Transcript of Public Hearing Richmond
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
AUDITORIUM
INDIANA UNIVERSITY EAST
RICHMOND, INDIANA
APRIL 17, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Sybinsky
Public Comments:
Linda Muckway
Written statement attached as Exhibit 1
Frances Egner
Roscoe Harkins
Written statement attached as Exhibit 2
John Williams
Nicky Graham
Karen Combs
Betty Beaty
Written statement attached as Exhibit 3
Mona Thomas
Written statement attached as Exhibit 4
Barbara Jenkins
Deann Woodford
Written statement attached as Exhibit 5
Dan Steward
Donna Jensen
Terry Statzer
Written statement attached as Exhibit 6
Abby Brewer
William H. Boothe
Written statement attached as Exhibit 7
Maggie Alderson
Betty Williams
Derrick Qualls
Man in wheelchair on ventilator
Tony Shepard
Kathy Bridgeford
Ellen Somers
Written statement attached as Exhibit 8
Paul Register
Written statement attached as Exhibit 9
Adjournment
PROCEEDINGS
HEARING OFFICER SYBINSKY: Good afternoon. I'm Pete Sybinsky. I'm Deputy Secretary of Family and Social Services for Policy and Research. I'd like to welcome you here to this meeting.
To begin with is there anyone in the audience who needs in interpreter or interpreter services?
(No response.)
If not, thank you very much. Today we're coming out to listen to what you have to say about the principles and ideas that we've put out in our draft plan for community integration for persons with disabilities.
I'd like to thank and identify some resource people who are here to assist us with our efforts and also to identify and thank our partners in the Richmond Independent Living Center, Ed Bell, he's back there in the corner, he's been real key to bringing this meeting into fruition and I want to thank and his center's staff for their help.
I'd also like to identify Ms. Sharon King, who is the Director of the Division of Family and Children's Office -- supervisor of the office in Richmond. She's here to assist us as well.
I'd like to mention that I'm not the only one here from central staff or from FSSA. Coming up from Indianapolis are Dale Marion, Executive Director of Mental Health, and also from Mental Health we have Jeff Butler and Jim McCormick, and Tony Shelton from Triple A, and also from Indianapolis are Adrian and Donna from our Bureau of Aging Services. So a lot of us have come to listen and hear what you have to say, and we're making sure that some of our top administrators are at every meeting so that people do get an understanding of what you are telling us.
I'd like to spend just a couple of minutes giving a bit of background for the draft plan and telling you how it was put together, and then the meeting is yours.
In 1992 Central State Hospital was closed. It was the first big institutional closure in Indiana's history and looking at Central State as kind of a key point, because it really began in a real way to move to community integration in Indiana.
In 1997 and 1998 two state developmental centers, New Castle and Northern Indiana both closed and the folks who lived there were moved into community living. This started the trend, started the activity for person 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 particular care in the community.
While the emphasis is community-based care, we do have to take care of people who are in institutions as well. Their needs are not going to be lost or overlooked in all of this.
There are basically six policy directions, and I'm going to go just very lightly over them because you have them in the brochures, you've looked at them in the plan.
First of all increasing consumer choice is a very, very high priority so that people across the state whether they're in an urban area or a rural area will have choices that are meaningful to them about service, the location they take the service in and who gives them the service.
The second policy direction is to improve access to information and assistance. We want to emphasize informed choice. That unless people know what the options are there won't be any informed aspect and there won't be any choice aspect. So we really have to do a better job at informing people of what's available and how they can access those services.
Third we need to support an informal network of families, friends, neighbors and communities in general helping them to take care of people in their charge. The informal caregiver network is such an important one and so many people have testified about their personal experience that they really need help. This is a key area where we really need to focus.
The fourth direction is to strengthen quality assurance, complaint systems and advocacy efforts. We need to have a quality system. We need to make sure that people are getting the services that they need in a respectful and complete manner. And we also have to have ways, if they aren't getting those services that they can complain to us and let us know. So that we can rectify the matter and we need to do better in that.
The fifth direction is to increase our capacity for high quality care. We've heard many, many statements from across the state from varieties of people about the additional services that are needed and the things we have to do to strengthen our service delivery system.
The final policy direction is to create a coordinated work force development system. Again we've heard from all over the state that there aren't enough workers, there isn't enough training, there isn't enough in the way of people to provide the services that are needed, and sometimes even those that are funded.
That's the overview of what we've done and what we've said. It's now time for us to listen. We've got a court reporter here that's taking down everything we say and it's going to be a public document. It will be on the FSSA internet site so you'll be able to get it in about 10 days from now, I expect.
We will basically have these documents available to people so that they can see what was said across the state. We are going to use this information and take it back and crank it into our planning process and use it to improve our plan.
I'd like to ask at least initially that you try to focus your comments and limit them to make sure that everybody says what they can say and what they have to say. If you need to you can say more at the end, because we'll give you a chance to do that too. Letters, written comments and e-mails can be forwarded to us with testimony or comments up until April 27, 2001.
We're going to read and look at and work with every comment that is made. If you don't feel comfortable at standing up and saying something today, please feel free to write it down. In fact, please write it down and send it to us, because we really want to hear what you have to say.
I'm now going to take my seat, and give you all a chance now to speak and say what you want to say in terms of your reactions to this plan and your thoughts about what we need to do.
I'm going to go along first of all to the sign-up list and then after that it will be an open floor and I'll call on whoever raises their hand.
LINDA MUCKWAY
Hello, my name is Linda Muckway. I live in Muncie, Indiana, and I receive services from LifeStream, that's our triple A in that area. I wanted to talk about how grateful I am that I do have CHOICE.
I was fortunate enough to only have to be on the waiting list for a year. But at this point, I found out today, that in my area the waiting list for people with disabilities has gone up to three years. And I do know the waiting list is different depending on whether you're a person with a disability under 60 or over 60 and that's because that's the way the funds are allocated.
The way the CHOICE funds currently help me is that I have a homemaker that comes four hours a week and she helps me do a variety of things. She not only does homemaker services for me but she assists me by going to the grocery store and helping me getting my groceries and she also picks up prescriptions and that sort of thing.
And I also use CHOICE for my transportation needs in order to get to Indianapolis to some specialists that I go to. I'm real grateful for that.
The thing that I had some difficulty with when I was reading the plan, it talked about service but it didn't give any specifics of how it was going to address the issues. So I hope when the final plan is put together you have some methods in place on how you're going address these issues.
It didn't talk about how, even though they had a lot of federal dollars for transportation, it didn't talk about how they were going to coordinate services so that more people with disabilities could get their transportation needs met, because I know that's a real problem for my friend how often they can use their transportation.
Thank you very much for giving me the opportunity to speak.
HEARING OFFICER SYBINSKY: Thank you, Linda.
VOICE: I'm from Richmond, Indiana. My comment is I appreciate the draft. Where it talks about information to consumers and choice to consumers, but what I see missing in the plan is control for consumers. I work with an individual who wanted to come here and testify today who has previously been in a nursing home and is now in his own apartment in the community, but his attendant care could not be scheduled to where he could be here today and it's because he has no control over his dollar. I would like to see in the plan where the consumer has not only information and choice but also control.
There's agencies that the state reimburses at $14 an hour and the folks that work for these agencies are working at little more than minimum wage and the state sets the guidelines.
I think people with disabilities are capable of making those choices, not only choices with the proper information, but being able to control those dollars or have some say so over those dollars on who they can choose to hire, to fire, how much to pay, when folks can come, when they can attend, whether that's transportation or attendant care, whatever the choice.
I believe the American ingenuity and creativity of the people is great and that includes people with disabilities. I would like to see economic control in the plan. Thank you.
