Transcript of Public Hearing South Bend
BEFORE THE
INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
OLMSTEAD PLAN
DRAFT PLAN FOR COMMUNITY INTEGRATION FOR PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
PETER SYBINSKY, HEARING OFFICER
CONFERENCE ROOM
CENTER FOR THE HOMELESS
813 SOUTH MICHIGAN STREET
SOUTH BEND, INDIANA
APRIL 24, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Sybinsky
Public Comments:
Lester Fox
Anita McCollister
Sara Huslow
Peter O'Kasio
Dennis Bevel
Tom Seevers
Roger Voelker
Bill Jack
Ryan Straskowski
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: I'm Pete Sybinsky. I'm Deputy Secretary of Family and Social Services. I'm here today to conduct our public meeting on community integration and the administration's draft plan for providing community integration to all those in need and who can benefit and who want to live in the community.
I'd like to first ask is there anyone here who needs interpreter services? Tenille here is with us to help with that, but there's no sense in her doing her work if no one is going to be needing that. So if anyone needs interpreter services, please raise your hand?
(No response.)
Tenille, you can have a break.
I'd like to point out some available materials. The draft plan is available in the back of the room in three versions, one is in braille. We also have it on diskettes if someone has a computer and wants to use that. We also have the written plan as well as brochures which outline the key principles, the policy direction in the plan which are basically the key to the whole plan, and they are in the back of the room.
I'd like to also note that while we're here to provide a very brief presentation, the emphasis of this meeting is to get input from you, the community, and to get your thoughts and your ideas about the plan.
I'm not the only one who is here to listen and I want to introduce a few staff from central office, as well as some of our other staff from here in South Bend who are here to listen as well.
Jackie Pittman is the Deputy Director of the Division of Disability, Aging and Rehabilitative Services.
Carol Warner is with our Bureau of Aging and In-Home Services. David is our South Bend Voc-Rehab Supervisor and we have Judy and Karen from our Office of Community Planning.
I want to thank the special efforts of David Sisk, who is the St. Joseph's County Step Ahead Coordinator, and he is joined by Carrie Lawson, who is our Elkhart Step Ahead Coordinator.
And of course I do want to also recognize Ms. Collins who is here from our St. Joseph County Office of Family and Children, and the Office of Family and Children has been providing great support services to us across the state, and I want to thank you very much for being here and helping out.
I also want to thank our partners in the community who have actually hosted these events, and we've been working with a series of groups, a lot of whom are independent living centers, although we do not have one in South Bend.
The Center for the Homeless has stepped in working with David to provide us this wonderful facility, and we really appreciate your help, Beth, and we appreciate the center's help here.
I'd also like to recognize someone who just came in from the Division of Mental Health, that's Janet, who's the Director of the Division of Mental Health has joined us here today in South Bend.
Just to give sort of an overview of what we're going to be doing today, I'll be doing a brief presentation and then we'll be taking your input. Erin here is available and she will be taking down all that you have to say and then we'll adjourn the meeting.
So if I could I'd like to begin by covering a few points and provide some background for the draft plan and tell you how it was put together, and then the meeting is yours.
I'll just go with this and hope that we can talk through it. Community integration of persons with disabilities has been an important national trend. It began in the 1960's and has increased in importance especially since the passage of the Americans with Disabilities Act by the US Congress in 1990, which was about 10 years ago that the ADA was passed. Various states have proceeded in various ways to realize the penance of the Americans with Disabilities Act.
Indiana itself is in the midst of change. In 1992 Central State Hospital was closed. It was the first big institutional closure in Indiana's history and looking at Central State as kind of a key point, because it really began in a real way to move to community integration in Indiana.
In 1997 and 1998 two state developmental centers, New Castle and Northern Indiana both closed and the folks who lived there were moved into community living. This started the trend, started the activity for persons with developmental disabilities. Large scale across the board since then actions have happened to bring people into community integration.
In our mental health programs we have moved people out into the community so that they're actually 500 fewer beds in our institutions because people are living in the community more successfully. There's 74,000 people who are being treated in the community through our mental health programs.
There's 700 fewer persons in institutions in our developmental disabilities program, and 4400 total people receiving community services in their own homes and the community.
We've tried in Indiana to use various funding mechanisms to pay for this. Medicaid waivers and Medicaid funding has been very critical to this effort. Very recently we completed two new Medicaid waivers, one for assisted living and another for adult foster care to broaden the array of option that can help people to move into community living or stay in the community as opposed to going into an institution.
In 1999 the legislature appropriated $39 million to assist 1300 people at risk of going into institutions to stay in the community and have community life. The mental health division has had a special effort to try to reach even the toughest persons to be institutionalized, long-term patients, and has moved 23 patients out of the hospitals who were in there for eight, ten, twelve or more years, and now they're living in the community.
