Lunch & Learn National Caregiver Month - Caregiver Support Forum

Did she say one?

Good afternoon, everybody.

Welcome to a Lunch and Learn on National Caregiver Month.

My name is Rob Johnson.

I am not Sally Bagshaw.

Sally Bagshaw is unfortunately stuck at jury duty today and has asked me to step in for a little while to help facilitate the Lunch and Learn for a little while.

Regrettably, I actually have a conflict at 1230, so I'm going to stick around for the first half an hour to help facilitate and then Hopefully, she'll be back by then.

But I'm happy to relinquish the chair at any point.

Why don't we start by going around the table and doing some brief introductions, please.

Well, I'm Amanda Bates, and I'm a trainer over at the Aging and Disability Services Department.

And I'm Kathy McCall.

I'm the advocacy director for AARP here in Washington state.

Kathy Knight, Director of Aging and Disability Services in the City of Seattle Human Services Department.

Karen Winston, I'm a planner with Aging and Disability Services.

Audrey Beering, Deputy Director of the Human Services Department.

And I'll be kicking us off today whenever you're ready.

Well, I mean, I just want to say, you know, this is an incredibly important topic.

But I think part of our goal and objective is to really try to build a lot more awareness about the issues that caregivers go through and talk to people about supports that might be available to them.

As somebody who is a caregiver myself, you know, can certainly attest to a lot of the issues that we all struggle with as caregivers about, you know, what's the correct balance that we all have to strive to achieve a good, you know, personal well-being for both yourself, but also to be a good caregiver to those that you're giving care to.

So, I'm excited to learn a little bit more about tips and strategies, and we'll hand it over to you, Audrey, to take it away.

Thanks so much, Councilmember Johnson, for hosting us.

And also, of course, to Councilmember Bagshaw.

We heard she's retiring, at least from her position on City Council.

And we hear that with great sadness because she's long been such a champion of the work we do with older adults, people with disabilities, and then the people who care for those people.

And so we're so excited today to have this opportunity at this Lunch and Learn to talk about the caregivers to both you, the folks in here, and the folks viewing at home.

So today we're going to focus on family caregivers, whether family, friend, or neighbor.

These unpaid caregivers are the backbone of the long-term care support system.

And so we will also include some information about professional caregivers, but that focuses on family caregivers.

Washington State's Department of Social and Health Services estimates there are somewhere between 600 and 850,000 unpaid caregivers in the state.

So that's people who help someone age 18 or older who needs regular care to remain at home rather than moving to a care facility.

Can I have you?

Yeah.

Sorry.

It's not advancing, so there's something I'm not doing right.

So we'll get to this slide in a minute.

But what I want to draw your attention to is Washington State is right now ranked as number one in the nation for long-term services and supports for older adults, people with disabilities, and family caregivers.

So there's a state scorecard that is put out by AARP Public Policy Institute, their foundation, the Commonwealth Fund, and the SCAN Foundation.

The scorecard comes out every two years.

And in the last decade, Washington State has been in the top 10, mainly in the top two, and more recently has become number one, which is a really great thing to hear because, you know, here in the city and King County, that means we're contributing to some really good work to support the people in the state.

Sorry, it's still not working.

We'll go without slides then.

So where does the city of Seattle fit into all this?

We have a multifaceted role.

It can seem quite complex, but the way it's sort of rolled out is we have an area agency on aging for Seattle and King County.

That is also the Aging and Disability Services Division, which is a division inside the Human Services Department of Seattle.

And so while this Area Agency on Aging is situated in Seattle, we also serve all of King County.

So city employees facilitate caregiver supports throughout the county, and they coordinate and train community living connections providers, which is a countywide network that provides aging, disability, and caregiving information and assistance whenever and wherever it's needed.

ADS contracts with 10 community providers as well for caregiver support services.

And you can think of Community Living Connections as essentially the front door to all state, federal, and locally funded aging, disability, and caregiving programs in our region.

We could not do this work without some very important partners.

So I want to give a few shout outs.

