COMMONWEALTH OF PENNSYLVANIA OFFICE OF LONG-TERM LIVING PENNSYLVANIA SENIOR CARE AND SERVICES STUDY COMMISSION

PUBLIC INPUT MEETING:1
COMMONWEALTH OF PENNSYLVANIA OFFICE OF LONG-TERM LIVING
PENNSYLVANIA SENIOR CARE AND SERVICES STUDY COMMISSION
PUBLIC INPUT MEETING
Stenographic record of meeting held at Rutherford House, 3300 Parkview Lane Harrisburg, Pennsylvania
Thursday October 23rd, 2008 9:15 a.m.
SHANNON MANDERBACH REPORTER-NOTARY PUBLIC
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MS. SULLIVAN-MARX: Good morning. My name is Eileen Sullivan Marks. I’m chair of the Senior Care and Services Study Commission. Thank you for coming today and welcome. Let me just give you a sense of the proceedings for today so you have a sense of what we’ll be doing.
The representative number of commissioners are up here. We have a court stenographer to our left who will be recording the dialogue and the testimony and comments for the morning.
What I would like to do is introduce our charge to you, have the commissioners identify themselves and a little bit about their background. Following that, we will have a slide show. You have handouts at your seats or when you checked in which cover an interim report on current senior care services in Pennsylvania and some demography.
After that, we will go into — I understand we have about six individuals who have registered for formal testimony. During that time, the commissioners will ask questions and have a bit of a dialogue.
Then we usually take a break because we are here for three hours. Then after the break, we can come back and open it up to general questions that we have handed out ahead of time for people to think about of what relates to our charge and what we want to do. Thank you.
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As I mentioned, we are the Senior Care and Services Study Commission which was put together under Legislative Act 16. We began our charge with appointments May of 2008. Our charge has been — and let me just read you the four basic charges which you may have seen on the web site.
One, to review current care and service offerings of resources available to the Commonwealth for persons over the age of 65 years. Secondly, project future needs for the various levels of senior care and services through 2025. Third, evaluate the ability of the current assessment and delivery systems to meet projected service needs. Lastly, project resources necessary to meet the projected need and make policy recommendations on how best to meet that need.
I’m going to pass the microphone down to my right and we will take it forward and introduce ourselves.
SECRETARY RICHMOND: I am Estelle Richmond. I’m the Secretary of the Department of Public Welfare.
MR. OKDO: Emmanuel Okdo, one of the members of the commission. I’m a physician and mostly my practice is long-term care. I see patients at home, in nursing homes and also at the hospital.
MS. SULLIVAN-MARX: As I mentioned, I’m Eileen Sullivan Marks. I’m a nurse. I am an associate professor of nursing and associate dean for practice at the Penn School of
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Nursing in Philadelphia and I’m a Phillies fan.
MR. MULHOLLAND: Good morning. My name is Graham Mulholland. I’m Executive Director of the Developmental Disabilities Council here today representing Commissioner Florence Reed.
MR. MURPHY: Good morning. My name is Joseph Murphy. I work for Masonic Villages. I’m here today representing nonprofit providers of health care services.
MS. REESE: Good morning. My name is Daneen Reese. I’m the Executive Director for Pennsylvania Assisted Living Association. In my past life, I was the discharge planner for Moses Taylor hospital for 22 years. On the way down, I did hear that the red cars for some reason weren’t selling at a local dealership which they were surprised at because the Phillies won.
MS. SULLIVAN-MARX: One of the things that wasn’t clear — we had public hearings earlier this week in Western Pennsylvania — is that the commissioners are volunteers. We have been appointed by the Governor after the legislation was enacted but we are all volunteers.
There are staff from the Office of Long-Term Living who are staffing our facility, Antoinette Wallet in the back who was greeting you when you registered and Robert McNamara and David Gingrich.
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What I’m going to do is ask David to come up now and present the slide show. Are there any questions before we begin about the proceedings for the morning?
(No response.)
MR. GINGRICH: Thank you. I’m David Gingrich with the Office of Long-Term Living, Office of Policy and Strategic Planning. I’m going to be giving a brief overview of the interim report put together by the commission on the current senior care and services available in Pennsylvania.
Here are just some demographics about Pennsylvania. We currently have the third highest share of individuals over the age of 65. The majority of the over 65 population are female and 52 percent of the population are 75 or older. Two-thirds of Pennsylvanians over the age of 65 live in urban areas.
This chart shows an estimation of the cost for an individual male and female to own a home without a mortgage, to rent a one-bedroom apartment or to own a home with a mortgage. The orange dots indicate the median retirement income. As you can see for four of the six measures, the median income in Pennsylvania is below the estimated required amount of income.
This chart is a comparison between Pennsylvania and the United States. It shows the number or the percentage of individuals with a self-care disability, a disability that
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limits activities and individuals with fair or poor health status.
As you can see, Pennsylvania is very comparable to the rest of the nation. This chart shows the primary payor for all health care spending for persons over the age of 65. Medicare makes up almost half of all health care spending for individuals 65-plus, just over 49 percent. Out-of-pocket spending makes up a significant portion, about 15 percent, and private insurance pays for about 16 percent.
This chart shows a break down of basically what that funding goes towards. Thirty-seven percent goes to hospitalization. An additional 20 percent goes to physicians or clinical services.
In addition to the formal expenditures on long-term living and health care services, there’s an estimated roughly 1.3 million informal caregivers which provide about 1.3 billion hours of informal care. That is an estimated value of between 11 and a half and 14 and a half billion dollars.
There are also over 700 nursing facilities in Pennsylvania with just under 90,000 licensed beds and 73,000 of that 89,000 are over 65 individuals. That’s roughly 4 percent of the entire population for over 65 Pennsylvanians.
This graph provides a breakdown of nursing facilities in the number of facilities and also the beds. It
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shows county and state operated for-profit and nonprofit facilities. The ratio is fairly consistent. The big difference is county facilities tend to have more beds.
We said that Medicare was the primary payor for health care services for the over 65 population. This graph shows a breakdown of the primary funder for nursing facility services.
In contrast to the earlier chart, Medicaid makes up the significant portion of just under two-thirds. In contrast, Medicare only provides for 13 percent of nursing facility expenditures.
In addition to the nursing facilities, there are several other types of institutional services for individuals over the age of 65. The state has several intermediate care facilities for mental retardation, psychiatric hospitals, personal care homes and domiciliary care homes as well.
Additionally, in July of 2008, Governor Rendell signed legislation establishing assisted living facilities. Also, this year he signed a bill that would license home health care agencies.
Some of the non-residential services available for individuals over the age of 65 include home health services, adult day services and senior centers. There are currently over 300 certified home health agencies in Pennsylvania. There are
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over 250 adult day centers and over 6,000 senior centers.
This graph provides a breakdown of home health workers or direct care workers per 100,000 individuals over the age of 65. As you can see, Pennsylvania has a higher average of home health aides and nursing aides but a slightly lower average than personal care and personal care agencies in the United States.
This chart shows a comparison between the United States and Pennsylvania to the average wage for the direct care workers. Again, Pennsylvania is fairly comparable to the rest of the nation. The one area where we are slightly below the national average is for all health care practitioners.
The Pennsylvania Housing Finance Agency is a significant funder of housing for Pennsylvanians over the age of 65. There are just under 800 developments with over 50,000 apartments. Additionally, there are Shared Ride and free transit programs for seniors over the age of 65. The area agencies on aging provide that single point of entry for information to access to services.
Medicare is the primary payor for individuals over the age of 65 and roughly 90 percent of all Pennsylvanians age 65-plus are currently receiving Medicare services. Over a third of the Medicare beneficiaries are enrolled in the Medicare Advantage Program and 13 percent of the enrollees in the
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Medicare Advantage Program are also enrolled in special needs plans.
In addition to Medicare, Medicaid provides for roughly 12 percent of Pennsylvanians over the age of 65 who are receiving Medicaid or medical assistance services. The projection is that over 270,000 seniors will be receiving Medicaid services. This makes up roughly 14 percent of all medical assistance enrollees.
Now, medical assistance also provides for home and community-based services. The largest home and community-based service for individuals 65-plus is the Aging Waiver Program.
Pennsylvania is one of the national leaders in Life Services. There are currently Life sites in Pennsylvania with six in development.
The state-funded Options Program is similar to the Aging Waiver and provides assistance for just under 600,000 individuals over the age of 60. In addition to that, the state has PACE and PACENET programs which provide for pharmaceutical assistance for individuals over the age of 65. Another home and community-based service available is the Family Caregiver Support Program.
Two areas that the commission has some trouble getting Pennsylvania specific data on was around the total
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estimate of health care costs. There is very good national data on this but finding state specific data is somewhat limited. Another area was on projections of assets and pensions. It was hard to measure wealth of individuals over the age of 65. Thank you.
MS. SULLIVAN-MARX: Thank you, David. I think we will have time to reflect on this information as we go through the testimonies, plus the question and answer period. I’m going to take this time now just to move ahead with the individuals who have preregistered for testimony. Antoinette will call out who is first, second and third.
MS. WALLET: Shirley Shirk, President of Keystone Lancaster.
MS. SHIRK: Hello. My name is Shirley Shirk. I’m president of the senior citizen deaf organization in Lancaster called Keystone Deaf Senior Citizens. We have many in our attendance of senior citizens, many in our membership but the people that have come here today is a good representation.
It is so important that I share with you the experience that I see. There are deaf individuals in nursing homes. They are there and they can sign. Their is mind well but they are completely isolated because everybody else is hearing and no one else can sign.