But this is just the beginning. We all know that's there much more to do. An awful lot begins with planning. Governor O'Bannon executive's order issued last fall made it very clear that he wants the state to build on what it's done already, but thoroughly to involve elderly and persons with disabilities throughout the process of planning a new system. One that will provide community integration for everyone who can benefit from it.
He also wants us to assess the state's compliance with the Supreme Court's Olmstead decision and ensure that we are going to be moving forward in the direction as the state is certainly legally required to but also to continue the good work and the good activity that has been going on already.
We've gone out already to get consumer input. We've done everything we could to get input from consumers, families, advocates and providers. In November we went out and had three public meetings across the state to get information, to get input on our planning process, on how we plan to do this.
Then in January and February of this year we called together three subcommittees. One appointed to help us with mental health issues, one with developmental disabilities issues, one with issues for persons who are elderly or physically disabled. And these subcommittees met and gave us quite a lot of direct input and feedback that have already gotten into this plan.
We also called together focus groups, consumers, families, advocates, providers from across the state to get their input, even people beyond these subcommittees and interviewed a good number of folks to get their input as well. So we've done a lot of spade work, we hope, to gather information and to gather feelings so that we could put this set of directions together.
Now we're at the standpoint of where we want to run those up the flag pole and get the public's input. This is one 12 meetings that we're going to be holding across the state to gauge people's ideas and reactions to what we've put down. In June we will submit our final report to the Governor and that report will basically send to him our recommendations on what we should be doing from now on.
This plan is not meant to be a detailed focus on specifics. It is supposed to be a road map with system goals we can work on together and ways we can work together and directions we can go together to better serve persons with disabilities and the elderly.
I think the focus that we've gotten from a lot of the input already is that we need to really emphasize our efforts to assist consumers and their families in making choices about their care and particularly care in the community.
While the emphasis is community-based care, we do have to take care of people who are in institutions as well. Their needs are not going to be lost or overlooked in all of this.
There are basically six policy directions, and I'm going to go just very lightly over them because you have them in the brochures, you've looked at them in the plan.
First of all increasing consumer choice is a very, very high priority so that people across the state whether they're in an urban area or a rural area will have choices that are meaningful to them about service, the location they take the service in and who gives them the service.
The second policy direction is to improve access to information and assistance. We want to emphasize informed choice. That unless people know what the options are there won't be any informed aspect and there won't be any choice aspect. So we really have to do a better job at informing people of what's available and how they can access those services.
Third we need to support an informal network of families, friends, neighbors and communities in general helping them to take care of people in their charge. The informal caregiver network is such an important one and so many people have testified about their personal experience that they really need help. This is a key area where we really need to focus.
The fourth direction is to strengthen quality assurance, complaint systems and advocacy efforts. We need to have a quality system. We need to make sure that people are getting the services that they need in a respectful and complete manner. And we also have to have ways, if they aren't getting those services that they can complain to us and let us know. So that we can rectify the matter and we need to do better in that.
The fifth direction is to increase our capacity for high quality care. We've heard many, many statements from across the state from varieties of people about the additional services that are needed and the things we have to do to strengthen our service delivery system.
The final policy direction is to create a coordinated work force development system. Again we've heard from all over the state that there aren't enough workers, that there isn't enough training, there isn't enough in the way of people to provide the services that are needed, and sometimes even those that are funded.
That's the overview of what we've done and what we've said. It's now time for us to listen. We are going to use this information and take it back and use it to improve our plan.
Letters, written comments and e-mails can be forwarded to us with testimony or comments up until April 27, 2001. We're going to read and look at and work with every comment that is made.
If you don't feel comfortable at standing up and saying something today, please feel free to write it down.
I'm now going to take my seat, and give you all a chance now to speak and say what you want to say in terms of your reactions to this plan and your thoughts about what we need to do.
It will be an open floor and I'll call on whoever raises their hand. Yes.
LESTER J. FOX
I'm Lester J. Fox, President and Chief Executive Officer of Real Services in North Central Indiana.
The current administration can be justly proud, in my opinion, of the national recognition that Indiana's current administration has received for its in-home services program.
In addition, Indiana has been recognized on the federal level for its single point of entry system for its in-home services program. The system is based on a network of trained case managers who act as gatekeepers for the single entry point. One assessment tool is used for all programs including CHOICE, Older Americans Act, Social Services Block Grant, and Medicaid waivers.
This service system is not only socially minded in that home care is the preferred alternative of the elderly and disabled but is proven to be a cost effective alternative to institutional care.
