Family caregiving in PA with Clay Jacobs, Executive Director at the Alzheimer's Association of Greater PA; Roy Afflerbach, Founder and President at the Afflerbach Group, and Nora Dowd Eisenhower, Volunteer State President at AARP PA
00:00 - Focus on aging adults is sponsored in part by AARP.
00:06 - Pennsylvania has one of the largest aging populations in the country.
00:10 - Our aging adults are vibrant, active contributors to our society.
00:15 - PCN In partnership with AARP,
00:18 - present focus on aging adults.
00:21 - Welcome to Focus on Aging Adults.
00:23 - I'm Larry Casper.
00:25 - This program is brought to you in partnership between PCN
00:28 - and the AARP of Pennsylvania.
00:32 - Today, we're talking about family caregiving.
00:35 - Our guests are Clay Jacobs, director
00:37 - of the Alzheimer's Association of Greater Pennsylvania.
00:41 - Roy Asla Bok, founder and president of the Author book Group.
00:45 - And Nora Dowd, Eisenhower volunteer State president of the AARP of Pennsylvania.
00:51 - Nora, we're going to start with you.
00:52 - When older Pennsylvanians need help with their day to day life,
00:55 - often family steps up first.
00:58 - So try to describe the typical scenario.
01:02 - Good morning,
01:03 - Larry, and thank you for that introduction.
01:07 - While there is a typical scenario,
01:09 - the most common thing we see is that older people want to age
01:14 - in their communities, in their homes, with family and friends.
01:18 - Family is the first line
01:21 - of helping older adults make that happen.
01:24 - We know that there are over a million caregivers
01:27 - in Pennsylvania, and I'm sure that that number is much higher.
01:31 - I hear from people every day who are confronting the reality
01:35 - of what do I do to help my loved one stay home?
01:39 - So it's an issue that we know
01:41 - many people the longer people are living.
01:44 - That longevity bonus has a cost.
01:47 - And often we see it initially be picked up by family members.
01:52 - And it's it's a heavy burden.
01:54 - And often physical and cognitive challenges complicate the situation.
01:59 - Absolutely.
01:59 - And I think when we think of that one in four caregivers in Pennsylvania
02:02 - as caring for a loved one with a cognitive concern,
02:06 - and that brings a whole other suite of issues,
02:08 - which may be things that you hadn't expected
02:10 - or things that are progressive and change throughout time.
02:13 - And how do we navigate that from finances to day to day living to support services?
02:18 - All of those things.
02:19 - And so we may have our plan and we may have those caregiving issues,
02:23 - but then also when cognitive concerns come in, how does that change
02:27 - and how do we need to adapt along the way?
02:28 - I think is one of those subsets that's a very important
02:31 - and unfortunately has a tremendous impact here in Pennsylvania.
02:34 - Well, and of course, we also really don't know
02:36 - exactly when that cognitive concern is going to occur.
02:40 - Sometimes it's masked, sometimes it isn't masked.
02:42 - But people think that it's occurring because the individual loses sight
02:46 - or they lose hearing or they lose a balance.
02:49 - And people seem to think, well, you know, maybe there's something
02:51 - going on mentally as well, when in many cases that just isn't so.
02:55 - And I know from firsthand
02:57 - because as you know, Larry, I cared for my mother for 25 years.
03:00 - Fortunately, it was relatively easy for me because her
03:03 - her needs were basically related to physical needs.
03:06 - It was only toward the very end that she began to have some cognitive problems.
03:10 - So but even at that earlier on, I thought she was having
03:13 - cognitive problems because she began to have macular degeneration.
03:18 - So she could no longer read any longer.
03:20 - She began to be extremely hard of hearing, and therefore
03:24 - it was difficult to communicate with her.
03:26 - And I wasn't quite sure whether it was
03:27 - because she wasn't understanding until we discovered what the issues were.
03:31 - And then that made a world of difference.
03:33 - But again, there was only so much we could do,
03:34 - especially with macular degeneration and so forth.
03:36 - So it's tough. It's it's tough to figure it out.
03:39 - And then once were you and your mom under the same roof?
03:42 - yes. Yes.
03:42 - I brought my parents back from Florida, where they had retired, too, in 1995.
03:47 - My dad passed away in 2001.
03:49 - He had some issues as well, but mother was pretty much able to care for him.
03:53 - But from that point on then, yes, I took mother with me
03:56 - wherever I moved to from that. Yeah.
03:57 - And the reason
03:58 - I ask about that everybody is that obviously logistics are involved here.
04:02 - So what kind of distance is typically between the family and the person
04:05 - they want to care for?
04:06 - How often do they live under the same roof as Roy just described?
04:10 - We know that many people live in other states.
04:14 - Roy mentioned Florida.
04:15 - We know people in the early retirement years or young older people might move
04:20 - to another state where it's warmer, but often they return when they need care.
04:25 - Often they return for grandchildren.
04:27 - Often they return to be part of that family unit
04:29 - that they that they missed or loved ones or friends or neighbors.
04:33 - But we do know that caring for someone in your home while it's demanding,
04:37 - it can be a crisis situation unexpectedly.
04:41 - It is easier than the long distance caregiving that we see so much of today.
04:46 - And when you're able bodied in your cognition is good.
04:48 - It's easy to take these activities for granted.
04:51 - So try to just educate our viewers
04:53 - on the things that they don't think about every day.
04:55 - But suddenly they're a vital importance when they're dealing with an aging parent.
05:00 - Well, just beginning and get up in the morning.
05:03 - Obviously, getting dressed is an issue.
05:04 - But beyond that, it's how do you get your cup of coffee?
05:08 - You know, can I really trust myself to be able to use that?
05:10 - That stove, whether it's electric or gas, doesn't make any difference, really.
05:13 - Can I really trust myself to use that or do I have to do it in a microwave?
05:17 - And if I have to do it in a microwave, I certainly can't use one that's up
05:19 - above the stove because maybe I can't reach that high.
05:22 - I can't see well enough to be safe getting the cup in and out
05:25 - so you get another smaller microwave and you put it down on the counter
05:28 - where it's easy to operate and then you put
05:29 - little fuzzy things on the buttons so they know which button to push.
05:32 - And as long as the cognition is that right? I have to see.
05:35 - This is the kind of insight I'm very interested in.
05:37 - Roy, go ahead, tell us more. Yeah.
05:39 - And as long as the cognition is there, that works fine because they can remember
05:42 - the first to the left, the second on the right,
05:44 - whatever it might be, to be able to do those buttons.
05:46 - Same thing is true with just basic meals.
05:48 - Now, fortunately, in the grocery stores
05:50 - today, you can buy readily prepared meals that are easily warmed in a microwave.
05:54 - Right.
05:54 - So that works well also.
05:56 - But the nutrition isn't always the best.
05:58 - And so there are some difficulties that one has to overcome with that.
06:01 - But the biggest difficulty
06:02 - is the fear of leaving that individual alone for an extended period of time.
06:06 - And of course, in my line of work, there were many days
06:08 - I had to be overnight.
06:09 - So I always had to make sure I had a caregiver
06:11 - that could at least stop in make sure everything was all right.
06:14 - I always had at least two cell phones available to different rooms
06:18 - so that if mother became sort of stranded in one room or the other,
06:21 - she'd still be able to get to a telephone.
06:23 - And I was definitely using the type that she could also put in her apron
06:27 - and carry around with different phones, with different numbers.
06:29 - It just occurs to me.
06:30 - Well, unfortunately, yes, but but you have call forwarding, you say.
06:34 - So I could make sure everything was call forwarded into one phone.
06:37 - And that was helpful.
06:38 - You know, that's that's a really good example.
