Public Hearing Transcript Vincennes
BEFORE THE
INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
FIRST EDITION OF INDIANA'S COMPREHENSIVE PLAN FOR
COMMUNITY INTEGRATION AND SUPPORT
OF PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
ALISON BECKER, HEARING OFFICER
CINERGY
PSI BUILDING
80 WHEATLAND ROAD
VINCENNES, INDIANA
AUGUST 22, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Becker
Public Comments:
Dale Helmerich
Norene Swartzentruber
Angie Linus
Evelyn Hale
Frances Donaldson
Shirley Ruggiero
Shirley Pry
Debra Thompson
Linda Witsman
Frances Donaldson
Terry Whiteman
April Hoke
Julie Weeks
Pat Stewart
Leona Blaylock
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: I think we'll go ahead and get started.
My name is Alison Becker, and I am the Director of Fiscal Services for the Division of Disability, Aging and Rehabilitative Services for the Family and Social Services Administration. As you can tell I'm really into service.
I'd like to welcome you to today's hearing to talk about Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities.
This meeting is for all of you to give your comments on the plan and where you think we should go, but before we begin I just have a couple of things I would like to talk about with you.
First, where do we want to end up? Where are we now? Where do we want to go next? And what are we looking for from you today? And several of you were with me this morning, so if anyone would like to get up and give this part of the presentation, that would be fine. Any takers? I guess I'll have to do it again then.
First of all where do we want to end up? As you all know there was a supreme court decision known as Olmstead v. L.C., that was handed down saying that individuals have the right to live in the most integrated setting possible. In response to that Governor Frank O'Bannon issued an executive order last year asking the Family and Social Services Administration to put together a plan in response to this decision. The overall goal then of the Family and Social Services Administration as we craft the subsequent editions of the plan is to allow for the most integrated setting possible while also allowing for consumer choice. So throughout all of our discussions and writings and goal searching we have that in mind.
One of the biggest criticisms we've had about this plan as we've been throughout the state is that it is short term, and that is absolutely a fact. That was done for a couple of reasons. The first reason being that we wanted to put down goals that we knew we had funding for and we knew we could accomplish over the next couple of years. We also wanted to make goals and move forward while at the same time recognizing this will be a continuous effort between the state and the consumers, so we wanted to make sure that we had consumer input and could involve that through a commission.
So with that goal in mind where are we right now? We have issued a first edition of the plan that was sent to the governor on June 1, 2001, and you will notice that we call it a first edition. It doesn't mean it's a draft. It is a completed first edition. However, we recognize that this is going to be an ongoing planning process and a living document. Therefore we've decided to term it a first edition, second edition, third edition, and so on.
We have also applied for three grants. The Real Choices Systems Change Grant, the Nursing Facility Transition Grant, and the Consumer Directed Care Grant. We've applied for those through the Centers for Medicare and Medicaid Services, formerly known as the Health Care Finance Administration. We are to hear about those grants by October 1st. If you take a look at your Transitions newsletter, those grants are all outlined briefly in there.
We have also already received two grants including a $20,000 Olmstead Mental Health Grant which was awarded to the Division of Mental Health and Addiction. The Division of Mental Health and Addiction applied to use this grant for consumer involvement including identifying and training consumers and family members to participate in the Division of Mental Health and Addiction's advisory groups, Olmstead hearings, related task forces and planning committees. Focus groups of consumers and family members will also be held. I think this is a really exciting first step in ongoing consumer input.
The second grant we already received was a $50,000 Starter Grant which will allow us to continue to hold public hearings throughout the state, to continue to solicit consumer input and to also begin work of the Governor's Community Choice Commission. This commission, which we're still working on the creation and appointment, will begin meeting this fall and will be charged with very specific duties including recommendations for budgeting, overseeing grant implementation of these two grants and hopefully the three additional grants, overseeing implementation of this plan and development of subsequent editions of the plan, and looking for additional grant opportunities both from the federal government, as well as private sources.
So where do we want to go next? Well, first and most importantly we want to get comments on the first edition of the plan, and that will be utilized to create a second edition. The second edition will be a status report of where we are on the goals set forth in the first edition. It will also incorporate your feedback.