Developing Indiana's long-term care program into a long-term care system that is person based, not location based, would enable elderly and disabled Hoosiers to have a full array of adequately financed long-term care services based on the principles of independence, quality, dignity, privacy, and personal choice.
Indiana can have a long-term care program that provides a full range of quality services in a cost effective manner. For each person who is diverted from the nursing home $20,144.00 is saved per year. The savings for one person who is not institutionalized could annually serve three additional people in the community.
If the number of nursing home residents in Indiana is 43,000 were reduced by 10 percent or 4300 people, the savings of $86 million plus dollars would serve 11,893 people at an average cost of $7,288 per year under the CHOICE program.
And incidentally, those figures come from the Indiana Home Care Task Force, savings and costs associated with the home care program dated April of 1997. And in this figure, 11,893, would increase based on the cost share calculation applicable to those whose income exceeds 150% of the federal poverty guideline.
It should be noted that these are conservative numbers that represent only a fraction of the number of institutionalized residents who, if given a choice, would thrive in an alternative setting.
1Similar savings are being achieved throughout the O'Bannon administration's effective use of Medicaid waivers for people with developmental disabilities and now persons with traumatic brain injuries.
Expansion of the waiver program to serve those in greatest need should be a key priority area of the O'Bannon administration as we continue the commitment to home and community based services.
Indiana's commitment must be to shore up the continuum of care by providing cost effective alternatives to institutionalization which includes in-home services, assisted living, and foster home care.
Indiana's budget should be sufficiently flexible to fund alternatives that make sense. There is no waiting list for nursing homes. It should therefore follow that no waiting list should exist for in-home and alternative care especially when the option is less costly and preferred by the client.
As a practical matter all alternatives for care, in-home services, including foster care and assisted living, group homes, should be considered before any person is institutionalized.
This means that an alternative care system must be as responsive to the needs of the elderly, the disabled, people with developmental disabilities and/or traumatic brain injuries.
The O'Bannon administration must have an impact on how care is provided for the aging and disabled in Indiana.
I know Indiana will face difficult challenges as it seeks to divert the elderly and disabled now going into nursing homes into other more viable and alternative levels of care.
However, with the extension of life and the baby boomers entering into the aging population, now is the time to begin the process that will avert financial crisis in the relatively near future.
Cost is a critical reason to consider better ways to provide appropriate care within Indiana's long-term care system. Quality of life is an equally important reason. Building on an established system that has proven to be successful, the CHOICE Program must be used as the basis for implementation of a comprehensive program for community integration and support of the elderly and persons with disabilities.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Lester. Next.
ANITA McCOLLISTER
Good morning. I am Anita McCollister. I am a member of the Indiana Commission on Aging. I am also chairman of the legislative committee at Real Services and also on the advisory counsel.
This document which I am going to read has nine points. It has been approved and researched by the Indiana Commission on Aging and it's testimony provides nine comments which reflect on and it's a comprehensive plan for the community integration and support people with disabilities.
The Indiana Commission on Aging provides the following comments relative to the draft plan entitled Comprehensive Plan for Community Integration and Support of People with Disabilities, Policy Options to Support Individualized and Person Centered Services and Funding.
Reference is made to the adult guardianship program on page 37, Appendix E of the draft plan. The adult guardianship program is a valuable program. 284 individuals received adult guardianship services last year, fiscal year 2000.
Only 23 counties are covered by six providers, four Area Agencies on Aging and two Community Mental Health Associations. Additional guardianships are needed on a statewide basis.
The Commission on Aging recommends that the guardianship program be expanded statewide to eliminate the present waiting list and to serve all counties of the state. The program expended $390,376 in FY 2000. An additional $600,000 is needed each year.
Reference is made to the state's CHOICE program on pages 37 through 43, Appendix E of the draft plan. Indiana's statewide in-home services program of which CHOICE is a part has been recognized by the national governor's association as a national model for its flexibility and responsiveness to consumer input. 12,338 individuals received services under the CHOICE program in FY 2000. An additional 7,400 individuals were on the waiting list for CHOICE services. The present CHOICE funding is $42,623,785 per year, each year of the biennium.
The Commission on Aging recommends that an additional $32 million per year for each year of the biennium is needed to meet the growing demands for services.
Reference is made to the need to redesign the home and community based service waivers to incorporate the flexibility currently exhibited by the CHOICE program, page 43, item 17 of the Appendix of the draft plan. The Commission on Aging agrees with this statement.
On page 37, Appendix E of the draft plan, reference is made to the need of a unified vision across state agencies. Several groups have created vision statements including the CHOICE board of which the Commission on Aging chair is a member. The Commission recommends that the CHOICE board vision statement be used as the beginning point in establishing a vision across state agencies.
