outgrew Silver Crest.
My two daughters were teaching at Silver Crest for their practicum for college. They kept bringing Amanda home and I said, what the heck, we're going to take her. Nobody else can take her. We'll take her. We taught her to really talk, to answer questions. We taught her not to be afraid of wagons and dishwashers and ice boxes. She started pre-school, she was asked to leave. She was sent to Mt. Tabor, she was asked to leave. We sent her to Vanderbilt for two months consultation and they said she will need 24-hour care for the rest of her life, and I have no argument with Vanderbilt.
Well, one day she decided that she was going to throw the bookcase down the stairs full of books, and she did it. Why none of us was injured, I don't know. We were at the foot of the stairs. She was at the top. Just like that, down came a huge bookcase crashing down the stairs with all the books in it. It was time to find her a new home.
We sent her to Evansville Psychiatric Center. It closed. She went to Northern Indiana State Developmental Center, I was very pleased with the service there, but they asked her to leave because she was getting too big and too hard to handle. Then she was sent to Valle Vista which is a private institution. She was horribly, horribly abused. I have documentation from the Child Protective Agency of that.
After three years and six days of arguing and fighting and begging and crying and hiring a lawyer, we got her into Muscatatuck. It is the most wonderful thing that happened to her. She is safe. She has a job. I bought her a purse. She said, I'm taking this to work Monday.
Well, she could never get on a bus and go anyplace because she would go out the door and across the street -- when we had her at home she would run for two or three miles and I would just pick up the phone and say, she's run away.
The police knew who they were looking for. She has a warm place, plenty of food to eat. She has a lovely picnic area behind her.
She has a van that will take her to the mall but they have plenty of supervision. There's no way one person could take her anywhere because she is just too hard handle.
For the first time in her life she isn't worried about the next place she's going to sleep. She doesn't worry about foster homes and group homes and all the rumors she hears. And I implore you for those that cannot live in the community, please leave Muscatatuck open.
If they turn it into a prison they have no place to return to, and they don't need another prison. I know New Hope was turned into a prison and maybe that's all right, but we do need Muscatatuck. I'm an officer in the parent's club and I'm speaking for all of us.
Thank you.
HEARING OFFICER SYBINSKY: Thanks.
BETTYE DUNHAM RAUCH, INC
I'm Bettye Dunham and I'm the CEO of Rauch, Incorporated. And I have a note that I've given to the court reporter on each of the policy areas, but I'm just going to cover some of the general comments.
We do appreciate the opportunity to be able to speak today. First of all we are concerned it is titled as a comprehensive plan and yet it appears to be more of an outline of options, and we're not real clear in terms of what the real plan is in this document. How will the options be used? Will they become recommendations, and when and how?
We are in support of the continued careful movement of people out of the state institutions. We know that time frames and specific goals need to be established in terms of moving people into the community, and we need to identify who is going to be responsible for taking care of those individuals.
This must include establishing a procedure to find out who wants to move out of the institution. What supports and funds they're going to need and a method to ensure that new people don't move into the institution due to lack of other options.
There also needs to be a method to establish and determine what services individuals living with loved ones in the community are needing that are not now available due to funding and then move on those waiting lists.
As the focus on moving people out of institutions intensifies, we must focus on building community capacity. We cannot fund this movement while decreasing the services available for individuals in the community. Already this year only 11 months of the year for day services for individuals in the community will be reimbursed to providers. How will priorities be established? How can community capacity be built without increasing the funding?
We are unclear as to how the state-operated facilities final report plays into the community integration plan. This was located on the web site with the community integration plan, if the intent is that this is part of the plan, then we have the following concerns:
(1) This plan appears to call for large investments in regional centers which are the redesign -- appears to be the redesign of the current institution rather than the intent of reinvesting the dollars now used into building community capacity. However, we do recognize the need for a safety net for individuals that are not able to adjust to the community setting, but we believe that smaller, more locally accessible centers are a better vision for these populations than the reinvestment in making the current institutions into these regionalized centers.
(2) We are also concerned by the plan for a system point of entry that's identified in this report that would force entry into the system through eight regionalized centers. This removes the local, community-based knowledge of services available and the knowledge of the track record of providers to a more distant location.