Because they are completely isolated, they can’t
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talk about anything of interest, the weather, how dinner was and they become depressed. The longer they go without communicating with others, the more depressed it is. When they get deaf visitors, they cheer up and their health improves.
We have individuals out there alone all over South Central Pennsylvania. That is not something I am looking forward to in my future in my old age shall I need that kind of care.
It’s important for us to set up a place where deaf senior citizens can go, hospice, nursing care, assisted living, so we can talk with one another just like hearing people do, instead of sitting around being sad that we don’t have the same rights as everybody else. Can’t we talk with other deaf people in our old age or are we resigned to be alone and depressed?
I’m asking you guys to help support our cause for our deaf people as we age. We need ASL, American Sign Language, involved in our long-term care. Doctors that come to visit don’t necessarily need an interpreter to sign, but the nursing care need to.
For any kind of assisted living, there’s got to be some sort of interpreter in between. That’s one of the needs. If somebody is trying to pass out medicine, there is no communication. What are those pills for? What are the pills
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for? Medicine is to help your health, your heart or your blood pressure or this or that. You have to have an interpreter in that facility for the nurses or the doctors.
I’m sorry that I’m not articulate enough to put this in pretty words, but you have to know my heart. You have to know that this is important for our deaf community. It could be a wing on an already established care facility just so we could be together and talk with one another and not be isolated and given to depression for lack of having a conversation with somebody.
I wish that I could explain what I was feeling. I wish I could articulate that. I really hope that you decide to support what we have come up with. Thank you.
MS. SULLIVAN-MARX: Comments, questions from commissioners, anything in addition?
SECRETARY RICHMOND: Frequently, people are concerned about segregation on disability groups that can only interact alone. I think it’s important that we recognize that deaf is a culture and we need to recognize the culture aspects.
Therefore, recognizing the fact it’s a culture and that the communication is built on having other people within that culture live and work and socialize together and that having a facility that may have a wing or have an area for people within the deaf culture becomes very important.
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It is the same thing as segregation of a community. There also has to be a choice so there is not just one of something. There has to be at least two so that people have choice.
MS. SHIRK: That’s right.
MS. SULLIVAN-MARX: I’m wondering, in the long-term care work today, there are a number of culture change movements called Evergreen and there’s a number of nursing home cultural changes and not just for individuals with certain abilities or disabilities, but for residents who live there to identify the community and the culture in which they want to live.
Has the ASL community been involved in any of those pioneer project or Evergreen nursing homes?
MS. SHIRK: I don’t really know the answer to that question. I just know how important our deaf culture is to us, our quality of health and all these things and the services that we need to be able to talk and communicate.
We are active but I can’t get those specific examples. We could gather together in our old age and attend activities together. I know there are deaf nursing homes across the country.
There is one in Columbus, Ohio. It is a very big one. It’s a retirement community, a nursing home. Many deaf
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residents live there. Pennsylvania needs one like that. That’s my desire for Pennsylvania. I like Ohio. I like that idea but Pennsylvania is my home. I want my money to stay here at home. I want to support my home. This is what’s important to me. I love it here.
Senior citizens in Pennsylvania — soon I’m going to be 65 years old. I do not know my future. I do not know where I’ll end up, the frustration I will have. Am I going to be alone at home? It’s so painful. I don’t even want to think about it.
I thought I was a human being equal to those who can speak. They talk to one another. I would like to talk to others, too. I see others laughing. It makes me sick at my belly just knowing that there are individuals out there that are completely alone. I hope you hear my passion. It’s important. Senior citizens need the culture and the support of one another.
MS. SULLIVAN-MARX: Thank you. Maybe afterwards I could share some information with you about the Evergreen movement because I think that would be a nice partnership for people who are looking for the same need of change in the culture.
MS. SHIRK: Thank you. I appreciate it. What is evergreen?
MS. SULLIVAN-MARX: It’s a national movement and
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pioneer projects. I think the headquarters are near Rochester, New York.
MS. SHIRK: Thank you.
MS. WALLET: Next we have Mr. Dan Snyder.
MR. SNYDER: I would like to thank the commission for the opportunity to come and speak to you today. The past ten years have brought much attention upon the needs and wants of consumers in the provision of support of services. This attention includes an emphasis on the ability to receive support of services at home or in a community-based setting.
Why do older adults wish to avoid nursing homes and personal care homes? Two major reasons for their lack of appeal are oppressive regulations and a reimbursement system that have ignored the consumer view since their inception.
This fact places providers in a difficult position of attempting to meet consumers varied preferences while complying with regulations and an inequitable and arbitrary funding system that has failed to meet the actual cost of care for decades.
For example, the capital costs for nursing facilities under the Medicaid program are capped at one-tenth of the actual cost and have been for over 20 years despite numerous and costly increases in regulations during that period of time.
For example, Countryside Christian Community has
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plans to replace their nursing facility which will be 50 years old next year. That new facility, though it’s not a Taj Mahal, will cost $300,000 a bed. The capital reimbursement cap is about $26,000 a bed and has been that for many years. Is there any wonder why most nursing facilities have not materially altered their physical plants to meet the expectation of today’s consumer?
Another example are resistant regulatory authorities that, for example, prevent a capable resident of self-transfer in and out of bed by refusing to permit an appropriate bed rail.
Overregulation has ignored consumer preferences while unnecessarily inflating the cost of long-term and personal care services to a point unaffordable, for most, and resulting in a service delivery system that no one wants including providers, consumers and the government.
Regulation and reimbursement must be rewritten to reflect the consumers’ view with funding based on the actual cost of care based on current regulations. Comprehensive and equitable assessment of service needs is another necessity for senior services.
Fairly allocating public and private resources to each service setting requires a single, comprehensive assessment tool that applies payment for service providers based on the
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actual care needs of the individual and the services being offered.
For those choosing service in a home or community-based setting, personal care home or assisted living resident, reimbursement of those services should be based on the Case Mix Index to insure an equitable distribution of public funds between service settings based on the actual care needs and the services that are available.
If nursing eligible persons can appropriately be served in their home where a limited access to services and support exist, the reimbursement should reflect the absence of services that are unavailable or not provided in the home or a community-based setting such as physical plant, complete meal services, 24/7 staffing, activities programming, licensed nurses, disaster assistance and so on.
The current inequities in funding home and community-based services compared to other settings is a wasteful use of public funds and reduces the ability to provide full entitlement access for home and community-based services commonly expected of Medicaid programs.
As we look to the future and the tremendous financial burden soon to fall upon the long-term care delivery system by a growing older adult population, each individual taxpayer should be encouraged to carry their own personal
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responsibility in preparing adequately for their own long-term care needs.
To this end, I suggest a broad-based insurance product be developed that cover at least the average expected utilization of long-term care services beyond those covered by Medicare including both community and institutional-based services expected over one’s lifetime. This product could be available in both a government based and low-income supplemented version along with other comparable privately-based products.
Individuals that choose not to devote an established minimum percentage of their adjusted gross income toward coverage of this type would face an equivalent tax and penalty, the proceeds of which would be applied towards the Medicaid program to gain matching federal funds.
Such a program would permit individual responsibility toward one’s own long-term care needs while lessening the burden upon the Medicaid system, thereby allowing adequate funding of Medicaid services based on actual costs.
In conclusion, any changes in senior care services must reflect and address the viability and need for services at every level of the continuum and fair and equitable funding based on actual costs for each of those service levels.
The continued application of arbitrary funding caps upon some and overfunding to others without regard for the
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service level regulations and the actual costs of care provided will further discourage viable capital investments leading to complete failure of the long-term care delivery system at just a time that baby boomers will dramatically increase the demand for services. Thank you.
MS. SULLIVAN-MARX: Thank you for your comments. Any questions, comments?
MR. OKDO: My name is Emmanuel Okdo. I am a physician. I am involved in long-term care. We are trying to get elderly people to retire and stay at home. I think we have the highest number of Life Programs. I know Life Programs and what they do is.
I am a medical director for programs. There is an assessment where we go to the communities and take an assessment and sit down with them and review the care and bring you to the senior care center. We have all the medical services at that center. It is a clinic.
We have physical therapy. We have a dietitian. The clinic manages all your health care needs. We assess you, give you your medications. We write it out to a pharmacy and we take care of your medications. We get it from the pharmacy and get it back to your house.
The home care team comes and assesses your home and sees if there are adjustments you need to live. If you need
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wheelchair access to your house, we will provide that.
Also, the clinic manages all your health care. If you need an assessment, the van would come to your house and take you to the appointment and consult with the doctor.
They will provide home health aides to your house. They would get you ready in the morning, bring you to the center and get you back out and provide services to you. I think what we encourage is to get programs like this and go in that direction.
MS. SULLIVAN-MARX: I think related to what you’re saying is that in the Life Programs, it does end up being cost based because it’s a capitated model. I’m familiar because we have one at Penn School of Nursing as well in Philadelphia.
What you’re saying about the cost based — maybe you can give us a few more examples of the underfunding versus the overfunding and balance. Since in the Life Program it’s capitated, we, as the clinical team and the social work team and the staff, decide how to spend funds that’s consumer based.
Now, not everyone is going to enroll in a Life Program because you need the support to remain in your home and you enter a network and not everyone will want to do that, but many do.
But I’m wondering about your thoughts about in your facility and this cost-based kind of product where it’s to
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eliminate the underfunding and overfunding, how you could see some of the integration of the services.