The CHOICE board's vision statement is: The citizens of the State of Indiana shall have a full array of long-term care services that includes a range of individual options based on the principles of independence, quality, dignity, privacy and personal choice as directed by the consumer. Note long-term care includes in-home care, community and facility based services including assisted living.
Reference is made to funding for community-based services being currently very limited, page 38, item 2, Appendix E of the draft plan. The Commission on Aging agrees with this statement and recommends that the state fund the 10,000 aged and disabled Medicaid waiver slots that have been approved by HCFA but have not been funded. The state is currently only funding 2,500 individuals versus 12,500 approved slots.
The Commission on Aging further recommends that the funding of Medicaid waiver slots be through a separate appropriation for the Medicaid waiver program and the utilization of CHOICE funds as a match for the Medicaid waiver program be eliminated, $4.9 million per year.
Reference is made to the Ombudsman program, the money management program, adult protective services program on page 37, Appendix E of the draft plan. These programs are under funded. The Commission recommends that an additional $500,000 is needed for the Ombudsman program, presently $477,922, to allow Indiana to add more local Ombudsman to bring the state closer to the standard of one Ombudsman for every 200 nursing home residents.
An appropriation of $400,000 is needed each year for the money management program statewide, presently zero funding. It depends on volunteers. And approximately 200 individuals are served each year. An additional $1 million is needed for the adult protective services program in order to expand the hours of operation, from five to seven days and 24 hour access to service, presently serve approximately 12,000 individuals per year with an $856,224 budget per year.
Reference is made to the 16 Area Agencies on Aging serving as the single point of entry for in-home and community based services, page 37, Appendix E of the draft plan. The Commission recommends the continued support and the expansion of the single point of entry for services to older adults and individuals with disabilities of all ages to include new services as they become available in the State of Indiana, and to enhance the infra-structure of the Area Aging network as necessary to stay current.
Reference is made to assisted living and adult foster care on page 43, Appendix E of the draft plan. Full funding is needed for both of these programs that are scheduled for implementation in fiscal year 2002.
The Commission on Aging established the following priorities through year 2006, along with the governor's task force on Alzheimer's disease and related senile dementia, CHOICE board, and money management advisory council.
The Commission on Aging recommends that these priorities be addressed in the integration plan: Education, in the areas of health, aging, financial planning; health care; assisted living; transportation; and employment volunteering.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you.
SARA HUSLOW
Hi, I'm Sara Huslow from Interim Health Care in South Bend. I wanted to present my own personal testimony regarding Olmstead and also Mr. Seth Johnson's, Director of Public Policies for American Association for Homecare had drafted some things I would like to read.
First of all, has the funding for community based services cost tax payers more by forcing disabled and aged people into institutions prematurely. Given that fact, it's not enough to just get people out of the extended care facilities but every person in jeopardy of being institutionalized needs to have a choice of community based services.
Next, no plan will be complete without addressing the shortage of qualified personnel.
Right now, as an RN, why would anyone work in home care when they can only make $6.00 an hour or less than they can in a hospital or a nursing home where they have other support people with them.
In addition, training programs for home health aides are expensive. New regulations, as of March 13, has just forced home health aides to have to go through a complete 75 hour training program in addition to testing these skills.
What that means is all those home health aides out there do not want to go through formalized testing. Even if they've worked for 20 some years they now need to go through training that's not reimbursed.
Once they get out of training they need an hour of in-service, monthly, also, sometimes, not reimbursed. So that they could make less than they could stocking shelves at Wal-Mart. What's wrong with that career choice?
They also, often, don't have the health benefits that they could get in a nursing home or hospital. We need to increase qualified personnel to go into a community based setting. We need to optimize this Olmstead opportunity, if you will, in order to safeguard our own future.
Now from Seth Johnson, Mr. Johnson has sent this letter to all the Medicaid directors in every state throughout the nation. Indiana's addressed so I think I'd like to share that with you for the good things that you are doing.
The American Association for Homecare is currently reviewing state activity related to the implementation of the Supreme Court's Olmstead decision. AA Homecare strongly believes that expanding home care programs is the most cost effective way for the state to implement the Olmstead plan that provides individual access to care in a least restrictive setting.
AA Homecare is a national trade association representing over 3,000 non-profit and for-profit and facility based providers of home health care, durable medical equipment, IV therapy, and the entire spectrum of home and community services.
Home and community based care is not only patient preferred, numerous studies have also shown the home care providers are cost efficient components within the health care delivery system.
