Transcript of Public Hearing South Bend
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
CONFERENCE ROOM
ROBINSON COMMUNITY LEARNING CENTER
921 NORTH EDDY STREET
SOUTH BEND, INDIANA
AUGUST 21, 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:
Matt Costello
Anita McCollester
Penny Torma
Dan Harshman
Williard Phipps
Ginny Nawrocki
Peggy Unwin
Kevin Griffith
Sandie Gardner
Tom Duckworth
Barb Baker
Dorothy Krueger
Paul Curry
Paul Reese
Rosalie Smith
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: Good Morning. I think we'll go ahead and get started. Can you hear me okay?
(Positive response.)
My name is Alison Becker and I am the Director of Fiscal Services for the Division of Disability, Aging and Rehabilitation Services for the Family and Social Services Administration. Yes, that all does fit onto a business card, but just barely.
I am also coordinating the State's effort in response to the Olmstead decision, the creation of the comprehensive plan for community integration in support of persons with disabilities and then the round of public hearings that we'll be having throughout the State over the next week and a half. You are my second official hearing, so congratulations you're not the guinea pigs.
I'd like to welcome you at this point on behalf of Secretary John Hamilton and Governor Frank O'Bannon. I just want to start out briefly with a few remarks about where we want to end up, where we are right now, where we want to go next, what I would like from you today, and then the meeting is yours.
The point of today's meeting is for you to give feedback on the Olmstead plan that was released in June in hopes of preparation of our second edition at the end of September.
So where do we want to end up? As most of you probably know this all started with the supreme court ruling Olmstead v. L.C. The supreme court decided that individuals have the right to live in the most integrated environment possible of their choice. As part of that Governor O'Bannon issued an executive order last year requiring the Family and Social Services Administration to put together a plan to address that court decision.
The overall goal then for Indiana is to create the most integrated environment possible for individuals while relying on consumer choice. We realize that some individuals want to stay in nursing facilities or other institutions and that's perfectly okay. The State of Indiana realizes that we need to give you options to allow you to live and to be where you want to live.
So where are we now? Available on the back table we have submitted to Governor O'Bannon our first edition of the plan. It outlines the goals over the next two years that we will have accomplished with the funding that was made available in this biannual budget. We have also submitted three grants to the Centers for Medicare and Medicaid Services, formerly known as the Health Care Finance Administration. Those grants are the Real Choices System Change Grant, the Nursing Facility Transition Grant, and the Self Directed Care. You'll notice that those are all outlined in the Transitions newsletter.
We've also already received two grants from the federal government. The first being a $20,000 grant that was awarded to the Division of Mental Health and Addiction. It will be used to allow for consumer involvement, including identifying and training consumers and family members to participate in the Division of Mental Health and Addictions advisory groups and set hearings, related task forces and planning committees. Focus groups for consumers and family members will also be held. That is just a really exciting start, the fact that we are committed to receiving as much public input and public participation on the plan at this point.
The second grant that we received was a $50,000 starter grant which will allow us to begin work on implementing the first edition of the plan, as well as creating the Governor's Community Choice Commission. Unfortunately, I don't have any specifics to give you today on the commission, but it is important to know that the governor is committed to creating and commissioning to oversee implementation of this plan, to create future editions of the plan, and hopefully to oversee implementation of the three grants that I just mentioned.
So in the coming weeks you'll be hearing more about that, and the next edition of the Transitions newsletter should outline more about that commission.
So where do we want to go next? First we want to get comments on the first edition and that will again be used to create a second edition that will outline where we are with the goals to be set forth in the first edition, and also it will incorporate your feedback, the things that we hear today, the things that we're missing, things that we need to look at. Then that edition will be utilized by the commission as they begin to set their work plan. So the commission will use the second edition and they will use it on recommendations for budgeting for the next biennium, overseeing grant implementation and in looking for additional grant opportunities, both through government and private resources.
Now what are we looking for today? We are looking for your feedback on this plan. Specifically recommendations for programs for filling gaps in the current system and perhaps more importantly, recommendations for programs that would fill in gaps in your community. We recognize that in order to be successful we need to be sure that these are community based efforts and what we think works in Indianapolis may not work in South Bend. So we want to know what will work in your community, and any suggestions you might have from where we go from here. So that's what my charge to you is that you've got a lot of work to do so you're going to have to get busy.
Also if you have any written comments that you would like to submit you can send those to: The Family and Social Services Administration, Attention Linda Church, Office of General Counsel, 402 West Washington Street, Room W451, Indianapolis, Indiana, 46204. Linda's email address, which don't tell her I told you, but it's lchurch@fssa.state.in.us.
VOICE: Do you have the zip again?
HEARING OFFICER BECKER: 46204.
VOICE: What was her name and title again?
HEARING OFFICER BECKER: Linda Church, Office of General Counsel.
Just one more thing for you, if you would like to fax the comments, the fax number is: 317-232-1240. Did everybody get the address or would you like for me to repeat it again?
(No response.)
Great. Well, that's all I have to say so now I'm going to turn the meeting over to you for comments on this plan, things that are missing from this plan, suggestions you might add for additions to the plan. So who would like to start?
I have just a couple of instructions. I would like for you to come up here and the reason is because we have a court reporter and she's taking everything down you say, that way we will have a complete transcript. So if you could come up here, and before you give your testimony, say your name and if it's a crazy spelling, which I know there are none of those up in South Bend, go ahead and spell it out.
