- [Announcer] This program is made possible through support from the Pennsylvania Department of Aging.

In partnership with All One Foundation and Charities.

(upbeat music) from Harrisburg Area Community College, WVIA and WITF present: Aging Together in PA Town Hall: Building the Future.

And now moderator, Julie Sidoni.

- Hello and welcome to Aging Together in PA, a Town hall discussion presented in part by WVIA and WITF.

I'm Julie Sidoni, director of journalism at WVIA.

One year ago, we started an initiative with the Pennsylvania Department of Aging in an effort to get the message out about the resources available to millions of older Pennsylvanians and to the people who care for them.

This town hall, which is being recorded in Harrisburg, is the culmination of that project.

In just a bit, we'll hear from a caregiver about the many difficult decisions she has had to make caring for her mother and from other experts who work every day with the older adult population.

(upbeat music) - One in four Pennsylvanians over the age of 60, that will be one in three in 2030.

- We have a greater responsibility to care for them as they age.

- Transform communities all across Pennsylvania, to really push back on ageism, to really help everyone understand what elder justice truly means and to really show everyone aging our way in Pennsylvania is truly the best way it can happen.

- It's important for a community to have resources where people can still meet each other, check in on each other.

- It could be as simple as knocking on your neighbor's door and say, how are you doing?

You just have to think about the kind of community that you wanna be.

- What was eyeopening to me about the cost of long-term care was nobody can afford this.

- It is complicated.

Misinformation bubbles around in the community.

There's no judgment here.

- When you are my age and you're a caregiver for someone, what happens if the caregiver gets sick?

- Because of the number of scams, we have to convince seniors that the callers who are calling them by and large, are not real.

(gentle music) - It's really important that people can find a place where they feel safe, welcomed and comfortable.

- How do we keep people independent and safe as they age across the lifespan in their homes?

- There are lots of supports in every community that can address the people that are living through dementia.

- To assure me that Dan's taken care of, I need that.

- I think a lot of people associate aging with decline.

A lot of our job is really challenging that narrative.

- That kind of intergenerational passing of knowledge and commitment, telling a story.

There's a real untapped resource out there.

- Trying to change the stereotype about what it is to be an older adult.

- And we would like to start by getting an update on some of the plans and some of the policies the Shapiro administration is working on in this space.

We've assembled a team of panelists and I'm really excited to introduce them to you now.

Actually, I'm going to have you introduce yourselves if it's all right.

Thank you all of you for being here for your time, for your expertise.

We'll start with you Secretary Kavulich.

- Thank you.

Thank you Julie, for having me tonight.

My name is Jason Kavulich.

I'm the Secretary of Aging for Pennsylvania.

- Alright, thank you so much for being here and thanks for the work that you've helped us do this last year.

- Of course, thanks Julie for having us here.

My name's Akbar Hossain, I'm the Secretary of Policy and Planning for the governor.

- Looking forward to hearing a lot about what you've been working on too.

Secretary Arkoosh.

- Thanks, Julie, it's great to be here tonight.

I'm Dr.

Val Arkoosh.

I'm the Secretary of the Pennsylvania Department of Human Services and we are the agency that oversees programs like Medicaid and SNAP that help older adults, in particular, stay in their homes.

- Right.

Wonderful.

Good to have you here.

- And Secretary Carroll.

- Thank you Julie.

I'm Mike Carroll, the PennDOT secretary and the Department of Transportation, of course, provides the transportation network for all 13 million Pennsylvanians.

- Alright, let's get right to it.

We started this about a year ago with you, Secretary Kavulich, this 10 year strategic plan.

I wondered if you could just start with an overview, the inception of it, why this was so important, why we've put together all these resources over the last year for this?

- So Aging Our Way PA is our multi-sector plan that is going to take us through the next decade of older adults in Pennsylvania advancing through our systems.

It's a multi-sector plan that lives at the center of the table.

It's a living document.

It is not something that's stagnant.

It grows and changes as the needs of the population change.

So, you know, the inception of this came before, you know, Governor Shapiro came into office and Secretary Hossain and I actually had a conversation back when I was an area agency on aging director about the need for Pennsylvania to have a plan for older adults.

And quickly into the first, you know, few months of the administration, we launched Aging Our Way PA.

The governor signed an executive order and, you know, almost a year to the date we produced a plan for Pennsylvania.

And then we went right to work on implementing that plan.

And, you know, we started, you know, in an area that all of Pennsylvania 20,000 respondents, over 200 listening sessions told us we needed to start.

We started focusing on caregivers.

- I was just gonna say what anecdotally came out of those listening sessions?

- Anecdotally, what we learned is what older adults really need us to work on by and large is housing, transportation and aging services.

- The big Es, which is why, I mean that's kind of the point here, that this is where secretaries from all walks are here because this isn't just something that Secretary of Aging or the aging department can handle.

So I want to go next to talk about this housing action plan that I know the Governor Shapiro, it's a very new thing.

Correct, Secretary?

- Yeah.

- Talk to me about that.

- So, I mean, when we came into the office, obviously housing was a big concern for the governor and for a lot of folks who have voted for the governor at that time.

One of the executive orders that he signed back in last September was to instruct both Secretary Arkoosh's team and Secretary Sigers team at the Department of Community and Economic Development to put together a housing action plan.

This will be the first statewide housing action plan for the commonwealth.