One study conducted by the Hudson Institute, an independent research organization, particularly demonstrates these savings. This study, The Cost Effectiveness of Home Health Care, examines the highly successful in-home/CHOICE program instituted by the State of Indiana in 1985.
Indiana provides 100 percent of the funding for this program, which covers the cost of home health care for qualified residents in the need of long term care in order to prevent unnecessary institutionalization.
There is more written but I'll give you this so it can be added to the testimony.
Thank you.
HEARING OFFICER SYBINSKY: Thank you.
PETER O'KASIO
I just wanted to address the concerns on page 20 of this report as far as accountability for people with chronic mental illness in the State of Indiana.
My name is Peter O'Kasio. I am working for Grandparents Raising Grandchildren, but I've also had some experience along the mental health line and case management of chronic mentally ill patients in St. Joseph County and as the report states there is really no accountability for the monies that are given to the community mental health agencies who are basically the door keepers.
They have managed care providers who are responsible as a safety net for the people with mental illness in our community but at the same time they can't reach everybody. There is a lot of people that are falling through the net and not getting the services that they need and deserve.
There is a lot of question of where the monies are going and how these mental health agencies as managed care providers who are representatives of the mental health agencies, how they are being accounted for. Who is watching over them in regards to the consumer and who is protecting these people who are very vulnerable in our society?
This is something that is very important and we need to have something set up in the State where people with mental illness have rights and are exposed to understanding what their rights are and what the services that they are supposed to be getting and should be getting.
The State should form a committee or advisory panel to look at overseeing these CMH sites to make sure that they are taking care of those people that most need the service in our area.
The agency that I work for, Grandparents raising Grandchildren, we have many families that are strong families. We have grandparents who are raising their grandchildren because of chronic mental illness of the adult parent, because of drug addiction of the adult parent. These people have fallen through the cracks. They are raising children with no help at all from the state. They are strong families but they also need some help to keep these families strong. They need mental health care.
They are getting some help from Hoosier Assurance but they do need help with getting financial assistance such as a foster care payment or a guardianship assistant payment to help these families make ends meet.
Most of them are working, they're in their 50's but at the same time they have the additional foster children. Some of them are in their retirement years and they are living on a fixed income and trying to raise these children and a lot of them are border line poverty.
And it's a shame that our state is allowing this to happen because the state is the first one that says, please let your family or relatives take these children. And that turns out to be the grandparent and the grandparent is ending up taking on the cost from the state of raising these children.
The state is saving money but at the same time these grandparents are taking that huge cost on themselves. It is not fair to these people. They want to keep their children out of the system but at the same time they need some help from the state to do that.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Peter. Next.
DENNIS BEVEL
My name is Dennis Bevel and I am an advocate. I, like many of you, did not have this document prior to today's meeting. This was the first time that I've had the opportunity to look at it so I'm at a disadvantage.
My advocacy is for my family members. My family members, I have two siblings who are at the Fort Wayne State Development Center and I have a mother and aunt who are aging and they're both, my mother is mentally capable, physically not. My aunt is physically capable but mentally not, she has a disability.
I find this draft very interesting and also the comments by our leader and other folks about the things that we should be doing or the things that are proposed. However, historically our governor has been able to say that we are approved for foster care, we are approved for assisted living, but there is not money for it.
So why, if there is no money for funding these programs and not just those two programs but any program, why do we represent that we have these programs available to our citizens in the State of Indiana?
I want to first talk about my mother and my aunt who I am also their guardian and I know there should be guardianships set up but also family members can take on that responsibility if they want to. They should not to have to have agencies do that. It's very inexpensive to set up a guardianship for an individual and for someone who is utilizing some agency it's costing you and I, taxpayers, that money when that expense could be bore by family members.
So I am a guardian for my aunt, I am an co-guardian for my brother and my sister and at this point in time my mother does not need that assistance. I think that we need to responsibly indicate to individuals who have made this draft, who are making these proposals, that there are other sources other than state agencies or local agencies to take care of those guardianships.
The next thing is, about 20 years ago I testified before a state senate committee on mental health issues and basically the changes that I've seen in those 20 years are name changes, things that we are doing the same things today that we did 20 years ago. We are doing a study and when that study is completed we'll be doing another study and there is never any really concrete results.
We spend lots and lots of money on study, not only in this business that we're drafting today, but in private businesses you can see the same thing.
We are not a private business we are a state government. We are a state run advocacy program here. And so I would like to know how much has it cost the state thus far to go across the State of Indiana to prepare a document for it and invite people to come who have never been able to utilize or have been able to see this document until today.
I think one thing that should be publicized, how much has it cost to do this. Like I said, 20 years ago I testified before a state hearing senate committee regarding these mental health issues and they have not changed. I mean, it's the same thing, we're repeating.