FRANCES EGNER
My name is Frances Egner. I have a daughter at Muscatatuck who is profoundly retarded and has multiple handicaps. What I want to know is if you're closing the state institution, what choice do we have besides putting them out into the community, because they've been in the community and the community doesn't want them.
There's no doctors who will handle them. We think they are happy where they are at Muscatatuck and they get the best of care there.
Everybody who is at Muscatatuck -- the parents have a meeting, none of the parents want their children moved into the community. What's going to happen to them if you close it? There's no place for them.
Also I wanted to know, the governor is going to get this report in June, how long is it going to take him to do something?
HEARING OFFICER SYBINSKY: We will be producing a report and it will be going to the governor and I cannot say anything about what will happen there, except he has done something only about 10 other governors did in establishing this executive order. I think that shows a very strong sign of his commitment to make this happen, to make this a reality.
I want to point out I'm not going to be answering questions here. If you want to raise those questions, we will try to address them in the plan. But I'm here to listen and to get input and I think your comments are going to have some impact on how we plan.
Thank you.
I'm not going to be answering questions but I did want to answer that one because it did have something to do with the planning process.
MS. EGNER: One other point I wanted to make was there's too many different organizations doing the same job and you can't find out who's doing what.
HEARING OFFICER SYBINSKY: Thank you very much.
ROSCOE HARKINS
My name is Roscoe Harkins. I've been appointed to the Indiana Commission on Aging by Governor O'Bannon. We had the plan in a meeting and we reviewed it and the Commission on Aging asked me to come and make this testimony.
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 guardianship 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.
HEARING OFFICER SYBINSKY: Thank you, Mr. Harkins.
JOHN WILLIAMS
My name is Johns Williams and I'm CEO at ARCHER. We do alternative family assisted living, kind of, supported living. We have an office in Mount Vernon, Indiana, and Richmond, Indiana. We cover all of Indiana, currently in 40 some counties.
As a provider agency I have some concerns that we addressed back in the November hearings up in Indianapolis, and those concerns relate to how the providers pay individuals and have the time and the effort needed to prepare individuals to serve our clients in the best possible way.
The comparison in the draft report compares provider wages to flipping hamburgers at McDonald's and our product is much more important than hamburgers.
The concern we have is -- I do a lot of consulting work in addition to running the agency and when I get into other agencies and I hear that they aren't preparing folks very well or consumers or clients that choose us because the staff working with them at the current agency doesn't know what they're supposed to do, they haven't been taught that, I get concerned that we aren't preparing our folks very well in a professional capacity.
One of the concerns, I think, is that the budget concerns are very much a part of what we're talking about. How we can make a dollar fit everywhere. One of the suggestions we made in the November hearing in Indianapolis was that maybe a program be implemented similar to the certified nursing assistant program, not that that's an ideal program because people can do their own thing once trained, but a program that basically qualifies the entry level direct care staff in an Ivy Tech vocational funded program where the basic requirements are taught and they have a, quote, certification.
And that is something that maybe the state in terms of dollars could fund the program, so if somebody wants to be a healthcare worker in supported living they could receive the training.
We run the age and disabled waiver program also. We deal with aged and mental illness needs and developmental disability clients, so we're talking about staff that have a wide variety of training needs similar to the certified nursing assistant program.
If they came to us with credentials, then we could specialize on the type of client they're going to be working with in our agency and focus on that.
The turnover rate is very high when we're starting people at $8 an hour. We pay them $10 an hour. We're actually competing with McDonald's, but as I say, our product is people and it's very important.
We have to take someone who has an interest in working with an individual and then essentially teach them everything they need to know with no reimbursement from the state. We can be paying until they actually provide service. I think that's a big problem that provider agencies have. How do you provide the service and teach the people what they need to know to have a good product for client care and compete with people like McDonald's.
So let's look at maybe a certified program that people could go from that to the provider agency where we could verify that they have received the initial instruction, they're qualified in that area and then we do the specialized training.
I'm sorry to say this but when people come to work for us that have worked in any other settings we find out that they really haven't been very well prepared for what we do and we have to start over. And that's a shame when you tell somebody leaving an agency similar to ours and yet they don't have the client skills that should have been taught. That's a big concern, how do you qualify people.
Thank you.
NICKY GRAHAM
My name is Nicky Graham, and I'm from Fort Wayne. I plan on trying to attend all these meetings because I feel that there's different situations throughout the state in all the areas which is vital to know in order for the state to connect and work as a whole, which I think is sometimes a lot of our dilemma in different areas.
I do work for an agency. I do respite care and personal assistance care. But I'm not here representing my agency, I'm here representing the people I care about. I'm here as an advocate.
I've learned a lot through the years. I'm a family member with a person with a disability that was in Muscatatuck for many years and since then has died.
I am now also the care provider for a 66-year-old gentleman with Downs' syndrome that has been institutionalized since 1965 when his mother died and he had no family.
I worry about the choice that we say that we give these people. It's such a widely used expression, the consumers say they have a choice, they choose, you want to leave the institution? Well, of course, they want to leave the institution. But what I fear for and what I've seen is a lot of these that are coming out of Fort Wayne State Developmental Center, Muscatatuck, New Castle, whatever, they're coming to these agencies, they're assigned a state, quote, case manager, whether waiver manager or there are some private companies out there. A lot of the people have no family. They have no family. And not only that, they have no understanding of what is really meant as the best for them.
These are people that are sitting behind desks that are assigned this person. They meet with them. They talk to them. What do you like? What are your hobbies? Do you like corn? Good, good, good. Now, do you want to move out of the institution? Do you want to move here? Well, here's this agency -- and which ever agency comes in and offers the best of things -- well, we can do this for you. We can put your child in an apartment with three or four other people. They can go to outings. They can be included in the community. They can do all of this. All of this sounds wonderful. I want them to have independence. I want them to live out -- oh, that would be great.
Okay, that is good for ones that have family, and parents want to see their child or their loved ones be independent in an apartment with a roommate.
So they have two or three of them and they put them in an apartment together. And they put them in certain areas of town and whatever. And then the thing is, all of sudden, there's all these disappointments and the family is saying well, Johnny didn't get to go do that or they don't do this. Well, here again you have people making decisions for these people.
They put three people in an apartment and let's say they put two in there that are immobile and one that's very active. Let's say there's one in there that likes to get up and go and does things but then you've got two that are very confined. And the agency with staffing as the gentleman who just spoke, this is not a job that people are banging down doors to do because they're not respected for it.
I know so many good people that work in this field that really are concerned about your loved ones but the respect they receive from the agencies and the way they're looked upon -- well, you can't blame them for going to McDonald's.
So I think what we need is we need a very strong advocate program. We need to make sure that these people are covered. If they have families, we need to make sure that the families understand what's coming down from these state case managers and what's being said. We need to make sure that if they don't have families that there's advocates that know this person, that know this person.
A 66-year-old gentleman can't get him to go to work. He won't get up of a morning. He's awful. He's hard to take care of. He's 66 years old, it's time for him to enjoy life. No, he doesn't want to get up at 6:00 a.m. and go to work. But let him sleep in until 9:00 and he's up and he's proud and he's ready to go to work. But the staff can't do that, no, no. We have to bring them in. They come in at 11:00, they spend the night. The people have to be up. They have to be ready for work. We have to take them and drop them all off by 7:00 a.m. at the workshop because we don't want to have to pay staff to be with them any later than that because we run into hours and overtime and stuff, so then this person is a problem.
You know what I've found really works great, especially with people that don't have families, is families. A lot of these people coming out of these institutions they want a family. They've not had that mix of a family. Of one going to the store, go to the store with me. Now, well, I'm going to run to the cleaner's, do you want to go? Let's all go to church together and go out on Sunday after church.