And, you know, while there are a lot of focus of this plan, I think, you know, some of the main parts of what we wanted to look at as we went out there and tried to seek feedback was on trying to think about how do we build new housing in Pennsylvania, recognizing we don't have enough housing.

But on the other side also think through how do we ensure that the homes that individuals are already living in, how do we preserve those homes for folks?

While we look at both of those lenses, obviously, we're also looking at, you know, I've got some various team secretaries here with me, but we have 22 cabinet agencies in Pennsylvania and every single one of those agencies in some way has something to do with housing And how do we coordinate all of that work.

With that instruction, both of the secretaries, myself, we went out, you know, to the community for over the last year.

We've had over 20 round tables.

We've heard from over 2,600 individuals across all 67 counties.

And now our job is to put together a plan to put in front of the governor so that we can more directly impact housing issues here in Pennsylvania.

- Housing is an issue.

Affordable housing is an issue for everyone in Pennsylvania, not just older Pennsylvanians.

But what do you intend, what's the first step?

How do you intend to fix this for older Pennsylvanians?

- Yeah, I think the main focus needs to be on trying to figure out, as we sit here today, we know in Pennsylvania, even if we were to put all of the resources we want within housing, we would still be short over 100,000 units here in Pennsylvania.

Not only affordable housing but market rate housing as well.

We also know that over 40% of the homes in Pennsylvania were built before 1970.

So we have a older stock of homes here in Pennsylvania.

So we need to, you know, one of the big focuses has to be how do we build more housing for everyone and how do we preserve housing for folks who are already in their homes?

- I'm also interested in the property tax rent rebate- - Yeah.

- Programs, that's something that the two of you worked on as well?

- Yeah, so I think all of these programs that you're hearing about are great examples of how our agencies are working together.

You know, there's not a single one of us that has a magic wand that can solve every single issue.

And so there were a number of things around affordability that I'd like to just tick through really quickly.

- [Julie] Sure.

- One is that the most affordable house for any individual is very likely the one that they're living in.

And we heard just loud and clear from people that they just needed a little bit of help making accommodations, maybe putting in a safety bar in the shower or a wheelchair ramp to get in and out of their home.

And with just a little bit of assistance, they would be able to age in place in their home or maybe some, you know, up update of their HVAC or something like that.

That just a little bit of help could get them to able to stay in their home.

And another very important piece is staying in their home, is being able to pay their property taxes for those homes.

And so with Governor Shapiro's leadership, this state has moved forward in doubling almost.

- Yeah, almost doubling.

- Yeah.

- Our property tax run rebate program, which when we took over- - Double the amount?

I'm sorry.

- Almost doubling the amount of individuals that are available.

So if you think about it right now we have about half a million people who access this rebate.

Of that half a million folks at, when we started it was about 270 or so thousand folks.

So we have increased the amount of individuals by 175,000 people who now have access to the property tax rent rebate program.

We've not only done that, we have also almost doubled the amount of money that's available.

So when we took over, the largest amount of money that was accessible to an individual was around $650.

As a result of governor's advocacy, as a result of the work that Secretary Arkoosh has done, now that amount is up to $1000.

So, and we have increased the amount of money that one can earn in order to get the property tax rent rebate.

So when we started, it was around $35,000.

Now it's $45,000, which means that you have more individuals who can access that tax rebate.

And, you know, the last thing I wanna say is, while this rebate is an incredible program, it's only accessible to seniors in Pennsylvania, right?

So it essentially helps the populations that, you know, Secretary Kavulich works with on a daily basis.

- But it's also important to note, and one big thing that was an accomplishment when the administration passed the property tax and rent rebate program was that it has a caller built in.

So as older adults income rises, they can still qualify 'cause some people would get to the point where only a few dollars would keep them from receiving their rebate.

So, actually, this legislation fixed that problem and now older adults, as their income goes up, so if they get a small increase in their social security, they won't be kicked off the program.

- Easy to say, we have these wonderful programs and wonderful rebates, but are people taking advantage of them?

Are you having trouble getting people to understand that they're there or are older Pennsylvanians using these?

- I would say certainly we're having good traction in trying to convince folks that money's available and you should apply for it.

And we say that because of the increase in the number of individuals who have applied for these programs, no doubt we need to do more.

And no doubt we can access more folks across Pennsylvania and our Department of Revenue has been working hard to ensure that our seniors are aware of programs like this, as is the secretary's agency on aging.

- But, you know, older adults have told us they want to hear information differently.

Okay, that's one of the things that we learned from our listening sessions all across from what?

From traditional means.

You know, we have, and you know, we talked about this with our partners from the Alzheimer's Association just last week.

We've used TV, we've used radio, we've used billboards, we've used print news, we've used handouts and flyers.

They wanna hear from us differently, and that means engaging with community.

And that's why forums like this are so incredibly important.

We have to engage with community, so community can help us spread.

The people who are in this room are people that help us spread good information throughout their community.

And that, and in a lot of ways help get people connected to programs that they can qualify.

Help get people connected to our websites, all of ours that help individuals with some of the problems that they have every day, whether it be caregivers, whether that be food insecurity, whether it be housing issues or transportation challenges.

Connecting through community members is just as important as putting a TV ad out there or putting something out in, you know, in the newspaper as an ad.

- That's kind of a good way to get into a segment of video we have here about age friendly communities that are popping up here in Pennsylvania.

Take a look.

(gentle music) - I think as we age, our connections sort of slowly disappear and we don't notice it often.