Thanks, Council Member Baggio.

We're so excited you joined us.

Thank you very much.

And I do want to say thank you all at the table for being here.

I have the pleasure and honor of having been called for jury duty.

So they just let us out for lunch.

So thank you.

Thanks for making the time to come.

It's actually my honor to have invited you.

So it's sort of like the hostess doesn't show up.

So thank you for picking up and running.

So like you, we have other very important partners who have been championing this work.

One is the Seattle Parks and Recreation.

They have a lifelong recreation, dementia-friendly recreation, and a Sound Steps program that are a real boon to family caregivers.

We also have strong partnerships with Momentia Seattle, which is a coalition of organizations offering dementia-friendly activities, as well as the University of Washington Medicine and Brain Health and Wellness Center and the Alzheimer's Association.

So with that, I hope you'll excuse me, I've got to run to our facility in Renton for an employee event, but I'm going to turn this over and you'll be in good hands with Kathy Knight, who is our Director of Aging and Disability Services, as well as her staff to share what we know about caregiving and the need for caregiver support.

Thank you, Audrey.

And thank you, Councilwoman Bagshaw, for having us here today.

This is a topic that is near and dear to my heart.

I'm sure that like so many other folks here, we either have been or are caregivers.

I want to start off with a quote that I think we all have heard many times from Rosalind Carter, First Lady of Rosalind Carter.

And it says it pretty well.

There are only four kinds of people in the world, people who have been caregivers, people who are caregivers, people who will, will be caregivers, or people who will need caregivers.

So that's why it's so important for us to have this conversation today.

A true expert on this topic is Amanda Bates.

She's a member of our staff and has been a case manager providing caregiver support programs and is now one of our trainers.

I'm going to turn it over to her to talk about what we mean by caregiver.

Thank you Kathy.

And thank you for the opportunity to be here.

I really appreciate that.

So I want to talk a little bit about what a caregiver actually is.

And I think that there are a lot of people who do provide care that don't really identify with the term caregiver, although they are, in fact, providing a lot of care and can cause a lot of stress among them.

So as far as what a caregiver really is, is it's anyone that is providing any sort of support to somebody that they care about, right?

This could be a family member or friend, it could be bringing them food, it could be helping somebody with their finances, just listening and assuring somebody, spending time with them, driving people to appointments or helping somebody do chores, run errands, you know, yard work, maintenance around the house, all of those things are caregiving.

So as a caregiver, there are also a lot of stress factors that come into play.

So just activity planning, balancing your own work life and your own families as well as the person that you're caring for, making sure that you have enough time for yourself as well.

A lot of caregivers don't spend near enough time taking care of themselves.

It can also cause some legal and financial issues, insurance coverage, healthcare costs, all that is really expensive on people.

You also have to be making some really difficult decisions and the life decisions, working with individuals with dementia and understanding their, any challenging behaviors that may come up.

Finding help, competent help can be really difficult.

So a lot of times caregivers need some other support and finding individuals that can understand that their loved one can be difficult.

Setting up home care agencies, assisted living facilities, nursing homes, all of that can be extra burden and stress to an unpaid caregiver.

Given that King County's population is nearly 30% of the state, it's safe to say that we have about 17,000 to 25,000 unpaid caregivers just here in King County.

Nationwide, a typical caregiver is a 46-year-old woman who also works outside the home and spends more than 20 hours a week providing care, and it's typically for her mother.

However, there are plenty of men that are also providing care and many of men that also need care as well.

The majority of caregivers are middle-aged between the ages of 35 and 64. The majority are married or living with a spouse or partner.

They also work, so they either work full-time or part-time outside of the home and this is separate from their caregiving work.

And we also know that on average they spend 4.3 years providing care to somebody that needs caregiving.

People of color also tend to care more for their loved ones than white caregivers do.

And as I mentioned before, that this can have a lot of emotional impacts on any caregiver, stress, frustration, anxiety, exhaustion, anger.

Again, the financial impacts can be huge.