06:40 - And while having your morning cup of coffee may sound to someone
06:44 - like it's not that important, it's so significant for your independence
06:48 - and maintaining your lifestyle and doing the things that you want to continue doing
06:52 - for as long as you possibly can.
06:54 - But we've not mentioned medications.
06:56 - This to doctors, a number
06:59 - of other things that require more care can be more of a crisis,
07:04 - can make it very difficult for someone who has a full time job,
07:07 - who's now confronted with caring for a family member
07:10 - that needs a lot more support than they needed a week ago or even a month ago.
07:14 - So these are very significant issues
07:16 - for and a little bit of managing contain there can only go so far.
07:19 - Yeah, there's a lot of limitations in there are so many things like that.
07:22 - Right.
07:22 - We think about the breadth of that from whether it's a cup of coffee
07:25 - or in Congo can be as simple as brushing your teeth.
07:29 - You think of how many your first doctor today has autonomy,
07:31 - and that's important to people,
07:32 - very important to those things that make up your day.
07:35 - But then you look at medication management, transportation,
07:38 - looking at social, all those things that are about quality of life
07:40 - and how we engage with others when people are living at home.
07:44 - And as we see these pieces come up as caregivers,
07:47 - how do we do all of that if somebody is able to drive or not?
07:49 - How do we access the places and people and the things they want to be able to see?
07:54 - Being able to attend church or temple, All of those things come in that often
07:58 - we don't think of, but they are what make us who we are,
08:01 - how we engage, how we interact.
08:03 - And all of those things come along in different ways for a caregiver
08:06 - and the people they're caring for, including the simple act of bathing.
08:11 - I mean, obviously, fortunately I was able to get a property
08:14 - and mother could be in that property and we had a very low step in shower
08:19 - because there was no way in the world
08:21 - and the caregiver could have gotten her in and out of the tub.
08:23 - So oftentimes
08:24 - those adjustments have to be made just with the physical property itself.
08:28 - But, you know, it's
08:29 - and sometimes it can be very expensive.
08:31 - So it's difficult for folks that don't have the wherewithal
08:34 - to be able to do that.
08:35 - It can be expensive to overhaul your bathroom and have an idea or two in step.
08:39 - Absolutely. Yes.
08:40 - And you're often doing it when you absolutely need to.
08:44 - Right. That's part of it, too.
08:45 - As things progress, you're realizing something happens
08:47 - and you need to make an adjustment in emergency
08:49 - and you have to deal with condense time.
08:50 - So it's not only those barriers, but it's also then being able to do it versus
08:54 - what are some of the really important conversations to talk about?
08:57 - What's ahead?
08:58 - What could you plan for?
08:59 - What could you be looking at?
09:00 - All of this kind of comes into play?
09:02 - Well, as far as our discussion is concerned, the plot thickens,
09:05 - you might say, when you consider day to day support.
09:08 - Can be hard for family members
09:10 - because they have their own lives and their own responsibilities, too.
09:14 - So that adds up to pressure and maybe things getting overlooked and not done.
09:19 - Well, that's exactly right.
09:20 - And that's why there are some interventions that can take place.
09:23 - We have the adult day services, for example.
09:25 - If an individual truly cannot be left alone
09:29 - for a number of for any number of hours, really
09:32 - adult day services is available.
09:34 - And in many cases, an individual can qualify under Medicaid
09:38 - through the federal government
09:39 - combination state government funding or if they're not that poor,
09:43 - which is one of the bad requirements of Medicaid, sure,
09:46 - then they can be able to qualify under the state's options program,
09:50 - which is very similar to the types of services that Medicaid would provide.
09:53 - But it's funded by the Pennsylvania lottery and it's on a sliding scale.
09:57 - So depending upon the individual's ability to pay
10:00 - for services, that that options program can help.
10:03 - So there are these kinds of interventions that could take place in addition to home
10:07 - care.
10:07 - That's also which is what I utilized when I was out of town.
10:10 - But there's a lot of home care agencies out there,
10:14 - although they too are suffering since COVID
10:15 - because they're having a tough time
10:17 - getting people who are willing to go in to somebody else's house.
10:20 - One of the things we have to remember is that there's not a one size fits all
10:24 - as we age, just as when we were younger.
10:27 - We want to do our own thing.
10:28 - Our families look differently.
10:31 - Each individual has a support system.
10:34 - Some can adjust quickly and pivot when there's a crisis.
10:38 - Some cannot.
10:39 - Most of the people I talked to again, I talked to people in the supermarket.
10:43 - I talked to people that I run into at events where they are paying with
10:47 - with with Clay and with Roy.
10:49 - We work together. We run into people.
10:51 - Most of the people I talked to do not qualify for Medicaid.
10:55 - It is a low income program, so the cost then falls back on the family
10:59 - or the individual, and that can be very challenging.
11:03 - I will also say, though, that I really want to give a plug for adult day centers.
11:08 - Before the pandemic, we saw adult day centers
11:11 - as an alternative to people who go to work.
11:15 - Someone comes for their loved one who's experienced some cognitive issues
11:19 - and they're in a safe place all day, and then they have them home in the evenings.
11:24 - And how are they?
11:25 - How are they distributed statewide?
11:26 - In other words, everybody,
11:27 - our listeners, our viewers want to know if one is nearby.
11:30 - There may be one nearby. They were more before the pandemic.
11:33 - The pandemic was a big hit for adult day centers.
11:36 - Many of them have come back.
11:38 - Check with your local area agency on aging.
11:40 - We'll give the number at the end of the program, I'm sure.
11:43 - Look in your town.
11:45 - Look in your county.
11:46 - There are adult day centers across Pennsylvania and really across
11:49 - the country.
11:50 - It's a good alternative for some people.
11:53 - Right now,
11:53 - it's about 200 of them in Pennsylvania right now that are up and functioning.
11:57 - There's also the life program, which is essentially adult day
12:01 - centers of its own, or IT contracts with existing adult day centers.
12:04 - So if anyone is involved in the life program, that's one avenue also.
12:09 - But as Nora said, the best thing to do is,
12:10 - is to check with the area agency on Aging.
12:13 - There's 52 of them across the Commonwealth.
12:15 - Every county is represented by one of them and they will have the information
12:19 - to be able to forward
12:20 - for not just adult day but any other number of helpers as well.
12:25 - Now, Medicaid's already been mentioned a couple of times
12:27 - so far, and I'm going to return to that subject along with Medicare.
12:30 - But first I just want to talk about our our general attitudes
12:34 - and how people's attitudes evolve over time.
12:38 - As far as the way we view giving day to day support
12:42 - to older Pennsylvanians and what kind of change or evolution
12:46 - have you seen over the over recent years that it's just helping?
12:51 - Well, first, I'm going to tell you what's not helping guide,
12:54 - and that is the demographic boom in this population.
12:57 - People are living longer.
12:59 - They want to age at home.
13:01 - We need care and services and innovations and supports to help them do that.
13:06 - And by helping that individual do that, we're helping families
13:09 - or helping loved ones. We're helping communities.
13:11 - Everyone benefits when someone can stay at home for as long as possible
13:16 - and enjoy that connectivity with their family and friends.
13:20 - Right?
13:21 - So I think that's a really important thing to note here.
13:24 - We're here today in part because the population is growing
13:27 - every day, and it's a huge, huge issue for many, many families.
13:32 - And what
13:33 - Nora's just described, what we call today, home and community based services.
13:37 - When the lottery was established in 1971, and as you know, Larry,
13:41 - I know this because I helped write the bill,
13:43 - that's an indicator of how long I've been around.
13:45 - But when the lottery was established, it was designed for that very purpose
13:49 - to be able to allow people to remain in their home
13:51 - and live in the community
13:52 - for as long as possible and avoid having to go into an institutional setting.