- There's a lot of evidence on that people's quality of life, mental and physical during aging and community is important.

- I think what makes us consider ourselves and other communities consider themselves age-friendly communities is that we pay attention to what's happening to our population, to the residents that live there and that they're aging, and that their needs might be changing.

- Later on, you realize your friends are gone or your kids moved away.

So I think it's important for a community to have resources where people can still meet each other, check in on each other.

- It could be as simple as knocking on your neighbor's door saying, how are you doing?

Haven't seen you in a while.

Or bringing them a cup of coffee or saying, I'm going to the grocery store.

Can I pick up anything for you?

Noticing that their grass needs to be cut or their walk needs to be shoveled and salted.

- Those are interesting ways in which people can gain something, you know, helping each other, being there for each other in different ways.

- It also inspires an older adult to feel connected and that they're a part of something bigger than themselves.

- The curiosity that exploring something new.

Maybe it's deciding to paint in nature.

Plenary painting.

Maybe it's deciding to join a group of friends and committing to a walk every Wednesday morning.

One of the best things about Pennsylvania, we have natural features, mountains and rivers.

So our goal of having a trail and a park within 10 minutes of every Pennsylvanian means that they have an opportunity to get outdoors.

When you think about the asset our aging Pennsylvanians really are from volunteering to teaching and passing on skills, there's a real untapped resource out there.

- And we should celebrate that and welcome them in and not push them out.

I think it's good for the community and it's good for the older adult.

(gentle music) You just have to think about the kind of community that you want to be.

- So, Secretary Carroll, I was coming to you next because in the research and the work that we've been doing around aging, it is transportation that always comes up.

That's the thing I hear the most about.

And you had talked about a transit system where some system in every county, 67 counties, people can call for a ride.

This was something that was new to me, so I'd love for you to explain this program.

- Thanks Julie, and it's true.

We have transit in every county in Pennsylvania, so many people default to trains and buses in southeastern Pennsylvania, we're in the Pittsburgh area and that's really important transit mode for Pennsylvanians.

But in every county, including the most rural counties, we have what's called a shared ride program that seniors take advantage of.

And the fares vary, some a modest fair, some free, depending on the transit agency, but it gets seniors and others to docs offices and to other appointments so that they can live their life in a full and income meaningful way.

And so it's really important that transit funding and transit generally is considered in terms of policy for the commonwealth.

And that we meet the needs of folks across the state, again, in even the most rural of counties.

- Is this something that happens through a county's transportation or a region's transportation?

How does this work?

- So they're different in Lackawanna County, we have the COLT system that people would be familiar with and say in Bradford and Sullivan, and Tioga counties, we would have the best transportation system.

So Somer county specific SEPTA, for example, is five counties in southeast PA.

So it's a little different county to county, but the essence of it is the same.

And that is that we have a transit entity that meets the needs that, the transit needs, of the folks in that region.

- And what would I have to do if I wanted to get someone I was caring for a ride to a doctor's office?

- You know, my go-to with that question always is the Area Agency on Aging folks are a really good resource for seniors.

In my career, I've intersected with Area Agency on Aging folks across the state and they're always really helpful in directing folks to the appropriate resource.

When it comes to the transit agencies, some of 'em have funky names and it may not be a as simple and straightforward as Lackawanna Transit.

In Lackawanna case, it's COLTS.

County of Lackawanna transit system.

So the easiest thing I would say is the Area Agency on Aging.

They could get you to the appropriate contacts.

- The Department of Human Services oversees something called PA Navigate, and that website is pa-navigate.org.

And that is a site where anybody can go type in their zip code and there's a bunch of icons across the top.

Do you need help with housing, transportation, food assistance, things like that?

So that's just another very quick and easy resource.

But, obviously, if there's any questions, the a local Area and Agency is a go-to place for older adults.

- What about the toolkit I have been hearing about?

I think that was something that you were also working on?

- Pennsylvania Care Kit is designed just for caregivers, care receivers, individuals that are, you know, just becoming caregivers or at a different point in their caregiving journey.

It's a brand new platform that we just launched.

It lives on our website and people can, when they access it- it is interactive.

So what happens is if you complete the quiz, what you get back is a timestamped response that tells you answers to the questions and that you fed answers to.

So you'll get a personalized response based on your answers and that will help guide you through the care kit to the resources that we have there.

Whether they be resources that are connected through AARP or the PA Home Care Association, or the Jewish Healthcare Foundation, or the Alzheimer's Association, or other resources that we have on stress and burnout.

On other resources, you can have to connect to things like our caregiver support program or services that are offered at the Department of Human Services.

So it's comprehensive, it's easy, you know, it's there when a person needs it in their caregiving journey, whether it be during crisis or whether it be, you know, because they're just becoming a caregiver for the first time.

- I see.

Okay.

I do think we wanna try a different video now this time.

This is an aging in community video and we're gonna talk about this one when we come out of the video.

Take a look at this.

(gentle music) - Well, social isolation isn't a new issue.

It really was highlighted during the pandemic, but for 50 years area agencies on aging senior community centers have been combating social isolation with older adults.

We know it has an incredible negative impact on someone's health if they're socially isolated.

So the Department of Aging, its partners, the 52 area agencies on aging and our senior centers throughout the state of Pennsylvania offer programming for older adults to come socialize, take part in community activities, get connected to friends and neighbors, and to make sure that they don't think that they're alone in this.

We are all in this together.