There's a lot of financial strain put on individuals, loss of wages, impacts their own retirement as they're trying to plan for that.

Caregivers can have an increased use of alcohol or other substance issues.

They have reduced immune responses, poorer physical health.

They tend to let their own health subside while they're taking care of somebody else.

So, in short, they tend to neglect their own care while providing care for others.

All right, Kathy, back to you.

Thanks.

Thank you.

Council Member Bagshaw, you also know that we are age-friendly in Seattle.

Thank you very much.

Yes, thank you.

I want to just mention a few things that we're doing through the Age-Friendly Initiative to support caregivers.

And as you know, as a result of community input from like a couple thousand folks in the last few years, we've included several objectives that support caregivers.

Some of those include our efforts to assist the LGBTQ community better.

We're doing more to make it easier for those folks and family members and caregivers to gain access to information and resources to help them.

And I also want to say thank you for your support.

We did get more money in the budget this year for LGBTQ seniors.

And I know that part of the reason we were able to do that is because of the good work you all have done.

Thank you.

Thank you.

Yeah, we're really looking forward to that continued partnership.

And we do collaborate with Generations Aging with Pride.

They have been involved in our caregiver support program.

So we're looking forward to working with them.

We are also looking at building aging health and human service competence among our professionals, including a better understanding of the role of family caregivers.

And an example of where we're doing some great work there is the Northwest Geriatric Workforce Enhance Program, and that's training medical professionals.

And they have a very important role in helping caregivers know about where to go for information.

We're helping the community and caregivers recognize that caregivers are essential for individuals to be able to age in place, to be able to stay home, to stay with their loved ones, and to recognize that the needs of family, friends, professionals, and just how we can help.

We've been working on that as part of our age-friendly program.

And in addition to that, we also are advocating for compensation and training for professional caregivers.

You're going to hear more about the important role that they play, and they are resources to family caregivers, but that's something that, so we want to advocate to strengthen that workforce too.

and for more flexibility and options that are available to caregivers.

For some folks who do have the resources, we need to make sure that we're really helping people develop the kind of support network that they need that works best for them.

We're also collaborating with the Human Services Department staff and emergency responders.

We talk a lot about emergency preparedness, but sometimes we forget there are lots of special considerations when you're dealing with vulnerable individuals, people who may have communication issues, and just being better prepared and having those folks be more involved in the process.

And so we're working on that too.

Okay, so where are we now?

Well, we talk a lot about community living connections.

That's kind of the place to start.

Caregiver support is available to all unpaid primary caregivers, and that's regardless of economic need.

We're able to do that because we have a state-funded family caregiver support program and funding from the Older Americans Act for caregiver support.

So through that program, we can actually be available to people regardless of level of income.

And we do provide a minimum.

You can access a minimum of services through our Family Caregiver Support Program.

There's a range, but even a basic start is just to have an assessment.

And what we've learned, we're part of an evidence-based program and it's an assessment called TCARE.

What's great about it is we've discovered that just that process, going through that process where somebody is focusing on the caregiver, what do you need?

How can we help you?

It has an enormous impact on how that person feels about their stress.

And Amanda has done lots of TCARE assessments, so she can attest to that.

And we also provide information and referral for training and support groups.

So those are just some of the basic services you can access through our standard Family Caregiver Support Program.

And if I went online, would I find access to that and who I should call and how I could connect with Amanda or whomever else is our professional?

Sure.

Well, we encourage folks to start with Community Living Connections.

There's a 1-800 number.

There's a website.

And there are various community sites and actual family caregiver support programs that you can access by contacting, just calling that number.

And tell me who, if I were to call that number, who answers on the other end?

We have trained professionals.

They're trained and funded through, again, this comes out of our Older American Act dollars, that we are able to fund staff within different community organizations who are trained to know about all kinds of resources in the community.

And when they can tell that somebody's talking about what seem like caregiving issues, or they even mention that they're taking care of someone, they can refer them to a family caregiver support specialist.

And that's the individual that can come in and really start targeting on their needs.