Who would like to start? Come on up.
WILLARD PHIPPS
Will this be something that is totally independent of our state CHOICE program that is now in existence; that is definitely under funded. I read in the paper yesterday that we had 1,000 people waiting to get on CHOICE. Would it be something that would help those 1,000 people that can't get on CHOICE maybe for availability in the nursing home?
HEARING OFFICER BECKER: Definitely.
What this plan will do is take existing programs and build upon those. Either by adding things to those programs, asking for additional funding for those programs, or creating new programs to fill in gaps where programs may not help. That is one of the things that we want to look at is the waiting lists that are out there, the people who need to be served and how much funding it would take to serve those people.
So, yes, one of the questions that was raised in Indianapolis yesterday was are we suddenly doing away with the CHOICE program, and I see CHOICE as being one of Indiana's preeminent programs that we would want to build upon, not do away with.
WILLARD PHIPPS: In other words, if I was to suddenly come down with Alzheimer's this program might be something that could help my wife have help to keep me at home?
HEARING OFFICER BECKER: Correct.
Who else would like to speak?
VOICE: Can we put anything on the table, is that what you're saying?
HEARING OFFICER BECKER: Yes. It's your meeting you can say whatever you want to say about anything you want to say. Well, you know, don't talk about transportation because I can't do much about the roads, but I mean you can talk about transportation but not paving highways I guess.
Come on up.
MATT COSTELLO
My name's Matt Costello, C-O-S-T-E-L-L-O.
I'm a social worker with Logans Protective Service Board. I work a lot with people who are very sick and in nursing homes or in some other restrictive settings, like the Fort Wayne State Developmental Center, and some in the community. I have people who are low functioning and high functioning, all the people who have developmental disabilities.
There are a couple of things that I liked about this plan. One was policy direction No. 4 where it talks about strengthening quality assurance and monitoring systems, I think that's good.
I also like that policy direction No. 6 where it talks about training for a direct care staff. I'd like to see something in the field of developmental disabilities similar to what the nursing home field has where people get certified, like nursing homes have certified nursing assistants. I'd like to see some certification for people working in the field of developmental disabilities.
And I was glad to see that this long term problem of people who are in nursing homes, who have mental retardation, who for years -- since even the 1980's -- were required by federal law to be given a choice to move out of nursing homes. That they still, there are still hundreds of people with mental retardation who haven't been given the real choice to move out of nursing homes. So I'm glad that the plan addresses people with mental retardation and are inappropriately placed in nursing homes.
I saw some problems in the plan or gaps. One is that the plan didn't say anything about trying to find appropriate programming or housing for people with developmental disabilities who have gotten in trouble with the law. Neither a regular prison or a regular DB community setting is appropriate for some of these people. They don't fit into group homes and yet if they're in prison they're victimized, and it's kind of a cruel fate for them.
I'd also like to see some attention to the problem of people who have developmental disabilities and also addictions. There's no specific program for people who have both those disabilities. And those people are really suffering without services.
Also we run into a lot of situations where we need emergency placements for people. Even the emergency waiver takes too long to set that up. Something like an emergency safe house would be good. The Center for the Homeless tries to accommodate people with developmental disabilities, but there again it's really hard for them to fit in and know how to work, how to fit them in with the Center for the Homeless.
And then the last thing I'd like to mention is well it's just that there's a lot of folks who have mental retardation or borderline mental retardation but are ruled ineligible for services by the Bureau of Developmental Disabilities and they just cannot live on their own. They don't have any dependents. They need at least some assistance, something like some kind of independent living program, public assistance.
So those are my comments.
HEARING OFFICER BECKER: Thank you.
Who's next?
(Positive response.)
Come on up.
ANITA McCOLLESTER
My name is Anita McCollester. You'll have to excuse me, I have allergies. I'm on the Governor's Commission, the Indiana Commission on Aging. I'm also on the Advisory Counsel of Real Services and the Chairman of the Legislative Community, an agency to aging. My testimony will be based on the commission report. The Indiana Commission on Aging provides the following comments relative to Indiana's comprehensive plan for community integration and support of persons with disabilities dated June 1, 2001.
1. 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.
2. 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.
3. 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.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
PENNY TORMA
My name is Penny Torma, T-O-R-M-A. I'm with FSSA.
All my things are just kind of these ideas all bounced off, so they don't all just build on each other. But it's things I've been thinking as we've been sitting here and things that have been brought to my attention in the last year.
Less restrictive -- we have shut down a lot of institutions in the State. We've put people out into group homes, out into scattered sites where there's two or three individuals being taken care of. I've heard the complaints from neighbors. They call in because they don't know where else to call. Be careful that less restrictive doesn't hurt the neighbors in the community.
Example, there is a person who's out in the community, he's not appropriate. The people next door, they have a teenage girl. He has a crush on her. He sits out on the porch. He watches her. She now will not do the lawn because he's inappropriate with his behavior with her. The people do not keep him in his home. Making him less restrictive is making the neighbors restricted. They're prisoners in their own house. He has come up to them when her boyfriend has come over and he wouldn't let the boyfriend in the car. This is hurting the people in the community, making him less restrictive has hurt them. They feel like they can't speak out because then they're attacking someone who's disabled and that's just not politically correct these days.
So when we're doing this, make sure we take the people in the community also into account. Not that I don't believe in this, I'm just letting you know what has been told to me.