We feel the need to establish a multi-agency commission to determine implementation of the plan. It should be convened by the governor's office and include high level participation from all the major state agencies which deal with people with disabilities and directly affect the lives of people and consistent with what your input has been, and make sure that consumers are part of this as well as providers.
This plan does not address the needs of children in the special education residential placements or CHINS. How will the state ensure they are served in the most integrated setting?
Certainly regular updates need to continually be made to the public about how these plans proceed.
We're also surprised that in listening to the input that the community capacity planning meetings that were done in each county were not referred to, were not referenced, and then put in this plan. There was quite a bit of time and input that was done in those sessions.
We also want to emphasize that we are not in favor of the removal of people from their familiar local community for access to the, i.e., regionalized centers.
In reviewing the overall policy points made on pages 33-35 on No. 13, regarding creating a mechanism to adequately support people whose needs change over time. We do feel strongly that the prioritizing of people on waiver needs to be revisited. Currently this is on a first-come, first-served basis and then recognizing some of the needs of people in emergency situations.
Finally, we believe that housing and transportation are great areas of need for people with disabilities but that plans and directions need to be broad, and look at a variety of options for this development and support.
And as I've mentioned the rest of my comments do go specifically to the policy directions and are more specific, so I won't go into those.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much.
GENEVA SAMS
I'm Geneva Sams and I have been appointed by the governor on the Commission on Aging and I serve at large. And I would like to read some of the things that the Commission has adopted.
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.
I would also like to add that of all the titles there is nothing that tells that this program serves the elderly. Since it is an elderly program if you do not include elderly -- if you do not put elderly in the title, the aging population may not identify with this document just by the title. And I hope you will put some funding into this program.
And then I would like to comment as a social worker for Harrison County Services in Corydon, that I deal with a lot of people that need to be seen by adult protective persons, and there's always a busy signal or a long waiting period. I also see a lot of people that need adult guardianship and there's a long waiting list for that.
And I also talked to a lot of people that they would like for their family members to be on the CHOICE program, and lots of time these people die before they ever to get on the CHOICE program.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Ms. Sams.
VICKIE MEDLOCK
My name is Vickie Medlock and I work for the Area Agency on Aging here in New Albany, and I wanted to give you a local perspective of what's happening in our area, particularly in our four-county area, being Floyd, Clark, Harrison and Scott.
Access to the CHOICE program as Geneva referred to right now there's about a two year waiting list for that program. We have about 1400 people waiting. So that means that, hopefully, people can wait two years, but unfortunately that doesn't happen. People die, go into nursing homes, unfortunately, waiting for home care.
My concern is what are we going to do to fix the current problem before we start looking at bringing more people out of institutions, and how are we going to serve the people who are right now in our community.
In relationship if you look at CHOICE versus Medicaid, if you go to apply for Medicaid today at the Office of Medicaid Policy and Planning, they will take your application and certainly you'll probably, if you meet the criteria, you'll get approved and it will be retroactive back sometimes to three months.
If you apply for nursing home placement today, the chances are if you meet the eligibility, you'll be approved back to the first day of admission to the nursing home.
That doesn't happen with home care. You have to wait in regards to the CHOICE program two years before you get services. So certainly something needs to be done to look at -- let's look at CHOICE as maybe an entitlement program, at least some discussion. At least dollars following the client. We've been talking about that for a long time and if we're really serious about that, then if people are eligible for Medicaid or would be eligible for Medicaid, then why would we not let them choose where they want to receive those services, whether it be in their home or whether it be in an institutional setting.
We're saying if you want to go into a nursing home today, you can, but if you need home care, you'll have to wait two years. That doesn't sound like we're trying to keep people at home and in the community.
My other concern is as we begin to talk about these systems we need to make sure that we fully fund the CHOICE program as well as Medicaid waivers. There's a lot of information -- there's a lot of things going on right now with the waivers. Some of our waivers, ICF/MR waivers, persons with developmental disabilities, it goes back to 1996, so people are waiting five years for a Medicaid waiver slot here in our particular area.
The Medicaid system is very cumbersome to say the least. You can't get providers to want to provide services to people in the community because it takes them so long to get paid, so we certainly need to look at how to restructure that system. If we're going to bring more people out into the community there has to be a mechanism for these people to get paid and some kind of incentive for them to participate in the Medicaid waiver program.