We are all aging together and we wanna make sure that our programming is robust and meets the needs of each individual community all across Pennsylvania.

- Just about every older adult that I know really wants to age in place in that home, in that community that they love.

And so we do everything that we can at the Pennsylvania Department of Human Services to enable older adults to stay in their homes because we know that their physical health, their psychological health, just their ability to work, and to thrive, volunteer in their community, really, really is maximized by being able to stay in that home that they love.

- Volunteering in itself really helped support seniors who were in their communities if they need, you know, meals delivered or if they need someone to help deal with social isolation, transportation to a medical appointment and those kinds of things.

But a lot of those activities, many times, are done by volunteers.

It gives you an opportunity; one, to get to know your family, friends, and community.

It gives you an opportunity to almost, to give back to that community as well.

I find that I utilize my social work skills in a lot of different ways.

It keeps me busy, keeps me active, keeps my brain working.

And I've actually learned a lot.

I thought I knew a lot, but I've learned a lot more about the resources that are out there in community.

(gentle music) - This term, "aging in place", I've heard a lot of, it's kind of a buzzy term, but I think I understand keeping people in their own homes without having to go to other facilities.

What about loneliness?

What about the isolation that we've been hearing about in some of these videos?

What are you doing?

I suppose I'll give this one to you, to keep people in their homes, but also give them some company, give them some connection, some outreach.

- So I think we should, like, reframe it a little bit and think about aging in community.

Okay 'cause that's really what this is about.

Aging in place, you know, they're typically programs designed to help people with services like Secretary Arkoosh described, having their bathroom remodeled, putting on a ramp, something like that helps their home become more accessible.

Aging in community is really what I think we all are focused on.

Making sure older adults are not just, you know, having hard services like, you know, in-home services for personal care or transportation services, but also staying connected to their community.

Whether it be through one of our 455 senior centers that we have all across Pennsylvania or through the other social organizations that they have in their community.

Making sure people stay connected part of their community with the assistance that they need is really important so that they can age in that community the way they deserve with the supports and services that they deserve.

So it takes a whole community to help an older adult, you know, live and make sure that they can stay in the home that they want.

And it's only working together as a cabinet that we were able to put together Aging Our Way PA because we had over 30 state agencies contribute to it, as well as our 52 Area and Agencies on Aging and countless stakeholders throughout the commonwealth.

All of that, all of that community work is what's making a difference.

It's what's helping older adults live the way they want to and need to in their communities.

Whether it be, again, connecting to services that we all offer through our system, or whether it be just connecting them to other friends and neighbors that can help push back on the loneliness, helps them, you know, to do some of the small tasks that they have in their home every day.

Last week we worked with an organization Village to Village, which helps us, you know, develop villages in bigger communities, a group of volunteers that helps people stay in their home, stay in their communities, and again, supports them in this transition into older adulthood.

- And that's why there's a plug for the care toolkit that we had mentioned before because oftentimes you recognize that a lot of our seniors and you know, older adults, they are the constant in their life are the caregivers.

And the more resources we can provide to those caregivers to take care of our older adults, the better we will be in the future.

- Secretary Hossain, I'll stick with you for a moment here.

We have no state budgets, we are months without one now, and I'm wondering what that means.

What are you telling people who call your office for help?

What can older Americans, Pennsylvanians, expect without a state budget?

- Yeah, no, I appreciate you asking that and certainly I think, you know, one of the most important things as we talk about the state budget here to recognize is that Pennsylvania is probably only one of a less than a handful of states in the entire country that has a divided legislature.

So for us to do anything here in Pennsylvania, we need both sides to agree on whatever that purposeful budget is.

The governor did propose his budget back in February and we've been trying to have conversations with the legislature to come to an agreement.

And I think we are in a place right now where the legislature has some difficult decisions to make in terms of getting this budget to the governor's desk.

We're hopeful that we can do this as quickly as possible because we are cognizant of the fact that every single day the budget is delayed we have schools, we have hospitals, we have a area agency on aging, different factors and sectors of our commonwealth that's not getting the funding they need in order to serve our Pennsylvanians.

- I would go on with that a little more, but I do think with our final few minutes here we have to bring up Medicare and Medicaid and I know that is what your office handles.

You'd mentioned that there is a rising number of people who are eligible for both.

How is that affecting your office?

- Yeah, so we oversee the Medicaid program, which is run together between the state and the federal government.

And then we work closely with certain individuals who are also in Medicare.

Medicare is entirely a federal program.

Older adults who qualify for both are known as dual eligibles.

And so they tend to qualify for Medicare either because they're 65 and older or have longstanding disability and they're duly eligible if they're also low income such that they also qualify for Medicaid.

So our program for that group of individuals is called Community Health Choices.

And, again, you can hear this common theme that we're all about making sure people here in Pennsylvania have a choice of how they're going to live their life.

We have right now about 390,000 people that are in our Community Health Choices program.

And there's a subset of those individuals who have conditions that would qualify them to be in a nursing home, but we give all those folks a choice.

And today, through a lot of hard work and really listening to what older adults want, we have about 42, 43,000 people that are part of community health choices that are in a nursing facility.

And we have another almost 150,000 who are living in their community, and we're able to do that by providing home and community-based services.

So making sure that they have caregivers that are able to assist them with some of those daily needs like preparing a meal or making sure that their medications are sorted out and they're taking them at the proper times.

And those same caregivers can also help get somebody to the local park or take them for a walk or get them out into the community, which for almost all of these folks is where they've spent most of their adult life and where they wanna stay.