The staff is only going to take them and do what is required of them. First of all, they have less self-esteem of themselves because they're not paid fairly.
The more they look at it and the harder the clients are to work with they begin the issue of why bother. I'm only paid $8 an hour why put myself out. And then there's the promises from the agency, oh, let's put them in these apartments, three together. We'll have two people come in maybe six hours out of a week. Of the 40 or 187 hours in a week, maybe they'll have 20 or 30 where there might be two people. So you've got the one guy that is just anxious to go somewhere but then you've got the other two, and the agency doesn't have a van, there's no transportation.
The person that's working there that's a lot of responsibility for them to load two wheelchairs in their car and load the three clients and try to take them to the mall or take them to Target or take them out to eat.
I guess what I'm saying is I'm tired of people that do not get out there and work and know these people are the ones making the decisions.
To me that's like being a secretary and having a CEO for a boss that's never typed on a typewriter or used a word processing program and come and say this is the type of computer you're going to use and this is the word processor you're going to use although I don't know nothing about them, and I don't really care. Just so you get the work done.
Well, people, that's where we're losing sight. And if we as families and advocates don't take control -- there are good agencies, there are bad agencies. I'm just saying we need to have more people involved. I think we need advocates, especially for ones that don't have families. And as a matter of choice, that really understand and they want their child to stay at Muscatatuck, then that is a choice. As long as they're fully knowledgeable about the decision and that's where it comes.
I think we need to look at the foster care plan, at the adoptive plan. There are lots of families out there, good Christian families that would take in people because they love them.
HEARING OFFICER SYBINSKY: Thank you.
KAREN COMBS
My name is Karen Combs. I guess my most important title is I'm Kelsie's mother. Kelsie is an eight year old and she was born with hydrocephalus and cerebral palsy, and because of Area 9 and Sue Cunningham, our representative, she has worked out a way that the ICF waiver provided Kelsie a communication device and at the age of seven and a half as a mom I got to hear my child say I love you for the very first time.
We're on the other end of the spectrum as a lot of you folks. But I'm here to tell you our road has been a challenge, but that communication device has made all the difference in the world.
We fought with special ed services and it has been an uphill battle. But because of the ICF and waiver, Kelsie is able to go into the grocery store and ask for a cookie at the deli department just like everybody else and say thank you. And she's able to use her voice that she wasn't able to use up until July of last year. And as a mom I am so grateful for the flexibility in the waiver program.
We also have nursing hours and because of the flexibility I was able to be here this morning. Our nurse was transporting Kelsie to school for me. I appreciate being able to carry over the hours, that we don't have to lose them at the end of the month. We can stockpile them like we did last summer and took our nurse on vacation with us. We have been served very well. I just appreciate everything that Area 9 and Sue have done for us in caring for Kelsie.
Thank you.
BETTY BEATY
Hello, my name is Betty Beaty. I'm very personally aware of the many persons who receive in-home services. Some of this awareness came because I'm a registered nurse and I worked in a nursing home for 31 years.
I saw patients -- not patients any more, they're residents, but resident after resident that did not really, really truly need to be there. I told one of my administrators that and I thought she was going to fire me. But I stayed 31 years, so she didn't do anything about it.
But the CHOICE, the waiver, ICF/MR, the Older American's Act, and the SSBG Funding, without these, these persons would be institutionalized and they are. All of the services which are provided in home must be expanded and the reimbursement for those services to occur at a rate which vendors can afford to pay staff adequately to provide them.
Presently Medicaid waiver rates are so low that many vendors have pulled out of that program. The agencies who provide services need a good quality staff. They can't attract good staff without salary levels at an acceptable rate. Only once a workforce is in place can we work on the issues of standards and training that were mentioned in the plan.
I am also in support of the strengthening of services to caregivers. Most of the care provided in Indiana is still provided by family and friends. Many times the formal programs only supplement what is in place. Sometimes that supplement is very small. We need to provide respite and funding for services to caregivers.
The plan does not address any specifics in this area. We also need to see the promised development of the adult foster care and assisted living waivers. These two new services are absolutely necessary to provide a full array of options for the disabled.
There were no time frames or amount of funding indicated in the plan to address implementation.
Most of my experience when I first started out was in a nursing home. As I told you I worked 31 years in one nursing home. You don't find many nurses that stay that long in one place but I liked it there. I became very interested in this and up until just recently I was not affiliated with any agency. This was my own personal thing that I wanted to do. Then I got interested in Area 6. I work for what used to be Title 20 when it was Title 20. And then I didn't work any more for a while except I volunteered at a Hillcroft Center. I've got 4,000 volunteer hours. I don't know how long it took me to get that many. But I worked there for a long time to help the children, and I love the children, to help them do what they can do today.
Many of those kids at Hillcroft that were babies when I was there are living in apartments and getting along very well and it's because of the programs that we have today for those children. Now, this is strictly in Delaware County, so I'm sure the same program is in other counties, but I'm proud of my county and I'm proud of the things that we do.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Betty.
Next person.
MONA THOMAS
My name is Mona Thomas, and I reside in Henry County, New Castle, Indiana. I appreciate the chance to get to talk with you about the Indiana plan for persons with disabilities. The plan remarks of the need to strengthen our existing information services including care management.
Lifestream Services, our local area agency on aging, has developed a comprehensive care management plan. The agency works to coordinate all funding sources into a comprehensive plan for each individual.
They have implemented the services to both the elderly and disabled in a very professional way.
I know these can be joined and put together because I live and work in Maplewood Terrace which is a residential home for individuals who are aging and who have disabilities.
The state needs to continue the area agency as a single entry point for community and home based services.
The reimbursement rate for care management services does need to be revised and updated. Low reimbursement rates make it difficult for all area agencies to recruit and retain good care management staff.
The plan also addresses the need for expansion of the adult guardianship program. I have served as an advisory council member for that program during the time of New Castle State Developmental Center and since. The program is presently operating in the state and primarily serves only those residing in institutions or recently residing out of institutions.
There are many persons living in the community who have no one to serve as a guardian. The plan does not provide for how expansion would occur and that specific should be included. These people living out in the community who have no other means and there are many of them who need an adult guardian, I've seen that. And we hope you will include this in part of the services.
Thank you.
HEARING OFFICER SYBDINSKY: Thank you, Mona.
Next person.
BARBARA JENKINS
Good morning. My name is Barbara Jenkins, and I'm from Richmond, Indiana. I want to thank all of you who are involved in helping our disabled. It's gratifying to see people again take an interest.
I have a daughter who is 49 years old that I kept at home until she was 15. She is severely mentally and physically handicapped, in addition to being blind. We tried everywhere to find placement. We finally placed her at Muscatatuck. I thank God every night for the excellent care she has received there.
I know institutions have a bad name, but let me tell you I have visited some group homes and I know that the care that she receives there at Muscatatuck could not be improved.
The staff although they're very much underpaid, they're overworked, but they're extremely dedicated. They're always willing to sit down and talk to you. I have never walked in there when I have found my daughter -- when she hasn't been clean. She doesn't know me. The staff there is her family.
If she was placed into a waiver home which a social worker from -- I won't mention the name -- pretty much insisted that I place her, she would have no reality of having anybody that loves her.
You may not understand, people are underpaid who do this work. Maybe they'll work a few months and -- like they said, I can go somewhere else and make double this salary. Nobody cares. You have to be an extremely dedicated person to do this work.
At Muscatatuck they have enough staff that if there is one bad apple in the crowd, you can believe the others are going to tell and that person won't be there long.
You have someone in a group home where there's maybe one or two, how do you have any assurance that your child is going to be taken care of. And my daughter is no longer a child, she's 49, and I know I'm not going to live forever. I would like to die with the assurance that she is going to have somewhere to be taken care of.