Locally, we've lost six home health agencies and providers of the waiver program in the last three years. All we see is less providers and yet we're talking about moving more and more people out in the community, and I don't know how it's going to work with the current system.
We need to make sure that we fully fund the CHOICE program, as well as the Medicaid waiver programs, as well as the 317 slots, if we're going to honestly be able to do what we're proposing, we're going to be able to do is bring people home. 317 is going to face a crisis in this next fiscal year. So we need to look at how are we going to take care of the people we have currently before we move on to talk about moving more people out of the institutions. That's my concern for that.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much.
I think you were next, sir.
WILLIAM EDWARD LORI
My name is William Edward Lori. I'd like to speak mainly to the profoundly retarded because it is well and good to talk about choice, but the plan as it's been presented today, while it uses the word disabilities, it does not really make appropriate distinctions.
It's one thing to be a person who can get along with assisted living but quite another thing to be a person who has no ability whatsoever to care for oneself and to be a danger to one's self and to others. So I think it is vitally important that any plan make appropriate distinctions and recognize specific conditions, particularly the conditions that have been identified by parents who have coped with this for years and years and years.
I think it is also very important that we recognize that a place like Muscatatuck where there are children and adults who are profoundly retarded who have no parents and no guardians and no choices, what happens to them?
If you close a place like Muscatatuck, if you just move them around willy-nilly, I think their future is bleak indeed. I would maintain that the government has a responsibility to care for those very vulnerable citizens who have human rights and human dignity.
I would also say that while it is well and good to talk about creating regional centers for the profoundly handicapped we have to recognize that if these people are in various limited facilities, these young people will not have the freedom to go out for a camping trip.
They will not have the freedom to live in a safe and secure environment. And I think it might be a very expensive proposition indeed to create adequate regional centers for the profoundly retarded throughout the state.
So I hope we're not looking at pie in the sky here. So my plea is indeed for the profoundly retarded and my plea that the government not shirk its responsibility in that regard.
I've lived and worked 23 years in Washington, D.C. The City of Washington and the Congress shirk its responsibility, there are many retarded persons who wound up in prison and on the street and it can happen here.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Mr. Lori.
JAMES BOONE
My name is James Boone. I've got so many questions about this in-home deal. Yesterday in our paper I saw an add for help to take care of eight retarded people. I called that number three times yesterday and never got an answer and never a recall.
I went up to look at this place to see what it was, they had the address. It was just a home, a one-story home. No fence, high grass, not very well kept. And I thought for eight people in that home plus the people that were going to care for those people it would be awfully crowded. And who in these homes will take care of their medicine? There's a lot of medicine in those homes for these people. And you don't get very good people -- (Mr. Boone was unable to finish, as he was crying.)
HEARING OFFICER SYBINSKY: Thank you,
Mr. Boone.
Who would like to express themselves or testify next?
MURIEL LaDUKE
I'm Muriel LaDuke. And I have a son that has severe motor control cerebral palsy that is now living in supported living. He's doing very well but we still have a lot of concerns on some of the things that are going on.
I'm also the Director of the Southern Indiana Respite Program and we do respite in ten counties. I do have a lot of concerns and if I stand here and tell you my concerns we'd be here all day. I want to know where to send this and I am going to write because I do have a lot of concerns.
It is getting very difficult to find people to go in and do respite care. The reason it's difficult is because we're not paying these people enough. We're paying $10 an hour as an independent contractor that has to pay their own taxes which means double their Social Security.
People want to be paid, have their taxes taken out, they want insurance, they want the whole deal. We can't afford it. On the money that we're getting from the state through the respite care program we cannot do this.
So I have a concern of people living out in the community also on the support that they're going to get from people coming in and doing the care. And I understand what you people are saying because we have some severe disabilities and behavior problems out there that I have asked and asked and asked the state to go into the home and let us just send in two providers to take care of these people, because it's dangerous for one person to be in there. If that person would be hurt, that caregiver would be hurt or that provider, what is this child going to do.
They could be there for hours before anybody would even know, before the parents would come home.
The state tells me we can't do this. It has to be a one-on-one. We can only send one person in. As a respite provider, it looks to me like it would be better to give these people half of the hours rather than no hours. At least they would get a break from taking care of that child.
My child stayed home for 37 years. There was times when I couldn't even go to the grocery. If I didn't have a husband there to help me, we would have been in bad shape or both of us probably would have been in an institution by then. Tim's mental ability is fine.