So while what you said today may not show up verbatim in the plan, please know that the spirit of your comments will be taken back and utilized. Then the commission will utilize this second edition to draft its work plan and to go forward on the goals that I set forth earlier.
So what are we looking for from you today? Well, this is your meeting to provide your feedback on the plan. We recognize that life here in Southwest Indiana is not the same as it is in Indianapolis, Lafayette or even South Bend, but that your community has very unique needs. So we're here today to listen to your recommendations for programs to fill in the gaps in the current system or to hear about programs that are working well and should be carried out to other parts of the state or should have more funding put into them.
We're also looking for suggestions of where we should go from here? What type of things do you recommend we look at as the commission begins its work and we continue to come up with additional goals and editions of the plan. So that's what your job is today. You have a lot to do. So you had better get busy.
There are a couple of rules. We do have a court reporter taking down every word you say which will then be posted on FSSA's website so you will be world famous for your comments. We would ask that you come to the front of the room. Use the microphone so that everyone can hear you. State your name and if it is a difficult spelling, please spell it for the court reporter. Those are your two rules.
The other thing is, I believe, a sheet was passed out with the address for where you can submit written comments. There is a mailing address. There's an email address and there's a fax number, so please, don't hesitate to send us written comments. If you would like that to be considered as part of the next edition of the plan, we would ask that you have it in by September 10th. Otherwise they will still be considered, I just can't guarantee they'll make it into the next edition of the plan.
So that's it. I'm going to turn the meeting over to you now for you to tell us what you would like for me and others in the room to take back to the state as we begin work on a second edition and the formation of the commission.
Thanks. So who would like to start?
(Positive response.)
Yes.
DALE HELMERICH
I'm Dale Helmerich and I'm on the Chair with the State Commission on Aging and the commission provides the following comments to Indiana's comprehensive plan for community integration and support for people with disabilities.
- The document entitled "Indiana's Comprehensive Plan for Community Integration and Support of Persons with Disabilities", has no vision statement for the future and, is very limited in scope. It is not a comprehensive plan. Most action steps are short term, meaning, it does not include the number of persons in need of service, the projected number of individuals to be served, nor the funding needed for such services. Time lines are short term with most being within the next two years, and most action steps were already in process before the document was written. The document is more of a status report than a comprehensive plan.
- The title of the document needs to be changed to capture older adults and individuals with disabilities of all ages. Most older adults in need of in-home and community based services are already in the community. Their goal is to continue living independently in their own homes and communities. The use of "community integration" in the title excludes this important part of the population. Most older adults in need of in-home and community based services do not view themselves as having disabilities and therefore do not identify with this document. For example, an individual who is 95 years of age may need access to services to assure that the home is safe and healthy. Other older adults may need services because they are frail and/or vulnerable. A more inclusive title is recommended. Under the IC 12-10-11-8, the CHOICE Board, appointed by the Governor of Indiana, shall establish long term goals of the state for the provision of a continuum of care for the elderly and disabled. This duty and the previous work of the CHOICE Board is not recognized in the current document.
- Therefore, it is recommended that a true plan be written that includes a long term vision statement, coordination with the CHOICE Board, Commission on Aging and other existing Boards, rather than establishing a new Commission, the number of individuals in need of service, the number of individuals to be served each year and the cost of such services.
A more appropriate title should be developed such as "Indiana's approach to building a strong base of community programs and services for older adults and individuals with disabilities of all ages."
We feel very strongly of the commission. We voted in support of this and we highly recommend this. Thank you very much.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
NORENE SWARTZENTRUBER
My name is Norene Swartzentruber, and that is spelled S-W-A-R-T-Z-E-N-T-R-U-B-E-R.
I have a very strong concern about consumer choice. Parents and consumers need to be given true options. We still have case managers recommending institutionalized care as an option as late as last week. This recommendation was given to an individual that is already receiving Medicaid Waiver services. It was presented as a way to decrease costs along with the choices of moving in with parents or seeking a roommate.