I would like for some of the senators and representatives who are making some of these rules, even the governor -- I'm asking for a miracle here -- would go down and visit these places, not just group homes, but Muscatatuck and see that some of these people cannot possibly make a judgment as to their care. They need to know the amount of care that it takes for these people.
My daughter may live 20 more years, I have no idea, but there needs to be a place for her that she can be taken care of.
Another one of my gripes are rules. Rules, rules, rules, papers and reams of rules. My daughter cannot even stand. She has twisted feet. Yet one of the rules on paper she has to wear shoes. Why does she need to wear Nike shoes.
They're uncomfortable on her. I have asked them to please just put anklets or socks on her. Well, we can't do that. The rules are they have to be dressed with shoes on. That's ridiculous.
Another thing if we could, just as mentioned previously, if we could just get an increase in pay for these people. If you think these people aren't dedicated and don't deserve money, go do their work for one day. I bet you wouldn't last a week. I could not do it. As much as I love these people, I could not do the work the staff does. And I'm just asking all of you to please keep in mind, not just my daughter but all of them and I do think Indiana is finally beginning to get advanced in acknowledging what needs to be done, let's just all work together and see what each of us can do.
Thank you very much.
HEARING OFFICER SYBINSKY: Thank you very much.
DEANN WOODFORD
Good morning. My name is Deann Woodford. I'm a social worker and advocate with United Senior Action of Indiana. We are a state-wide senior advocacy group.
I would like to make statements about a lot of the things that have been said this morning. United Senior Action agrees with a lot of the things that have been said this morning, but since we were asked to keep it to three minutes I will just say what I was asked to say here today.
We want to express our thanks to the Family and Social Services Administration for giving this matter significant attention and for providing opportunities for input from consumers and consumer advocates through committee and public hearings.
The six major policy directions outlined in the draft plan sound fine. The myriad of options presented sound fine. But they do not produce a comprehensive plan. They simply introduce possibilities.
We are in the process of producing a vision paper with options. United Senior Action must ask so what.
The CHOICE board, which is designed by state law to recommend long-term care policy for Indiana, presented recommendations to the Governor in September, 1997, calling for a sweeping overhaul of the state's long-term care system to guarantee all Indiana citizens shall have their long-term care needs met with services of their choice in the location of their choice.
In December, 1998, the long-term care dialogue group, established by the state, presented comprehensive recommendations for a new long-term care system to assure that the State of Indiana publicly-funded long-term care system shall provide a full array of long-term care service options for all citizens who need assistance.
These are just two of the sets of recommendations that have put forth a new vision for an Indiana long-term care system that provides and honors consumer choice and focuses on quality.
Indiana's elderly and disabled citizens need not another vision statement or set of principles of major policy directions. We need a commitment from our state government, a commitment that sets a date for reaching the goal that everyone who qualifies for state assistance with long-term care needs will be provided a full array of options, and the money will follow the client to the appropriate service of their choice, and a clear set of benchmarks for achieving that goal.
America put a man on the moon, not because of vision statements, policy directions and options but because John Kennedy made a public commitment and set a date.
Surely, Governor O'Bannon could make a public commitment that by January 1, 2005, no elderly or disabled Hoosier would be forced into a nursing home or other institution because other options are not available, that a full array of options will be available and the money will follow the client to the appropriate service of their choice.
Surely enough information has been gathered, national experts consulted, planning meetings held to know that it is possible to make such a commitment.
That is the commitment that consumers want, that is the commitment that the Supreme Court in the Olmstead decision is pointing us to.
We are encouraged by the application for a Medicaid waiver for assisted living, adult foster care and adult day care.
We are deeply discouraged by the fact that Indiana applied for and received a Medicaid waiver for 10,000 home care slots, including 5,000 for bringing people out of nursing homes, and has done nothing to implement that waiver.
We are deeply discouraged that the administration seems bent on funding additional Medicaid waiver home care by taking money out of the CHOICE home care program, the best part of our long-term care system, rather than funding by diverting Medicaid money for nursing homes to follow the client to the service of their choice.
United Senior Action calls for a recommendation to the governor that starts with the recommendations that the governor finally make a commitment to long-term care choice in Indiana.
Thank you.
DAN STEWARD
I'm Dan Steward, and I'm the Executive Director for Green Acres. I know many people in this room and I have about eight or ten points that I want to make. I want to start out first of all, I want to share that I'm very proud of the job that my staff does in working with people with disabilities from the little babies to the senior citizens.
I've been in this community for four years. I've seen a lot of changes and I think some of the wonderful things we've had is the starting of a program for the elderly and the starting of a program for people that are medically fragile. If you've not had an opportunity to see what our staff is doing in these programs, you ought to come by and see them.
I think you would be shocked. Worse yet, these people make on average about $9 an hour less. I know the gentleman who spoke up here earlier from ARCHER, and you know although we're competitors we're all here for one purpose and that's to make sure that we provide the highest quality service for people with disabilities.
The majority of my staff in that program makes $7.25 to $8.00 an hour. We're proud that our turnover is very low. This past year our turnover in our agency has dropped by 25 percent over the year before. If I could give you this in numbers, my first year here was 118 percent with 124 employees.
People ask how in God's creation can you provide quality service. You know, Peter, one of the real things, and I really appreciate the opportunity to speak, this plan is a great start, there's only one thing that's going to make it work and that's money.
Without money we can sit in here and talk all day and nothing's going to happen. There's a couple of points I want to make about Muscatatuck. I had the opportunity over the years to see the closing of Central State Hospital. It was a disaster. I also had the opportunity to see what happened at New Castle and it was the best thing that ever happened for the people. Families had choices and the money went with the people.
We've got a situation at Muscatatuck like that right now. If we listen to the parents or families -- and these people certainly have the right to choice -- but we need to have a plan that is very clear and concise and not to do something foolish as we did at one point where people are still walking the streets in Indianapolis because of that poor decision. So most importantly, please, please, take a look at the Muscatatuck situation and let's do something similar to what we did in New Castle.
In this there are some major issues that we're concerned about. One is affordable housing. If you're a disabled person, try going to a realtor in Wayne County -- I will say they get discriminated against. We end up in the toughest neighborhoods. These people certainly have the right to have appropriate affordable housing and there needs to be resources there for these people.
Another issue in this community and I think it's the relationship that we have with our other organizations. I know we're very proud about working with Tony Shepperd and triple A's. Our relationship with vocational rehab, our relationship with mental health. We're really doing some really positive things for people with disabilities and elderly people that are enhancing their quality of life and we could do a lot more if we had some additional resources.
Transportation is a major problem. Our organization last year placed 91 people in competitive employment. But try and get to work on the second or third shift if you live in Wayne, Union, Fayette and Franklin Counties. Transportation is a huge barrier. And we need some help in that area so that more and more people can get jobs.
I know one of the real negative things about centers that we operate like our sheltered workshop which we now call a work center, we don't warehouse people with disabilities in there. People have choices to come and go and we're proud to state that our workshop population has dropped from about 135 to under 100 in the last three years. People are working in the community, they are earning a paycheck and they are getting some of the supports that they need. But they need more.
Indiana has an excellent opportunity right now to rewrite the Medicaid waiver. And I had a chance to see Thursday -- I saw the first draft, it was about 142 pages. I got it about 3:30 in the afternoon, I sat there until six o'clock and I read it. One of the things that's missing in that draft is to give people who are developmentally disabled an opportunity to go over to the Medicaid waiver. If that doesn't happen, we're not going to have additional resources, especially under the Title 20 side to pay for the day services that our people have. And it's a complicated issue for people in this room, but I can put it this way, if we can transfer people on day services over to the Medicaid waiver, there's a chance of having between $20 million and $100 million of additional money in the next three to five years for these people to get services.