We had a lot of discussion earlier this week about the integration of the human services, the social services with the health services. Maybe you have some comments on that or some specific examples that would be helpful to hear.
MR. SNYDER: In my concerns, I was mostly referring to the PDA Waiver. It’s my understanding that funding for that program is based on 80 percent of what it would cost to the nursing facility.
Many times people receiving services through that program are not receiving the full range of services that they would receive in the nursing facility, yet they are getting up to 80 percent and it’s not equivalent in that manner.
If some research was done to look at the Case Mix Index for those in the PDA Waiver Program, my guess is the average would be much lower than the average for nursing home residents. And because of that, in a proportionate way, funding for that waiver program should be reflective of that.
Without that, they are getting a higher degree of cost-based funding, the nursing facilities are. It’s really negatively affecting nursing facilities to the point where we can’t do what we need to do by regulation.
MS. SULLIVAN-MARX: Thank you.
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MR. McNAMARA: With regard to the 80 percent, there is what’s called an aggregate cap on Aging Waiver services so that cost for the Aging Waiver would not exceed 80 percent of what it cost to serve someone in a nursing home.
However, when the costs are broken down, the average yearly cost to serve somebody in the Waiver Program is approximately $21,000 a year, while the average cost to serve someone in a nursing home for just federal and state funding, not private funding, is approximately $52,000 a year. We believe that the Aging Waiver is a cost saver with regard to comparison to nursing home costs.
With regard to your point on Case Mix and acuity of whether people in nursing homes are sicker or have more needs, what we would like to do — and I think your idea and suggestion is good a one and well-taken and we’re going to take it back with us.
We need, I think, a common assessment tool that lets us look at what the levels of care of people are in the waiver compared with the levels of care in a nursing home. Thank you for those comments. It’s something that we are aware of and going to work on. Thank you.
MR. SNYDER: Thank you.
MS. SULLIVAN-MARX: Thanks, Bob, for that clarification.
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MS. WALLET: Also from Countryside would be Linda Keller.
MS. KELLAR: I am Linda Kellar. Thank you very much for having me here this morning.
Since I’m now a senior citizen, I recall how my parents must have felt with daily living on their own. Both my mother and father were beginning to have health problems and, eventually, I saw a need there that they really did need help in every aspect of the way of their style of living at home.
The major concern was their personal care, household chores, shopping, outside chores and the cosmetic care and maintenance of the property, both inside and out. We did contact and hire a nursing association who came to the home.
Consequently, the demands of care began to grow for mom and dad. It was inevitable that something had to be done to meet their needs because they could no longer be met at home through the nursing association.
We moved my parents to a personal care home where they had great care, three balanced meals a day and, most importantly, they had a social life. There were church services, games and there were frequent outings for the seniors that lived at the facility, for those that were able to participate, of course.
Things were finally looking up for mom and then
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her health worsened. She wasn’t able to participate anymore. We had to move her to a nursing home where her Parkinson’s disease and other illnesses could be treated properly.
By the example of my mother’s transition from level to level, one can see a continuing care facility allows the single or married person to live a lifestyle suited to their changing needs.
This lessens worries for the family as well as the spouse about the obligations of one’s own home and dealing with the hiring of assistance, which can be overwhelming for many seniors, especially when you’re facing health problems.
In closing, I hope you will understand the importance of the entire range of services that seniors must rely upon as their health needs change with age. Each level of their continuing care is as important as the next level and deserves adequate funding, flexibility towards the preferences of the individual and equality in the level of regulations. Thank you.
MS. SULLIVAN-MARX: Thank you. Were your parents in a continuing care community? Is that what you’re saying?
MS. KELLER: They were in an independent level of living. They didn’t continue on. You had to go to another facility. This was many years ago.
MS. SULLIVAN-MARX: So that your mother had to
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move out to a different facility from where your father was living?
MS. KELLER: Dad was able to stay there. As a matter of fact, after we moved mother to a nursing home, dad decided he was doing real good and elected to move into an apartment.
But it didn’t last long. He was lonely. He needed other people around him at his same level that he could relate to and they could relate to one another. In other words, he had a bond with the other men at the facility. He went back to the facility and then he became much happier. From there, he went to another facility as his health went downhill.
MS. SULLIVAN-MARX: Any questions from anyone else?
(No response.)
MS. SULLIVAN-MARX: Thank you, Ms. Keller.
MS. WALLET: Our next person speaking would be Mr. Andrew Stender. He’s with the deaf and hard of hearing community. He’s a consumer.
MR. STENDER: Hello. My name is Andrew Stender. I was born deaf and later became blind. I would like to talk about SSPs and what that means, a support service provider.
An example of that would be somebody that’s an SSP could come and I would say hi. They could lead me and
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assist me, if I needed to buy some groceries, if I needed to go to the bank, if I had some errands or some exercise, go for a walk for my health or maybe a ride to a doctor’s appointment.
Now, that SSP would know my schedule, know my appointments. We would stay in contact through email or something like that. It’s like a helper to work with me. They could drop me back home. I’m safe and independent at home. I have my own apartment.
I am independent. I can take care of my own personal self. I can do laundry, things like that. I like being independent in my own apartment. I don’t like group homes. I’m isolated there as well.
I want to be independent. I have my own pens. I have my computer. I like being the same as other citizens. I’m happy being responsible but I do need an SSP. I do need a helper for things that I cannot do. I hope you can understand my need. Hopefully, you will support this idea so that I can remain independent at home.
MS. SULLIVAN-MARX: Thank you, Andrew. Other questions or comments from other commissioners?
MR. MURPHY: Could you describe what services are available today?
MR. STENDER: I can somewhat. There are volunteers at my church. There are volunteers at a blind
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agency. We have volunteers at the Deaf and Hard of Hearing Services that help me. But sometimes you can’t rely on that. I’m not mentally retarded. I am able-minded. I am able-bodied. I just need some help in certain areas.
MS. SULLIVAN-MARX: Any other questions or comments from the commissioners?
(No response.)
MS. SULLIVAN-MARX: Thank you, Andrew. That was very helpful.
MS. WALLET: The next speaker is Marcie Bowen. She’s also a consumer for the deaf community.
MS. BOWEN: Hello, everybody. Thank you. I have looked up to Shirley since I was a little girl. We went to the same school. I’m the next generation after her. I look at her and I see how she’s aging. I know she’s on the road to becoming an aged person. I know she’s in the retirement community.
On my mother’s side and my father’s side, they took care of my own grandparents in the home. Now, on my father’s side, they hired a day nurse to come and visit and take care of things. See, I’m deaf and they were all hearing.
I’m thinking, well, I guess a nursing home is — but, man, that isolation, that lack of activity, that lack of stimulation. So I really would like to ask you for full support for Shirley.
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We need a retirement community that includes various housing options and meeting the needs of assisted living, nurses, civic activities. Maybe that would draw young deaf people or others with disabilities and it could provide employment. They could be personal care helpers and that kind of thing.
It would also provide younger working people who are deaf a place for housing, an agency to serve people who are deaf, a rehab center for younger people who are deaf, a senior center equipped to serve people who are deaf and a medical setting that could effectively and efficiently serve the needs of people who are deaf through an interpreter.
A retirement home would need to have an ASL user that could effectively communicate with the deaf patient and you have to consider the cost of interpreting. Even if they lived in one place, for example, like a nursing home, it could provide medicine or nursing care, local workshops that would provide education. A large community room would help avoid depression and isolation.
There are many more benefits and reasons to get a community senior citizen community together but the most important one of all is that we need it.
MS. SULLIVAN-MARX: Thank you. Questions?
MS. REESE: I have just a comment. I think that
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the point is well-taken as far as the aspect that we should give consideration to hiring people who are deaf, to be heard, and, if necessary, have deaf people in a personal care residence that are able to integrate them into employment so that those people who are residing in the home have some means of communication.
MS. BOWEN: I grew up in a hearing family and a hearing community and I was alone. I didn’t have communication or feedback. There might be other young deaf people in hearing families that feel isolated at home but could enjoy the knowledge of older adults and pass knowledge on from older to younger. Thank you.
MS. SULLIVAN-MARX: This reminds me of something that we should probably identify in our own report. Often when we are talking about older adults and hearing impairment, we’re talking about the hearing impairment that occurs in late life from presbycusis and such. That’s a hearing person who then later on is wearing a hearing aid or losses some of the high tones.
But I think you all are presenting us with the community of the deaf culture and how that will be growing in an aging community that we need to put some attention to and probably in our reports discern the difference between people who are hearing impaired throughout their lives or people who just have hearing loss.
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MS. BOWEN: Exactly, big difference.
SECRETARY RICHMOND: I think, again, it’s making a distinction that there is a deaf culture and that we need to recognize the deaf culture and making the accommodation is to remember socialization skills and socialization outlets are just as important as any type of other medical care.
MS. BOWEN: Yes. I would like to add there is one place in Philadelphia called Valley View. It is a nursing home. I went in there. And, oh, my goodness. It is so tiny. The bedding room for people — and if they’re in a wheelchair, they can’t even get in there hardly. There’s no windows. There’s nothing to look at once you get in your bedroom.
There’s a waiting list that is pages and pages and years long just to get into a tiny place with no windows, just to hang out with other deaf people as you age. My concern for my friends here is that we have got to come up with a better idea. We have to come up with a better system.
They need to have a bright outlook or at least an equal outlook as their hearing counterparts. Respecting their culture is important. It’s important to us. I agree with you. Culture is important. But being together is what allows us to have our culture.