13:56 - And nowhere in the lottery, however, will you find that
13:59 - there is a statement saying
14:00 - this is for home and community based services
14:02 - because we didn't use that term at that time.
14:04 - So that's one of the things that has clearly changed
14:06 - as people have begun to recognize that there's a whole array of services
14:10 - that are necessary for an individual to be able to access from time to time,
14:14 - if necessary,
14:15 - or perhaps all the time to be able to stay in their home and community.
14:18 - But this government's, both the federal and state government, have moved
14:21 - in the direction of recognizing that as well, and have encouraged
14:25 - all the various players in this to begin
14:28 - to focus upon deinstitutionalization, if you will, before it ever occurs,
14:33 - which is let's keep people at home and in the community
14:35 - because it's a lot less expensive. It's where they want to be.
14:38 - It keeps them, frankly, healthier for a longer period of time
14:42 - than if we just default automatically.
14:44 - And that is the one issue with Medicare.
14:46 - You have an automatic default to a nursing home,
14:48 - but you don't have a default to home and community based services.
14:52 - And you mention reframe the question as we talk about perspective.
14:55 - I think as we think of the Alzheimer's Association and those living
14:58 - with dementia, all of those things are particularly true.
15:01 - But it's not only a perception of its reality
15:03 - when 70% of those living with dementia are living at home.
15:06 - And so they have complex needs and things occurring that family caregivers
15:10 - and home community based services need to be able to address.
15:14 - And yet often those who haven't dealt with it directly
15:16 - think of it as the later stages of the disease.
15:19 - The institutionalized care portion of it.
15:21 - But that is not the reality.
15:22 - And even today, more people are being diagnosed younger and earlier.
15:26 - And so it's not only how are we ready for what's here right now,
15:30 - but the years to come.
15:32 - And so your point on, not only have we come a long way, but I think
15:35 - we're even going to see more as our aging population shifts in the coming decades.
15:39 - That's what I'm looking for,
15:40 - is indications of progress and awareness that these things are happening.
15:45 - Well, I think we're seeing innovations.
15:47 - We talk about smart homes.
15:49 - We talk about homes that are you're able
15:52 - to live in them from birth to death.
15:57 - So the universal design aspects of those homes
16:00 - really enable people of all ages to live together.
16:04 - And that's going to make it easier for family caregivers.
16:06 - Many of us live in older houses where we have steps,
16:10 - steps up, and that that can become a crisis.
16:13 - And the crisis as, as we know, is not predictable.
16:17 - So families might not be ready to deal with that.
16:20 - But as we look at advances, that is making communities more livable,
16:25 - which we see in the aging our way, Pennsylvania plan,
16:28 - I think we're really becoming more sensitive to that and to supporting families
16:33 - as they become family caregivers.
16:36 - Science has done a wonderful job, a medical science done a wonderful job
16:39 - of being able to address physical issues and extend life in that fashion.
16:45 - But they haven't found a way to be able
16:46 - to address mental issues and cognitive issues.
16:49 - And that's where we're getting this strong tension.
16:52 - People are living a lot longer.
16:54 - And as Clay knows, when you get into dementia and so forth
16:57 - and you look at the 80 year old and above bracket, you've got a lot more people
17:01 - affected by dementia and cognitive issues then below that.
17:05 - So what's the fastest growing demographic among those who are aging
17:10 - right up there close to the 100 year mark, which means we've got this tension
17:14 - that we really have to figure out how to deal with.
17:17 - And I think there are some exciting things that are happening.
17:19 - One of the examples is you mentioned that kind of changing need piece
17:23 - that strikes me as actually something.
17:24 - There are about two dozen providers who've just received Pennsylvania federal
17:28 - funding, really looking at
17:29 - something called the guide model, which is dementia care navigation.
17:33 - So things we've talked about around
17:35 - physical therapy, occupational therapy, home assessments,
17:38 - but even social work support and nursing support
17:41 - to navigate the various stages of the disease and progression.
17:44 - We're seeing these things
17:46 - where it's this public private partnership just start to come into play.
17:50 - But they are the ways on how do we solve for
17:52 - how do we allow for these solutions to really empower families to do
17:56 - what they need, how they need to, where, where, where they live.
17:59 - And so those are some of the things that I think are exciting to me
18:02 - that a decade ago would have been, you know, we hope we wish.
18:06 - And now you're seeing some of that come into play.
18:07 - It is how quickly
18:08 - can we bring those things to the families who are asking for them?
18:12 - We started off our program
18:14 - talking about addressing basic needs for older Pennsylvanians,
18:17 - and it just occurred to me the other day,
18:19 - very basic need is access to your own home.
18:22 - If it was built 100 years ago and it has five steps leading up to the front door.
18:26 - I saw a fairly complex ramp system made out of aluminum
18:29 - that made it possible for someone to get in that home
18:32 - that someone had to engineer that built it and someone had to pay for it.
18:35 - I wonder if there are funds available that can help make those modifications?
18:40 - Well, yes, there are actually.
18:41 - And again, much of that comes from the lottery
18:44 - and it runs through the area agencies on aging,
18:47 - they do have authority to do home modifications.
18:50 - Unfortunately, when money gets tight and we'll talk about that later
18:53 - as it has become this year,
18:55 - that is one of the things that has to get onto a waiting list
18:58 - because it's obviously necessary and it's very helpful to individuals,
19:02 - but it's not as critical as having a home health aide or something of that
19:05 - nature that for the very personal care that you would need.
19:09 - So but yes, those monies are available.
19:11 - There's federal monies available for that as well.
19:13 - And in fact, a number of local counties throughout Pennsylvania have begun to look
19:18 - at the possibility of how they can help with home modifications, too.
19:22 - And truthfully, it's one of the things that's the easiest thing
19:25 - to do in some ways and the most difficult and others.
19:29 - The front door of a building is generally large enough
19:31 - for someone with a in a wheelchair to be able to get in.
19:34 - But once you're inside that room, especially the older row homes,
19:38 - the doorways aren't necessarily wide enough,
19:40 - including the doorway to the bathroom, which is integral, obviously.
19:43 - So there's a lot of changes that that would have to be made
19:46 - in some of the older buildings that are frankly very expensive and difficult.
19:50 - But there were some interventions that can be made as well.
19:54 - I'd like to talk about the short program.
19:56 - I work with the Philadelphia Corporation for Aging, one of our area
20:00 - agencies on Aging in the City of Philadelphia.
20:03 - The short program is a federally funded program, Senior Housing Assistance
20:07 - Repair Program.
20:09 - I will tell you there's a waitlist for services,
20:11 - but they can do home repairs up to 20 $500.
20:16 - And that's a program that exists across Pennsylvania
20:18 - run by our area agencies on aging.
20:23 - Getting that support when you needed
20:25 - to get that access ramp to the front door can open a world of possibilities.
20:31 - Now, it's not going to help someone if they're in a wheelchair in their house
20:34 - and they can't get up and down the stairs.
20:35 - But let's take this problem as it occurs.
20:39 - The one of the first things people need is to be able to get into their house,
20:42 - into that front door.
20:43 - And there is a program to help with that if you can't afford it.
20:47 - And it is not a hugely expensive repair compared to others.
20:52 - So I will say let's look at each situation individually.
20:56 - Let's see where the solutions may exist.
20:59 - There's not going to be a solution for everything everywhere,
21:01 - but there are solutions out there right now.
21:04 - And I've seen them work and it's it's amazing what you can do.
21:09 - So let's consider to explore solutions.
21:11 - That's a good word.
21:12 - And we're considering day to day care for older Pennsylvanians.
21:15 - So bearing that in mind, we have to talk about the government entitlements.
21:20 - We've mentioned Medicaid a few times, but I want to take a step back from that.