He didn't have the severe mental retardation. He was easy to talk to, so in that way he's a little bit better to handle. But some of these people have both, they've got cerebral palsy, they've got autism, they've got severe behavior problems and a single parent taking care of them with no break away from this, 24 hours a day, seven days a week, some of these people don't even have a day program.
I think the state needs to come in and we need to be looking at a lot here. It's the whole program, it's everything. We say they have choices, they don't have choices.
They may have a choice on where they were would like to live but even that comes down to there's no choices. We have no choices of different day programs. We have no choices of agencies to do the supported living. We don't have choices.
We tell them what choices -- do you want -- where do you want to live? What do you want to do? They tell you what they want to do, whoops, sorry, you can't do that. So they really don't have any choices.
As far as Muscatatuck I have kind of mixed emotions with Muscatatuck with you all. I do feel like a community setting is better. I think they would have good care if the state would work it right. I don't think they should go -- to me -- with severe behaviors going to a supported living type thing. Unless they can really work with them to get them to where they could live there. But there are some up there that can literally pick up a television and throw it at you. I've seen it. I've been in there. I know what it is. People are not willing to take care of them.
But I do feel like we could make regional centers or more than just regional centers, maybe closer to the homes for the parents to be able to go and visit those people and see what their care is like. If you have to drive and you're an elderly person yourself, some of these people are up in their 80's, they can't -- they don't have any family to drive them 100 miles or 200 miles to go check on their child.
If you go and check on your child maybe once a month or every six months, that's not enough. You have to know what's going on with them. And I feel like the state if they're going to do this, if they want to put them in communities, then make it safe and secure for these people to live in with enough staff to do it. That's the whole problem. We lay down with the staff to take of care of these people that need a lot of help. So I will write my letter.
Tim is 41 years old. He's hearing things over all this paperwork that the state wants. We're duplicating the paperwork. That means the staff is taken away from caring for that person because of the double paperwork we keep them doing. We're doing now three forms, the same forms, that does not need to be done. If that caregiver can make out one form and duplicate it by copying by giving it to the other two or three people that need it, that's fine. But for that person to sit there and say you have to copy this -- and the person taking care of Tim was also told that they couldn't even do it on a computer, they wanted them to write it.
They have to do a day schedule of what they've done with him and then turn around and redo the days to a month report. Now, this is getting a little ridiculous. I don't think we need all this paperwork. I think we need to put the care of the caregivers into the person that needs it.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Mrs. LaDuke. Next person.
ROSEMARY BLAND
My name is Rosemary Bland. I have a daughter Leslie Bland. And I'm not very good at talking so I wasn't going to come up, but I felt like I needed to say something.
Leslie is on the Medicaid waiver and it really helps tremendously. Before she was 28 years old and we never got a vacation or anything.
Now I have a good provider. I'm one of the lucky few. But like Muriel said, the paperwork, they want them to do write down what they do with her.
Well, my daughter is severe, profound. She's non-verbal. So as long as they take care of her good and take her places and do things with her, I don't think they have to get into such detail with the paperwork they do.
I know the providers that I have are excellent with her as are the ones she has at the ADA; she goes there every day and that helps on that.
I just don't know if I didn't have the Medicaid waiver, I would probably -- I've had her, like I said, ever since she was born and she's non-verbal and I have a lot of problems. But I think I'm like Muriel too, I think because I've kept her in the home, I think the home atmosphere is great for them. She would probably be a lot worse if she had been in an institution.
She can't tell me things but I know how she feels. I know she's happy. She's well adjusted and maybe that has helped her not have the problems that some people have. Because she is really happy and well-adjusted and I don't have the behavioral problems with her.
I hope that the Medicaid waivers will continue. But I hope like Muriel said, I hope they cut out some of this paperwork because people, I'm afraid, will think I don't want to go through all of this. You can't write down, she's fed, she's bathed and taken care of. But I think if they want to go into so much detail it's going to make people want to quit doing this.
Because without the help, I'm getting older now, and I want to be able to keep Leslie as long as I'm able and I think the Medicaid waiver will continue to help me to do this.
That's all I have to say.
HEARING OFFICER SYBINSKY: Thank you, Mrs. Bland. Who's next?