Think about that, when we currently only have $34 million in the entire system. So I encourage the state to look at that draft and to make that change so that we will have the appropriate dollars. It doesn't cost the government anything, in fact, it helps us, because then you go to 38 percent of that is state money versus 100 percent of Title 20 money, so it's a huge win for all of us.
Our staff really needs wage increases and you know I've beat the drum for the last couple of years. If our staff just got paid what people in the institutions were getting paid, we wouldn't have a problem.
Their average starting wage is over $11 an hour. I can tell you our people do wonderful work, and I'm sure people in the state facilities do also. But there's more and more people in the communities than there are in institutions.
When I started in Indiana in 1972 I remember Westville and a number of the state institutions. I believe that number was around 30,000 people. Now we're down to four institutions. I think it's commendable. People have gotten good services and it's because of organizations like us and others that this has been really positive.
The last point I want to make is about people living in nursing homes, and I'm going to leave you with a story. About a week and a half ago, we have a 48-year-old young man who has lived in a nursing home most of his life. He is a severe CP. This person came to us because of our medically fragile program. He doesn't deserve to live in that nursing home. He needs to be in the community in this kind of a setting.
One of the things that was kind of neat -- he's never walked -- because of the research of our organization that a number of our staff did, he's going to have another opportunity. I wish you could have been in my office a week ago Thursday when someone said, step in the hallway, Dennis wants to talk to you, and here he comes down the hallway totally unassisted in a device, this person was walking. He walked 75 feet unassisted.
And our commitment as an organization is to get people like him up and out and in the community and living somewhere independently. And really what's going to happen here, the buck stops here is money, and I hope the legislature is listening. I know there is a tough situation right now, but there are alternatives that we've addressed and I've addressed today that could make a significant difference in the quality of life for these people with disabilities.
HEARING OFFICER SYBINSKY: Thank you, Dan.
DONNA JENSEN
My name is Donna Jensen. I'm President of the State Association of Adult Day Services. In your handouts you will see it's been called adult day care. Again, in response to consumers making choices, nationally that term has gone to adult day service as it has in Indiana.
We have changed the definition of adult day service. We have gone to three levels of service that have been approved by HCFA, with three levels of reimbursement so we can again address more money for a higher level of service.
There are a lot of national programs that have done many studies about day services. Adult day services are practically one-fourth the cost of institutionalization. It's approximately one-half the cost of other in-home services.
It's a lot of bang for the buck. It's nurses, it's social workers, it's occupational therapists, all those sorts of things for $5, $6, $7 an hour, which is a huge major economy of scale.
Our problem is in the State of Indiana we have less than 1,000 slots in day services. With our current provider we have about 948. We served less than 500 people last year. We only served 42 people on Medicaid waiver. We've had 16 day services go out of business in the last five years. We are down to 52 adult day services. Now, in the State of Ohio, they have 1300 people on Medicaid waiver in adult day services. They receive more than a half million hours, two-thirds budgeted by the federal government, those are dollars too you know, where we have 42 for 1293 hours, something like that.
So I'm here to advocate for adult day service because it is a lot of service for the money and we need to support it. We have 60 counties that have no access to adult day services.
So in your plan you say we're going to educate families so they can make an informed choice to use adult day care and service. Well, if it's not available in 60 counties, we can educate families forever but if they have to go a 100 miles, it isn't going to work. So we need to look at enhancing the service, increasing the availability of service, removing the barriers, enhancing the dollars for that.
Other states have done it. The State of Texas has 10,000 people in day service on Medicaid waiver, we have 42.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Donna.
Next person, please.
TERRY STATZER
I'd like to thank you for the opportunity to speak with you this morning concerning a topic that's very important to me. The freedom of one to be able to choose the best environment in which to live and still be able to obtain funding for the support needed to live as independently as possible in that chosen environment.
My testimony will be in two parts. Part one will be to tell you how my grandmother was able to stay in her own apartment and avoid permanent nursing home placement. Part two will hopefully enlighten you to what it is like to receive calls day in and day out from people needing assistance only to be told they have to go on a waiting list.
My grandmother had been living in her own apartment with her family assisting with shopping, transportation, housecleaning and laundry.
Grandma, at the age of 93 and 94 had two separate admissions into a nursing home for rehabilitation. She was undergoing chemotherapy for bladder cancer. She also had congestive heart failure. Both stays were covered under her Medicare benefits. She did not mind being there too much because, you see, my office was just down the hall from her room. I was the director of admissions and social services for the nursing facility at that time and because of that she felt a certain sense of security.
One year later she again had to undergo more chemotherapy and because I was no longer at that nursing facility, neither she nor her daughters wanted her there.
Because of my position of information and assistance coordinator at Area 9, I was knowledgeable about community services and was able to obtain in-home assistance for her.
Because of CHOICE she was able to have a home health aide, a personal emergency response system, Lifeline, and home delivered meals. She was very fortunate to be able to have CHOICE funding when she did, because shortly after her services began, there was a waiting list for CHOICE funding and it is still going on today.
I am here to tell you that CHOICE worked for my grandmother. It was just the extra help she needed to stay at home safe and happy. Grandma passed away July 17th of last year at the age of 97 and it was a comfort to her and her family that she never had to live out her time in a nursing facility.
As information and assistance coordinator for Area 9 Agency I receive many calls from people like my grandmother who want to stay in their own homes instead of a nursing facility.
The callers, usually family members, are shocked and amazed when I have to tell them there is a waiting list for funded services anywhere from months to years depending on the funding type. These people need help now, not years from now.
Part of my profession calls for me to try to link these callers with other community resources and it is very disheartening when there is not much to offer. I have become very good at being an empathetic listener as they often share with me the horrors as well as frustrations of each individual situation. How can I continue to do my job without tossing and turning each night wondering what will become of these people while waiting for help. I finally realized that I could do the following things to help:
(1) Pray for these folks so they might have the strength to endure.
(2) Continue to look for more resources.
(3) Follow-up with those on the waiting list, see how they are doing and offer any new resource.
(4) Encourage them to speak to their legislators and demand more funding.
(5) And advocate for more funding for in-home services and shorter waiting lists. Number five is why I'm here this morning. These people are not just numbers on waiting lists. They are mothers, fathers, aunts, uncles, brothers and sisters. We were put on this earth to help each other. Please do all you can to allow people to stay in the community in their own homes and not in institutions.
Thank you.
HEARING OFFICER SYBINSKY: Thank you. Next person, please.
ARBY BREWER
My name is Arby Brewer. I don't represent any agencies. I'm an IUE student. I happen to be in the social services area. I had to put my mother into a nursing home because there was not enough funding for her to get the in-home care even though we went through Area 9.
The process that I had to go through at that time, the paperwork that I had to fill out, the different agencies that I had to contact, and believe me I had to contact different agencies -- I hand carried all the paperwork to make sure nothing got lost in the mail -- I think some of you can identify with that.
I don't know how many of you have had to place your parents in a nursing home. The bottom line is funding. There is not enough funding for these organizations.
I go to the nursing home where my mom stays at least three times a week, sometimes four, sometimes five, depends on my homework schedule it kind of dictates that. I have noticed the people's attitude who give the care in the nursing home. They are looked down upon. And those of you who are here who are staff members, or directors, or whatever, service providers, I appreciate your help. They don't make enough money to do this.
I've worked at a manufacturing company for 32 years before I received my accident, and I can tell you I worked hard and long hours but these people in the nursing home who are working with the patients, are working with people, it may be your mother, your father, maybe your aunt, your uncle. Our legislators don't realize this. They seem to be immune to what is actually taking place in the Indiana health care system.