MS. SULLIVAN-MARX: Good point. Thank you.
MS. BOWEN: And that way we can communicate.
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MS. SULLIVAN-MARX: Thank you.
MS. WALLET: Next also from the deaf and hard of hearing community is Karen Pfortsch.
MS. PFORTSCH: Hello. Hello. I’m happy to be here today. My name is Karen Pfortsch. I’m a new casemanager at Deaf and Hard of Hearing Services in Lancaster County. Many of the senior citizen people were able to come here today. They are only a small part of a very large deaf community in Lancaster County specifically and neighboring counties.
They shared their concern with me that one day or some day, you never know, they might have to be placed in a nursing home. A lot of their friends are at different locations, scattered and isolated.
Our service tries to go and train the staff and help them as much as we can with meeting their communicating needs. But there’s high turnovers a lot of times in the long-term places. They go on to other professions or go on to other places and there is just not enough sensitivity to how to meet the needs of a deaf person.
For example, you have a patient. They don’t know what their medicine is for. They don’t know why they are taking it. They don’t know why they are going to x-ray. They don’t know why they are being moved to this room or that room because there is no communication. Nobody is telling them.
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The services are forgetting to get an interpreter even every once in a while. They don’t know what is going to happen to them the next day or that afternoon. There is no communication. So their health declines. That’s more medical costs in the long run when their health declines like that.
Suppose you were in a group, a nursing home or whatever. If you were in a friendly environment with maybe even somebody else that was deaf, you could visit. You could communicate. It would eliminate a lot of costs just by a decline in depression and isolation. That’s the kind of community that we’re hoping for.
Not a group home, that’s maybe not the right word, but assisted living, retirement, living just in one place. That would be great. Thank you.
MS. SULLIVAN-MARX: Any other comments or questions?
(No response.)
MS. SULLIVAN-MARX: Thank you.
MS. WALLET: The final speaker from the deaf and hard of hearing community is Elizabeth Fechtman Crippen.
MS. FECHTMAN CRIPPEN: My name is Elizabeth Fechtman Crippen and I’m a casemanager and program director at Deaf and Hard of Hearing Services at Lancaster County. DHSS, as we refer to it, is a 501(c)3. Just a real quick background, we
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are a private agency and receive no local or state or federal funding.
Why am I here? Because I, as a casemanager, need to inform you of our awareness both as a casemanager and of our agency’s awareness of the need for a retirement, assisted living, nursing care and rehab services, hospice complex for the deaf community.
Their language is American Sign Language. It is different from all other languages and different from all other disabilities because there is the language barrier.
You can have people in wheelchairs. You can have people who are blind who still hear but the disability of being deaf — and that’s all that the difference is — is what makes the isolation so incredibly depressing for so many of the older senior citizens who are going into a hearing retirement community. Yet, they are isolated and their health declines. We heard about that. That is a major concern.
Currently, many of these deaf people are living in communities or, should I say, neighborhoods. Community indicates that there is communication going on. They live throughout Lancaster County and surrounding counties. They are in neighborhoods but communication has to be between people that have the common shared language. That is not happening right now.
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As a result, the need for a South Central PA retirement, assisted living, nursing care community is great. There are numbers of people coming to us saying, I’m looking for a retirement place, but there is nothing.
There is one community in Pennsylvania referenced before as Valley View. It has 45 beds. Most of those are two beds in a room, very small room. If you’re in a wheelchair, as Marcie said, it’s almost impossible to navigate in the rooms. That is the only facility. It is not funded by the state. It is a privately owned.
What is this need? What is it all about? It is about the need for supporting people like Andrew Stender who are deaf/blind who already have needs for special services, SSP, as they are referred to.
It’s the need for a true community in Southeast Pennsylvania, to provide the retirement community complex that would not only house the people, but the services that they need right now that they are not getting equal access to because of the isolation and the ignorance.
As a side point, the Keystone Deaf Senior Citizens Group which meets in Lancaster County at a fire hall, until this week, the Office of Aging did not even know it existed. Yet, their membership is over 300 people. They have had to, on their own, create their own senior citizen group.
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It’s sad but true.
The whole State of Pennsylvania needs to grow in their awareness of the large deaf community and the senior services that are needed to service their needs. Thank you.
MS. SULLIVAN-MARX: Thank you.
MS. REESE: How high are the numbers of the people that are in South Central PA that are affected?
MS. FECHTMAN CRIPPEN: Thank you for asking that question. Since the State of Pennsylvania and the federal government have not ever included on the census anything about deafness, hard of hearing, people who use American Sign Language, there is no exact number. We have approximately, the number floating around, 4,000.
But in terms of a census, it has not and sadly needs to be added to the census form to know and so you know the number of people needing the services and how great the need is. The Keystone Senior Citizen Group is 344 and not all come because the building can’t even accommodate them.
MS. REESE: I guess the second part of my question would be, knowing that there are people throughout Pennsylvania that are hearing impaired and deaf, do you think that there would be restrictions for them?
If they are from Northeast PA, do you think that they would feel comfortable and talk about wanting to remain at
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home or being in a neighborhood of people that are impaired?
Would they be impacted by someone from Erie or Clark Summit going to South Central PA? Do you think that would be an effective community or would there be more needs for more communities throughout Pennsylvania based on studies we compile in the future?
MS. FECHTMAN CRIPPEN: Let me let you talk to the expert.
MS. SHIRK: I know that people live all across the state. It’s a big state. They are all alone in nursing homes. I know if you set up a big one for cost effectiveness — it would be terrible if you had to pay for several centers. One is great. One is great.
MS. REESE: Is there one in Ohio?
MS. SHIRK: Six.
MS. REESE: It is a continuing care retirement community?
MS. SHIRK: Yes. The nursing care is on one wing. Hospice is another wing.
MS. REESE: Thank you.
MS. SHIRK: Three floors. They have the retirement senior citizen living. Then as your health declines, you can have an aide or go to a nurse or go to hospice. It’s got a park with view of birds. Many people love to plant
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flowers on the ground, as their enjoyment, on the campus. It’s their home. They love to make it beautiful as part of their hobby.
MS. FECHTMAN CRIPPEN: One of the things that is needed is a place for the deaf community. I’m sure they would like to stay near their family and friends.
One of the reasons in South Central PA the request is coming to us so frequently is that they don’t want to go to the Philadelphia area away from family and friends. The other thing is South Carolina now has developed a community, Cedar Spring, Ohio, Texas, California. It’s time to meet the needs now.
MS. SULLIVAN-MARX: Thank you. Other questions from anybody?
SECRETARY RICHMOND: I am disturbed that the census hasn’t included you. I’m assuming there’s been national advocacy to get counts and that has not meet with success?
MS. FECHTMAN CRIPPEN: A professor at a university finally in desperation last year put together a limited census to begin to get the numbers here in Pennsylvania just in the direct contacts he could make to send out. But it’s not here yet.
We are looking to you. How can you know to do your job if you don’t have the numbers? The pressure is going
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to have to come from the higher level. We have been advocating and contacted the Governor’s office to try to encourage this to happen.
SECRETARY RICHMOND: The national census that drives all of the funding is in the federal government. Being part of a national census becomes critically important. There’s been no reaction from the federal government to count the number of people who are deaf and hearing impaired?
MS. FECHTMAN CRIPPEN: Not yet.
SECRETARY RICHMOND: I would suggest you find a good lawyer and sue them.
MS. FECHTMAN CRIPPEN: We all heard that. I agree. That’s how sad the situation is. That’s why we are here today, to simply say, we’re looking to you for the help that we need for advocating at all levels for access to the services. Thank you.
MS. SULLIVAN-MARX: Thank you. Antoinette, are we finished with the last four?
MS. WALLET: I have one more person from the community. Andrew wanted to make one final comment if that’s okay.
MS. FECHTMAN CRIPPEN: I will say one thing for the deaf/blind. There is a national registry so that is a known number. But for the deaf community, there is not.
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MS. SULLIVAN-MARX: That’s helpful. Thank you for that excellent presentation and for all the comments from the deaf community today. I think, since it is 10:30, I’m going to suggest we take a stretch break. Do we have one more?
MS. WALLET: Yes, one more.
MS. BROADSKY: Hello, everyone. My name is Joanne Broadsky. It is my dream, my goal — and I am passionate about it — setting up a facility for my future. I have even asked for community support. I have sent out petitions asking for support. It would be very good to have all that. It’s important for our future.
There are five things it would mean. It would mean jobs for young deaf. It would mean that senior citizens would have a place to retire, a place to house an agency that provided services for the deaf, a rehabilitation center. It could have a senior citizen center with equipment, a medical setting that could effectively serve medical needs of people who are deaf through interpreting.
Just briefly, I am deaf and I have CP. I have braces on both my legs. I drive myself to my doctor’s appointments. I can’t get interpreting services. I call to get an interpreter a long time beforehand. Somebody won’t show up.
I try to find a counselor to accommodate me. I have to go way far in Pennsylvania because my insurance won’t
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even cover that. I live in Lancaster but I drive to York because there’s a counselor there that can sign.
I volunteer most times just to go in the hospital and see people who are alone, just to visit a little bit. I go down to Valley View just to visit with them because there’s no family a lot of times that are willing to help volunteer.
I know one person who has no family and she called me. She needed an operation. I volunteered to help her. I went with her to the hospital. When we came back, she tried to pay me some money. Sometimes she cries. I would like to help her and myself also.