I am very interested in following the progress of the Aged and Disabled Waiver. It needs to be much more flexible and offer more creative options. An individual should have a wide range of options to select from in order to meet their individual needs. We have consumers sitting in nursing homes waiting for their opportunity to get out and back into private residence. We very badly need a method of informing people that they have options other than nursing homes.
Please establish time lines that will drive this movement forward at a pace that will give people hope.
Thank you for coming to Vincennes and giving people an opportunity to speak.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
ANGIE LINUS
Hi. My name is Angie Linus, and I work for ATTIC. My last name is spelled L-I-N-U-S.
Not exactly like people would think. Really I kind of rambled in the stuff that I wrote so I'm concerned this won't go well but here goes.
Reading over the plan I noticed that Policy Direction No. 2 is: Provide information, access to all consumers to increase their opportunity for informed choice. And so I thought that the wording should be a little bit different. Rather than increase which is a relative term, I feel that the direction should maybe use a word like ensure and this may require that there be a mechanism in place for ensuring that consumers have had a genuine opportunity to learn about all of their options.
Then Policy Direction No. 5: Increase the system capacity for provision of high quality care. Really the only things that I've come into contact with that was really a concern for me was an area of moving towards private hire. The state does not have a really good reputation in terms of the timely reimbursement for services, with regard to these types of services.
But this isn't a statewide issue because if you look at programs like First Steps, providers are generally reimbursed within four days. So it looks like it's mainly an issue for the Medicaid Waiver type services, where this is a problem. I'm concerned about that because this might be a real prohibition to being able to have providers for that high quality care if they're not being reimbursed in a timely manner.
Finally, people who are already integrated should never have to be in fear of going back to into an institutional setting. Just from what I've learned in the almost six months I've been working at ATTIC, toward the end of the conversion task force, I believe the comment was made that the development of the implementation of the Olmstead plan, doesn't really seem to be in anyway a priority in Indiana.
It would seem rather unnecessary in a meeting like this one to have to bring up the fact, to have to remind anyone that this is a civil rights issue. So it's very important that when you give people back their rights not to end up taking them away. That's very fundamental. That's really what we're talking about. We want to make sure that when we take people out of nursing homes that they don't have to be in fear of ever going back into an institutional setting.
Thank you very much.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Yes.
EVELYN HALE
My name is Evelyn Hale, E-V-E-L-Y-N H-A-L-E. I did not have information in advance to prepare so I have very little to say. Except that my son might have to be reinstitutionalized because they said my son has too high of a cost factor. So I hope you can get this worked out so that he doesn't have to be reinstitutionalized.
When he was in a small group home he had his leg broken. When he was in an institution he had severe damage done that cannot be repaired. We don't know what happened. We know what we were told but I don't feel that he should ever have to go back into an institution just because the cost is seen to be too high. Because I hear there are others that are getting as much as he had and I really don't know what else to say.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
FRANCES DONALDSON
I'm Frances Donaldson, D-O-N-A-L-D-S-O-N. I am an employee of ATTIC. I want to introduce my friend today.
Shirley and I became acquainted about six years ago when my husband started volunteering at the nursing home. When Shirley went into the nursing home she was on dialysis three times a week and on lots of medication and so she needed nursing home care at that time. Subsequently she's had a kidney transplant and is doing very well. And for six years I didn't know what she was really doing in a nursing home.
But my husband came home one Sunday after volunteering and told me Shirley wants out of the nursing home. So I talked to Shirley and she had already found an apartment but the nursing home was throwing road blocks in her way. So she had a social worker call me one day because they told her she couldn't leave because Lifeline was going to be self pay. So she has a spin down. What's the big deal? That's part of your spin down. So anyway when she got ready to leave, and she thought that the person who had her power of attorney -- she came to find out, he was her guardian. And all this time he could have stopped her from doing the things she did but this is a very active lady.