Services for the elderly, my mother and my aunt are both eligible for those services. I think there is a conflict in agencies providing those services. Where they live there are two agencies that serve them, and I know there is a duplication of services but I also know that each one has, one funds it and one doesn't fund it.
And there is a waiting list for many, many people to take advantage of the services: Housekeeping, health care, grocery shopping, all those things that we want the people to be able to stay in their homes.
There is more demands on training, the wage they're being paid is not competitive in the market place for the market that they serve or the job classifications. You're right, they can go to Wal-Mart or wherever they want to go where there is benefits as well as additional pay.
But often time these folks that are -- and I am not belittling them but these folks that are in these programs they have, one, they probably don't have the transportation or the ability to get to any other type of job but also they have a caring heart so that's one of the things that we have to remember. We need to think about those kinds of things.
I want to talk about my brother and my sister. Both are severely retarded, both are blind. As I said, they are in Fort Wayne State Development Center. I have been an advocate for them and our family has been very involved in their care throughout the years. We go on birthdays. We go on holidays. We used to have them home when they were able to come home. Their blindness came while they have been in Fort Wayne and then there was a rebellious period for my brother, and my mother was not able to handle him so the home visits have been -- we don't have home visits anymore but we do visit there.
I would testify that you could talk to any of the staff at Fort Wayne and they will tell you that the Bevel Family is very involved in the care of their loved ones.
Last week I spent a day in Fort Wayne. We had annual staffing for my brother and my sister. My brother is in a apartment -- well, they are in apartment type living. The push -- we're gonna place him here. We're gonna place him here. We're gonna place him here.
As a guardian I refuse for that to happen. That happened before. He was at Logansport, he was in Indianapolis, he was in several different places.
They put folks in places they do not belong or cannot cope with. They put them in nursing homes that folks that function like -- as their ability, they are around people that are sick. There is other things going on around them. They should not be placed in nursing homes.
Group homes, I have my reservations about them for people that are low function. Those people that can function at a higher level I think they are probably pretty good but lower functioning individuals, a group home is not the place for them.
And then there is so much controversy today about group homes just in the newspaper locally someone just robbed people that were living there over a period of time. You know, what kind of controls do we have there?
The environment in some of the group homes are less than desirable, I guess you might say, and there are some very good providers in the group home setting. But it goes back to, you know, my brother and sister are both blind, how could they function in a group home.
I will say that their care is impeccable where they are currently. The only thing that I find at fault is that the state has failed to maintain the facility aesthetically. They look good from the road but when you get up close there is weeds in the grass. There is this growing out of here. You go in and it needs a paint job. They can do other things but they can't maintain the existing facilities. And that facility in Fort Wayne is not all that old. It is entirely brand new campus out by Purdue/IU campus, plenty of ground space, empty buildings which are in disarray.
So, you know, I don't want to be a pessimist because I'm very optimistic about the care that my family is getting but I think we get caught up in studies, I think we get caught up in not spending the dollars, we have approved programs where there is not dollars provided for those programs to be utilized.
I also, I guess I was amazed when I walked in the door and I was handed the draft that I didn't know anything about. There was nothing in the letter that went out that said, we're going to discuss the draft, and Mr. Fox had a prepared statement, this lady back here from the aging people, she had a prepared statement. Obviously they had the prepared statement because they had the draft ahead of time. And if you expect people to participate, advocates, citizens of the state, other than those that are working for the state or working for an agency to respond, these should have been provided.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you.
UNKNOWN SPEAKER: I would just like to second what he has said, maybe not in every detail but in general. He has got a real problem. My grandmother has a similar problem. That's what I'd like to say.
HEARING OFFICER SYBINSKY: Thank you.
UNKNOWN SPEAKER: Notice that there are alternative versions of the draft. You mentioned a Braille version and that's very admirable.
Pat's question was, is there a large print version of this because there is probably far more people who are visually impaired but not blind who don't read Braille but also would need a large print version. Does that exist? Is that available?
HEARING OFFICER SYBINSKY: We will produce one on request and that would, you know, maybe afterwards we can figure out how to get it to you.
UNKNOWN SPEAKER: I am one of those people who has been in a nursing home and then integrated into the community. I was in the nursing home for 18 years so I had no furniture and very little, like, dishes or anything.
This sounds great but the transportation in this area with physical disabilities is terrible and the only thing that you can do is go to a store where you can't afford the furniture and if you're lucky you get friends to take you to yard sales that you can pick up a few things.
When I first got out I didn't even have a bed, I had to sleep on the floor. And I think that if Indiana wants to be progressive they have to fund some of these programs and help people out that.