There's a joke on the east coast that a pilot told when he landed in Indianapolis, he said, ladies and gentleman, we are landing in Indianapolis, Indiana, please turn your watches back 30 years. And I did not realize that joke until I had to go through the process of placing my mom in the nursing home.
I also didn't realize the statement that an author made in one of our social work books that stated that the United States is one of the few industrial nations that makes their people poor before they can receive the help that is necessary. And as a nation we should be ashamed, we really should be ashamed.
One last final thought as a representative of the governor, and representatives of health care systems and providers, I ask you to take a look at the people who work for you. Give them the respect that they need so they can treat their clients better. So they can have a better esteem of themselves.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much.
WILLIAM BOOTHE
My name is Bill Boothe. I wanted to speak basically to policy direction number one which states increase consumer choice and enable individuals to receive the types of services they desire in the location that they prefer. And further it says, consumers should have the ability to live and work in the location they prefer with the appropriate supports and services enabling them to do so.
Funding should follow the consumer, not the provider, and should be adequate to meet the needs of all those who qualify. Point number one says, reduce Indiana's reliance on institutional care by working with providers and develop ways of de-emphasizing nursing home care and reducing the population of individuals in state-operated facilities.
I'm not sure we need an Olmstead plan to do that. I just think the administration, this one and the ones before it seem reluctant to be able to figure out a way to do it. For those of you who may not know the Olmstead rule that keeping disabled persons in an institutional setting when they could benefit from community living was a practice of segregating under ADA.
The Olmstead case dealt with persons with developmental disabilities. I'm here to speak for older persons and these are my opinions. Indiana's policy currently is to put Hoosiers into nursing homes. Otherwise why should there be so many there and not as many at home. The policy is to segregate older persons into institutions. Because of that state policy Hoosiers have no choice when they are poor and need long-term care.
They are forced into nursing homes, as this gentleman before me just said. The long-term system in Indiana is upside down. In state fiscal year 1997 Indiana spent $877,796,000 in Medicaid funds on nursing homes. In state fiscal year 1997 Indiana spent $85,482,367 for the statewide In-Home Services Program. In other words, they're willing to spend one-tenth of the amount they spend on long-term care in the home rather than in the nursing home.
There is no waiting list for nursing homes in this state. I've not found one anyway. But there are large waiting lists for in-home services, whether it's for Medicaid waiver program, or whether it's for CHOICE which is now going to support the waiver program, you do find long waiting lists for those.
Indiana perpetuates an inefficient long-term care system that is not supported by Hoosiers. Hoosiers do not support the long-term care system in this state. Indiana ranks among the worst states in the use and expense of its nursing homes.
The current utilization rate for nursing home beds is 77 percent, one out of every four nursing home beds is empty, yet we have to pay for their continued use. Indiana ranked 13th in the percent of Medicaid expenditures on nursing homes for the elderly. Only 12 states exceed or spend more than we do. Indiana ranks 10th in per capita expenditures of Medicaid funds. Only nine states spend more than we do.
The average annual cost for a CHOICE client is $7,396. The average annual cost for a nursing home resident is between $37,000 and $27,000. That was 1997, I suspect it's a little bit more now.
The average monthly cost for a client on the aging and disabled Medicaid waiver is $732.What I see and what I conclude is that Hoosiers want to be able to have a choice in long-term care. There are too many nursing home beds and they are operated inefficiently.
In-home services must become an entitlement service just like nursing home care. Medicaid rates must cover the cost of in-home services. And my feeling triple A's are in the best position to implement a long-term care system that makes sense. Specifically, what I would recommend the state consider is put a moratorium on construction on any nursing home beds. Provide an effective incentive to de-certify existing nursing home beds, that means take them off-line, and combine all long-term care dollars and have the care managed by area agencies. In other words, all dollars including nursing home dollars would be authorized by area agencies.
All long-term care would be case-managed no matter where.
Thank you.
HEARING OFFICER SYBINSKY: Thank you, Bill. Because we're reaching toward eleven o'clock and some people may have to get out, I'd like to ask people who have to leave soon, to come up and testify first. If there is anybody that has to leave right away, please come down.
MAGGIE ALDERSON
My name is Maggie Alderson, and I'm the In-Home Meal Coordinator for the Area 9 Agency. Indiana has committed to provide and expand services to the elderly and Hoosiers with disabilities in the most integrated community based setting possible. Integration and support of persons with disabilities must however include state funding for nutrition to have an effective community-based setting. Persons with disabilities call the agency for a meal and the meal program is unable to serve them because they are not eligible due to the guidelines serving persons 60 and over.
It's really difficult when you have to listen to these people's stories of need and then you have to tell them no, we can't provide you with even a simple meal. And sometimes you know it's taken a lot of courage for these people to call and ask for some help. And then you still can't help them, it's very difficult.
I do have sometimes people who are under the age of 60 who have disabilities but because they live in senior housing they do qualify for home-delivered meals. So I get to see first hand just how much the meals help them to remain independent and stay in their own apartment.
Malnutrition is also a large contributor to longer hospital stays, nursing home placement and death. Providing the service of a meal can prevent this.
I'm also a nurse and I have worked in nursing homes for over 25, 26 years and I know how important proper nutrition is to these people. People are happier and they eat much better when they do stay at home.
The service for the meals for disabled people is available. All we need is the state funding to provide this valuable resource.
Thank you.
HEARING OFFICER SYBINSKY: Thank you very much, Maggie.
BETTY WILLIAMS
Hello. My name is Betty Williams, and I'm the President of Self Advocates of Indiana. That's a group of self advocates who have developmental disabilities, we have about 16 or 17 very active groups all over the state. We're working to get more.
But what I want to talk to you about is that when I went -- I was involved somewhat when they moved some of the residents from New Castle Developmental Center. Myself and a group of other self advocates went in and when we first went in they, the residents, were very upset, very angry, because they heard about New Castle closing on TV, that was the first they had ever heard of it, and they were very angry. They were very scared because some of them had been in the community and they weren't successful in the community, and so they were really scared about what was going to happen to them.
Also, we kept going there and we kept advocating, just talking to them, and talking about the community and things that could happen to them in the community, they became more -- a lot of times they were happier when we went in there and sometimes they were still scared but the last few times we went in they were happy, they were telling us about all the different things that were going to happen, and the fact that some got to choose their roommates and things like that it was accepted a lot easier.
Also, when we went in there they were happy to tell us about all the different things and they wanted us to come there and talk to them.
At first, they didn't want to talk to us because they didn't know us and they were scared. That's my story on that.
The fact that I think institutions should -- how should I say it -- it's my belief that people should live in their own home. They should have a choice to live in the community but also they should be safe in the community. You have to have safeguards.
Also, people with developmental disabilities should have control. Control over the choices they are able to make, because we can talk about choices but if they don't have control, it really doesn't mean much to people with developmental disabilities. I think it is better we have choice and control. I think that's important for families too.
I like the ideas a lot of people have had about having advocates and then having like foster families and things like that because a lot of people who are in institutions they don't have family, and to me that's a good idea.
Thank you for the opportunity to make my comment today.
HEARING OFFICER SYBINSKY: Thank you very much.
DERRICK QUALLS
I'm Derrick Qualls. I didn't intend to say anything today when I came in but this lady just a few minutes ago talked about malnutrition, and people talk about their staffing in nursing homes, I guess I didn't want to sit and listen to this any more without saying something about it.
My father had a massive stroke and he was in a nursing home approximately seven years. This wasn't in the State of Indiana, but I'm sure it's not a lot different here. We talk about understaffing, underpaid, I'm sure these people did the best they could with the time they had.
But he died from not a thing in the world but malnutrition. He never was a big man. He weighed probably 135, and when he died he was less than 70 pounds. He didn't have any control of anything.