It’s a very, very emotional situation. We just don’t have the same access to services. I might have to move. I am encouraging people to set up a new place that’s good for the deaf. It doesn’t matter what. It doesn’t matter if they have other disabilities in addition to deafness. It could be separate for a while, if it needs to be, and then have a party, all get together.
But you can’t ignore the handicapped. You can’t ignore the blind, even me, even them. We have to learn about each other. And we’re deaf. It’s important for us to be together so we can talk like everybody else. Don’t ever leave them alone. Thank you.
MS. SULLIVAN-MARX: Thank you and thank you for
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your interpretation and your signing and thank you for the deaf community. Why don’t we take about ten minutes and then reconvene.
(Break.)
MS. SULLIVAN-MARX: Antoinette, who is next?
MS. WALLET: Ms. Maureen Jordan.
MS. JORDAN: I’m Maureen Jordan. I’m a public policy advocate with the ARC of Pennsylvania. I’m also a parent and formerly was working as a provider in a small group home.
I’m here to represent another diverse population of the aging and that are the aging with intellectual and developmental disabilities and just asking that they be remembered in the census that go out.
What we would recommend is that there is planning data specifically to include the number of adults over 60 with intellectual disabilities and then the number of parents caring for adults with intellectual developmental disabilities.
The reason for the second category enters into the category of the waiting list because as that population ages, their loved ones need to be serviced in some place, whether at home or at a facility, wherever, but they will then become part of the waiting list.
It’s important to know the numbers in order to determine the level of needs. That’s why we are asking. The
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08/12 plan identified people with mental disabilities but that’s not specific to say what exactly did that mean.
In fact, further on in the report, Objective 1.2 said inform care providers of older Pennsylvanians of the unique needs of persons with mental illness. Was that mental disability relating to MH or MR? To break the category apart would allow you to see the numbers of adults you’re talking about.
MS. SULLIVAN-MARX: Just to clarify, what report are you referring to?
MS. JORDAN: I was just going on the aging report, the 2008, 2012.
MS. SULLIVAN-MARX: Pennsylvania Department of Aging report?
MS. JORDAN: Yes.
MS. SULLIVAN-MARX: Because we are also putting together a report from the commission and that’s one of the documents that we use. That’s helpful.
MS. JORDAN: And identifying the needs of our population. Aging in place is a need for our population. The ability to stay home or stay in the facility that you choose is important. But as you age, your needs change. Your needs change in any population. As you find out very quickly after the age of 40, that happens.
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But by understanding their needs and allowing them to age in place, what information we need is we need resources and advocacy for them in this stage of their life.
We need to develop and offer training to the caregivers, the direct care staff on the aging needs and both aging and developmental disabilities and what that means. There are conferences such as Building Bridges and those that address some of these. But our direct care staff needs to be trained in these issues.
Some of the homes and agencies need modifications in their building structures because they are not specifically serving the aging population. But if we talk about allowing our consumers and our people and our loved ones to stay in their programs, their homes, their different community resources, we need to make sure they are available and able to be accessed.
Then we encourage greater cooperation between the AAAs and the local community providers to service the people with intellectual disabilities, to just strengthen that partnership. It’s not saying it’s not there, but to increase that awareness between the two agencies and do more collaborative work so that we can help each other out.
Both are doing wonderful things but as the population ages, our populations will start intermingling more and more. We know that the boomers are growing and they are
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going to be. The level of support underneath is not as much. We just need to address some of these aging issues of all of them.
The final point is just recognizing the need for extra funding for some of these issues. It’s not just a funding issue. It’s an awareness issue, too. The funding is important. The agency funds need to be available, too, to adults with intellectual disabilities and just to say that they are a piece of the pie and, again, just bring an awareness from our group to you, nothing specific, but just to say we’re here and we would like to keep the dialogue going.
MS. SULLIVAN-MARX: Thank you.
SECRETARY RICHMOND: I met with the waiting list initiative task force and group this past week. One of the things they requested also was a task force be set up specifically for people with developmental disabilities on aging and they will get me names to help organize that.
As we have seen, there is a fairly large group of people with developmental disabilities that are baby boomers and that will be approaching all of the additional needs as other seniors have except they will have an additional disability.
They were very emphatic that they want to be able to age in place and they want to be able to have community resources. I think beginning to think through it, it is
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slightly a different population.
They are also interested in and are going to do some figures on the number of people we have now over age 60 who have developmental disabilities, the number of people who are being cared for over age 60 and the number of people that they believe is a fairly high number for both the individual and the caretaker over 60 and want and need some level of support to continue to be able to be in that caretaker relationship but can’t do it independently, where the mom or dad or both are probably in their 80s and the person with the developmental disability is in their 60s.
That’s made the radar screen. I certainly at this point in time, with Wall Street trying to crash, won’t make any comments around money in the future, but at least it needs to get the attention and planning.
MS. JORDAN: Yes, and that’s all we’re asking.
MS. SULLIVAN-MARX: Any others?
(No response.)
MS. JORDAN: Thank very much.
MS. WALLET: Next is Ron Barth from PANPHA.
MR. BARTH: Thanks very much. I feel I don’t even need to introduce myself. I am Ron Barth. I am the President and CEO of PANPHA which is the Association of Non-Profit Senior Service Providers. In Pennsylvania, we have
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approximately 360 member organizations. Our members serve more than 65,000 older Pennsylvanians, employ around 45,000 caregivers.
We have 150,000 volunteers statewide that daily provide assistance with our members for their caregiving, along with trustees, auxiliary members and all the rest.
Obviously, we’re thankful to have the opportunity to bring comments to this commission. This commission was very, very important to PANPHA. In fact, PANPHA was the organization most responsible for urging the legislature to create such a commission because it is absolutely vital.
Why is it vital? I’m not going to go through all the statistics that you have seen before. Clearly, Pennsylvania is one of the grayest states in the country both in terms of proportion of the population that’s aging and in actual sheer numbers.
People talk a lot about the aging baby boomers. The fact of the matter is it is going to be a problem but as far as senior services is concerned, probably not a problem for maybe 20 years because most of our members would find that the average age of a resident in a CCRC, personal care, assisted living, nursing home is closer to 80 and above than it certainly is at 65.
Yet, Pennsylvania is one of the oldest states as
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far as those with the population of over 85. We rank second or third in percentage of citizens over the age of 85 and our population of 85 year olds is growing at least ten times faster than the rest of the population. As a matter of fact, by 2010 there could be 365,000 85-plus year olds in Pennsylvania. These people are the ones that need services.
There’s been a lot of talk about rebalancing the services in Pennsylvania. The fact of the matter is that according to a study and commission by the Department of Public Welfare by Thomson MedStat, it stated that Pennsylvania is currently experiencing the kinds of demographic changes that other states will not experience for another 10 to 15 years.
What we particularly found interesting in this study is that our care system is not overly slanted towards nursing facility even though you may hear that a lot. In fact, the study said if one takes into account the age distribution of Pennsylvania’s age population, institutional rates in Pennsylvania are slightly below the national average. Again, it shouldn’t surprise anybody because we have this very old age cohort.
Furthermore, in this study and with the state, they have never counted personal care which is, even right now with the Chapter 2600 regulations which were adopted a couple years ago, equivalent to assisted living in practically any
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other state in the union. That has never been counted as home and community-based services here in Pennsylvania.
When we talk a lot about rebalancing, I think the fact of the matter is we may be a lot more balanced than people think. Yet, we still have a problem. Now, I’m not here to argue that we need to fund nursing homes at the expense of home and community-based services.
But, likewise, unlike other testifiers and I’m sure you’ve heard other groups, PANPHA definitely disagrees that home and community-based services should be funded by reducing funding for nursing homes. This is not an either/or proposition. We need both. We need all of these services and we need them soon because we have an exploding population of seniors that need it.
Now, Mark from our staff passed out a booklet. It’s called the PANPHA North Star. I’m not going to get into the details about this, but this is something that the association did a few years ago to say, what do we want senior services to look like in the future?
There is no specific date in mind, but North Star is our guide to say we need to be moving in directions. I hope that you will review that because we have heard a lot of good comments about it and I think it’s the type of thing that we all need to be thinking about.
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Among other things, though, in that North Star is our hope that we can start moving past the adversarial wait and see relationship with government on what we are supposed to be doing for senior services in the future.
As a matter of fact, I think it’s worse than wait and see. I think in many cases it’s stick your head in the sand and hope for the best approach to what we are doing for senior services.
Clearly, there is going to need to be a public and private sector partnership with consumer advocates to decide what we’re going to do. Obviously, what it really comes down to is the biggest problem facing us is funding.
Secretary Richmond and I had a brief conversation at the break and she’s already facing extreme budget pressures right now. We understand. Clearly, the funding that is available to government and even to the private sector is not going to be sufficient to provide these services.
We have to get real about this issue. One of the things that we all have to get real about is that there has to be some sort of personal responsibility for funding senior services that we will all need in the future.
I go to a lot of places and I ask the question, how many people have got long-term care insurance? Many times I’m going to groups that are professionals. They are in the
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senior service profession. They know everything about the cost of services. They know how many people, which is more than 50 percent of us, will need long-term care services sometime in our lives. They all know this.
Yet, usually when I ask people to raise their hands of how many people are prepared for this, how many have long-term care insurance, it’s less than 10 percent. We need to start taking some personal responsibility.
Our national association has come up with a plan. I will get this to you, if you like. It’s called the long-term care solution. It has to do with some sort of insurance that would be mandated for the citizens of the United States.