Also when you're going to the less restrictive -- one fear I have with this is in a nursing home many people saw these individuals. If there was abuse someone on another shift saw it. Right now we have only two or three people seeing these people. We've got to have some kind of safe ground for these people so that they don't get abused for years and years and years, and nobody knows it. Some kind of real -- somebody looking out for these people because they can't speak out.
I want to see licensing and funding for assisted living. We don't do enough of that in Medicaid. We do a room and board and what we pay is so low most places don't want to go into it. And right now assisted living, if they don't take our money they really are not licensed and they aren't checked like people think they are. I'm afraid there's going to be abuse there later on.
I told you it was scattered all over.
I'd like to see wage deductions for people in nursing homes. That's something we don't have. We have a couple of people who have spinal cord injuries. They are 30 years old living in a nursing home. They need to be there because they're paraplegics, they can't take care of themselves. They'd like to be on their own but there's a long waiting list. But they want to be out there working and we're taking every penny they have including their tax money and everything. In the nursing home I'd like to see us be able to have wage deductions.
I think Alzheimer's supportive services is lacking in the area. There aren't that many institutions when they get themselves to the point where they're violent to their mate. They need to be put some place more restrictive. Because they're about the same age, you don't want -- I know of a couple and he took a register to his wife, she was all beat up on the arms, but yet she was going, shhhh, and he got very upset at her and he just started walloping her, and I saw what it did. He needed to go into an institution now and there weren't that many for Alzheimer's.
We shouldn't sacrifice care for choice. It's all good and fine to have CHOICE but dealing with the older people I've realized that they don't want to leave there homes. If it becomes dangerous for them to stay there we've got to have something there that says, I'm sorry but you can't stay, you have too many steps in this house, you are going to fall. Here we'll fund you to go to assisted living. That is still less restrictive than a nursing home. But I do think there's got to be somebody who can step in besides just their own choice.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
DAN HARSHMAN
My name is Dan Harshman. I'm the Chief Executive Officer of Logan Community Resources. We provide services and we have people with developmental disabilities.
I'd just like to focus a couple of comments today on the plan, especially related to nursing homes. But let me mention that I think that the broad outline in this plan highlights a lot of good intent and a lot of good areas that need concern in the broad directions of the plan especially about advocating for CHOICE and reform choice and trying to build on it.
The concern overall I have of using our own resources, and our commitment to provide the resources both administrative and at the state level, and in terms of the community capacity at the local level to really develop the supports and the services that the people need, I think that's generally what the plan is lacking is kind of an administrative leadership, as well as legislative leadership to really push to the full implementation of this broad outline with the obvious resources that will be needed.
The nursing home issue is a particular interest to us, in terms of people with developmental disabilities. I'm glad to see that there's a new transition, a nursing home transition project. This could be a real boost to the effort which starts with identification of people in nursing homes and what their needs are. I would think that would lead to really a different version of reform choice. We think that's been sorely lacking in Indiana. There are close to 2,000 residents in nursing homes who have developmental disabilities and a large percentage of them, we believe, need to be offered a real choice to live in a community based setting.
I would try to comment on the concern raised by the lady who spoke before me about perhaps one condition that can get this done. There are certainly the commonalities of funding source and certain issues between people with disabilities that are commonly thought of as disabilities as different from people who are elderly and who have disabilities. I think it's -- I want to reiterate, I think the support -- the comment was made that oftentimes people who are elderly and have disabilities cannot even associate with this standard kind of definition of other physical disabilities. We might consider really two commissions. Understand where they need to be coordinated but really appreciate the different populations that we're trying to serve here and the different needs of these populations. While putting this all together in every scheme, from planning implementation, continues to create some real issues.
Finally, I would really reiterate again after the resources I think the real issue now with our system is two things; building capacity to actually serve, and support people and then the quality assurance system that needs to go with that for the long term. We really need to be more sophisticated in our implementation and quality assurance.
And finally, I would reiterate points about not only helping bring people out of institutional settings, but for people with developmental disabilities that means preventing institutionalization as much as possible. A common issue with people who are elderly to prevent institutionalization and especially into nursing homes or other state facilities. We're finding a whole range of people that are growing that tend to be considered ineligible for Medicaid that are left in limbo. As mentioned earlier people get caught in the criminal justice system. But we find other people who are either borderline, if you will, or what's called higher functioning people with disabilities and they're now being deemed ineligible and they have nowhere to turn to the system. And we're pretty lucky there's South Bend Replacement Center that was able to help take a wide range of people with pretty unique needs that we need to reconsider preventing the institutionalization of all individuals.
We would finally support the effort that's mentioned in the nursing home transition budget about partnerships. But we would try to work harder to be a partner in this effort with the state and other local providers and other interest groups.
Thank you.
HEARING OFFICER BECKER: Who's next?
EMILY HARTZER
I would like to ask a question. My name's Emily Hartzer, H-A-R-T-Z-E-R. I wondered if you received any feedback from the nursing home lobby that this will directly affect there efforts to increase their already decreasing subsidies?
HEARING OFFICER BECKER: Emily, you're going to make me break the one rule I'm not supposed to break and that is to answer questions, but, this is just between us. Actually, yes. When we submitted the grant for the nursing facility transition grant, we did receive letters of support from the nursing home industry. They are obviously and rightfully so concerned about their future, but at the same time I think that they recognize that this is the way we're heading and so they support our grant application and our program, our transition program, to get people out of nursing facilities.