- That's a good segue because we're going to be speaking with some caregivers and people who are boots on the ground, so to speak in the next panel and I'm looking forward to that.

But we certainly wanna thank you, all of you, the secretaries here wanna thank them for their perspective and their experience.

There's a whole lot more information about what we're talking about here at aginginpa.org.

We'll be right back after this.

- [Announcer] In Pennsylvania, we believe aging should be an opportunity to thrive, not just survive.

That's why the Pennsylvania Department of Aging partners with local adult day centers throughout the commonwealth, Adult Day centers provide a safe and supervised place for older adults.

And those with conditions like dementia or Parkinson's disease.

They offer personal care, nursing, social services, activities, meals, and emergency care.

Some centers also provide physical therapy, occupational therapy, speech therapy, and other medical services.

These centers help support caregivers by offering an alternative to living in a care facility.

Reach out today and see how your local adult day centers can support you or your loved ones.

Visit pa.

gov/aging/adc or call 1-800-753-8827 today.

Aging together in Pennsylvania is presented by media partners: WITF and WVIA.

- And we are back with Aging Together in PA, a special collaboration between WVIA in Northeast and Central Pennsylvania and WITF from right here in Harrisburg.

We welcome now a new panel, those who live with aging and caregiving issues day in and day out and I'm excited to introduce them to you.

Of course, State Secretary Jason Kavulich is with us again, Secretary of Aging thanks for remaining on the panel.

- Hey here.

- And I would love to hear if you could introduce yourselves to everyone.

- Thanks so much for having me here today.

My name is Carmen Bell, I'm the Senior Director of Healthy Aging at United Way of the Greater Lehigh Valley.

I also lead our age friendly Lehigh Valley Initiative.

- Wonderful.

Great to have you here.

Thank you.

You?

- I am Evita Cotta and I am a caregiver for my mother as well as a community advocate and the resource queen.

- The resource queen?

We're gonna get to that.

Thank you for being here.

- Hi, and I'm Elaine Dalpiaz, Vice President for Governmental Affairs and Policy at the National Alliance for Caregiving.

We represent 63 million American family caregivers.

I feel like my best credentials today are because I was a caregiver for my parents for 12 years.

- Do you find that a lot of people who work in the space also have those stories?

- Yes, I think that makes you passionate.

Yeah.

- I'm sure.

We'll get to you in a moment.

I actually would like to start with Evita because I have heard you say before and just like you said just now that you're the queen of resources and yet you feel like you have no resources.

Tell people a little bit of your mother's caregiving story and the things that you have had to do, how your life has had to change because of it.

- Well, my mom is still very young.

She's 67 years old and she's diabetic and chose to not take care of herself and her condition just continues to get worse and cause other health issues, heart failure, she's on oxygen 24/7, neuropathy.

She can barely stand, she can't walk Stage three kidney disease.

- You were her caregiver for a time.

- It's been three and a half years now.

We found out in 2022, in '22 that she had congestive heart failure.

So they did a procedure and about a month after that procedure she just collapsed and wasn't able to get up and walk, and that's when I had to step in and be there because she couldn't do anything.

She can't drive no more and it was all new to me.

And I had a lot to learn and I basically had to put my life on pause.

I still had to work.

So I had to work.

I would be with her after work until like one, two, sometimes three in the morning.

And it's definitely been a challenge.

I learned a lot and I'm very resourceful and I know a lot of resources and I know a lot of people so, but I still find different challenges to this day.

- Secretary, do you hear stories like this a lot?

- Every day and, you know, this is what drove us to really build the PA care kit.

You know, it's personal, it's practical, it's there when people need it.

And it really is something we designed with our stakeholders, with caregivers, care receivers that meets the needs of a person somewhat in their caregiving journey at the beginning and sometimes at the end.

So it was the impetus and the stories that we heard as we did the build out of Aging Our Way PA, that drove us to really prioritize this and that feedback, you know, was heard by our steering committee at the Long-term Care Council and it is also heard by the general assembly and it was heard by the administration and that's why caregiving was the priority in the first year of aging.

Aging Our Way PA.

- Are you taking care of yourself?

- I am trying.

I am trying.

I really am 'cause self-care is very, very, very important.

And I juggle, I'm very active in the community.

I'm not giving up the community.

That's my joy.

So I am on a couple boards.

I do a lot of community events that I will not give up.

I do make time for- there's a lot of things I do miss, but I do make time.

And now it's a little bit easier now because now she's in a nursing facility because she's in a second floor apartment and she can't go up the stairs.

And so we had to put her in the nursing home.

She wants to go home, but she doesn't do the therapy so she can't get the strength to get up.

14 flights of steps and it's not safe.

So I have to, she's on a wait list to get a first floor apartment, but that may never happen.

I did apply other housing, but they're all high rises is what they are and that's a challenge.

You know, they're like, oh we have an apartment for you on the seventh floor.

But then I would have to still get her there.

She can't walk.

They're, like, "we have an elevator".

- Right, right.

- It's still a challenge.

So that's kind of where I'm at now.

So that's where she's at.

And until we can figure something out, I wanna move to Florida with my brother who has a one level house and we can all take care of her together.

But she's refusing to go to Florida, and this is where my challenge is coming.

I reached out to the Department of Aging for help and the Community Health Choices as well and the insurance.

And they're telling me that they have to respect what she wants and that I can't make that decision for her.