Our actuarial science has known for a long time that when large numbers of people join insurance pools, then more people can receive coverage in an affordable way. What they have designed here is an insurance program that vested after five years would provide $75 a day cash for those individuals that need two ADLs.
As a matter of fact, it would provide a bit more cash for people that had more than two ADLs. The premium would range anywhere from 73 cents a day for one year of coverage, again, vested after five years, all the way to $2.73
a day for a lifetime of benefits after vesting for five years.
This would not mean that you would have to wait
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until you’re elderly. If you have needs with ADLs at a younger age, this would kick in and it would be more of a cash and counseling type of benefit. So people would be able to get the type of services that they need, the services that they want.
That’s one approach. I think it’s an approach that we definitely need to take a look at. I think it’s an approach that this commission needs to examine and recommend. I will be quite honest. We may need more funding. The last thing anybody ever wants to talk about is tax increases.
Yet, people want more and more services. They want government to do more and more. But we have to do this somehow without the revenues. It’s time for us to start looking at that as well.
One of the things that we have used in the past with some success, because people seem to think that it’s okay to tax sins — you’ve heard of the sin taxes. You’ve heard of the taxes on alcohol, taxes on cigarettes, taxes on gambling. We all are probably sinners to some point.
But another, quite frankly, sin that maybe we need to take a look at is junk food, unhealthy diets that have a direct impact on our health and that will have a direct impact on health care costs that government is going to have to fund.
Now, I’m not going to tell you about all my sins, but I will tell you that I do have — I’ve been known to eat a
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Big Mac a time or two. I’ve been known to drink not diet soda because I can’t stand the taste of diet soda. I’ve been known to eat things that I know are not good for me.
Maybe I need to pay just a little bit more. Maybe that will change behaviors slightly. But at the very least, it’s going to start funding the services that, because I am sinning like this, I will probably need in the future. Other states have done it. Other states are doing it. In my testimony, you will see seven or eight other states that have already considered it.
Now, am I going to go out today and hold a press conference on the steps of the State Capitol and say I’m calling for this? No.
SECRETARY RICHMOND: The steps of McDonald’s.
MR. BARTH: Right. But I think this is something the commission needs to take a look at. How are we going to fund it? It’s just not going to be enough to say, we need more funding. We need more funding. We need more funding. Yes.
You don’t have to convince anybody, I don’t think, that we need more funding. What you need to convince people is, how are we going to get funding? It’s going to have to be a combination of personal responsibility, the long-term care solution, and government increasing their revenues to pay for the services that everybody is demanding.
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That’s why this commission is so important. That’s why I hope the commission really steps up and is not afraid to put on the table these tough choices that need to be made. Thank you very much.
SECRETARY RICHMOND: I have to comment. I think there probably aren’t a lot of opportunities to say I 100 percent agree with you.
MR. BARTH: Especially you and me.
SECRETARY RICHMOND: I couldn’t have said it more clearly. The one piece you didn’t emphasize but I know in your heart is that we pay your workers badly. It actually irritates me to hear every elected official campaign on cutting taxes, yet, turn around and want to be able to enhance services. Everything that most of us do is paid for by tax dollars.
I think you made the case very well. There is a role for personal responsibility. We need to be able to mandate that because people don’t know what’s going to happen to their body ten years from now. But at the same time, it’s a shared responsibility. We need to be able to increase revenues.
I wish we had a crystal ball to know where our economy is going to be in the next three years. Are we going to be hurting people or helping people? How do we get beyond this? But it’s very clear without revenue and tax bases going down because unemployment is going to go up, there are still very
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vulnerable people in our society.
And being able to say we don’t need the new revenue or the tax dollars to increase our ability to pay your staff a living wage or to make sure that people get the care they need where they want it is, I don’t think, being responsible.
MS. SULLIVAN-MARX: Other comments? (No response.)
MS. SULLIVAN-MARX: One of the things you and I have discussed in another venue is what nursing facilities look like in terms of the delivery of services today.
Increasingly, what’s happening in what we call skilled nursing facilities or nursing homes — when I first entered nursing in — I don’t want to say when. I was 12 years old. It was in the ’70s. But when I cared for patients in hospitals, those are the kind of people who are now in nursing homes for 30, 60, 90 day stays.
They often have technology needs. They have the needs for a high level of care. It’s a demand. At the same time, we are not paying wages for people to work there. You might need more professional nursing services. You need more ratios of care workers in the facility. But we are not paying them. They might get more at McDonald’s.
Maybe you can give us some thoughts, in your
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vision of this, about the changing nature of pushing the more acute types of services into what we traditionally call nursing homes at the same old reimburseable rates and paying those workers low wages.
MR. BARTH: You’re absolutely right, Eileen. Nursing homes today are nowhere like what people may have remembered five, ten years ago. They are closer, much closer, to what the med-surg wards are, quite frankly, in hospitals.
The average length of stay in a nursing home is less than six months in the Commonwealth. What that tells you is that these people are extremely ill, have a high need and it’s either intense therapy or, quite frankly, perhaps end of life, late stages of terminal illnesses.
We used to call them nursing homes because people were thought to live there for a number of years. That isn’t the case anymore. The average length of stay is, as I said, less than six months.
Now we have personal care assisted living. That’s another story. Personal care in Pennsylvania has evolved into much of what is called assisted living, even though we are now in the process of developing regulations for something called assisted living as well.
Those organizations are much closer to the nursing homes than you used to think about. That is where
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people will be staying for a year, two years. They have some needs. They need assistance with the ADLs. There’s some medications, that type of thing. That’s what nursing homes used to be.
Now you have to have housing with services which is what you used to think personal care was. So everything has been kind of pushed down. Yet, we have old regulations. We have old reimbursement models. We have all of this that is based on what things were, quite frankly, in the mid ’60s when Medicaid and Medicare started. It’s entirely different.
We also have things called Life Programs now which are basically taking a region, capitating and saying you provide whatever services you need, which is great. A lot of our members are doing that. But you still need to fund these services.
Let me say this. We think that everybody should get the services that they need in the least restrictive setting and that means, hopefully, staying at home maybe with some technology, going to assisted living facilities, using home health care. Our members provide all of that.
Eventually, there are people that need nursing home services. They need all of these services and it’s got to be available. We just have been, as I said, stick your head in the sand and hope for the best approach.
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The way that we balance the budget when we know that costs are exploding for nursing homes and all these other services is to say, well, we just won’t pay the cost. Right now, the study I’ve seen statewide is that the average Medicaid rate is about $15 a day less than the average cost of care. I can tell you, for our members, it’s more between $23 and $25 a day less than the cost of care.
Somebody has to pay that cost. Who pays that cost? The staff. As Secretary Richmond said, we can’t pay them what they deserve. They are being taxed by not being paid the wages that they deserve. It’s almost like taking money out of them and saying this is your tax. We’re supporting an inadequate Medicaid system.
Now, 60 percent of residents in nursing homes are on Medicaid. Probably 5 to 10 percent — it’s raising now — is on Medicare. The rest are private pay. They are paying more than what is fair to subsidize inadequate government reimbursement.
I’m not trying to blame government here other than the fact that what they want to do is say, we’re not going to raise taxes, but that’s false. They’re not raising the tax rate, but they are certainly raising the taxes on the staff of these health care places and the private pay individuals. See, somebody has to pay the bill eventually. It doesn’t come out of
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thin air.
MR. OKDO: I have a question. When you were talking about funding, you mentioned the insurance for people. My question is, is it going to be government based insurance or private?
MR. BARTH: The proposal would be that everybody would be enrolled and they could opt out. The hope is that most people would stay in and it would be overseen by some sort of quasi-government agency. Honestly, I think maybe that will work.
I think Mr. Snyder was here earlier and he was saying you either opt in or you’re going to have to pay a little bit more to go into Medicaid. I think people are going to have to understand that they have to take some responsibility here and people are not taking that responsibility.
If you want to call that a tax, I guess maybe, in a way, it’s a tax. If the government says you will pay this, that’s saying tax in a different way. But people are demanding these services and they are looking to government to fund this.
As a matter of fact, you can look at the Philadelphia paper today, if can you read anything except the Phillies, and you can look at the paper here in Harrisburg and I can guarantee you there are three or four advertisements of attorneys that are, quote, estate planners.
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The estate planning is, how do you arrange your finances so that you can quality for government reimbursement? People are demanding it but they are not taking the personal responsibility. We need to have them take the personal responsibility.
MS. SULLIVAN-MARX: Thank you. Any others?
MS. REESE: I guess I’m just startled at the six months or less in the nursing home. I thought it was closer to probably 8 to 12 months.
MR. BARTH: No. It’s 170-some days. I consider 6 months 180 days. I think it’s 175 or something like that, 175 days.
MS. SULLIVAN-MARX: Thank you very much.
MS. WALLET: Our next presenter is Mr. Gary Scicchitano.
MR. SCICCHITANO: Good morning. My name is Gary Scicchitano. I’m Vice President of the Visiting Nurse Association of Central Pennsylvania. I’m also the President of Visiting Nurse Association Private Duty Operation.
My company provides home health care services in 18 counties in Central Pennsylvania. We manage what’s called VNA Health System in the Shamokin area. We have community nursing services in the Lock Haven area. We have Centre Home Care in State College. We have VNA of Central Pennsylvania just
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around the corner here in Harrisburg and we have VNA Private Duty which has offices in both Sunbury and Bellefonte.