DORIS HICKERSON
I'm Doris Hickerson. I also have a daughter who is severely retarded and she's light CP. She's 36 years old and has lived in the home all her life. My husband has had one heart surgery. He has coronary artery disease and has got cancer. We are presently under the waiver services which has been a blessing. So I would also like to have this endorsed and have more money for the waivers.
Donna received the CHOICE program prior to receiving Medicaid waiver services due to my husband's illness. She attends a day program at Rauch Center, but I feel like the centers ought to be funded more because they cannot get staff.
They need the extra money to fund these programs. If more consumers are coming out of the institutions, I think they are required to serve these people. So we need to think about our local people also, as well as the ones coming out of the institution.
To me I would like Donna to remain in the community. I have no desire for her to go to an institution or I wouldn't have kept her at home all these years. I'm not saying it's good for everybody, but this is what I would like to have. The problem with Donna, I mean she could live in the community, we could buy her a home, but she needs the services. We need to increase services for the providers to provide the services to each one of these children's needs or adults.
As I get older, I'm thinking about myself too, we need more money on the CHOICE program.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Ms. Hickerson. Would anybody else like to testify? Would anybody like to elaborate on anything that they've said already, those that have testified?
MIRIAM OWENS
One thing I didn't mention but it was on my list, Amanda is on a lot of medicines, they're very strong. They have to be monitored constantly. Yesterday we went to spend the day with her and she moved her arm and it began to pop, well there was a nurse within an hour to see her.
There is no way that somebody could say, as Sue Beecham told me, if she was in a private institution the person that is running it has to take her to the doctor with her own insurance, her own gas money and there's no way she could leave and take my child to the doctor.
Once my daughter gets in the car, she knows how to undo her seatbelt, she knows how to unlock the car, she could be run over, anything could happen.
They have doctors, psychiatrists, nursing care, and they have a dentist who has been doing this for 24 years. She knows how to treat Amanda, she offers Amanda one of her old purses and Amanda goes through any dental procedure even a tooth pulling without having a fit.
Also a friend of mine is in the medical business and she said most of the doctors will not see these people because they cannot afford the liability, because it's a $10,000 fine if they make one error, because the Medicare laws are so convoluted. And Amanda has all that care at Muscatatuck, and I never have to think, oh, what do I do if something happens to her.
Floyd County Hospital won't even let her in the door. She was kicked out of Bingham Center two years ago. So that's another thing to bear in mind, please.
HEARING OFFICER SYBINSKY: Thank you.
COLLEEN FELLER
I just want to say I agree Mirian and I hope you keep Muscatatuck because they've been so good because anytime anything's happened, they call me right now. That's all I'm asking we need to keep this for these people, please.
SANDY BRAUMBECK
I'm Sandy Braumbeck. I work at Rauch Center in New Albany, Indiana. I have worked there for 22 years. I feel very proud of some of the previous speakers. These ladies really advocate for their children. They are aware of what's going on and they know what to do to make services really person-centered and how to meet the needs of the individual.
My heart goes out to you folks that have your relatives at Muscatatuck. And I would say to you that if there's anything that we at Rauch can do to inform, help you in the process, whatever, please contact us. I don't think any one thing is right for one individual.
I work with a lot of adults who are profoundly disabled. Folks who have very severe behavior problems. Folks who have constant need, who can't feed themselves, who need personal assistance.
I've also seen people who have very severe needs have a better life out in the community than they had before. It's not for everyone. And I think the opening statement of CHOICE -- it really needs to be the foundation of all our decisions. And all I'm saying to you is that, if you're interested, let me show you, and let me talk to you a little bit, and let you meet some of the families maybe that have gone through this, and then you make your choice, which is the way it should be.
I heard a lady talk yesterday about a project that's getting started in Evansville, Jacob's Village, where some folks are wanting to start a small segregated living community for people with disabilities.
It flies in the face of a lot of our philosophical beliefs, here's my bottom line on that. I think the state has dropped the ball. The state had made people make decisions like this because the state has not been there to provide the services that the people need to keep them out of segregated environments. I don't know that I could criticize a project like Evansville if indeed those people have not been helped out by the state. And I think the state has dropped the ball and they're forcing people to make some decisions that then some people look at and say they're creating another segregated environment.
Well, one of the reasons maybe they've had to do that is because those families are desperate and they have to do something, and if our state is not there to provide services that are needed, people are going to do what it is that they need to do.