21:24 - And even just consider Medicare.
21:26 - Medicare, government entitlement.
21:27 - When you turn 65 and brief review on which health care expenses,
21:32 - does that pay for it?
21:33 - How about these day to day
21:35 - services for older Pennsylvanians that we're concentrating on today?
21:39 - Well, I will tell you that Medicare does not pay for institutional care.
21:44 - Medicaid is the program.
21:45 - It's a federally funded health.
21:48 - Well, Medicare, health, healthy.
21:49 - For some, it will it will help you for some of those treatments at home.
21:53 - But if you're talking long term and chronic,
21:55 - you're not going to be able to turn to Medicare for help in that area.
21:59 - You're going to have to find other resources
22:01 - unless you're very low income and you qualify for Medicaid.
22:05 - So we need to have other services available as well.
22:08 - So Medicare
22:09 - is there, but albeit for limited time, Low care's there for a lot of things.
22:13 - Medicare is now for preventative care.
22:15 - Medicare is there for hospital care.
22:17 - Medicare can be there for important patients.
22:19 - They're really important.
22:20 - One of the things we think that is keeping people living longer is
22:23 - the great advances we've made in medications.
22:26 - You know, 100 years ago, we didn't have a pill for high blood pressure.
22:29 - We take it for granted now, and it's keeping people
22:32 - alive longer and having a high quality of life.
22:36 - But Medicare is not going to be a solution when we have low and moderate income
22:40 - looking for help in caregiving,
22:42 - they won't pay for that person to come over to your house. No,
22:46 - it's that simple.
22:47 - Our viewers need to understand that. Certainly.
22:49 - Okay. Well, then why don't we get more into Medicaid?
22:51 - And then there's the economics considered there.
22:54 - And Roy, why don't you take that?
22:55 - Because like you said, sometimes from sometimes frustration results
22:59 - when you're above that threshold, that's Medicaid.
23:02 - Well, that's exactly right.
23:03 - And Medicaid is based on two things.
23:06 - But most importantly, it's based upon the financial assets of the individual.
23:10 - It's designed for those individuals who just simply don't have sufficient
23:14 - financial assets to do any kind of private care
23:16 - or get into it, or they don't have insurance.
23:18 - A private sector insurance, or whatever the case may be.
23:21 - The second thing it looks at, of course, is the acuity of the situation.
23:24 - The does the individual qualify on both counts?
23:28 - Do they?
23:28 - Absolutely need the help
23:29 - and are they so poor that they can't afford it any other way?
23:33 - There are people who are able to qualify for both Medicare and Medicaid
23:36 - because Medicare, as we just mentioned, pays for things like hospital
23:39 - stays, it pays for doctor's visits, it pays for medication,
23:42 - it pays for 100 days of rehabilitation, but not anymore than that.
23:46 - So if you need long term care beyond that, well, now where do we go?
23:49 - And then that's when Medicaid kicks in.
23:51 - If, in fact, you need to have institutional care,
23:55 - whether it's in a nursing home or longer than 100 days in a rehab facility,
23:59 - Medicaid can pick up at that point as well.
24:01 - And here's what oftentimes happens to individuals
24:03 - if they're not sufficiently poor or
24:05 - if they have too much in the way of financial assets to qualify
24:08 - for Medicaid, they have to what is called spend down, in other words,
24:12 - spend their own savings, whatever they may have,
24:15 - until their financial assets reach that point where they qualify for Medicaid.
24:19 - So by not allowing to have the ability to at least buy into Medicaid,
24:24 - if nothing else, which has been proposed from time to time,
24:26 - we're forcing people to become poverty ridden before we're willing to give them
24:31 - the the help they need.
24:32 - And what does that mean along that whole path?
24:34 - You can bet that they're getting sicker, not healthier.
24:37 - So do you think it changes in order then, as far as the eligibility parameters
24:40 - are concerned for Medicaid? And of course, we'd love to see a change.
24:43 - We'd love to see more people eligible for Medicaid.
24:46 - We'd love to see those income limits increased.
24:49 - I think it's a hard sell, though, in these days
24:52 - where we'd have to then call on more federal and state dollars.
24:55 - What I'd like to do also, though, is look at what we have in place.
24:58 - What do we have in place
24:59 - in the community for people that may not be income restricted?
25:04 - Let's think about our senior centers or community centers.
25:07 - Think about the activities that we already have
25:10 - that engage people in their community that can keep them healthier longer.
25:14 - Many of those programs are funded with pen care, with state
25:18 - dollars, with local dollars through our area agencies on aging.
25:22 - They are the ones that run senior centers in our communities, and they serve meals.
25:28 - They they they engage people.
25:31 - And we know that loneliness
25:32 - and a lack of connectivity is almost as bad for you as smoking.
25:36 - So let's just look at that to prevent people
25:39 - from getting to the point where they get very ill and they need more care.
25:45 - Let's see if we can extend that time where people are healthy,
25:48 - where they're actively engaged in the community.
25:50 - And that's really what we're about here today.
25:51 - That's what our area agencies on aging focus on doing.
25:55 - In addition to serving very low income, vulnerable individuals.
25:59 - And that's what the aging our way is about,
26:02 - extending the productive life that we have in our communities
26:06 - so that we don't need these.
26:07 - This would be the governor's agenda for like today.
26:10 - Yes, absolutely.
26:11 - Governor SHAPIRO has has really pushed this agenda.
26:14 - We in the aging everything manifesto lately,
26:17 - I need ten tangible evidence that we're going ahead with that agenda.
26:20 - Who can update?
26:22 - I bet there's an Alzheimer's office being talked about.
26:25 - Right. So there is certainly a subset of that.
26:26 - And I think it is it's an exciting thing, right, to have what was an appropriation
26:31 - of 1.9 million to establish this Office of Alzheimer Disease and Related disorders.
26:35 - It is a space where the governor and legislative champions have stepped in
26:39 - to make that possible, really to bring Pennsylvania up to speed
26:43 - to our counterparts throughout the country on here
26:46 - is dedicated staffing that's looking at policy issues and support services
26:50 - and really coordinating for this incredibly large population
26:54 - with complex issues.
26:55 - As we look at that right now, as we see that
26:58 - move, having moved through the budget, it is then how does that manifest?
27:01 - How does that engage with the area sees on aging, the enabling legislation
27:05 - that includes things like the state plan and the stakeholder group
27:09 - and actually identifying priorities each year is still in process,
27:13 - but it is that initial investment that the governor, the Secretary of Aging
27:17 - and others have stepped in to say this is a space we need to do more for
27:21 - because we know Pennsylvanians need it and deserve it at this point.
27:26 - And so it's certainly exciting to see.
27:27 - Well, Claire, I'd like you to keep the floor
27:29 - for a couple more minutes on the subject of Alzheimer's disease in general.
27:33 - In other words, I'd like to start with what developments have been made
27:36 - in the recent past that help us understand Alzheimer's disease better.
27:41 - So I think it's exciting.
27:42 - And Pennsylvanians
27:43 - in particular should be incredibly proud because so much of what we've learned
27:47 - recently has its foundation in Pennsylvanian institutions.
27:51 - When you think of things like the imaging techniques used to look at the disease,
27:56 - they were initially developed at places
27:57 - like the University of Pittsburgh and the University of Pennsylvania.
28:00 - So now Alzheimer's shows up on a picture and it didn't used to
28:02 - it does so and not only that, but multiple biomarkers.
28:06 - So we're entering a world where in research settings
28:09 - we can look at functional pet imaging, we can look at things
28:12 - like cerebrospinal fluid and diagnose accurately.