I’m a relative newcomer to this business after spending many years in state government. Because of that state government experience, I feel I have kind of a different perspective on some things, particularly funding, than others may have who have been in this industry for a long time.
I think I view things in a very different way because I am familiar with the state budget process and I’m also familiar with the competing interests that the Governor, the House and the Senate have on an annual basis with the usual tug-of-war of the resources that need to be funded and the limited funding that is available.
You’ve heard from many stakeholders over the period of time that you’ve held these hearings. Many of them have provided you with a lot of statistics. So I will stay away from that today. What I would like to do is just take a few minutes and talk about what we see as reality when it comes to the home health care business these days.
I would like to start out by telling you a real quick story about a county that is not too far away from here. In fact, it’s very close to here where the average population is 65-plus. This county is one of the poorer counties in Pennsylvania. People who live there don’t have a great deal of
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wealth.
They don’t take a whole lot of money to the bank every day. They don’t have huge pensions. They live on Medicare. They live on Social Security. If they are lucky, they have a small pension from a coal company that they worked at over the years — and that’s the age group we’re talking about here — or a factory job or something like that.
Many of their children and family members have moved out of that county because there aren’t too many good-paying jobs. Elderly neighbors try to care for each other because that’s the right thing to do.
What we find as we service this county is that as the population continues to age, the services that are required and the volume of services just is growing dramatically. We also find that these people who have lived in their homes for years and years and years want to stay in their homes.
They don’t want to go into assisted living facilities. They don’t want to go into personal care homes. They don’t want to go into nursing homes. Some of these people have owned their homes for literally generations.
I can tell you that I’m originally from that county and just sold our family homestead that was in the family since 1912. All they need is help with bathing, with dressing, with getting meals prepared, cleaning their homes and ensuring
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that their medications are available to them. They don’t need to be in a nursing facility. They just want to stay at home.
When they need these types of services, they pick up the phone and they call the county Area Agency on Aging in that county and they ask for help. Unfortunately, the answer they are going to get is, if it’s under the Options Program right now, I’m sorry. There’s a waiting list. There is a very, very extensive waiting list in that county.
Not only that, but many of the other people who live in that county who are receiving services under the Options Program have had their hours cut back and their services cut back because that county doesn’t have adequate funding for all the services that are needed under the Options Program.
This is reality. It’s very common today. Out of 67 counties in Pennsylvania, I picked one. But I can assure you it’s not the only county that’s experiencing that type of situation.
The AARP has done surveys and 90 percent of the people who have responded to those surveys say they want to stay in their homes. They don’t want to go into nursing facilities, long-term living situations. They want autonomy. They want independence and they want control of their lives.
What we know is — and you know it as well — home and community-based services are cost-effective solutions.
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When we look at what Medicaid spends for nursing home facilities, the figure I believe that was mentioned by someone earlier today is approximately $51,850 per year. Whereas, with home and community-based services, we’re looking at an average of $20,892 a year.
Home and community-based services also build on the support that they may receive from their friends in the neighborhood or from their families, recognizing that they can’t be there 24 hours a day even when they want to be.
These services provided in the home also allow family members to maintain employment. They can stay in the workforce and still take care of mom and dad, grandma and grandpa, whoever. So the question we need to ask ourselves today is whether there is an appropriate balance in the funding that’s available for nursing care facility and home and community-based services.
I heard what Ron said just a few minutes ago. Unlike Secretary Richmond, I can’t agree with 100 percent of what he said, but I agree with most of it. I do believe there is an imbalance in the system.
I believe that we continue to spend approximately 90 percent of our long-term care dollars in nursing facility care and only 10 percent in home and community-based care. This 90/10 ratio puts Pennsylvania 45th compared to other states.
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States such as Oregon and Washington have rebalanced with about 50 percent of long-term care funding going to home and community-based services.
As you all know, Pennsylvania’s population is aging and the need for services is growing. We simply can’t afford to rely on the most expensive setting to fulfill our needs. I believe that rebalancing is a win-win situation. It’s what seniors want and it’s our most affordable option.
What is it that we need to do now and what is it that we need to do in the future? What I think we need to do is we need to expand and ensure that services are available to all of our older Pennsylvanians. This is a big charge.
We need to invest in those home and community-based services to ensure that these services are a legitimate option for all families. That investment needs to include the Life Centers that had been mentioned earlier, adult day care centers, senior centers, transportation, personal care services and things like that that you’ve heard so much about in the hearings that you’ve had.
We do need adequate reimbursement for our home health care workers. I could sit here for hours and tell you stories about personal care aides, home health aides and the dedication of those people.
I can tell you stories about how many hours they
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have put in for families and haven’t gotten reimbursed and don’t tell us because they don’t want us to know because they don’t want us, as a business, to get in trouble under the Fair Labor Standards Act or from the IRS or whoever.
We cannot adequately compensate these workers and continue to do business. They do not make enough and they should make more. We need to make sure that we train them so that they can continue to provide services in a professional and compassionate manner.
We need a COLA for Penn Care to ensure that services can be maintained for individuals who are currently receiving services under the Options Program. We need to rebalance the funding so that the Area Agencies on Aging can address those wait lists, service cuts and the historic inequities in funding.
You, as a commission, have been charged with looking into the future and finding a solution for this very serious dilemma. My comment is, unfortunately, the future is now. It’s not 2025. The future is right now.
If we don’t balance the system, we will find ourselves not only eroding what is already in place, but making it worse for our most vulnerable citizens, our older Pennsylvanians. I’m sure that you will do the right thing. I know you will. I thank you for the opportunity to comment here
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today.
MS. SULLIVAN-MARX: Thank you. Questions or comments?
(No response.)
MS. WALLET: The next person is Mr. Iseman.
MR. ISEMAN: My name is Jeff Iseman. I am the public policy analyst for the Pennsylvania SILC, which is Statewide Independent Living Council.
We have 25 board members and they are all persons with disabilities or CIL, Center For Independent Living, directors. We provide recommendations to state government on policies related to people with disabilities. We work with CILs and with others in the disability community to promote independent living.
There are a couple things that I’ll note in my initial comments. One, most of our comments pertain to the long-term care system for those both under 60 and over 60 that have a disability. Second, any of us can become a person with a disability at any time even as we walk out of this room.
We also support recommendations that have been made by stakeholder groups such as the CLACK and the Stakeholder Planning Team or the SPT as they are referred to.
First, I will start with home and community-based services. We support Secretary Richmond’s efforts to continue
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to rebalance long-term care in Pennsylvania. Depending on which numbers you look at, the numbers are at 75/25 or 80/20.
Pennsylvania still ranks in the bottom 15 at this point. It’s been improving over the past few years but it still has a long way to go. I’ve heard it stated that the goal to get to 50/50 is to be met by 2011 and I’ve heard others say 2020. We can’t get there fast enough.
We would also ask — and I realize this is a very difficult budget environment as others have pointed to — to protect the Medicaid Waiver for people with disabilities and Act 150 programs from budget cuts.
I’m also going to echo a few comments here made on wages. We think that there needs to be a way to address providing adequate compensation to those who are direct support professionals or direct care staff in the home and community-based services.
As many of you know, lack of COLAs in our benefits have contributed to problems in workforce recruitment and retention, particularly in the MH/MR systems and physical disability systems.
Attendant care is good example of this. Most attendants don’t have benefits. They don’t have health care, vision, dental. They don’t have paid time off and they don’t have any type of retirement plan.
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We also support protecting funding for assistive technology that empowers people with disabilities to stay in their homes. One other thing that we would suggest is finding a way to increase the awareness of the Visibility Tax Credit. It was passed by the legislature in 2006. It’s Act 132. In fact, PHFA has a very good brochure that talks about it. It would be up to counties and municipalities and school boards to implement.
That wouldn’t be something that the state would do, but having a visible and accessible home would allow people with disabilities and seniors with disabilities under and over 60 to stay in their homes which would save money and improve community life.
I have two final comments. It was alluded to that a lot of tracking by the federal government doesn’t include certain disabilities. We would also comment that pertaining to state government, we would ask that all the departments that deal with people with disabilities would be tracking that information as well, whether it’s DPW, whether it’s PennDOT, Department of Health, Aging, because that is a problem, particularly when you are trying to do education and advocacy on related issues.
The last comment I would make is to support seamless transition to cross waivers for people so they can age
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in place or if they need to get services from one waiver to another.
Sometimes when a person has more than one disability, they have to switch waivers in order to get the proper services and supports or at least get as much support as they can to remain in the community. Thank you.
MS. SULLIVAN-MARX: Thank you. Any other comments?
(No response.)
MS. SULLIVAN-MARX: We have heard that comment a great deal on both sides of the state for seamless transition of some waivers. There were some individuals testifying in Western Pennsylvania who are themselves caught in that group and talked about what it meant to them. Thank you.
MR. ISEMAN: I just have one other quick comment. If you’re over 60, you have protective services. If you’re 18 to 59, you don’t have services. Sometimes you may find out about a problem later on when a person gets older that could have been addressed earlier. Since we don’t have a system for ages 18 to 59, that problem may go undetected. If you’re under 18, you have the child welfare system where incidents get reported.
One last comment, I think the department has done a very good job on this brochure that talks about the waivers.
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It’s excellent.
MS. WALLET: Our final commenter is Ms. Beth Kehler.
SECRETARY RICHMOND: Let me just comment on the adult protective services. There’s been a request to move it from the Department of Aging to the Department of Public Welfare. I have accepted that we will take responsibility for it.