He had trouble eating. They'd feed him two or three bites and he'd say that's enough and they'd leave. And I know that a person laying there can't move or do anything doesn't need as much to eat but two or three bites is not enough. This is not a thing in the world but understaffing, they didn't have enough time to feed the people that were on their schedule to feed.
I blame my sister for that, she lived within walking distance of the place, and I told her if I lived there I would feed him once a day at least. She said she wasn't going to do that because they depend on it. Well, maybe so, but I've always been thoroughly convinced that malnutrition was a big factor in his death and that was because of being understaffed and underpaid.
MAN IN WHEELCHAIR ON VENTILATOR
Now I need a flashlight. They put the wheelchairs in the dark area of the room so maybe you won't notice us, but hopefully I'll say something that you might notice.
Your policy direction, again number one, I believe Mr. Boothe spoke about it earlier, it sounds terrific, it sounds wonderful, it's got all the right words about individual choice. But do you really know what that means?
That means FSSA has to call me up at their convenience and ask me what I want, where I want the services to be delivered, and I'm not going to tell you how much money I need, I'll let you guys tell me how much money I'm entitled to. But the point is you don't do that in a group meeting.
If you are promoting the fact that you want go into the needs of individuals into your planning that means you have to talk to me or I have to talk to you, it doesn't mean you get a focus group of people who are somewhat like me to decide where I want these services.
You're saying this and I hope you're meaning this but this is what you're going to need to do, control is the issue. And I'm fortunate enough that I'm in a position where I can control my life. I can control who serves me. I can control who I serve. It's not just a one-way street.
In the last 10 years, the last 12 years, when I've needed the respirator to be able to survive for longer than 10 minutes, I've been fortunate enough to have benefits from a previous employer that has paid out a million dollars in the last 12 years.
Do you know what it's like to have somebody pay a million dollars for you, it's kind of nice and I'm grateful for it. Now that million dollars is as much as they will do, so I have applied for Medicaid and have been accepted. I'm not sure they know that you're going to pay me a million over the next 12 years.
I always wanted to be a major league baseball player and this is pretty close, a million dollars over 12 years. I'm grateful for it. But would you rather spend a million dollars on me or $800,000 on me? If you let me control the services that I get I can save you, the State of Indiana, probably $200,000, if I can control it. Can you use that money to help somebody else?
I may qualify for it and if I get it I'm probably going to use it. If you say we have $800,00 that you qualify for, I can get it down to $600,000. Let me buy my supplies, like the wheelchair place to get new tires they're $120 a piece, if we go to a bike shop they're $20 a piece.
Why doesn't the State of Indiana split that difference so he's rewarded for being a good steward and the state is rewarded by people by us who are in a position to make a decision that will help control costs.
One more thing I'd like to say is in applying for Medicaid I have to lower myself. I sit pretty low anyway. It's hard sometimes to get any lower but I've got to encourage my wife not to work, she's going to do it anyway. I'm not going to let the state do that to us. We will take whatever loss there is on that. I think the income guidelines are less than $800 a couple.
Well, the federal government has provided Social Security, I thought that was to be my benefit not to my detriment. So I have spend down even if nobody in our house works.
One other thing, you are penalized as to how many vehicles you have. I have three vehicles in my household, we have two drivers. I can tell you that those three vehicles are needed and I can explain that, but their regulations are going to put me in a position where I have to tell my son that he can't have a car and he can't have a job until he gets old enough, until he gets out of my assistance group.
My family has enough togetherness as it is, we don't need the state to tell us that my 16-year-old son is responsible for paying part of my healthcare. He wasn't even born. Neither of my children have a choice in this. At a time when we're tying to do anything we can to put some work ethic into our younger generation, if he learns at 16 it's better not to work, I think he's going to put that into practice and make a career out of that.
Thank you.
HEARING OFFICER SYBINSKY: Thank you.
TONY SHEPARD
My name is Tony Shepard. I'm the Director of the Area 9 Agency here in Richmond that covers the counties in East Central Indiana and I have some comments that I wanted to make.
First of all, though, in listening to the comments and knowing the folks in this room today, I really look out and, Peter, I know you've got the ear of the governor. You're hearing the solutions to some of our dilemma and it's going to be a lot of hard work, just because you hear the solution doesn't make things take place.
But the comments that are coming forth, the solution is already here and the solutions are at the local level.
They are not going to come out of Indianapolis. That's one of the critiques I have of this plan in a number of parts and some of the specifics of the plan, which they say it's a plan in progress, a plan in work which is wonderful because the great tragedy would be to come here and say this is the plan, so I appreciate this being a plan that we can work with.
There are a number of areas that just has the state biasness to it and I will be the first to admit that I have a local bias. But there's comments in there such as -- now, voc-rehab is a wonderful program. We all support it totally and voc-rehab is doing the best they can do as a state program out of Indianapolis, it's a state program.
And then I read comments about the case management program, now the case management program has been researched and evaluated by IU and by the Hutson Institute, which is one of the most conservative groups in the whole world, they hardly ever look at social services program, and it has been pointed out that it does an unbelievably good job in working with people to help them find alternatives to institutional care.
Yet the comments in the state plan it doesn't say case management is doing a wonderful job based on the resources, it just points out negative things. I think that's -- I'm just giving that as an example of state biasness.
We have to be careful as this plan develops that it doesn't become a plan where they come here and pick up information and go to the other side and pick up information and then that information gets sorted in such a way that somehow the solution is going to come out of Indianapolis, because if that's the way it works there will not be solutions, there will just be further problems.
Some points I want to make to the governor's comments, and we always have to start at the top. Whether or not we remember it, we need to remind ourselves that Peter works for us, he's our employee, the Governor of the State of Indiana is our employee, we have to tell these people what it is that we want them to do as our employee.
The governor makes an interesting comment, he says, we want to put people in the least restrictive setting. Wow, that sounds good.
Why can't he say, we want to put people in a non-restrictive setting. My goodness isn't that a different way of looking at things. Now here's some of the ways to accomplish that.
The providers, agencies such as ourselves that manage a single point of entry, we need to be accountable for sure, but we don't need to be accountable to a set of rules that come down from the state, we have to be accountable to people here locally.
Peter, if you guys come up with a tremendous checklist that once we meet 100 percent on that, it points out that we're doing a good service. We'll be like a nursing home, we will not be providing a good service. We'll just be scoring good on a checklist.
What has to happen is the accountability has to be here at the local level. When I go into the supermarket and I see Dave and Dave comes up and says Tony this is not working right for me, that's accountability.
Accountability has to be at a local level, it cannot be some checklist that comes out of Indianapolis, that says you get all pluses on this, you're doing good.
We have to have a single point of entry. It will be wonderful to have multiple access points for all sorts of opportunities to access this new set of services here for Indiana. Access points will be tremendous, they should be in a lot of locations, but there has to be a single point of entry to manage these dollars and services to be sure that there's accountability, to make sure there's fairness, and we think we have the model already.
Its a proven model. It's been here since 1992 and before that, being the area agency system. We have to have local eligibility determination. And we have to have maximum flexibility. We already have a model for this, the CHOICE program, which is a state-run program that the State of Indiana has chosen not to put a lot of rules and regulations on.
It provides a lot of these things. Where as the Medicaid program which is controlled much more so by the federal government but the state -- in its attempt to try to come up with a good program -- put lots of things in there that didn't need to be in there.
We actually had a group, OMPP out of Indianapolis which is actually a funding mechanism setting policy for the program.
It just didn't make sense. Medicaid is the funding source. It should not be setting up a program. The program should be set up at the local level and meet the local needs.
I'll bring my comments to a conclusion here. As you came in the driveway here you ad a choice of going east or west, east you come into Indiana University East. West you would have gone into a parking lot, and there's a building for sale. You know what it is it's a vacant nursing home, went out of business this year.