28:14 - But we're also on the cusp of things like blood biomarkers,
28:17 - being able to in a blood test, actually be able to diagnose Alzheimer disease
28:21 - and identify even get some symptoms less invasive than others is
28:25 - what I'm getting are and you look at cost and accessibility
28:28 - and all of those other things to think of the difference between
28:31 - a lumbar puncture or a spinal tap to diagnose versus a blood test as a part
28:35 - of a regular panel and identifying before you see symptoms potentially.
28:40 - We also see just in the past few years the first FDA approved
28:43 - treatments ever for.
28:45 - So what's the latest on treatment? This is exciting to hear about.
28:48 - It is so so
28:49 - there are three FDA approved treatments that showed benefit in clinical trials
28:53 - around actually reversing amyloid accumulation, essentially the protein
28:56 - buildup in the brain, not just slowing progression, but reversing it.
29:00 - Really.
29:01 - There are proof for the earliest stages of the disease.
29:04 - And what they showed in those trials is keeping the disease from progressing.
29:07 - So not a reversal, not a cure, but if administered early,
29:11 - the sooner you get that from, which then brings in to things
29:14 - like how are we diagnosis, How are we talking about this?
29:16 - How are we then supporting folks to notice point earlier?
29:21 - It also looks at how medical science
29:23 - has allowed us to live longer and live quality lives longer.
29:27 - I mean, that's the
29:27 - the era of treatment is something rendering to their the first rate.
29:31 - So we will hope to see continued better
29:35 - options, more accessible options across other dementia.
29:38 - But it is something that, again, a decade ago would have been pie in the sky.
29:43 - It would have been a wish.
29:44 - And so much of that work
29:45 - is happening here in Pennsylvania as well across our institutions that really those
29:49 - who are involved in trials are leading globally and have access to things
29:53 - that you wouldn't be able to elsewhere in the country.
29:55 - And I think education is so important here.
29:57 - Building on what Clay said,
30:00 - people historically thought, I don't want to know if we have dementia.
30:03 - Don't tell me it's such a terrible diagnosis
30:06 - that goes to changing attitudes that we were talking about before.
30:09 - There's something and the earlier you get in with some of the medication,
30:13 - the better chance you have at maintaining without.
30:16 - So you should embrace that early diagnosis and not try to avoid it.
30:19 - Well, I think you should.
30:21 - And right now, education is the key.
30:23 - And that's why having an office now within the Department
30:25 - of Aging in Pennsylvania, I think, can make a real difference.
30:27 - And how do we educate the public and the sector
30:30 - as well, physicians and because the systems piece about it.
30:34 - Right.
30:34 - So if you're in a world where you can diagnose
30:37 - that the primary care setting with a blood, there are treatments.
30:40 - But to see a specialist could be a 9 to 12 month wait.
30:43 - You know, all of this complexity comes into play.
30:45 - And then once you do it is to the point earlier, right.
30:48 - We we do the best we can at the moment we can
30:51 - all of this work is how do we reach people early to help them
30:53 - know what to navigate, Being able to access things like the AIDS
30:57 - in aging, to know what resources and services are available.
31:00 - That idea of aging our way.
31:02 - A plan on how we age.
31:05 - Just then, this short conversation,
31:07 - you see the complexity of all of these issues
31:09 - or other disease states or all of these pieces
31:11 - and being intentional about that just has so much benefit to the Commonwealth,
31:15 - but ultimately to the individuals impacted.
31:18 - And our aging population overall.
31:20 - Claire, you said the new Alzheimer's office
31:23 - is still in the stage where they're establishing their priorities.
31:27 - So what's been built up so far?
31:28 - In other words, is there leadership, Is there a clear agenda?
31:31 - And of course, most importantly, the funding.
31:34 - So I think key is the funding.
31:36 - We're seeing those piece.
31:37 - I know
31:39 - they're looking at what those roles would be.
31:41 - How is it
31:42 - because, by the way, our viewers need to know that anybody know
31:44 - the exact name of this Alzheimer's office within government.
31:47 - So I think the closest we've seen it is under the Department of Aging
31:50 - and Office of Alzheimer Disease and Related Disorders. Correct.
31:52 - We're seeing what those we go
31:54 - on that website, we might find mention of the Pennsylvania Department of Aging.
31:57 - You'll see mention of it. Yes.
31:59 - Yeah. Because it's really being built up now.
32:01 - I think one of the pieces and Roy and others have been active in this piece
32:05 - is that there is legislation that is enabling this work
32:09 - setting standards, putting in some additional accountability
32:11 - and kind of where we are in our legislative session.
32:14 - Some of these things are happening at parallel pathways,
32:17 - and that's one of the interesting pieces here.
32:19 - So it is really around how we do some of that and how do we do it
32:23 - that is looking at this is this is not solely an aging issues
32:26 - to public health crisis right across this work.
32:29 - And some diagnoses are coming in earlier than they used to.
32:33 - Certainly certainly in issues like brain health
32:35 - and risk reduction of that is, yes, forces maybe.
32:39 - I think I've seen early onset
32:42 - Alzheimer's as young as in the fifties,
32:45 - but we're also seeing a lot of information coming out about brain health
32:50 - and how to protect your brain in the long run.
32:54 - So sometimes it's diet, sometimes it's exercise it's all the same things
32:58 - everybody says about everything, I think in some ways, but it's keeping active.
33:02 - And again, I'm going to go back to social connectivity.
33:04 - One of the things we see is that people
33:07 - who engage more, who have more friends and it's not just a numbers game,
33:12 - but who are socially engaged more are less likely to have
33:16 - some of the mental health issues that we see and cognitive decline
33:19 - can be connected with it. I think we're seeing a bit of that.
33:21 - Absolutely.
33:22 - In fact,
33:22 - in this November, the Department of Aging is hosting a forum on brain health
33:26 - because we know that things
33:28 - like social activity, mental activity, diet and exercise
33:31 - outside of pharmaceuticals are the greatest things we can do
33:33 - to reduce our impact, to build that kind of neuroplasticity city
33:36 - and capacity Exercise is good for the brain.
33:40 - It is, absolutely.
33:41 - Yes, absolutely. So it's exciting.
33:43 - And that's Pennsylvania.
33:44 - We'll have a forum to do that actually just coming up
33:46 - in a couple of months here, which is exciting as well.
33:49 - Yes. And in addition to as as Nora and Clay have mentioned,
33:52 - the change of attitudes and you, too, Larry, brought this up,
33:55 - the change of attitude is phenomenal because right now, Alzheimer's, brain
33:59 - health, etc., is in a position where cancer was about 40 years ago.
34:03 - No one wanted to talk about it.
34:04 - Everybody was afraid of it. You know, what's early diagnosis?
34:07 - What I can tell you as a cancer survivor, early diagnosis is everything,
34:10 - because that's I've been I was diagnosed in 2001
34:14 - and had the operation and everything has been fine since then.
34:18 - Without that early diagnosis, I may not be around today.
34:21 - We were learning the very same thing is now true about Alzheimer's and dementia
34:25 - that the earlier, as everyone has just said, that you can talk about it,
34:29 - that you're willing to talk about it
34:30 - and get a diagnosis, the better off everybody is.
34:34 - Okay, one more question about Alzheimer's disease in general, and often
34:38 - Alzheimer's disease and dementia, those terms are interchanged.
34:41 - I want to know what is the difference?
34:44 - So it's a great question.
34:45 - I think particularly important because as medical science is improved,
34:49 - those variations are so dementia is a big umbrella term.
34:52 - We see symptoms and facts. It's a syndrome.
34:54 - We see personality changes, memory changes or other components.
34:58 - There are things that may manifest that way, like you mentioned earlier,
35:01 - like hearing difficulties or visual impairment.
35:04 - But then there are also medical issues.