I have a friend who was on a waiting list for three years and finally had to go to Ohio to receive assisted living. I tried to get assisted living but they don't accept it in this area. It sounds like they have a care doctor in front of you but you can't get in the program because there is a lack of funding.
We need better housing, usually you have to adapt to whatever housing you get and do any alterations that you can. Anything to do with medical is about three times as high as it is normally.
We have, like, I'm living in a senior citizen high rise because it's somewhat accessible.
The other thing is about the care givers. They are very nice, very dedicated people but on the wages they get they aren't going to stay with you very long. I don't know how many I've had. And then there is theft because they are not giving them wages. So they need a living wage.
That's about all. Thank you.
HEARING OFFICER SYBINSKY: Thank you. Next is Tom Seevers with Pat Bryant translating for him.
TOM SEEVERS
I am Tom Seevers. I live in an apartment for nine years and for four years I have had a roommate, for three years I was by myself.
In 1987 I was living in New Hope. I was taught to move on my own. New Hope is a rehabilitation center. I think more people with physical disabilities need to be taught how to live in an apartment situation. A program needs to be set up on how to deal with home care aides, how to prepare food, how to shop, how to keep a check book, how to manage your life.
Also I hope one day to have 24-hour care and that's not possible right now but for my safety I need 24-hour care. I can't tell you how important that is. I also agree with Pat on the important higher wages and benefits of home care.
HEARING OFFICER SYBINSKY: Thank you. Next? Yes.
ROGER VOELKER
I'm Roger Voelker. I would like to add to what has been said except I want the express my admiration for those who have the courage, people whose physical disabilities would give them great communication problems but have very, very good minds and have things to say and important things to say that we need to hear. It takes courage to testify and I just want to express my admiration for that.
We know what the problem is. One of the testifiers said that we've had these studies, we have had study after study. I worked for Citizens Action Coalition, well, I still do, but for a number of years I went door to door and talked to people about these issues, particularly about the CHOICE Home Health Care Program and there is virtually 100 percent support out there so the public also understands very clearly that home and community based care is far more cost effective and far more humane than institutionalized care and yet Indiana continues to be 49th out of 50 states in the percentage of our long-term care tax dollars going to institutionalized care and the small percentage of our long-term care tax dollars that goes to home and community based care.
So why does it seem that everybody understands the problem, everybody understands the solution except, it would seem, the folks who appropriate the money, who write the budgets, the politicians in Indianapolis and, of course, we've heard repeatedly, wonderful programs.
I look at this document and it's a great outline of what needs to be done but, again, it always seems to come down to inadequate funding. Great programs, not enough funding to implement them. Why is this?
It may be going beyond the step or the scope of this hearing but I have to look at how our political system works and why it seems that our elected officials who are supposed to represent us and whose job it is to see that good public policies are carried out and funded and it does not happen.
If you look at how our political system is funded, frankly, is that our politicians, for the most part, represent the interest of those who are writing the checks to pay for their campaigns not representing the interest of the people of Indiana, their constituents or good public policies.
Current general assembly sections also have been an example. We got a very modest increase in funding for the CHOICE Program. We've heard that the problems of inadequate pay for health care workers, that health care workers don't have access to health care themselves because the provider reimbursement rates are so low that their employers can't afford to pay them those benefits, and yet when the budget went over to the senate side the small increase we got on the house was zeroed out and I hope that that is resolved in conference committee.
We need to see that the way we finance our campaigns and whose interests truly get represented down there. I think we need to educate ourselves and other people that this is a critical connection.
Thank you. I represent the Citizens Action Coalition.
HEARING OFFICER SYBINSKY: Thank you.
BILL JACK
My name is Bill Jack. I work with the Northern Indiana Alzheimer's Association. Very briefly, I echo the comments that have been made. This is the third set of proposals that I have seen since I have been working in the Alzheimer's Association for services.
In 1997 the CHOICE Board did recommendations to the governor for long-term care system over all. December of '98 the long-term care dialogue issued another set of recommendations. This is the third set of recommendations, they will be absolutely no good without a commitment from the governor to fund the programs that are necessary.
The CHOICE Program has shown to be a marvelous program, but taking CHOICE dollars and putting them to fund the Medicaid Waiver Program, it is a tragedy to think that that might happen.
The CHOICE Program has severe waiting lists currently. There needs to be funding to eliminate the waiting list for that and additional funding for the 10,000 Medicaid waiver slots.
I urge the governor to put funding behind these proposals and make them a reality.
Thank you.
HEARING OFFICER SYBINSKY: Thank you. Next.
RYAN STRASKOWSKI
Good morning. I'm Ryan Straskowski. I too would have had more eloquent remarks had I seen the document prior to coming in this morning.