She was the chairman of the residence. She went to the mayor in Washington, she said they were charging the nursing home patients 50 cents for the bus trip. For a lot of people with disabilities it's 25 cents, so she went to the mayor and she got it reduced to 25 cent tickets. She went to the State House and got $2 more added to the nursing home money that they were able to keep a year. She spoke up out there and lobbied. She is just a very active lady. She does all kinds of volunteer work and as she just told Pat awhile ago, she's one of the escapees.
She's been in her own home approximately three weeks now after spending ten years in the nursing home. I'll let her get up here and speak for herself. This is Shirley Ruggiero.
SHIRLEY RUGGIERO
Well, I can't get up there so I hope everyone can hear me. Like Frances said I've escaped. I was in the nursing home for 10 years and 3 months. I took care of myself. You know they brought you pills because they had to do that. I did a lot of volunteer work and helped with entertainment. But I wanted to move into my own apartment. I wanted my own home and my own life. And as she said I needed to be there bad.
I needed the help. But I'm all straightened out now. I had my kidney transplant and I'm doing great. No problems. I just feel very very fortunate that everything has worked out for me.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
SHIRLEY PRY
My name is Shirley Pry, P-R-Y. I'm Randy Pry's mother. For a short time Randy was in a group home and he wasn't happy. He wanted to be out on his own, so that happened, he got his wish. He has his own apartment and he has a good job. He works for Pizza Hut in Washington, Indiana.
He's just a very happy person. This past spring he won the Justin Dark Personal Achievement award in Indianapolis. He lives over in Washington, Indiana, and I'm just really proud of him. He's really achieved something. If it wasn't for the Medicaid Waiver, I mean I just kept thinking, I don't know what we would have done. It really does work.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
DEBRA THOMPSON
I'm Debra Thompson, that's shortened to Deb.
I just went through the comprehensive plan this morning. I noticed on Policy Direction No. 5 what it said about transportation and employment and housing needs.
The transportation part is a pretty big issue in smaller or rural areas. In this area we have a van service and they only run from about 6:00 to 6:30 in the morning until 4:00 in the afternoon and not on weekends at all. It's important that people with disabilities have full access to all community activities no matter what the day or what the time. I feel it's an issue probably for people that are in need of services other than a Medicaid cab.
A Medicaid cab will take you for doctors visits, hospitals, things like that. But we have other transportation issues and Medicaid is not going to pay for that. But there needs to be something to address, if we're talking about inclusion into the community of all persons, a way to get to these activities.
I've been blessed. I volunteer at ATTIC and they reimburse my transportation costs with the van but, like I say, it's very limited to the time and the duration, and no weekends at all. This cuts down on a lot of activities that people who are either elderly or disabled or both, whatever, it keeps them from participating in all community activities. That's just about all I have to say.
Thank you.
HEARING OFFICER BECKER: Thank you.
One of the rules I was given before I left was that I was not to reply to the people. I was to let them say whatever they want to say and not respond.
But I would like to break that rule and comment on this. With the new DD waiver that's coming on line October 1st, we're starting a whole new era in transportation. At least for people receiving waiver services. It's a place to start. People will be reimbursed for any community inclusion activities and transportation needed to provide for that. So I'm really excited about that and I'm excited that people who have made this commitment that the changes we're making on this DD waiver, once we get things ironed out, will be made into other waivers too. I know it's not everything but it is a start.
So who would like to speak next?
(Positive response.)
Yes.
LINDA WITSMAN
My name is Linda Witsman, W-I-T-S-M-A-N. I live 13 miles north of Loogootee between Jasper and Bloomington, next to the Crane Naval Center. As the parent of two children with disabilities, a daughter, 14, and a son, 13. My son has Downs syndrome, my daughter autism. I'm extremely concerned that our State of Indiana develop and implement a forceful and effective plan to fulfill the intent of the Olmstead decision.
Their father and I have done everything humanly possible to see that they were included into their community. I went so far as to quitting my job, impoverishing myself, in order that I could find out the best practices for my children and get them in place, now that the Medicaid Waiver has come into effect for them. I've had them for several years and that is helping us achieve our goals.
Just for an example of a way that we use the waiver money, my daughter will be a basketball manager this winter. And a service provider will assist her at first, at managing her job. But I fully anticipate that the assistance will quickly fade back until that person will no longer be needed. My children from the very beginning have been included.