35:06 - But again, dementia is that big umbrella.
35:09 - Alzheimer disease tends to be the most common.
35:10 - But even as we learn more,
35:11 - we we know things like vascular dementia or Lewy body dementia
35:15 - are increasing to ultimately it's we're seeing some of the same symptoms.
35:20 - But what's happening in the brain is different.
35:22 - And as we get to a world of treatment, an accurate diagnosis in those pieces,
35:26 - it would be the same 40 years ago of saying all cancer is the same cancer.
35:29 - That's not the case.
35:30 - How we approach it, what it impacts is different.
35:33 - And so that dementia, umbrella term Alzheimer's disease is the most common.
35:36 - But then even as we talk about Alzheimer's treatments, it is just treatment
35:40 - for a cognitive impairment of Alzheimer disease.
35:42 - So there are all of these other things
35:43 - that we're progressing and trying to approach
35:46 - so that that that personalized medicine approach
35:48 - in a community setting, the care issues are very much the same.
35:51 - And so it is important for us to address those issues holistically.
35:55 - For people who live at home, the symptoms may be different,
35:58 - but the same challenges exist for
35:59 - for the whole population dealing with cognitive issues.
36:03 - I think it's also important to recognize that even though
36:05 - the implementing legislation is still awaiting passage,
36:08 - the legislature has currently bought
36:10 - into this the $1.9 billion appropriation has been made.
36:14 - There is language in the fiscal code which specifically instructs
36:18 - the Department of Aging to establish this office
36:21 - and as soon as possible, there are four departments
36:24 - that are engaged in a cooperative effort to do that.
36:27 - It's the Department of Aging, Department of Human Services.
36:30 - The Department of Labor, interestingly enough, and the Department of Health.
36:34 - So there's a true effort to be able to get behind this already
36:37 - approved by the legislature.
36:38 - The final piece has to be done either Senate Bill 840 or House Bill 2400,
36:43 - to create the ability of having the advisory committee and a
36:46 - few of the other things that are required in order to make this whole thing work.
36:51 - So when those things are finalized, Roy, you think this will really take off?
36:54 - Is that holding it back in any way? Now?
36:56 - Didn't occur to me
36:57 - that you still had to do some legislative dotting of I's and crossing TS.
37:01 - yes, Yes.
37:02 - I don't know that that's holding it back because there's a lot of preparatory work
37:06 - that needs to be done, that can be done with the knowledge that the legislation
37:10 - is going to be passed, which bill it is doesn't really matter in that at all.
37:13 - And we have every indication that when the legislature comes back into session
37:17 - this month and again in October, that one of those two bills will be passed
37:21 - and sent to the governor for a signature.
37:23 - So I don't think it's holding it back at this point, with the exception
37:26 - of being able to organize the advisory committee and appoint those individuals.
37:30 - And by the way, that's quite a large committee.
37:32 - There's at least 28 people just by my rough count earlier this morning.
37:36 - Yeah.
37:37 - And the exciting thing, too, is, is Pennsylvania at a point
37:40 - where you can learn?
37:41 - I think the administration has done a wonderful job looking at other states
37:44 - and other populations who had some of these piece in play.
37:46 - And how do you learn so that you can move this from idea to practice?
37:51 - That's not always the case. We're looking at other states.
37:53 - There's a pathway here.
37:54 - There's a pathway. We've seen places like Georgia.
37:56 - South Carolina is a great example
37:58 - where these dementia care navigators working with their age, they're aging.
38:01 - So right in your backyard you're able to navigate care.
38:04 - But it came out of this type of state plan and learning
38:07 - from other people's experience. I like the sound of that.
38:09 - It's an exciting thing, and I think it's something
38:11 - that really the secretary and the administration
38:13 - have done a great job really looking at those so that we can move this
38:16 - to impact and benefit Pennsylvanians as quickly as possible.
38:20 - I Roy, let's go back to you and just consider your basic background
38:24 - and the kind of work you do now, like under your name.
38:26 - We put the Answer back group.
38:28 - So what is that the answer group is basically basically
38:32 - a consultancy group, although we do some direct lobbying as well.
38:35 - We represent the area agencies on aging for their organization and individual.
38:40 - Some of the area agencies we represent adult day centers, senior centers,
38:44 - the Southwestern Pennsylvania Partnership for Aging, Meals on Wheels,
38:48 - and at the national level, we also represent National Adult Day Services.
38:52 - The the reason we brought all these groups together into this one
38:55 - umbrella is because they all have not just similar interests, but also
38:59 - similar stake in making sure that whatever we do in terms
39:03 - of trying to address aging issues, we do it in the right fashion
39:06 - and we do it as a collaborative, more so than as a competitive business.
39:11 - And believe me, sometimes, you know,
39:12 - I've been involved in turf battles all my life.
39:14 - When I was in the legislature, I chaired the Professional Licensure Committee.
39:17 - And if you want to talk about turf battles, get in there.
39:20 - But the fact is that they don't have to be turf battles
39:23 - because there are cooperative ways in which these groups can work together.
39:26 - And they do, and they do.
39:28 - We've been able to get that done.
39:29 - We were disappointed, very disappointed in the legislature
39:32 - and the governor's office this year with respect to the budget
39:35 - and the fact that a number of things were held flatlined at last year's level
39:40 - despite inflation, despite the fact that the ARPA funds, as
39:44 - they're called the American Rescue Plan Act, are going away,
39:46 - do they directly affect the area agencies on aging?
39:49 - Absolutely.
39:49 - Directly affects area agencies on aging across this commonwealth.
39:53 - Every one of those 52 agencies, which means every one of the 67 counties
39:57 - is going to be
39:58 - trying to operate on less money this year than they did last year, despite
40:02 - the fact that the number of individuals requiring assistance is increasing,
40:06 - the number of applications for assistance is increasing.
40:10 - It's just unfathomable to me how the legislature could ignore that.
40:14 - And it wasn't a great amount of money that the department was seeking,
40:17 - in addition to what they already receive as a 5% increase, $15.2 million
40:21 - to be able to support these programs put out by the area agencies on aging,
40:26 - we are working with legislators now to be able to effectuate a transfer
40:30 - from the lottery funds because remember, these are all lottery
40:33 - funds funding TennCare.
40:34 - The only other funds coming in to Penn Care
40:36 - in the Department of Aging that are not lottery or federal funds.
40:39 - There are no state tax dollars funding either the department,
40:41 - the operation of the department, or any of the programs.
40:44 - So we have the lottery fund.
40:46 - There's enough balance in there.
40:47 - The estimates are most lately
40:49 - received is about a $200 million balance will occur at the end of the year.
40:53 - There's plenty of money
40:54 - there to take 15.2 million and give these Triple A's the ability
40:58 - to carry on above and beyond what they had to live with last year.
41:02 - So that's a matter of moving the money
41:04 - from the lottery to the Department of Aging, correct?
41:06 - That is it.
41:07 - It's as simple as that.
41:08 - Authorizing the governor to make a transfer from the
41:11 - from the lottery fund directly to the Department of Aging pen care line item.
41:14 - And why DeLay doing that?
41:15 - And I bet with your insight as a lawmaker, you can give us a hint.
41:18 - Well, there are a number of things.
41:19 - There are some people that don't want to admit
41:21 - they made a mistake by not putting it in the first place.
41:23 - There are some people who are still concerned
41:25 - that the lottery is going bankrupt, which it never has, never.
41:28 - I wouldn't say never will. That's a long time.
41:30 - But clearly there's no indication that that's going to happen.
41:33 - There are some people who just don't understand the situation.
41:36 - There are and I mean, literally just don't understand the situation,
41:38 - not through any fault of their own because it wasn't explained to them.