So I challenge the state, put your money where your mouth is, so to speak. Provide people the resources they need for those individualized, inclusive communities. And then the next thing is don't take it away from them two or three years down the road.
That's the next fear. A lot of times people will be funded very substantially to get all this going, two or three years down the road other thoughts come in, how can we cut back on this, how can we cut back on that. It's not a game. We're not a line item in somebody's budget.
These are people. So I hope the state does everything that it says it wants to do. We'll see.
MR. LORI: I'd like to say one more thing.
HEARING OFFICER SYBINSKY: Sure, come on up.
WILLIAM E. LORI
All retarded children don't have physical disabilities. And our son is 53 years old and he's a man. He's a strong man. You couple that with a man that has the mentality of a three or four year old, it's disaster. He does what they call elope. And if he sees a pile a dirt across the highway, he doesn't care if there's a semi or what's coming, his main thing is to get to that pile of dirt and dig in it.
At Muscatatuck we don't sweat that. We kept our Frank until he was 16 and my wife wasn't strong enough to handle him. It was the hardest day in our life when we had to take him there.
If 20 or 30 years ago we were talking about closing Muscatatuck, I'd be on the band wagon, but right now Muscatatuck is a better institution than it has been since its conception.
I don't know what the justice department had in mind -- justice for these children, justice for the providers, or justice for the state and federal funding, but I don't think they really had justice in mind for the children -- we call them children because mentally they're children.
I just question all the justice department stuff and our state representatives and all who are wanting to take the funding away from a very good place for retarded children to be.
HEARING OFFICER SYBINSKY: Thank you, Mr. Lori.
Anyone else would like to come up and --
MURIEL LaDUKE
I understand what he was saying and I understand his concerns and everything. I still feel like if we can't take care of these people here in a group setting in their own community, then they need to be left there at Muscatatuck where they've got nurses and everybody.
Mrs. Owens told me with her daughter -- and we had her daughter in respite care years ago before she went to the institution and it literally does take three to four people sometimes to hold her down, if you're in a mini-institution, there is going to have to be enough staff to pull people from those areas to do that.
I also was talking to a person who had worked at Muscatatuck and she had told me that there is a person up there that she knows of and if that person would move in her community, she would be out of there that night, because he is dangerous, and she has seen before where he's started whatever he did where they had many people around him, circle him so he couldn't get out and do anything, to where she stood back and couldn't even see him for the staff around him to hold him back, not literally hold him, but to stand around him so he couldn't do this.
I'm not sure you're going to get all this kind of care in a community setting. I'm not sure there's going to be enough money to do this type of care. So I feel like there's a need for both.
I think there's a need for institutions for people who need to be there and there's a need for mini-institutions or whatever they want to call them in our own community.
Another thing that I don't understand, there's people that have kept their child at home for years and years and then when we get into a crisis for them, there's nothing provided. I think there is something we should be able to do if that mom or dad has kept that child home all those years, then we need to make provisions to keep them there in their community with the people that they know.
We're paying millions of dollars to people on television and playing ball and coaches and whatever and yet we're not giving enough money to these caregivers, which is the most valuable thing we've got is our people, and we're paying them the least amount of money to take care of us.
This is not the most desirable job in the world. There's a lot better jobs, go out and flip a hamburger and get paid and not have that worrying of taking care of somebody's child or something happening.
I think the state better think more of not making these mighty dollars or whatever they're looking for, and we need to put this money into the care and everything instead of whatever they're doing with it. We get a program and like somebody said, the next three years we're cutting it back down.
I thought we were set with 317. I thought it was going to be for two years, and then two years again, and then two years again, am I wrong? And now they're saying they're jeopardized in that. I don't know why they do this up there.
I'm beginning to wonder, maybe you need to go back and look at what people you've got working up there at the state level, or maybe we need some people that know what they're talking about at the state level. This is too much fear for parents with everything else we have.
KATIE WILSON
My name is Katie Wilson and I work for Rauch. I wasn't going to say anything but then I thought well, it is my opportunity to say something, so I am.
I don't work, per se, with supported living but I do help people with developmental disabilities form meaningful relationships in their community. I help them find volunteer jobs. I help them to get involved in their community. I think it's really beneficial. I've seen a lot of progress and I've seen my clients benefit from it. So when they're closing all these institutions, then there is a bigger need for the type of position I have, but then when our billings go up the state goes, well, why are there so many billings? There's no money to pay for it.