But she has dementia, she's not making right decisions.

So this is my biggest challenge right now that I'm going through right now.

- So Elaine, I would like to take this to you.

You do have experience as a caregiver, we'll get there.

But in your role as helping caregivers, what do you tell people whose person whose loved one doesn't want to do the thing?

Is it can't be convinced to, I don't even know what to say.

Maybe convinced is the wrong word, but isn't listening to what their caregiver has to say.

- Well, I mean, we focus on the policies.

We don't actually intercede one-on-one.

I had a very similar situation with my parents as well.

It's very challenging.

I would just leave it at that.

- What policies are you currently trying to enforce or enact, or bring to the forefront?

- Yeah, no, the policies we're focusing on, like we focus on the health and wellness.

The health and mental health of the caregiver.

I mean clearly it's really taxing on the caregiver.

They neglect themselves.

They neglect their own health.

We focus on the financial wellbeing of the caregiver because whether it's, you know, advocating for caregiver tax credits or for stipends to help people's afford some of the care.

Those are important pieces.

And then, basically, we're advocating for more services.

For people, respite care, home and committee based services, all the good things that the secretary's working on.

So, you know, at a state level and the federal level, those are the policies were focusing on.

- You had said that you thought Pennsylvania's, the care kit was impressive- based out of Washington, D.C., correct?

- [Dalpiaz] Yes.

- [Julie] So what do you see in other states?

- Not as much.

There are some that are out there forging, like working on their multi-sector aging plans, but not enough progress.

And so I think in my profession, I've been working in the aging field for 30 years.

I always thought that Pennsylvania was one of the most progressive states.

And so, you know, hats off to you and the governor and the whole cabinet and the team for working so hard.

Even this PBS.

Working with PBS foundations and the state government is an incredibly unique collaborative.

But I think it's gonna bring the information to people in their homes that they need and then more people will have help when they need it.

- We hope.

- Yeah.

- We hope, Carmen, we talked a little bit about earlier isolation and loneliness as in your role as United Way, I know this is a lot of the work that you do there in the Lehigh Valley.

What do people come to you for the most?

- Well, we hear a lot of things from the older adults that we interact with.

Hear a lot about food insecurity.

That seems to rise to the top of the list.

Loneliness and isolation seems to be fairly well controlled, but we are making interventions to make sure that is happening.

We talk to people about their access to resources.

We believe that if we could connect you to information, you can make choices for yourself.

You're feeling empowered about those choices and your sense of worthiness and wellbeing increases.

If we have control as your age, we tend to lose control, lose our independence.

And so we wanna make sure that we put that back in place so that you have some say in what's happening in your particular situation.

We work to connect people to information and to each other 'cause we know that if a person has a social network, they will rebound better from a crisis than those who do not have a social network.

So we created a series of what we're calling community hubs where people will have access to programming and to food, to social interaction.

We want them to be easy to get to and where they can have access to medical services if that's the choice that they're making.

So some of the hubs that we have have clinics and others we partner with federally qualified health clinics that come in and do wellness days.

- Hubs like at an office or at an area agency on aging or a senior center.

Where are you putting these?

- So right now the places where we have those hubs are generally at senior centers.

We have three that are located at senior centers.

One that's located at a neighborhood center who then goes out to three senior high rises and one that's located at one of our local YMCAs in a rural area that it has a robust older adult program.

So we're just trying to bring services to where the older adults are already gathering and they encourage other older adults to go to those places and then bring, help build capacity at those places by bringing more services there.

Programming, and I think the other thing that we try to focus on part of the time is like, we don't wanna always talk about what's wrong with you.

- [Julie] Right.

- So we will create programs or have outings or excursions that, let's go to Longwood Gardens let's have a Motown Memories dance night.

And, you know, we are always serving food because when we serve food, they will come.

- [Julie] Right.

- And we know that will happen, but we wanna make sure that they're fed, that they have a good time, that they have just some fun.

And then we always make sure that we provide them with some resources, information that will help 'em connect to other services that are in community 'cause we do hear that a lot.

I didn't know this was available to me.

I didn't know that I could do that.

So we're always trying to pass on information to them.

- We've been talking a little bit about the PA care kit here in this hour and we have a little video to explain a bit more about it.

Take a look at this.

(gentle music) - The PA care kit is a collection of tools, information and different resources to support informal unpaid caregivers.

So families, friends, neighbors that are helping to provide care for an older adult, a person with disability, any sort of relationship there.

- It's an excellent, excellent kit.

What happens is when you go on to the site, there's a questionnaire that says more or less, tell us about your needs.

And there's 18 questions there and you complete those 18 questions, and after you're finished with those 18 questions, you will get an email response tailored specifically to your needs.

- The PA care kit to me is a resource that we've been waiting for in Pennsylvania for quite some time.

It is a one stop shop for caregivers.

The convenience of having everything in one space, it's a time saver, it's a place where caregivers can connect with each other.

It offers that peer mentoring, that peer support, which is really essential in just, you know, maintaining someone's own wellbeing.

- And you really don't know what you don't know.

And by going on the site, it really enlightens you to what's out there.

So even if you're not in the process now of being a caregiver, it's something just to keep in your back pocket that someday you may be a caregiver.

- I think that it provides more stability in an older adult's life when the people around them that care for them on a regular basis that they rely on, feel more supported and connected and provided with resources.

If you provide resources to the caregiver, you are providing resources to an older adult.