They've been working with us and we have developed this plan. We've had discussions with them several times, and they're very supportive of what we're doing with this plan. Now, that doesn't mean that it's all taken care of and everybody is going to live in group homes, and we're just going to shut down all the nursing homes, but we are working together.
Who's next?
(Positive response.)
Come on up.
WILLIARD PHIPPS
I'm going to say a few words. I'm Willard Phipps, again. I would like to put a personal touch on this, something that's real dear to my heart.
First of all I have had heart attacks, by-pass, knee surgery, stroke, you name it. And I stand here living life like an old buzz saw, put them all back together each time. But I have some friends who couldn't do this. My friend, Corrie, who is now in a care facility. Sure she's 88 years old but she was living like a buzz saw until about two or three years ago and she fell in her home and wound up in the nursing home and now she has bigger problems.
Her daughter called me the other day and said would her Allied, whatever we are now, carry through with her heart medicine? Yes, it will carry through with her medicine but will the care facility give her her medicine or will they insist on the $4.00 pill or $6.00 pill available? I said I'll find that out and I haven't been able to find out.
My buddy, Vic, played Euchre with us when I first retired 15 years ago. All through the years he played, and one day Vic didn't show up, had a stroke. I talked to his wife Jo on occasions, they already owned everything, Vic and his wife. The nursing home has taken the whole bit. Jo can keep the home. She can keep her car. The nursing home has taken every bit of their finances, and I'm sure they had done like us, put some money away.
Now I'll tell you about my friend, Mr. Sauder, who's my long time AARP friend. He had a stroke and Mrs. Sauder said you're not putting him in a nursing home, and they insisted, and she brought him home and she's still taking care of him. But she's 80 years old, 81, 82 now. How long can she do this, or will she die first?
We need all these programs. We've got another ten million for two years, 10 million a year for two years, 20 million in the CHOICE program, 20,000 people waiting to get CHOICE. So this little million is a drop in the bucket for what we need, but it is a start, it's something. I hope this program goes and I'm here to support it.
And I guess that's all I have to say.
HEARING OFFICER BECKER: Thank you. Who's next?
GINNY NAWROCKI
My name is Ginny Nawrocki, and that's spelled N-A-W-R-O-C-K-I. I am a member and support group leader for the National Alliance for the Mentally Ill of St. Joseph's County. I also am an educator and trainer for family to family programs for family members of the National Alliance for the Mentally Ill people with family members who have mental illness.
I just learned about this Olmstead thing a couple of days ago so I really haven't had time to really peruse it and review it entirely. But from the general consensus I feel that programs of this kind are needed, but I have also heard so many times that there's -- as a mentally ill -- first of all I want to say that with the mentally ill it's a little bit different than the normal disabled individual or elderly disabled person because so many times the mentally ill are not aware of their illnesses and they do not take their medication when they're outside of an institution, and this becomes a major problem.
My big concern, my personal big concern, is about the lack of anything being said about housing. I know personally I have had a family member that was mentally ill. For over 40 years I spent my entire adult life taking care of that individual, having him hospitalized over and over again. Having him released from the institution because he needed to be in a less restrictive environment.
My parents before me, who both died because of this, I really believe, spent the last 13 years of their life trying to find help for him, institutionalization, or take care of him themselves.
I personally have tried him in community halfway houses, group homes, everything and nothing worked. The last ten years of his life I had him in a nursing home which is not an option anymore, I mean for mentally ill people. I had to fight to keep him there. I had to go to court to keep him there because I was working, I couldn't take care of him at home.
I did take care of him in the nursing home. I went every single evening for ten years. Every night to take him his food so that he would eat, to give him his shower, to make his bed, to do the things that the people in the nursing home were supposed to do but didn't do. But I had nowhere else to put him, there were no other options, there's no options in the community regarding assisted living programs or even supervised housing.
Now my brother was probably a little bit more on the extreme side for mental illness people. Many of them probably could live in the community and very well if they had assisted living or supervised homes, or could be ensured that they were taking their medications and their nourishment and having their food. Many of them can't even prepare their own meals. So this is a major issue for me; their housing, their assisted living and their supervised homes.
So I don't know what's in the plan, because as I've said I haven't had a chance to review it, but maybe there is some aspect in there, but if there is not, we really need to look at that as well and find something for that type of thing. It says that this plan is supposed to deinstitutionalize people while at the same time setting up plans to help them. Let's do the planning first, get the funding first and then work on the deinstitutionalization. Let's put the horse before the cart instead of how it's usually done.
For NAMI, and I speak for NAMI here, we are really in favor of programs of trying to get people to be able to live independently, but we want to see that this program that we're working on here is phased in throughout the state. We want to know what phase one will be, phase two, phase three. We want to have teams working statewide not just in specific areas. So many times there are things geared centrally in Indianapolis or Southern Indiana. Very rarely do we get anything way up here in the northern part of the state.
We need to have a plan that includes plans for the at-risk population, persons at risk of being hospitalized or incarcerated if their treatment plan fails them. This means that, as someone else had mentioned, we need long-term plans. We don't need just a plan to save somebody for this month, or this next 60 days or this next year, we need a long-term plan for these people. This needs to be looked at thoroughly.
Also, we'd like to have in the planning budget -- if we don't have the budget and the money or get the grants for all of this, it's going to fail. So we need to really look at that.