Well, it's because they are closing these institutions and everybody is getting moved out and more people need these types of services.
I go through a lot of red tape with what I do with my clients and that's also a big struggle because I get, really get involved in their lives and I want them to do well. With the lack of money from the state I feel like they say one thing one minute and the next minute I hear something else. I think they need to look at people like myself and my agency and what we are doing for these people, and the money needs to be there.
HEARING OFFICER SYBINSKY: Thank you, Ms. Wilson.
Any other questions or comments?
(Question and answer session between the audience.)
HEARING OFFICER SYBINSKY: Any more comments?
VICKIE OWENS
I'm Vickie Owens. I also work at Rauch. I've worked in the field of developmental disabilities for about 15 years. I've worked in a self advocacy group that's active in Indiana.
I started my work in Colorado and about the time I started there they closed their institutions and it was very successful, but it took a lot of work, a lot of commitment and a lot of money to start with.
Indiana's 317 plan is one that, if followed, will provide what is needed in the community. We don't need to go back and re-invent the wheel. I was at many of the meetings when the 317 plan was created. It had a lot of input from consumers and parents and people it affects directly.
I was also involved in a peripheral way in the closing of New Castle, and at first the consumers, the residents were extremely concerned about losing their homes, but many of them went back to their communities and got re-involved with family and friends and got along successfully.
I don't think as I said, we need to re-invent the wheel. We need to follow through on the 317 plan. It creates the community support if the state will provide the funding needed.
HEARING OFFICER SYBINSKY: Thank you very much, Ms. Owens.
ROSEMARY BLAND
I just wanted to say one more thing about the ADA program, adult daily activities. I know when my daughter -- she was out of the program for 18 months until I got her in the ADA.
I know it's easy to get funding for the young, and it's easier to get funding for the ones that can work, but like my daughter who is not capable of doing these things, it's really hard to get money for the ADA program. Because it's like once you're 18 or 21 you don't have this problem any more.
Well, Leslie will have this problem the rest of her life. She's 32 years old, and as long as she is living she will not get any better. But it's kind of like -- the system is really crazy -- after she became 21 she was out of the program because there was nowhere for her to go, nothing for her to do. She really regressed until I got her into the ADA program.
I wish they would think more about the severe and the profound. There's more funding for the young and the ones that can work. I think if people would put themselves in our children's position, maybe they would feel differently about it. I have to speak for her because she can't speak for herself. I wanted to put my two cents worth in.
Thanks.
HEARING OFFICER SYBINSKY: If people would like to stick around after this is over and find out more about the Rauch Center and do some communication as a result of this and learn more about what's going on in services that are available, that would be a spin-off benefit of what we're doing here.
MURIEL LaDUKE
I have another thing I want to say and then I'm going to be still. I'd like to tell you about something on the Medicaid waivers, they could decide that parents could provide the care for their child and get reimbursed if they lived down in the boondocks where no agency could probably get there.
And there was another one but I can't remember it. We've got some children out in the community that have got some really big needs and we don't have the funding to support those needs in the home.
The parent wants to quit her job and get paid for it, which I think we should do, because she's going to make sure the child is getting the care that she's been taught to do for him by doctors and nurses, and she's probably the best person to provide the service and I think it's going to come to where we have some people like that, that it is important to get the care that they need, and if the parent feels like this is what they need to do to keep that child in the home as long as they can, then I think we should be able to support that need.
HEARING OFFICER SYBINSKY: Anything else? Anybody wants to add anything?
(No response.)
Like I did mention, we are going to stick around and try to answer any questions or provide information for you. We do appreciate very much the time you've taken to come out here and provide your input, and I do want to say it is going to be listened to and it is going to find its way into the kind of policies that we adopt in this plan.
I'll close the meeting, but once again, thank you very much for coming, and we look forward to working with all of you to create a really good system for Indiana's consumers and their families.
Thank you.
(Hearing closed at 10:55 a.m., April 18, 2001.)
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Linda R. Merkl a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration in the matter of the Olmstead Act, beginning at 9:00 a.m. on the 18th day of April, 2001;
That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 27th day of April, 2001.
____________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2001