- My personal journey with caregiving is a loving one, but it's also one filled with challenges and bumps in the road.

And I really think the PA care kit will help smooth out the road and make that journey so much more pleasant.

- I am curious, Elaine, about the so-called sandwich caregivers, the sandwich generation, I suppose we've been talking about for awhile now.

What are you seeing in terms of specific sandwich caregivers?

- Well, we just, the National Alliance for Caregiving just partnered on a caregiving in the US report with ARP.

In fact, Bill Johnston Walsh has, you know, been a great partner for ARP and all of this.

But what we are seeing is that 20, I think it's 29% of all caregivers are sandwich caregivers.

And that means that they're torn between, you know, raising their children and usually working while they're also caring for a parent.

So it presents a myriad of challenges and we know that 61% of caregivers are women, 38% are men.

So, you know, you can start to do the math and sort of figure out where the pulse points are of pain in terms of time, you know, physical health, emotional health, of finances.

And finances is another area where if you're caregiving for both wings of your family, then you often find that you're taking on credit card debt, you're taking out loans or you're not saving any money anymore because of your obligations and things that you wanna do.

So there are a lot of challenges to be a sandwich caregiver.

- What does this do to a family's budget?

I mean, it seems that you would have to really sit down and make a plan for how this is going to change the rest of your life.

- Right, and if a nursing home, for instance, costs $120,000 a year or even, you know, home and community based service is about $30 an hour.

I did the math the other day, it was like $31, $32,000 a year.

So some families are trying to afford all of that, hoping the parents might have some kind of a pension or something social security to help with.

But it's a real challenge for a lot of people.

You've had to take on another job, right, Evita?

- Yeah, I did.

My mom is low income, so the waiver program.

So we did do that.

So I still have to take care of her.

I still have to be there to go do her calls, make her appointments, wash her clothes, do everything for her and stay with her.

So I do Uber.

I do Uber at night.

I had to do something that was flexible that I could do real late at night.

So I could sometimes I'd do it till three, four or five in the morning.

- [Julie] My goodness.

- And go sleep a couple hours and get up, and go to my job.

So it's been a challenge.

- That doesn't seem like it's sustainable.

Well, you know, my health has definitely declined and since she doesn't wanna go to Florida, I had a serious conversation and I told her, you know, I keep putting you first and I'm not putting me first.

And in the last three and a half years my health has declined.

So I have, and probably the last couple months declined the time down the time I've been there with her and I've been going to the gym and trying to sleep more.

But I still have to do Uber.

- Goodness.

This kind of brings you back around to something you and I had spoken about earlier, Carmen, which was that this seems like women take on the burden of this and there are also a lot of groups that aren't getting any help at all.

Marginalized groups and people who don't have resources that you are trying to get out there and help.

When you hear stories like this, what is your response?

How would you try to get someone like Evita some help?

- I think I would, we do a lot of things to help the caregiver.

We offer some social emotional workshops so that we could just focus on the caregiver themselves and not necessarily the role of their care recipient, but what's important to them and how can they best manage their situation.

We offer another class called Compassion Resilience so that they can build up their strength to put that job ahead, a job that they didn't anticipate and we're not necessarily prepared to take on.

And so, you know, we don't wanna say that there's no way out, but you're in that role and so this is where you are.

So how can we help you find some balance between those two things?

And what we try to do is provide you some resources that will help you manage yourself better so that you take care of yourself, but also manage your role better.

And then to understand and know when you need to step back and look for outside help to help you.

I know when my mother first came to live with me, I thought I would never put her into a facility and she kept having a declining physical ability.

And we just discovered, realized one day that it was not safe for her to be in the house with just her and I in the house because in the event of emergency it would be hard for her, for us to get out.

And so that was a tough choice and I find that a lot with caregivers that it's a tough choice to say I need some additional help.

My person may need to go into a facility.

That doesn't stop your caregiving role, it just changes the complexion of it, but just still the caregiver, and so I think you have to look to your friends and to other family members to help you and we try to encourage people to do that.

You can't be on call 24/7.

You need some respite from that.

- And what is the state doing in terms of caregiving and I mean, I know caregiving is part of Aging Our Way PA but what about caregiving is included in that?

- Well, one, we're working on the direct care worker blueprint that was put on the shelf.

We're taking it off the shelf.

We're revitalizing that.

We're working with our partners, the Long-term Care Council to really look at that and see how we can go to work with other state agencies to help the direct care workforce become rebuilt.

As we know we have a shortage of direct care workers, we know that there's over 400,000 Pennsylvanians that depend on them for in-home care each and every day.

And that, you know, some home 125,000 hours a month go unfilled in all sorts of areas because there's a shortage, you know, and then you think about our unpaid caregivers, there's 1.5 million of them in Pennsylvania that's a $22 billion bill.

$22 billion.

It's a huge amount of money.

So the work at the department is focused on making sure caregivers have resources, have respite, have connection to community, have connection to services, and also working with other state agencies, other stakeholders and other organizations to make sure that we're doing our part to support them with information and what they've told us that they need, and that's connectivity.

- What about in rural Pennsylvania where even where I know personally people even with resources who could hire someone, can't find anyone within a how many mile radius?

Rural and urban seem to be a very different ball game when it comes to aging.

- They are, and you know, you're looking at all the different Area Agencies on Aging off 52 of them.

Some of them take advantage of our consumer reimbursement programs, which means the older adult can go out and find a person to help them in their home and to pay that person an agreed upon rate.