So the state has not had to provide, and the federal government has not had to provide maximum services. So if children and adults, like Mrs. Hale's, can benefit from those extras that I can give to them -- because we have fought to get them from the very beginning so that we didn't need so much support.
I hope that no other parent or person with a disability has to wait such a long time and get lost in the computer and waste a year and not even be on the waiting list. I also hope that when they do receive the waiver they have the knowledge to select the case manager, and can find a case manager who will be informed and caring enough to assist them in developing a plan for what they truly need and just not what they think they want.
I've seen too many people who have no idea how to use the waiver to offset the community and develop the full potential of the person with the disability. I do understand from experience how exhaustive a parent can become from dealing with all the seemingly insurmountable challenges, but this should not happen any longer. The waiver should be a springboard and not a crutch.
My children participate in recreational activities with their so called typical peers, no Special Olympics for us. The waiver allows us to build on what the school goals are and develop them more fully and efficiently. I can give you an example of that. My daughter is quite taken with the computer. This is her in the second grade. As I say we started early with her, we even started in pre-school. She went to regular pre-school too. But this is her in second grade on the computer.
(Pictures being shown.)
We had her in an assisted technology program. This is her playing basketball. Then she went on to win the sportsmanship award. The last time she went to basketball camp she told the provider to take a hike. She wanted to do basketball camp by herself, and so they did, because everybody knows her and everybody knows what to do with her.
Our son is the same way. Although he has autism and is not nearly as socially outgoing as she is, because of the fact that he has been included, we have such a natural circle of support in the community. So services are not nearly as intense as they would have to be with other children.
I'm also speaking here today for other parents that couldn't be here. There are three parents in Salisbury, which is quite a distance away, it's up near Bloomington out in the hills. For Rene Sheffler who's son, Skyler -- she had her son home for three years. Never sent him to school because she had found him in school in a locked closet. She has just now been targeted for the waiver, and she can't tell you how delighted she is and what a difference it will make in her life. She couldn't come down today because her husband has to work, they have one vehicle, so she could not come. She wants to tell you how important it is for Skyler to have access to the community. For him to have the opportunities to attend camp in the summer time. So they can finally be a real family and go places.
Becky Bollin from Salisbury, the first child with a significant disability to attend his own school. She couldn't come today because she took off so much time with me and we did some mediation through the school to get Skyler in school. So anyway she couldn't take off any more work.
JoAnn Jordan, from Salisbury, whose adopted son John is their second child with a significant disability to attend his home school in that area. She wants to thank the state for the waiver and the services that helped us keep him in his neighborhood school, because of the extra services he had from the waiver. She hopes that Ariel her daughter will access the waiver also later on.
In Jasper, Brian and Christy Kessner. Christy could not come today because she has three little ones under the age of four that she baby-sits for. But she wants to stress the importance of the waiver. Her son has autism. He is on the autism waiver. He is able to go to the Holiday Inn three times a week because of the natural support from the people that know him in the community. The provider goes with him to the Holiday Inn and he is able to swim. The manager has agreed to that. All during the winter he has that.
She also wants to ask for flexibility in the system. She had a provider that had music therapy experience and it was so helpful, and I know all the kids with autism or developmental disabilities would really benefit from that.
Also Connie at Lagootee, her son has Downs syndrome. She's very anxious for him to be on the waiver. She's seen my daughter and wants him to have access to the community and acceptance like my daughter does. She couldn't be here today. She's a nurse, and she's having an immunization clinic today.
At Shoals, Trina Truelove, who has a daughter, Jessica. She has benefited from the waiver with behavior modification. She requests that there be more behavior modification done in this rural area. Her child was getting out and running across the highway to the Dairy Queen. The behavioral person has really made a difference in their lives.
Anyway and the sum of it is -- and I almost forgot. My mother. Sally Straughn, who is 81 years old, has had two strokes, two knees replaced, has just had ankle surgery and has contacted Breaking New Ground to adopt her lawn mower so she can continue doing her own lawn. And all her friends, they don't want to be in a nursing home. They want to be out in the garden and seeing their friends. They want access to the community.