Also the other last thing, we want to see the deadlines for each part of the plan and we want an accountable person for each part of this plan, somebody that's held accountable for each aspect of this. And for my sake please look at the housing and how these people will live in the communities. I just don't think that shelters is an answer, or jails, or anything like that. And that's what happens to the mentally ill, and this may be different from the regular normal disabled person.
Thank you.
HEARING OFFICER BECKER: Who's next?
PEGGY UNWIN
Hi. My name is Peggy Unwin, U-N-W-I-N. I'm from Riverview Adult Day Center in the Elkhart area.
I'd like just to speak up a little bit for adult day services. The at-risk population that Ginny was speaking about preventing problems, the first part of having someone be with other people and be monitored during the day, it's a huge help, as you know, for caregivers and respite. We have integrated mentally ill persons with our group, it's a small group, and the program is doing a wonderful job for us here in Elkhart and so forth. The people are living in their apartments through that program and we have several that are able to come to the adult day care services that way, which works out well.
One problem we do have is when somebody becomes inappropriate for the group with violent or unpredictable behavior, there is a lack of -- or our Alzheimer's unit that will take that type or that level of care and we found that to be a real difficult time for people.
Another thing that I find with our work is that we have to deny people. We have no reserves, and I can't see that, denying people admission to us because of lack of funds. These people are not always people who qualify for Medicaid and so those people that are on a fixed income still cannot afford the $32.50 or $36 a day for adult day services. So I just wanted to mention that and it would be -- we usually try to keep the scholarship fund or something available but even being rent free and utility free in the church that we're located in we still run on a deficit. We need more funding to help those people that may not be able to get a Medicaid Waiver. And then when I ask them to call those services to talk about things and they get case management and they hear about the waiting list, and especially for the ones in their homes, that I am speaking for right now, they're discharged.
And I also agree with the man from Logan as far as the titling of the program and identifying with developmentally disabled persons. I had an 82 year old woman at my house last night that had come to a meeting a couple of times and she said, well, I was sitting there with all these, you know, mentally ill people and she has Alzheimer, but see the identification is still a separation.
Thank you.
HEARING OFFICER BECKER: Who's next?
KEVIN GRIFFITH
My name is Kevin Griffith, and I'm a case manager and one of the owners of Indiana Case Management Services. We provide Medicaid Waiver case management to people with developmental disabilities.
And a couple of points that I'd like to go over is: One, I'm very excited to see the plan in operation and see leadership in the State to get us together and identify issues that I think is first and foremost a very good thing.
The first area that I'd like to talk about are the standards of practice and training for the direct service of the staff that are working at homes, working very hard with people. I'm very glad to see the rate increases to go specifically for that need. A lot of the staff people that are working with the people that we serve work two and three jobs just to make ends meet. And if we are looking at how to reimburse them better then I think we'll get better qualified staff and people with longevity maybe, more long term; so the rate increase is a great thing.
What I would like to see however is that practice of standard to go beyond the typical one week or two week orientation that staff goes through an agency, that there's ongoing training, individualized for the people that we serve. We ask a lot of direct service workers. We ask them to help out in a community capacity. We ask them to work with their daily living skills, to help people find peer jobs, to become better neighbors. That's a tall order. And I think that we have to have ongoing training as a standard for providers of that training, and is implemented not only for basic orientation but as an ongoing basis.
I've been working with Medicaid Waiver now for about ten years. At the company we serve over 200 people statewide, and most people are good neighbors, most people are doing very well in the community, very happy and very excited about this. But the training for staff in order to help people fulfill their dream needs to be there.
The second area that concerns me is to go beyond the good job that we've done educationally for parents. I think that we've gone very far to reach out to parents and children. I think that they're much more aware of supports and services available to them. However, on a daily basis I still receive calls from parents who are over the age of 70 who still have children at home who have never received services before. I know that we're aware that they're out there.
I know that we're aware that that list exists, but I think that we've got to identify within this plan how we are going to further outreach programs to parents. They're worried. They're afraid of what's going to happen. They've been on their own for all these years. They have children that are 40 or 50 years old as adults and they're worried of what's going to happen when they're not here any more. So outreach and education to those parents is, I think, very important.
The services, as was mentioned, developing community capacity, and there are a couple of rules that I think that we need to look at. One is opportunities for the people to be served. Oftentimes where we don't have the outlets, where we don't have the means to help these people is in an emergency crisis situation. I think that we have to identify what resources would be available in the community to better meet the needs of the people we serve in that area.
Educationally, I'm finding, surprisingly I think, that for children leaving high school that a lot of students that we're serving have nowhere to go in school, no resources either vocationally or whatever type of day service options the students might need once they graduate aren't there and a lot of times the parents come to me and say, you know I've got an 18 year old who just graduated from high school. I have to work myself. Where are they going to go all day? There's a huge waiting list for that.
Transportation is one of the things that I was happy to see within the plan that we've identified more resources for providers for transportation, because transportation is something that we need to make sure that the people are reimbursed for, the providers are reimbursed for, so that people can get out in the community and be participating in all of the activities that we've identified for them.
Lastly, the accountability and the standards that are in the plan are welcomed. Waiver programs, I think, for all its efforts the last couple of years is in desperate need of more accountability. The concern that I see in some of the standards that are in place is that we aren't necessarily looking at community based standards but we're looking at some of the old institutional standards.