MS. KEHLER: Good morning. I know it’s been a long morning and I didn’t want to have this end this morning without you hearing a voice from the Area Agency on Aging system.
My name is Beth Kehler. I’m with the York County Area Agency on Aging system and I have been there for 31 years. Maybe they sent the oldest person or the person that’s been around the longest. I don’t know. But I thought it was important that you hear from our system today.
Because I have been in the system for so many years, I certainly have seen changes that have occurred, both in the services that we provide statewide as well as the consumers, the seniors that we see. What we are finding is that we have great challenges ahead of us in upcoming years with the increased numbers and the challenges with the funding.
The county-based Area Agency on Aging offices
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across the state have been the mainstay for older adults in their community for more than 30 years. In York County, we are 35 years old. So I didn’t start the agency. They are the key focal point for senior citizens and their family to go to for assistance, information and support.
In York County, we receive more than 1,500 information contacts, mainly in the form of calls or walk-ins to the agency. These calls and contacts can be from senior citizens or their families in the areas of services, housing, utilities, health, insurance, prescription drugs, all issues that are important for seniors. Those individuals do come to the Area Agency on Aging for that information.
We are the respected senior organization in our communities across the state. However, due to the lack of dollars, the trend is moving toward serving the most vulnerable, at-risk, sickest seniors only in our system. We are being forced to move to that side of the network.
The concept of funding preventive services is losing ground. Actually, we feel that it should go the other way and it’s losing ground as our funding moves to that side.
The seniors we see today or a senior we see today in York County who our care manager would assess as needing a hot meal, a home-delivered meal or a bath today would be placed on a waiting list, as I think you heard from Gary just
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previously.
A care manager would have gone to that consumer’s home, would have completed an assessment, would have identified the need for a hot meal or bath today but that senior would not be able to receive those services. They would be placed on a waiting list because of a lack of funding in our system.
Without those services, those individuals or that individual we would see today has a very real possibility of moving into that at-risk, vulnerable population and ending up getting funding through us eventually at a much higher rate than we could have done if we could have given them that meal today and prevented that possible deterioration.
We need to adequately support the funding and the foundation for the local Area Agencies on Aging across the state. Those agencies are rooted in our communities and have been there. We need to provide the funding to allow them to continue to provide the services across the mainstream of the system.
I have a unique perspective on the needs and issues of Pennsylvania older adults. I was employed at the Area Agency on Aging when the Pennsylvania Department of Aging was formed back in the late ’70s. I think I was 12, too. You referenced that. I also had a personal experience as a caregiver for my parents over the years.
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I feel like I truly do have some firsthand knowledge on the needs and the issues of older adults. I know firsthand the enormous impact that the York County Area Agency on Aging has had on older adults in our community from the Ombudsman Program, that program where the workers go into nursing homes and provide advocacy for nursing home residents, to our day care program offering much needed respite for caregivers, to the Healthy Steps Program held at one of our senior centers to prevent falls and the downspiraling of care into a nursing home, to an assessor working with a senior and their loved ones in developing a care plan to identify their needs, to an apprise insurance counselor assisting the Medicare beneficiary in selecting an appropriate Part D plan.
Our staff works daily on behalf of our mission statement that states that we will promote the independence of older adults through education, advocacy and the coordination of community-based services.
Our agency works very hard in the area of community outreach and partnerships. In addition to community-based services, we offer education, awareness of healthy living, participation in our 12 senior centers and volunteerism. We reach out to the community from pre-retirees to end of life.
We recognize the importance of reaching the pre-retirees who often are caregivers of our older seniors. These
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pre-retirees are the key to the trends identified in future planning.
We need to truly look at rebalancing the long-term care systems in Pennsylvania. There are very clear areas of concern today that I just want to cover.
We lack the availability of the full continuum care for all adults. Low-income adults are at risk of not being able to utilize the personal care home option due to the limited public reimbursement. These homes are becoming a scarce resource for low-income adults and the concern is where will these people live a fewer and fewer options exist.
These individuals or the concern for these individuals is, where will they live when those homes no longer exist if public funding does not step up and support them?
We need to better recruit, retain and pay direct care workers, another issue you have heard today, specifically those home health aides and other paid caregivers who do the actual care for seniors at our homes and other settings.
We need to address the funding inequity created throughout the hold harmless provision without harming any Area Agency on Aging. We need to identify how we will meet the needs of diverse populations including those that are non-English speaking, hard of hearing, which we certainly heard that today, visually impaired and others with disabilities.
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For our senior centers across the state, the focal point for many senior services is the need for additional funding for capital improvements, especially as they grow to meet the increasing needs of our increasing population.
We need to determine how we can meet the needs of all older adults over the spectrum of care from pre-retirement to end of life. That means balancing the system but it also means creative partnerships, planning both at the state and at the local level and utilizing our seniors to have a role in the planning and taking responsibility for themselves. Thank you for allowing me to make comments today.
MS. SULLIVAN-MARX: Thank you. Any other particular thoughts?
(No response.)
MS. SULLIVAN-MARX: I was listening to your comments on pre-retirees. If we’re looking to 2025, one of the things we have to think about is 17 years from now, 55, 60, you’re a pre-retiree. Then in 2025, are you, in particular in York, seeing any neglect of people’s health in that situation because they are caregivers?
MS. KEHLER: Somewhat. We are really trying to be proactive in York and it’s been fairly successful, to try to reach those pre-retirees to do a number of things: One, to make sure that they are planning for their own future financially,
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also promoting healthy living, taking care of themselves, as well as planning for retirement and also being educated on how to care for the older loved ones that they are taking care of.
The thinking is, if we can keep them educated, informed and planned, it’s going to help us down the road with what services we need to provide. We started one year ago offering pre-retiree seminars. We held two the first year. We started two years ago. The response has been so great that we are now holding them every other month.
That population is coming out, that 50 to 60 year old group. They are coming when you offer some educational opportunities for them. But that’s one of the keys for us to be able to develop a system because, as you’ve heard, there’s not going to be enough state dollars and there shouldn’t be. People need to take responsibility.
But sometimes we need to step up and I think that’s part of our role in this system, to step up and make that group aware and begin the planning and the thinking now, not just the financial planning, but about their health and so forth so that there is less of a burden on us in 2025.
MS. SULLIVAN-MARX: Other comments?
(No response.)
MS. SULLIVAN-MARX: Thank you. We just have about ten minutes or so. I’m going to open it up to discussion.
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We have been asking some general questions in former hearings about, are we adequately meeting the needs — and we heard a lot about that today — and do people have access to information that they need?
We talked a little bit today about prioritizing resources and what the barriers are. We heard a lot about that. But our big question which I would like to go to first is, what in Pennsylvania are the strengths of services for seniors?
I think it’s important to think about strengths in any system and any organization because you spend an awful lot of effort talking about all the problems and neglect to build on what we’re doing right, which is sometimes the answer to the solution.
We heard comments in the past that the lottery is a strength at another public hearing. We do have some other sources of funding. I’m going to open it up now to comments on any of those issues or other issues that people want to make.
MS. KEHLER: I think the PACE Program in Pennsylvania is a strength. Having worked with that and worked with other states, I think we are very fortunate to have that prescription drug program for our senior citizens.
MS. SULLIVAN-MARX: I practiced in New Hampshire for several years and there was absolutely nothing for the senior community. I was in a small town and I was caring both
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as a nurse practitioner providing primary care. People would simply run out of drugs. Then the home care agency would call us up and have somebody go out or the other thing is we would just collect drug samples and then give them away.
MR. BARTH: I would like to say, however, I agree. I think the PACE Program was a shinning example of Pennsylvania caring for senior citizens. Now we have Medicare Part D. We have to really take a look at all the funding that we have, including the lottery, including general revenue, including everything else and say, how do we now divide it up?
We need all of these services. We need home health. We absolutely need home health. We need assisted living. We need nursing homes. We need home and community-based services. We have a lot of funding around there including the lottery, including a lot of the other stuff. Is it being spent the way it should be spent now?
Let’s figure that out first and then what is the gap of what money we have available and what we’re going to need. Then we have to decide, how are we going to fill that gap?
Is it going to be, which we advocate, either encouraging or enforcing personal responsibility through some sort of long-term care insurance, whether it’s voluntary or whether it’s like I talked about, the long-term care solution
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and do we need other general fund revenues?
MR. SCANLAN: Steven Scanlan, Center for Independent Living. I think we’re forgetting to mention the most obvious thing of all and to acknowledge that the most important thing is just because a person is 60 or 65, it doesn’t mean they are not part of the solution.
We have a whole population that I hope to be part of some day that will be contributing, whether it’s through volunteering, giving my experience within the issues or helping younger folks. We all and the seniors are part of that solution. I know you are keeping them engaged but acknowledging them. It’s not government doing it for us. It’s government working with clients.
MS. SULLIVAN-MARX: Thank you. Commissioners, anything anyone would like to add?
(No response.)
MS. SULLIVAN-MARX: With that, it sounds like we are nearing lunchtime and moving on. I want to thank the staff, Antoinette Wallet for manning the door and Robert McNamara and Dave Gingrich for presenting.
(Meeting concluded at 12:08 p.m.)
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I hereby certify that the proceedings and evidence are contained fully and accurately in the notes taken by me on the within proceedings and that this is a correct transcript of the same.
Shannon L. Manderbach
Notary Public

COMMONWEALTH OF PENNSYLVANIA OFFICE OF LONG-TERM LIVING
PENNSYLVANIA SENIOR CARE AND SERVICES STUDY COMMISSION

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