My name is Ryan Straskowski and I'm the Director of the Mental Health Association of St. Joseph County and also the regional Ombudsman for the Indiana Mental Health Ombudsman Program.
I just have a few points that I would like to make after looking at this documents. Things that our constituents in the mental health field would, I'm sure, find critical points for us to address.
I think, number one, I should state that our role is as an advocate for mental health clients within the community and we do that for individuals regardless of their ability to pay, regardless of their condition, and we provide those services free of charge to the client and for the most part, free of charge to the community except for those agencies and individuals in the community that supply dollars to us. We have no state dollars, we have no federal dollars so we operate off of the wealth, if you will, of the community and return that investment back directly to the community as well.
As an advocate, the one thing that I would like to see addressed, and it was mentioned here earlier and it refers to something that Peter said about accountability, we as a mental health Ombudsman are able, through Indiana State Legislature, to go into a facility and do an investigation at any point in time when we get a complaint from a client.
However, we sit in a very similar position to the division of mental health field case workers in that we have no teeth to enforce any of the findings that we may have which compromises our position to really work effectively for our clients.
So one of the areas that I would like to see some strength is in the Ombudsman ability to have teeth in enforcing our recommendations on behalf of our clients when they have complaints, and with that, although I know other people will be in line, we certainly would like to see a share of dollars coming down to help us do those activities in a more effective manner.
The other option would be for emergency financial services to be available when clients need them, not when the paper work is finished.
We have many clients that will come to us and in many cases it is as a result of their disorder.
I will give you an example: I had a young woman, who because of severe anxiety disorder, missed an appointment at the Family and Social Service Agency here in our county. She was immediately dropped from the role because of her missed appointment. It's obvious that there was a reason for her missing her appointment and yet until she was reinstated she did not have the ability to meet her mental health needs and therefore to get back on her feet.
So I suppose that presents two positions. One is looking at the situation of an individual when you're applying rules, while that might be a harder issue because of treating people unequally.
The second case would be an availability for those of us who deal with crisis situations to provide emergency assistance that would be refunded to us or to that individual in a timely basis so that they can get things like medications.
For any of you who are aware, we're currently at statewide level rallying for changes in mental health coverage, for Medicaid, so that they don't go to a formulary for the newer drugs -- if any of you have dealt with individuals with mental illness who are without medication for a few days, what we could have paid out in a weeks worth of medication instead are hospitalized and the year of medication cost is consumed in a matter of three to five days because of a hospitalization.
Those two points are very important to us. The advocacy and the emergency options. And I would say, just another point, I know that we have a population of individuals here in our community where guardianship would be of great importance and of great benefit.
Real services doing a great job with the senior population, 55 and over, Logan Center Protective Service Board doing a great job with folks who have developmental disabilities. But if you are between 18 and 55 and have a mental illness, a traumatic brain injury, or any other kind of disability requiring a guardianship you are lost in the shuffle. So that would be another area where I think attention should be focused.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much. Next.
UNKNOWN SPEAKER: Peter, I would just like to make a statement that in all the 20 years of research and all the paperwork and how many trees that were cut down for all of that, the important thing is for all citizens to get their legislators, their state senators, their state representatives -- go to them, e-mail them, talk to them, write letters. They need to know and get something down there to show how you feel.
HEARING OFFICER SYBINSKY: Did everybody hear that? I think you were speaking up to me but I think the -- everybody heard the testimony or the addition? Okay.
UNKNOWN SPEAKER: I would agree with what she said but I think many of the legislators and senators, they have their own agenda and they are not aware of the needs of this population so I think there has to be awareness. It should be made available to them of the need. They are more interested in what's in it for them as opposed to what's in it for the disabled.
UNKNOWN SPEAKER: I just want to echo what Anita has said because my statements about the power of money, which sometimes seems overwhelming, but people have power too, so I don't want to bite my tongue with this power of the people. When you speak loud enough people can overcome that power of money, and so we just have to work harder at democracy. In fact, please write it down and send it to us, because we really want to hear what you have to say.
HEARING OFFICER SYBINSKY: Is there anyone else?
(No response.)
If not we will stick around and try to answer any questions or provide information for you.
We do appreciate very much the time you've taken to come out and provide your input, and I do want to say it is going to be listened to, and it is going to find its way into the kind of policies that we adopt in this plan.
I'll close the meeting, but once again, thank you very much for coming, and we look forward to working with all of you to create a really good system for Indiana's consumers and their families.
(Hearing closed at 11:00 a.m. on April 24, 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 Andrea Jacobs took 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 24th day of April, 2001;
That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 7th day of May, 2001.
__________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2009