And the Area Agency on Aging will reimburse in them for that.

So many of our AAAs move away from the agency model, which is a professional agency providing services to that model because they're rural and because they need to find a different workforce to serve the older Pennsylvanians.

- We talked, I believe Evita was it, remind me again what your mother was suffering from EDRD?

- She has vascular dementia.

- Vascular dementia.

- Which is, was caused from constant high sugars.

She wouldn't take her insulin and then she refused other caregivers didn't want no one else in her home.

She's very stubborn.

So it makes it very hard.

She doesn't want to eat healthy.

She does everything you're not supposed to do.

So that makes it even like even challenging.

Like yesterday went to see her, I saw two big two liters of soda and I don't know who brought that to her, but it's, you know, it's a challenge to get her and like, mom, if you wanna go back to an apartment, you have to build your strength.

You have to wanna do it and I think it's a broken record.

Like everyone has talked to her and it's nothing that we can do.

Like these are the decisions that she's made and it's kind of, and I don't have a big village here.

My brother wants to help and I try to get her to look at the picture that you have two children, I want to take care of you and I'm willing to leave my children behind and move to another state so we can be there to take care of you, to keep you alive as long as we can.

- This was one of the questions that came up in the first half hour.

How you get someone to go along to understand that you're trying to help them.

And is that something that you deal with Carmen in your role?

- Yeah, I think it's difficult to do that.

I mean, 'cause you want to maintain your respect for the person that you're seeking to help, but at the same time you need to try to encourage them to look at the benefits of maybe a different path will take them on.

And all you can do is talk about that and maybe introduce different things to them that maybe they will start to appreciate that this is a change that they need to make.

I think sometimes we get to a place where you're feeling the weight.

The person who needs the care is feeling the weight of all of the things that are happening to them.

And they may just start to give up and say, well this is my fate.

So I think it's almost like we don't want to try too hard because if I don't succeed, then what was the point?

And if I don't try it all, then I'm on the path already.

So I think it's just really encouraging that person that their life still matters and that they still have something to contribute, which is what we try to do with all the older adults that we engage with.

Just because you're older does not mean that there is nothing for us to celebrate about your life and that you have gifts that we are blessed to have in our community.

We want to continue to be able to share those.

- Older does not mean incapable.

- Exactly.

- And you had talked a lot about just bringing everyone together that older Pennsylvanians, individuals, need to be with younger Pennsylvanians and individuals.

And I saw you nodding there, is that kind of something that, that you're behind as well, Elaine?

- Oh, yeah, the whole intergenerational approach I think is so healthy because, I mean, you know, sometimes people do go into the, you know, senior living communities, that's fine.

But I think it depends on how, you know, you're maybe what's important to you, but being around having the different generations interact and older Americans like, you know, the magic that happens when they volunteer in schools and other facilities or bringing children into a facility maybe where the older Americans are that can't necessarily get out and about.

You just see the joy in their faces and it's really magic to try to make it happen as much as you can.

- If I said, here's a giant bag of money for you, here it is on your doorstep, what would you do with it in this space?

- Oh, in this space?

I think a lot of communities are already doing great work.

I mean, schools go into, you know, nursing homes or assisted living facilities.

I think, you know, you've got community organizations that are blending the generations and just more of that.

I think it's so organic.

Churches and synagogues have great reputations in this space.

I think you just don't lose that sense of family and community.

And it sounds like in Pennsylvania, everybody's working really hard for that sense of- - Carmen, what would you, I'm sorry, I didn't mean to cut you off.

- No.

- Yeah.

- What would you most like people to know?

Is there a misconception about caregiving or aging that you would like to dispel?

- I think when we think sometimes of caregiving, we think that everyone who's aging is frail and old, and incapable of anything that they don't have, that their brain has ceased to function.

And in those cases, we want, I think what we're trying to build is a community that says, "if you need our help, we got you."

But we also want to recognize that older adult who is very capable, who still wants to be a part of things, who has wisdom to share, and we want to hear that wisdom.

And yet it's a great thing that has someone in your community who's lived through several different historical parts of our culture and our community that they can share firsthand with that.

And I think that's important for not only the older adult to get that sense of worthiness, that fuels your desire to live and to take care of yourself and to be well.

But I think it also is great for our younger generation to see that and to change people's conceptions and perceptions about what aging is, what the younger generation is all about.

And so that we get to see each other differently and get a newfound respect.

I don't think when you get older, you wanna be shut away with just people who are older.

I mean, there's nothing wrong with being old, but I think you still want to have access to the things that you were having access to when you were having your career and your family and doing the things that you're doing.

You want to hear the kids laugh.

You want to hear the school bus arriving.

You wanna hear the cars going down the street.

You want, you know, you wanna do all of those things.

You wanna maybe get out to the grocery store and just like, can I just buy my own food for a change?

I mean, I think you still want to have access to all of those things, and I think it's important that we work to make that happen.

- I think there is no better place to wrap up our panel today.

Secretary, thank you so much.

Carmen, Evita, and Elaine, we really appreciate your time and your expertise.

Thank you for being with us this past hour for Aging Together in PA.

There is more information about the commonwealths plan at aginginpa.org.

I'm Julie Sidoni, and on behalf of WVIA and WITF, we'll see you next time.

(audience applauding) - [Announcer] This program is made possible through support from the Pennsylvania Department of Aging in partnership with All One Foundation and Charities.