I was doing some calculations based on some dollars you pointed out earlier. They had 30 people, over a million dollars is no longer being spent in that facility to care for some folks that were using that.
Where is that money? Why didn't it go into community service? The place is closed, where is the money? Well, we know where the money is at it went to some other nursing home. As pointed out earlier there's no waiting list for nursing homes and there's tremendous waiting lists for the CHOICE program or the Medicaid waiver program. People aren't given a choice for their long-term care needs.
Finally, the meals on wheels program that we run locally. We manage that service. We determine the eligibly. We determine the level of service. We allocate the resources and we pay for the service. If you look at your watch you will see that it's about 11:20, if you call our office right now, and say I have someone that needs the meals program there will be somebody there to do a basic screening over the telephone, and if the screening goes well, you actually have a need, tomorrow at twelve o'clock that meal will be delivered to your front door, and there will be somebody checking up on you to see if you are okay. That's how a local controlled program can operate.
I'll guarantee you if that were a Medicaid or state run program you would be talking -- 30, 60, 90 days later before you got that meal, and that's why we've got to have local control and we mean all local control and not the semblance of local control.
My very last comment is in real estate. They say there's three important features in determining the value of real estate -- location, location, location. Peter, I would say the value of this plan, once it's developed fully, will be determined by three things -- local control, local determination, and local flexibility, that will determine the value of this plan.
Thank you.
KATHY BRIDGEFORD
I'm Kathy Bridgeford, and I'm with the Area 9 Agency. And I basically want to talk about the administrative side. I am the Director of Administration there so I understand that part of it. I first would like to just congratulate Indiana for what a job they've done. I've been with the area agencies for 24 years and I know from the past year we've come a long way. Ten or twelve years ago, people didn't have a choice.
They had to go to the nursing home and today people do have a choice but we still have a long way to go yet.
In order to provide and expand those services to the elderly that the plan talks about, there has to be a single point of entry, and I believe the area agency is that entry.
At keeping everything at the local level. The area agency provides a close relationship with their provider, which allows problems to be resolved quickly and review complaints immediately instead of having several printed pages to review as the state has to review at their level.
We can get a resolution much quicker than the state can. We also have a system for quality assurance. Our providers are paid within two weeks which allows providers to meet their payroll in a timely manner.
Other agencies don't pay for 60, 90 days. With so many providers going out of business due to Medicaid changes this is very important to the providers. Providers appreciate the flexibility and the local control. With adequate funding such as the new family caregivers money and diagonal funding that could come our way, area agencies can expand the services and provide additional services and allow people to have some more choices than they have today.
So in closing I would just like to say that the area agency can give the client the choice that the plan talks about but we have to have additional funding to do that.
HEARING OFFICER SYBINSKY: Thank you very much.
ELLEN SOMERS
I'm Ellen Somers. I speak as a Director of the Home Care Program at the Area 9, and I speak as a daughter who returned to this area after 20 years to be close to elderly parents in need, and I speak as a person with 15 years prior experience as the coordinator of the community service single point of entry in a geographically large rural county in the Adirondack Mountains in New York.
In my current position, I have worked closely with our information and referral specialist and CMs and I know what can be accomplished with our current services. I have seen a CHOICE referral with severe COPD, a fractured leg, and back problems, with available funding, assigned to a CM on Tuesday, the assessment visit made on Wednesday, the doctor visited on Thursday and a prescription for a lift chair and bids collected, a lifeline and home health service authorized on Thursday. This is what we are capable of accomplishing locally when we have the funds and the guidelines and the local authority to proceed.
Social services is filled with people who have chosen this field because it is a caring profession, and no one is more frustrated than a caring professional who does not have the time to do everything he or she is capable of for everyone he or she is responsible for.
Time is money and a well-trained staff needs a streamlined process and the funding available to allow them to meet the special needs of each resident. I think our community needs to be able to take the system we have and make it unique to our community's needs.
As a society, we tend to fear aging and disability and many people deal with this by avoidance until we are forced to confront it for ourselves or our family; this sudden need may actually be a crisis; at the least it is something foreign and unfamiliar.
Speaking from personal experience, nothing is more frustrating to an already stressed person seeking direction and information than to be referred from person to person, place to place.
A single point of entry for community options is a vital community service. The triple A's already have an experienced record of providing information and referral, but the entire community must buy into this concept and share in assuring all the information is there, and everyone from the bank to the grocery store needs to know that this resource exists and how to access it. And everyone needs to know this before they actually require a service.
The reason nursing homes are so appealing to stressed families is not because they want to put their loved one away some place but because that facility offers security in a packaged deal, one stop shopping. The fragmentation existing in community services does not offer a concerned person that same feeling.
From my past experience in New York, I suggest that each community must become involved and tailor their programs to their unique circumstances. This is where community creativity can provide unimaginable opportunities, if the system allows this.
We locally need the dough but not the cookie cutter. But by the dough, we obviously need the funding but we also need some stable framework.
For example, we need standardization in definition of community aide services and the actual training requirements, not just for BDDS or BAIHS but also the Department of Health. At the state level these entities need to hammer this out together and provide one set of standards that can apply to all community programs. We need to look at Medicaid spend down in relationship to home services.
Indiana has the opportunity to serve residents efficiently and effectively in the community where they wish to live.
PAUL REGISTER
Good morning. I am Paul Register, the local nursing home ombudsman for Area 9, which includes Fayette, Franklin, Rush, Union and Wayne Counties. I have been the Area 9 ombudsman since 1996. I want to thank the Family and Social Services Administration for the opportunity to be with you this morning.
I noticed in the information that was sent out for this meeting that one of the concerns that you have is the conflict of interest that may arise when the same person is the local ombudsman and a case manager.
The only responsibilities that I have at Area 9 are those related to the Ombudsman work. The final rules for the long-term care ombudsman program that went into effect April 5, 2000 says under conflict of interest, 460 IAC 1-7-13 Section 13(a), an individual shall be free from conflicts of interest which includes (8) currently performing duties or providing services other than those required in this rule that are in conflict with or that may create a conflict with, the duties required in this rule.
That section includes being a case manager. The state ombudsman is taking action to ensure that rule is being followed.
The ombudsman program needs to be expanded to adequately cover the needs of nursing home residents and in-home care. The problem is funding. The recommended ratio is one full-time ombudsman for every 2000 nursing home beds. The ratio in Indiana is one full-time ombudsman to every 5000 beds. An ombudsman cannot do the job as mandated by federal law when they have responsibility for so many residents.
The panel is aware that there is no funding for in-home care ombudsman. The state ombudsman committee set a budget for funding in the in-home care ombudsman program but it was removed before it went to the legislation for consideration. There are nursing home residents and in-home care clients that are not getting the help they need and are entitled to because the ombudsman program is not sufficiently funded. The integration of persons with disabilities into the community is an endeavor that needs to be implemented in the state.
However, if integration takes place without proper advocacy and complaint systems in place, it will be a huge disservice to those who are not able to speak for themselves.
Thank you for allowing me to express my concerns to you this morning.
HEARING OFFICER SYBINSKY: Thank you. Is there anybody else?
I would like to say again thank you very much for coming out and providing your input to us. And again, remind you that we are glad to take any written comments or testimony that you would like to send us before April 27th. So please keep in touch. We will keep in touch with you and try to work with you toward our future to make it a realistic one that will help people with disabilities be better integrated into their communities.
Again, thank you very much for coming.
(Meeting ended at 11:45 a.m., on April 17, 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 16th day of April, 2001;That said hearing was taken down in stenograph notes and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 27th day of April, 2001.
_________________________
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires:
January 27, 2009