And I think that we need to do our best to individualize the population of people that we're serving. I've heard several times today that seniors probably don't want to be lumped in with a group of people with developmental disabilities. We need to look at how we need to individualize the standard and not an institutional standard that doesn't meet specific needs for specific populations of people.
Overall I think that earlier one of the comments about neighbors and people being acclimated to their community is -- I can tell you from experience that most people with mental disabilities are doing very very well in the community, are very good neighbors, are very welcome, and the Waiver program works.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
SANDIE GARDNER
I'm Sandie Gardner. I'm a home care supervisor for Nurse Finders, which we do a lot of home care nursing.
A couple of problems that I've run into are: I have a man in this home, he's over 80, he has a wife who has Alzheimer's, and I called Real Services and I knew what I was going to run into, that it would be two to six weeks before a case manager even got out to see this man and a good year to year and a half on the waiting list, and I know that it's been talked about, getting off the waiting list sooner. You know in a year in a half he'll probably end up putting her in a nursing home or whatever he does, he's probably paying for it now, which will extremely limit his funds and he's on a limited income himself.
The other problem that we have is I have children that are disabled for whatever reason and the services with their parents in respite is so limited that they're lucky to get away for four hours at a time to just have a breather. And the comments that they're tired of hearing is you elected to have this child, you elected to take this child home, so deal with it. That's not what these parents need to hear. They need to have support. They need to have something available for the support, and if this program does that it's wonderful, but it's long, long past due I think.
Thank you.
HEARING OFFICER BECKER: Thank you. Who else would like to speak?
TOM DUCKWORTH
My name is Tom Duckworth, D-U-C-K-W-O-R-T-H. I just learned about this program recently. I haven't had time to do my homework on it, but I'm here and very supportive for the National Alliance of the Mentally Ill, and I just wanted to reiterate and echo the sentiments of Ginny Narwocki who really could speak more eloquently about this whole program than I can, but I'm here because we have a son who just in the last few years was diagnosed schizophrenic. To live with someone who they don't know they're ill, they don't know that they need to take medication, and they may not take it on time or even know that they're living conditions may be substandard and not what's really fit to live in.
One thing that we realized early on when he was in high school we could have used more support and more education or more services through the schools. Then maybe they would have identified him as someone who's potentially, you know, a danger for himself or somebody else. If this could have been identified much earlier maybe we would have been able to survive all the years much easier than we were able to.
Something that we're quite aware of is that there is not adequate housing and support systems for people who suffer from severe mental illness. They cannot speak for themselves, and that's evident from the people who are not here, who cannot properly sit in this room and speak for themselves.
On behalf of our son who has been given encouragement to the extent that he has worked a part-time job, but it's not the type of job that would give him the kind of self esteem that he would like to have or be able to associate in groups of people. It's a minimal job, delivering pizza, and it just gives him a little bit of pocket change, and at times he has to take off. He cannot handle money when he's not living at home with us.
I fear what would happen to him and I think I can speak for many parents who -- and mentally ill people may not have someone that checks up on them every day and see that they're taking their medication, that they're fending for themselves and not degenerating to impossible living conditions, places that are doghouses and different places that you wouldn't want a pet or a dog to live in. And at the time we didn't know he was as ill as he was. I mean as I said, oftentimes they don't know they're mentally ill and they won't even accept the services that are sometimes there. They don't know how to reach out for themselves.
And many times they end up crossing paths with the law enforcement. Law enforcement does not have adequate training to handle these people at times and I would just ask that there be more support services in place and training for law enforcement or possibly community group centers that are trained maybe outside of law enforcement to handle these kinds of crises. That when a parent or a neighbor calls up that needs help or assistance to get these people some help, that they're better trained on approaching people on this.
There are many documented cases of people who have died needlessly because of poorly trained law enforcement, not to their own detriment, but law enforcement is trained to do one type of job and that's not handling the mentally ill; though there has been some effort to continue support, continue training and education.
Again I just wanted to reiterate everything that Ginny Nawrocki had mentioned earlier about this program going into effect that there is documentation and follow up, that it's phased in, and again that it's phased in across the state and not just in a small area. That people are not being institutionalized at will, that there are support services in Indiana that will attract people and be there for them when they are in need. That there are services to support them and to check up on them when they're in trouble.
I guess that's all I wanted to say.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
BARB BAKER
I'm Barb Baker. I'm with the Brain Injury Support Network. I'm also a primary caregiver for my 27-year-old son who has brain injury.
I agree with the gentleman that spoke right before me. Right at this time I have one gentleman who is at risk of a housing issue. He has a family who he can live with, but he prefers not to.
I have a question for you. How is the Governor's Association of Indiana in reference to the needs assessments, the parts that they've published?
HEARING OFFICER BECKER: I don't know the answer to that. I do know that the commission, the governor's commission once it's established will be gathering information from a lot of different sources and that's a really good one to bring up. So if it hasn't been looked at we definitely will look at it.
BARB BAKER
The other thing is transportation is a big issue. I transport my son every single day. He's sick today. He has a medical issue. This afternoon I have to make a doctor's appointment. Transportation is an issue.
He works in a sheltered workshop with the mentally retarded. He is very aware of his deficiency, they explained, so they feel like he couldn't work. I just heard about this two nights ago so I'm not really prepared. He is at risk medically. He goes to work in the morning. Goes home for lunch. He still needs exercise. I'd like to see something coming to the home, like for instance that mobile medical unit, that sounded great to me. We could use that.