So on behalf of all those people who can't be here, as well as my own two children, I1 thank you for what you've given us and I ask you to really look at the Olmstead decision on what it really needs. Give us flexibility, time lines, transportation and services in this rural area.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
FRANCES DONALDSON
This time I'll speak for myself. I'm Frances Donaldson. As I said I work for ATTIC.
I'm also a person with a multiple disability, and I have three children with disabilities. My children have not needed the waiver but a lot of my friends' children have.
One of the things that I'm concerned about is housing. There is just not enough accessible apartments. And I know we learn visibility and even Shirley has an accessible apartment and it is still not what she really needs. I think housing out there -- we need to really get out and try to get some of these projects that they are building to have accessible apartments for our people.
One of the other things I'm concerned about is transportation in our area. In Washington, Indiana, we do have a ride access in our county but they only run certain hours, and in the evenings and weekends they have no way to go anywhere.
That's one thing too though that Shirley hinted on, is the supports from the people in the church. We need to talk to our communities, have meetings, let them know that there are little things that they could do for natural support. I mean most of us have families and such that can stop and do things for us, but there are ways that we can help people in the community just to have natural support so that they can live on their own. So that they don't have to be tied down in a nursing home. Just to give somebody a ride somewhere or take them to the grocery store, bringing things that they need, answering phone calls, whatever. There's just a lot of things that could be set up out there.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
(Positive response.)
Yes.
TERRY WHITEMAN
My name is Terry Whiteman, W-H-I-T-E-M-A-N. I work for the State of Indiana Protection Advocacy Services, and that's my vocation.
Working for and with people who are differently-abled is also my advocation. It's an issue of civil rights that I have supported for many years. Very similar to treatment and discrimination of minorities, discrimination of women in the work force, discrimination of children, all of those are civil rights, these are many mandates that I support.
This current plan is much improved over previous plans and drafts that I've reviewed and provided input on, both through my own initiative and through our agency. Still we rely very heavily on the word should, instead of more forceful, functional or assertive language such as the word will. I would like to see a much more assertive plan. The needs are great. The plan still seems to be heavily influenced by a very strict and maybe unfair interpretation of the ADA, reasonableness mandates and the limitations on fundamental alterations.
One of the significant issues that I see in that is cost of services. Cost of services can not be used singularly as a limit to services or construed as unreasonable. When you look at the individual needs that need to be addressed, the practice of designing services based strictly on financial concerns is an inappropriate interpretation of these guidelines. And it's obvious to any of us in service delivery that cost is still used as a practice in addressing what the services are going to look like, not the individual needs that are present.
I'm concerned with Policy No. 1, No. 11. It appears that the action to recertify existing group homes has, for more intensive use, will leave a gap in the continuum of services. If it eliminates those homes in current existence to provide less restrictive services, more integrated services than the intensive homes, then we have a gap in services that will not allow for appropriate integration or appropriate services. This also appears to me to be predicated on a debilitating assumption that those individuals who have been subjected to long term inappropriate institutional settings that their current behaviors or level of functioning will be the same when they are moved into integrated community functions. I believe that's a debilitating and an inappropriate assumption.
While it may be necessary for some individuals based on individual needs to have the opportunity for more intensive settings, and I certainly don't disagree with having that as part of the continuum, we don't need to assume that everybody who's still in institutional settings need this intensive level of care. It may very well be a more restrictive place for them and deny them access to a more normalized and integrated way to live.
Further, it's recognized that implementing this plan appropriately will take time. However, there is an obligation to the citizens of this state who are disabled, who are in an integrated environment right now, and those are guaranteed to them per several current Indiana statutes which are not being enforced, and have not been for years. Specifically Indiana Code 12-24-19-3, the right for individuals in Indiana, rights to live in the least restrictive environments and integrated settings. The rights of individuals in Indiana covered under ADA are already guaranteed, with no reasonableness limitation to appropriate services which should be enforced.