41:41 - Think the lawmakers are expected to be experts on everything,
41:45 - but they're not right?
41:45 - That's exactly right.
41:46 - And I especially can't be if the Senate, which is done now for a few years,
41:50 - doesn't hold an appropriations hearing for the Department of Aging.
41:53 - The House does.
41:54 - To their credit, the Senate gave up that idea.
41:57 - I don't know, ten years ago, perhaps on the idea that, well, since
42:00 - it's not state tax money,
42:02 - it's off budget, so to speak, and therefore
42:04 - we don't have to hold a public hearing on it.
42:05 - Well, that's just garbage.
42:07 - And we've been working with Senate leadership to try to get them
42:10 - to understand that and come back to at least an appropriations hearing.
42:14 - But then you also have something which is known as a tracking document.
42:17 - And again, the House and the governor's budget office do this.
42:20 - And that tracking document lists every expenditure
42:23 - that is proposed in the budget by department by line item
42:26 - and how much the governor is proposing for it.
42:29 - Well, guess what?
42:29 - There's no tracking document for the Department of Aging.
42:32 - So when the members go into their various meetings to discuss the budget
42:35 - and so on, see a tracking document for the entire general fund,
42:39 - which is state tax money and federal money,
42:41 - and they see some reference to the federal money
42:43 - that will go to the Department of Aging,
42:45 - but they don't see a tracking document for the Department of Aging
42:48 - and how the money is used within that department.
42:50 - That's got to change as well.
42:51 - So we're we're advocating that in addition to a piece of legislation
42:55 - to authorize the governor for a transfer,
42:57 - if we can get that done in the few session days and there's only 11
43:00 - session days left for the House and Senate combined,
43:03 - if we can get that done in this period of time,
43:07 - the the potential difficulty will be, well, not potential.
43:10 - The absolute difficulty will be abated.
43:12 - But if it's not done until next spring,
43:15 - that's a difficult situation because already the cuts
43:18 - in the waiting lists and so on will have been established.
43:20 - You know, that is such an expert analysis.
43:22 - I don't think I could get anything to it, but I will.
43:25 - And that is waiting lists.
43:27 - What will the agencies on aging do with this shortfall in funding
43:31 - that they expected up until the very last minute?
43:35 - They will waiting lists for services, whether it's Meals on Wheels,
43:38 - whether it's an options program, whether it's senior centers,
43:43 - which we mentioned
43:43 - earlier, is sort of the last bastion of activity in the community.
43:47 - That's not means tested and that exists
43:51 - in almost every community across Pennsylvania.
43:54 - So there are real consequences to this.
43:57 - Simply, some places can get longer.
44:00 - They will get longer as a result of this year's budget and priorities.
44:04 - Well, a Nora, while you're talking, I want to make sure we talk a little bit
44:08 - about AARP of Pennsylvania.
44:10 - And of course, you'll be hoping I get to that.
44:12 - So you're here representing AARP in Pennsylvania.
44:15 - And tell us briefly what your involvement is.
44:18 - My involvement is as a volunteer state president.
44:21 - So those of you who already have a state president.
44:24 - Right. Why they need to volunteer, why they don't have a state present.
44:26 - They have a state director.
44:27 - Thank you.
44:28 - So that state director is a staffer and there is an AARP office
44:32 - in every state across the country.
44:33 - Many in our legislative capitals.
44:36 - My job as a volunteer state director, you know, I'm a lawyer by training.
44:41 - So I really see it as my pro-bono obligation
44:44 - to work in the community, to work on these issues that I've gotten paid
44:48 - for for so many years in various levels of government.
44:51 - And that is focusing on the aging population and making
44:54 - sure as it grows, it has what it needs to flourish.
44:58 - You know, it can be different things for different people.
45:00 - But at AARP, what we're really focused on is education, is engagement
45:05 - is making sure people know how to vote, where
45:08 - to vote, issues that really are bread and butter issues for our population.
45:12 - Aside from the issues we've talked about today
45:14 - and caregiving is a big issue for us right now.
45:17 - We're making sure that we talk to every candidate about their stand on caregiving,
45:23 - where they stand on this issue, how can they help people who are in family
45:27 - caregivers, who are really in a crunch and in a crisis right now?
45:31 - Many, many of them.
45:32 - So those are just some of the issues that we're working on at AARP, Pennsylvania.
45:37 - We have 2.8 million members across the state.
45:40 - Now. Roy gave us a report on legislative progress, pretty comprehensive
45:45 - on funding there and how it's affecting the area agencies on aging.
45:49 - So let's consider then we'll go back to something
45:52 - we talked about before the governor's plan called Aging Our Way.
45:56 - I just so our viewers, we keep them on the tracks here.
46:00 - What's happening with the budget immediately doesn't necessarily
46:02 - have anything to do with his agenda for aging, does it?
46:06 - No, I think it does.
46:08 - I think that aging our way, Pennsylvania is a framework.
46:12 - If you will, that the Department of Aging and others across
46:15 - government and partners across Pennsylvania have been working on.
46:18 - It grows out of a lot of activities related to livable communities,
46:22 - which is something that the World Health Organization talked about 20 years ago.
46:27 - So it looks at your community and gives you ways to evaluate how livable it is.
46:33 - And it's really about living at home, living in your community
46:36 - as long as possible.
46:37 - One of the items to come out of that is the office, the Alzheimer's office.
46:43 - I'm going to call it the shorthand,
46:45 - and that was funded and we're very excited about that.
46:48 - We think it's a huge opportunity for Pennsylvania,
46:50 - but there are other things in aging our way, Pennsylvania,
46:54 - that still need to be funded.
46:55 - But it's a long term plan.
46:57 - It's something that we want to go back to.
46:59 - We want to work with it.
47:00 - We want to tweak it each year.
47:02 - We want to look at the issues that we're facing.
47:04 - Where is there most growth in the population?
47:06 - Where is there more need?
47:08 - How has the dementia
47:10 - played out in our
47:11 - office with these new developments you just heard we're talking about today.
47:14 - So we're keeping our eye on that.
47:16 - And so aging our way.
47:17 - Pennsylvania is really about looking at those issues
47:20 - and looking at the area Agency on Aging network and everything
47:24 - we have in place to keep people at home and in their communities longer
47:28 - and making sure flourishes.
47:30 - And that's the overarching goal that Governor SHAPIRO has stated
47:33 - that our secretary of Aging, Jason Coolidge, has talked about.
47:36 - And that's really why we're here today to talk to you about these issues
47:39 - and aging our way didn't just come out of the
47:42 - think tanks somewhere around the country or what have you.
47:45 - In Pennsylvania.
47:46 - The area agencies on aging came together
47:49 - and held over 200 forums, if you will, for individuals to come in
47:55 - and tell the officials who were sitting there,
47:58 - here's what we mean, here's what we think should be done.
48:00 - They call them public hearings, right? Well, that's right.
48:02 - That's exactly right.
48:03 - And so over 200 of them, there were well, thousands of thousands of comments
48:07 - that came out of those hearings, as well as others
48:09 - that were sent in via email or what have you.
48:11 - So this plan was was really developed and devised out of all these people's
48:15 - thoughts and desires of what they felt were necessary and how it should be done.
48:21 - The governor then, or rather the governor and the Secretary of Aging,
48:24 - asked for an $11.9 million appropriation in the budget
48:28 - to be able to begin implementing all these different sections of the plan.
48:32 - The legislature thought that was too much of a bite at one time,
48:35 - and it would take time to gear up and ramp up and so forth.
48:37 - And so they approved,
48:38 - I believe it was 2.9 million, basically, which is designed for caregiver support.
48:43 - Now, that's clearly helpful and clearly necessary,
48:46 - and it gives the department a starting base from which to begin.