Thank you.
HEARING OFFICER BECKER: Thank you. Who else would like to speak?
DOROTHY KRUEGER
My name is Dorothy Krueger. I'm a social worker with Elkhart Home Care for the past ten years. We're the largest provider of home care in Elkhart County. We serve the elderly, developmentally disabled, children with disabilities, TBI, brain injury children and adults, low income adults who are disabled, and the mentally ill.
I, too, don't have anything organized. I have miscellaneous thoughts on servicing these individuals. When we're talking about assisted living I want to make a point that I'm sure the State is aware that there is kind of a gap in the Indiana law that allows assisted living not to be licensed, that's certainly an oversight. I certainly hope that when we're talking about having these individual going into assisted living they only go in licensed facilities; that is a true oversight in government. That these newer ones that have popped up, that I have personal experience with, and we go into and I will simply say, please let us use the licensed assisted living facilities.
Also when we're talking about eligibility, yes, many people do fall through the cracks because eligibility criteria is so strict that their incomes or resources that they have worked so hard for must be totally depleted or divided out by Medicaid, let's please work for more eligibility for more individuals.
Also when you're servicing these individuals in whichever environment they're in, allow them more choice of whatever services they're going receive. The CHOICE program and Waiver program can offer these choices, and let's keep that up. Not everybody needs the same thing and that would probably be a recurrent theme in what I'm talking about. We have many different populations addressed which do not have exactly the same needs.
Also a lot of these persons with disabilities especially developmental disabilities as has already been mentioned they're aging in place, and as we say, I'm counting them all the time, they're in their 40s and 50s and up, being cared for by parents who have not had services before, and it's also very difficult to expect services and count on them for a long time. And sometimes as we're trying to talk to services, sometimes, it isn't always presented in a method that encourages the individual to expect the service, it's like, here it is, take it or leave it. And they've not necessarily been educated into accepting this. And I would go back to our society, our culture, perhaps our mid-west ethics does not necessarily teach us to accept certain rules.
Perhaps we could have, as was also mentioned, an information and education program for adult day care, assisted living, alternate environment. You encounter people all the time, I want to stay at home and that's it. They've blocked out any other options. Perhaps that could be part of the information, education program. I also support the State with the guardianship program. We do not have it in our county, it's greatly needed. The sooner the better, would be wonderful.
Also there are many experts speaking today, I hope that as these programs go forward you utilize the experts in the various fields. Because once again I'm going to say that the DD population, MI population, elderly population are not exactly alike, they don't have all the same needs. The at risk in most populations are not the same. And like I had said, if I had heard of this earlier I could have been a little more organized, but like I said we see this type of need on a daily basis and oftentimes services are not there, and when the services are there the conceptualization of accepting Medicaid, it's very difficult for some people, that perhaps we do really need to work on fostering an acceptance.
The people that are here know about it, but so many people do not, and then even accepting it becomes very difficult, even if they're eligible.
Thank you.
HEARING OFFICER BECKER: Thank you. Who's next?
PAUL CURRY
My name is Paul Curry, C-U-R-R-Y. I am the Program Director of at Madison Center.
I'm here as a person who works with the mentally ill and I have heard some comments from NAMI and I really appreciate those comments.
I just want to say and I think I'm in the majority of people here who are late in getting to know about these matters and what's going on, but I've heard about older adults, developmental disabilities, mentally ill, brain injury, and I'm sure there's others, this is a huge, huge undertaking. My thought on it is this is just one slice of the pie. But I do see people who work who have mental illness. I work with them and I hear the plight and the hardship of families who have children, or loved ones who are mentally ill. We try to do what we can with the community health centers. I feel good about what we've done at the Madison Health Center, I feel good about the work we do. And are we perfect? No, we're not, though we try.
I believe very strongly in the reintegration of individuals into the community. I believe -- I'm very heartened by hearing about Medicaid lines, I think that's a step in the right direction for people with disabilities, to give them a sense of normalcy and a sense of achievement. There are many people who I work with who say it's too hard, I've gotten my Medicaid, I've gotten my disability, and now you want me to risk this.
So we see some people who may -- the community may say, you know, they're lazy or they don't want to work. Well, the people do want to work and we have to reduce the barriers for them.
I'm going to ramble here for a minute because I've got so many thoughts in my head. But I'm also I guess I'm to the point of reintegration into the community. I also think we have to have a continuum of care and that there are people who do need services where they are restricted from the community for a length of time. I'm working with a young lady now who just came back from Logansport and she is extremely difficult to work with, extremely difficult, I mean there's a sense of denial of her problem, a sense of denial of the need for treatment. Three months at Logansport with structure and support, she's back, she's been on her medications for three months and she's workable.
We have a lot of people who we reach and because of the nature of this illness, they deny the illness. They deny their need for medication. They deny the need for services and it gets to be extremely tough. So we need the integration, yes, definitely. We need to have the people feel a part of the community. But let's not lose sight of it.
There's some people who the community -- because they are so symptomatic, they are so -- they have so many problems. One issue especially with the mentally ill, and I'm thinking about a population that we're not talking about, and that's drugs and alcohol. You put not taking their medication and there's people who use drugs and medications to self-medicate and then they put themselves beyond the scope of being able to be handled and served. So we do need a long level of continuum of care. The mentally ill have many barriers to overcome.