The current plan appropriately seeks more federal funding. And we agree with that, however Indiana has a history of under use of available funds. We've had that history for a long time. Even with available funds there have been thousands of dollars each year reverted to the general fund or back to the federal government. There needs to be steps taken to correct this past problem.
I appreciate the opportunity to be heard.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Yes.
APRIL HOKE
Hi. My name's April Hoke, H-O-K-E. I have a son who will be eleven years old in September. I have three other children, ages nine, eight and three. My oldest son is Austin, he has autistic section disorder called persuasive developmental disorder.
He has spent a lot of his time in and out of treatment facilities. At age four he spent fourteen days at Charter Hospital in Terre Haute. June of 1999 to 2000 of January he spent nine months in a facility in Evansville. He spent fourteen days in April and May in Bloomington Hospital, inpatient treatment. We are going Monday to look at another facility for patient treatment, because our community does not have services here to provide in-home care.
He has no severe problems that could not keep him from going to school. He has no emotional handicaps. He has no problems that keep him from functioning with normal children.
Educating the public and keeping them aware of what's going on around them -- we hid him from society for a while. When I sent him to school children made fun of him, but the first three years he went to school he made good grades. It was my choice.
We've had him in therapy since age three. We sent him to a hospital for treatment because we thought that was the best choice. The last treatment facility we sent him to his grades went down, he cannot function. I do not believe sending a child out of his home, out of his community, out into a facility is the best choice.
I think keeping him at home with his family and his friends and the surrounding environment, that's where they'll come back, that's where they're going to live, that's where they're going to function, that's where they're going to get a job at. They're not going to stay on the system.
My son is going to college. I don't care what the high school says, he can read, he can write, he can do math. There are so many choices out there for my son and I think the Olmstead plan has so many possibilities for him.
I wasn't educated about what to do to help him, but I'm learning. Our school system in the area -- I work twelve miles away from here my son was the first one to go there with this kind of problem. Children made fun of him. He has siblings that deal with other children that make fun of him and call him mentally retarded. They make fun of his aggressions. He's messy when he eats so we had to fight to make sure he ate in the classroom with other children.
Things are normal for my son. If he stays in the classroom with other children, he will be with typical kids his age. If he goes to regular classroom he will be okay, but if we take him out of that classroom and put him in a room with children with behavioral problems, he acts just like all the other kids around him. He doesn't know what it's like to be a normal child.
He played baseball over the summer. He quit halfway through the season because he couldn't keep up with the other kids. If he had had somebody beside him all the time teaching him -- I coached him. I told him he could do it. I advocated for him. I bribed him with candy. I did everything possible, but I can't do it by myself.
I have four other kids and they take a back seat. That's really hard to do. In the community here, people help. I've not asked for church help. But there are people out there who reach a hand out and I think this is the best thing I've seen.
I'm going to turn down the facility we're visiting on Monday. I'm not sure how that's going to affect his case manager he's working with or the choices they're going to offer me because I've always been afraid that if I say no, then they're going to say they can't help me. But I don't want to send him to an institution. I don't want him to go to a hospital.
He has such a loving heart. He has worked very hard. He can make his bed. He can do chores. He can do his homework. He takes out the trash. He feeds his pet turtle. He will help give his brothers and sisters baths. If you look at him, he looks normal. If you play with him, he plays normal. He just has times that are bad like any other child. There is nothing more than I would like to see this happen but there are so many different things that can happen for him. As far as the respite, respite would be nice.
I want him to be here for high school and for college. There's so many things in assisted technology that can help him. He has a computer at home, he doesn't like it. I've been getting more programs and CDs to try and get him involved with it. I think another person could help him more and help me learn to teach him what to do. That's how the waiver is going to help him. It's going to help me. It's going to help the whole family.
People that volunteer in the community can help us. There are so many people out there in my community who do make a difference. I want to thank people like the YMCA who offer programs to make it possible so that my kids can go to camp. My son was offered a choice to go to camp this summer. Our case manager turned them down because he felt his behavioral problems were not in line. So other kids will go to camp this summer, my son did not. Is that fair? He knows. He's eleven and he knows. Things like this need to change, and I hope it does.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Yes.