48:50 - And I think they they're in the process of doing that right now.
48:53 - But you can see there was a huge difference
48:55 - between an 11.9 million request and a 2.9 million or 2.5,
48:58 - whatever It was in that range for that just one piece of it.
49:02 - What's going to happen with the rest of it?
49:04 - The new budget
49:05 - that is proposed in February may give us an indication of that.
49:08 - But at this point, as Nora said, it's a long
49:11 - term process and supposed to be a dynamic living process.
49:15 - So hopefully we'll keep working through it.
49:18 - And let's consider
49:19 - a law that's been in place since 1965 called the Older Americans.
49:23 - And so let's try to put our discussion now.
49:26 - Let's dovetail our discussion today with whatever that provides
49:30 - as far as entitling rights and benefits for older Pennsylvanians.
49:34 - It's extremely important because the
49:38 - funding from the Older Americans Act comes directly into the area
49:41 - Agencies on aging.
49:43 - And one of the principal requirements for the older Americans is
49:46 - it sounds like federal funding is for funding.
49:48 - That's exactly right.
49:49 - One of the principal requirements
49:51 - is that there be at least one area agency of aging in every state.
49:55 - Well, a state like Pennsylvania needs more than one
49:58 - in Rhode Island's gotten a well, perfectly gotten well done with only one.
50:01 - But, you know, their their entire land
50:03 - base is less than the county of Allegheny in Pennsylvania.
50:05 - So the states vary in the numbers that they have.
50:08 - But the most important aspect of that is nutrition and meals.
50:13 - It's expanded beyond that for other services.
50:15 - But it was really that which got started with the Older Americans Act back in 1965,
50:20 - I believe, and that became the hallmark of the act,
50:24 - if you will,
50:25 - because the various candidates for president in 1960, in 1964,
50:30 - going around the United States, were just appalled at the amount of people
50:34 - that just simply did not have sufficient meals and sufficient food.
50:38 - So the idea of congregate meals and setting up a senior center, again,
50:41 - a mandatory portion of the act is there for that purpose.
50:45 - Home delivered meals has been added to it.
50:47 - A number of other things as well.
50:49 - We're very concerned right now because the ACT expires
50:53 - this year at the end of this month, actually.
50:55 - And Washington has failed to renew it.
50:57 - How often do you have to renew it?
50:58 - Every five years is what they've been doing.
51:00 - I don't know that there's a requirement that it be every five years,
51:03 - but they've chosen to do it in every five year increments.
51:05 - It expires.
51:06 - As I say, this year, I believe it's September 30th.
51:09 - Congress has been very slow in terms of getting anything together to renew it.
51:13 - The Senate has been moving pretty deliberately to do so.
51:15 - The House hasn't even been talking about it at this point.
51:18 - Any tweaks expected the older Americans act?
51:20 - I mean, since you renew it every five years,
51:22 - it's tempting to take a good look at it and update it.
51:24 - That's right.
51:25 - And I think there will be some tweaks added to it.
51:27 - But the real problem is lies in the House where we have members
51:31 - who absolutely just want to do away with it.
51:32 - They feel that it's outlived its usefulness
51:35 - and they are basically is it maybe redundant with some other funding source?
51:38 - So what's their reason?
51:40 - Well, their reason, I suspect, is they want to cut back on the budget.
51:43 - There really isn't any good reason that's been put forth.
51:45 - But it is what has been holding up consideration
51:48 - in the House of Representatives in Washington that's going to pass
51:51 - once this election is over in November.
51:53 - I am sure that the act will be taken up,
51:55 - probably not until next year, when all the new members of Congress are sworn in.
51:59 - But I don't see it going away by any means.
52:01 - And I do see some tweaks taking place to modernize it, if you will,
52:05 - and to address some issues that have been of a concern for some time.
52:08 - Because, you know, five years ago, we didn't have the type of virtual
52:13 - and electronic communication that we have today.
52:15 - So some of those things have to be updated.
52:18 - But yeah, it's extremely important.
52:19 - ACT We have about 5 minutes left in our program, so let's circle
52:23 - around to daily caregiving here and certainly our viewers are out there
52:27 - and they have questions.
52:28 - So what should they do right now if they encounter some of these problems
52:33 - with older parents who obviously need some help at home,
52:37 - what can they do to tap into available funds out there?
52:41 - That's the key.
52:43 - well, I think they should start with their area agency on aging.
52:45 - And let me just say that in Philadelphia, it's called the Philadelphia Corporation
52:50 - for Aging.
52:50 - In Montgomery County, it may be called something else.
52:53 - And Allegheny County and Pittsburgh, it may be called something else.
52:57 - So I'm going to just suggest Google Area Agency on aging in your life.
53:01 - Sounds good.
53:02 - I mean, we can give you the I think it's P for a P
53:06 - for a Dawg Pennsylvania Association of Area Agencies on Aging.
53:10 - Who's going to remember that it's a lot of age.
53:12 - But if we start somewhere looking for aging services where you live,
53:17 - get to the area agency on aging.
53:19 - They have an information and help line.
53:21 - It is a really important place to start.
53:23 - Now, you may be disappointed if you don't qualify for services,
53:27 - but there are services in the community that you can pay for.
53:31 - And if you can't afford those services, there are some services Senior center,
53:35 - some Meals on Wheels.
53:36 - Do not look at financial eligibility.
53:39 - So you may be able to take advantage
53:41 - of some of those services and to explore all these possibilities.
53:44 - It's challenging. Don't give up.
53:46 - Keep, keep trying.
53:47 - But Google Area Agency on Aging in your location.
53:51 - And if you'll excuse me, please go ahead.
53:53 - Go ahead, please.
53:54 - One of the things it's just an add on to that, because Air Peace
53:57 - and the Alzheimer's Association also have a site community resource finder.
54:01 - That's true.
54:01 - Which not only on your local area,
54:03 - it's an aging, but if there are other questions,
54:05 - you have other resources, support services and other pieces.
54:08 - So we have those.
54:09 - But I think that's a great example of
54:10 - with your zip code, getting that targeted information right in your backyard.
54:14 - Right. It's really local.
54:16 - What you want to find out to stay at home and stay in your community is
54:19 - what does your offer to support you right now?
54:22 - There are many websites you can look at.
54:24 - It's a great idea to mention AARP, of course, and their resources
54:28 - and the Alzheimer's Association
54:30 - and pay for it. So those are just a couple people
54:32 - have to know that these programs are out there.
54:34 - So that's why you can feel isolated.
54:35 - But definitely you got to reach out.
54:37 - And if you don't have access to it for whatever reason,
54:40 - to websites and computers and pick up the telephone, it's a good
54:44 - either you or your neighbor probably has a telephone.
54:45 - Pick up the telephone.
54:46 - I can assure you,
54:47 - if you call any legislators office, whether in the House or the Senate,
54:51 - they will be able to direct you to your local area agency
54:54 - on aging as well, your county commissioners, your county executive,
54:58 - your mayors in many cases in the municipalities,
55:01 - they all have these directories that will be able to say,
55:04 - every agency on aging or aging services to which they can direct you.
55:08 - All right.
55:08 - Our guests have been Clay Jacobs, executive director
55:12 - of the Alzheimer's Association of Greater Pennsylvania,
55:15 - Roy Arthur Bok, founder and president of the Arthur Bach Group.
55:19 - And Nora Dowd, Eisenhower, volunteer state
55:22 - president of the AARP of Pennsylvania.
55:25 - Thanks, everyone.
55:26 - Thank you. Thank you.
55:27 - That's for Focus on Aging Adults.
55:30 - I'm Larry Casper.
55:31 - Thanks for watching.
55:53 - And Focus on aging
56:01 - adults is sponsored in part by AARP.