I think we need more case management. We also -- one thing we need is we need training for case managers. Oftentimes it's hard to find people who can -- they make more money maybe waiting tables at Arby's or someplace, and then they come as case managers and you put them into service and expect them to be able to understand the needs of people with disabilities. We need to upgrade that issue. I work with some people who, you know, we need them, we need bodies, but we also need trained individuals who have some understanding and want to be there and want to help the person.
I'm sure I have other things that I would like to say or need to say but I look at this and this is a huge, huge undertaking and I would just like to say that. I think the mentally ill need to be understood, it's a special population, and I'm sure all these are special populations. But we're talking huge sums of money to be able to make this work, to allow people to have a semblance of a positive lifestyle.
Thank you.
HEARING OFFICER BECKER: Who's next? Anyone else?
(Positive response.)
Yes, come on up.
PAUL REESE
I am Paul Reese. I am encouraged and enthused by the State moving in a direction of addressing some of these problems. What we are really addressing is the quality of life in our communities and as the speaker immediately before me mentioned it is going to take a considerable amount of money to do the job right. And in doing the job right we also need -- this is a very complex problem that we are addressing here. There are a variety of areas that must be examined so that we serve them in the most efficient and practical way.
But it's important that this program be studied. We must, of course, get it throughout the entire State, but if you try to implement this program statewide right away, you're going to find that things won't work very well and you'll have spent your money that could be used in better ways.
I can relate to the CHOICE program and as you probably remember that was enacted back in 1987 and it's very near and dear to me because I served in the legislature and worked on that CHOICE program in detail. We realized that you just couldn't put the CHOICE program into operation throughout the state and the legislature arranged to start pilot programs in certain areas so we could get some experience and find out what the problems were and how to address them. It has worked very well.
The only problem now is that we have insufficient funding to really make the program work with this plan. The reason for that is simply that the nursing home lobby doesn't want to give up their funds. It's sort of ridiculous, we're spending in excess of $870 million a year for the nursing homes and we're spending about $90 million a year on the CHOICE program. And the CHOICE program just has difficulty getting the proper increases and if it did it certainly would eliminate a lot of problems. It would also start diminishing the population in the nursing home. People want to stay in their homes as long as they can. I could tell you all kinds of stories of what the implications of the CHOICE program has caused.
But this new program that is being proposed, I support, but I want to urge two things; one, that it be very carefully studied in the initial stages so that they know how to make it work effectively in the communities and to address the various needs of the population that have been presented this morning.
Secondly, that when it is really implemented that there be a commitment by the legislature and the governor to properly fund it. If it isn't going to be funded, we're just in for a lot of disappointments and problems. The CHOICE program should be funded fully as well. And that may mean that the governor is going to have to decide to take some money out of the rainy day funds in order to make these funds available, but that's really the need for the State and that's what the rainy day fund is for.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
ROSALIE SMITH
My name is Rosalie Smith. And I just found out about this on my email last night. I am a family member of a person with mental illness and I do belong to the National Alliance of the Mentally Ill.
I wanted to reiterate and commend Ginny and the two gentlemen that spoke earlier, I'm really nervous, to be very honest I'm shaking. But I think that the gentleman had some wonderful comments about the fact that there are a lot of mentally ill patients out there that also need integration into the community is wonderful, but there are also those who are so severely mentally ill that have a lot of other diagnoses, especially addiction, that I don't feel are being properly met. I think there has to be something with a better crisis intervention when these things happen.
He mentioned that the police department and those people that have to deal with those crises and interventions are not properly trained and that is so true.
I have a sister with a very very severe mental illness who is a violent person at times, who does not take her medication, who just totally at times is uncontrollable. I drove two times a day to give her her medication because some case workers had not been able to even handle the problem. She is living in I believe substandard housing and that is one of my biggest things, is the group home and places that they do send these people, I'm sorry, they are just not adequate. They need to be places where we can at least feel safe to go, and so should the case managers when they need to.
These things need to be dealt with, and I know it takes a lot of funding and I know it takes a lot of planning but I think that eventually it will work with our community. Our community is being underserved and that needs to be changed and how I don't know, but I think more effort needs to be put into that.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak? Anyone else? One last chance?
(No response.)
Well, in closing on behalf of Secretary John Hamilton and Governor Frank O'Bannon I would like to thank you for your participation today. While I can't make any promises that your comments will appear verbatim in the next edition of the report, I think that we've gotten a lot of really good feedback today.
There are areas that there are gaps that need to be addressed. One of the facts that maybe the aging community is not mentioned as much as they should be in the report. The fact that we need to be sure and consider the mentally ill and the special challenges that they face. Those are just a few of the many examples that I learned today and I really appreciate everyone getting up here and speaking. It's been a good morning and I look forward to having the transcript when we go back.
But, again, I encourage you to submit written comments. If anybody needs the address just let me know. You can send them, you can fax them, you can email those. We can provide you with any comments after the meeting. Just please, please keep us informed with what you think about what we're doing. And if you haven't already done so, please be sure to sign in on your way out that way you'll be on our mailing list and you'll receive the next edition of the plan, and you'll receive the Transitions newsletters and all of those things.
So, again, thank you very much.
(Hearing ended at 10:45 a.m., August 21, 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 21st 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 21st day of September, 2001.
_________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires: January 27, 2009