JULIE WEEKS
My name is Julie Weeks, and I'm with the Division of Family and Social Services. I apologize I'm not really prepared today. Basically, I found out about this yesterday.
I'm just here to stress the needs of a young man who has been in our system for the past ten years. He has been severely sexually abused. His parents rights have been terminated. Since he has been in our system he has been in several placements. First of all he has multiple disorders, mental and developmentally.
My problem is that since he has sort of aged out in our system we have been trying to find a placement for him. I've contacted the Department of Health, I've contacted -- this kid has been tested by anybody and everybody. My problem is no one is willing to assume responsibility for him. Our agency still has him and he will be 20 in February. He is currently living in a group home. Their facility is not equipped for his needs. I guess our frustration is transitioning our kids into a community setting.
Adult services is not my realm and it is frustrating in trying to find out where I should go to get him help. I'm concerned.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Yes.
PAT STEWART
I'm Pat Stewart, and I'm a director of ATTIC. I have two young adults with significant cognitive disorders. I'm here to speak for the ones that I don't think has been addressed here, and that's us, the older parents who are trying to plan the future of our children when we're no longer here to watch over things and to ensure that they have what they need, in the right way, and the way we want it.
You've worked hard to make sure that you've built that circle of friends and your kids are integrated. One of my very biggest fears in the world, and I'll say also I'm not very prepared, is that the best laid plans can be absolutely destroyed by the state on a whim. And it's absolutely terrifying to think that I have no control over what could happen to my children, where they will live, and what we have built for them, when I'm no longer able to provide for them. And nobody fights for kids like their parents. As much as we would like to think they do, nobody does. It is absolutely terrifying to me to think that all my work will be gone the day after I die. Because it will cost too many dollars to continue the lifestyles that my children are accustomed to. My children will then have to compromise their lives.
We do the best we can but knowing that, we shouldn't have to think that it's all for naught. We should be able to trust the state. It's terrifying, there's no way to explain how terrifying it is. That's all I'm going to say.
Thank you.
HEARING OFFICER BECKER: Thank you, Pat.
Who's next?
(Positive response.)
Yes.
LEONA BLAYLOCK
I was actually hired to come here today but I would like to step out of my role and speak today.
I have a deaf daughter and I'm very proud of her. She has her master's and is a teacher for the deaf. She has a family, a beautiful home, married a wonderful deaf man, and has four hearing children. They said that would never happen. They're little devils, believe me, and they sign also. I'm very proud of them for that.
I've been in this field for 48 years. I interpreted for 25 years for free because we were not considered professional people. We were helpers. We were parents. And still yesterday when I went to the hospital, they said are you family? I said no and yes, I am family. I love my deaf people and it really touches my heart. Because I've been there, I've done that, and I'm still doing it. I work many hours, have three jobs and I love them all. I wouldn't give it up for anything.
This is my gentleman friend. He lost both his legs from diabetes. He's going to cry too. This is difficult.
Thank you for letting me speak.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak? Anyone?
(Question and answer session.)
Would anyone else like to speak?
(No response.)
Well, on behalf of Secretary John Hamilton and Governor Frank O'Bannon, I would like to thank you all very much for coming today. Your stories really touched me. There's really been a lot of exciting things going on and there are a lot of disappointing things as well.
We have children out there who are in real need of services and we need to meet that need. I appreciate you all sharing these stories and experiences and making suggestions on how we can better serve the people in Indiana.
I've learned a lot over the past three days and it's amazing how much more you learn each day, as Pat said, how much parents advocate for their children and how hard you all work. We owe it to you, as a state, to provide you with the best services we possibly can. Thank you.
(Hearing ended at 11:45 a.m., August 22, 2001.)
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Linda R. Merkl a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration in the matter of the Olmstead Act, beginning at 10:00 a.m. on the 22nd day of August, 2001;
That said hearing was taken down in stenograph notes by Andrea Jacobs and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 5th day of October, 2001.
______________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires: January 27, 2009