Great.

Good.

And I want to say thank you, Councilmember Johnson.

Thank you for joining us.

I just want to mention really quickly that we are also now involved in the Medicaid Transformation Project.

As you're aware, this is a major initiative statewide, and there are three parts to it.

We are very involved in initiative two, which is providing supports to family caregivers.

And we're very excited that our, as the area agency on aging for Seattle King County, we are one of the 13 programs around the state who are involved in this program and what it's allowing People to do is we're trying to reach people a little earlier in the process and before they completely exhaust resources So this is focused more on lower income.

There is an income eligibility.

It's also focused on caregivers who are what care what we call care receivers not the best name but The individual who needs the care has to be 55 years of age or older.

The caregiver themselves can be 18 or older, and that is a distinction from our state program.

If you are a caregiver of anybody 18 and over, you can qualify for services at that program.

So this one is focused, but it's also really trying to help people stay at home before they exhaust all of their resources, and again, with some of the services that are available through our traditional program.

Let me just make sure, yeah, so.

So some of the services that are available to individuals who qualify for the program, and most of these are free of charge.

You can see there's quite a variety, and that's the whole point, is that you start with the individual and what they identify as their needs, and we're really focusing on what we call the dyads.

the caregiver, the care receiver, and it really is support that, for instance, you know, a little bit of respite can go a long ways in helping somebody continue to do this important work and support for their family member.

And Lonnie will talk later about how important that's where the professional workforce comes in because we can't provide respite for unpaid caregivers if we don't have a quality workforce to help with that.

So there's, I just wanted you to see some of the range of services that are available through this program.

And once again, if people may be watching and see this, they call that 1-844 number?

Yes.

Yes.

348-5464.

Exactly.

So the question about if you are eligible, one of the many reasons we're here today is we are really wanting to get the word out about this program because it is new and we're still building it and wanting to serve.

The goal is to double the number of caregivers we're able to serve in this state.

We think through the area agencies on aging and the the program that we've had in existence, we're probably only serving 1% of the population of caregivers.

We're just by doubling that 2% and being able to serve many more, but we found out that the only way we could get additional funding was to really try to figure out a way to do and get a Medicaid match.

State legislature is pretty smart about that.

They said if we're going to expand the service, so we're again leading the nation.

I don't think anybody else has tried this, to really see, to catch people a little earlier in the journey before they're completely exhausted, all of their resources and require Medicaid services.

So there is an income eligibility requirement.

You do need to be lower income in order to qualify for this program.

And their resources are limited, but it's not nearly as strict as the standard Medicaid program.

And the person does need to require a level of care that would be similar to nursing home care.

That's sort of how we folks qualify for long-term supports in the system right now.

It doesn't just include spouses or children.

Again, we talk about how you define caregiver.

Family can be defined pretty broadly.

So it doesn't have to be a family member either that's providing that care.

I'm going to turn it over to Kathy, but I have to bring up your slides and I'm not sure I know how to do that.

There's just a blank spot.

So I'm Kathy McCall, I'm the Advocacy Director for AARP here in Washington State.

And I would love- And thank you and all who are working on that AARP program.

Thank you.

You've done just a stellar job.

Thank you.

And thank you very much for your support around Age Friendly and supporting our seniors in the community and the county.

You bet.

Thank you.

Thank you.

So I'd like to talk about a little bit, the first slide I had was related to the scorecard.

Again, AARP was very, very pleased, and I was thrilled personally, to hear when Washington State was selected as the number one state in the country for our long-term supports and services.

And that is really a complex system of things that Kathy Knight was just talking about.

Our community living connections, the phone number and the website are tremendous resources for family caregivers.

There really is no reason that people can't be accessing that site if they need help to care for their family member.

I, for one, am a sandwich generation.

I have a mother who is 81 years old, and I have children that are 20 and 22 years old.

any one given day at one time I'm helping one family move into a smaller home while I'm helping another member move into their first home and you're stuck in the middle and so there's always a need to take care of yourself and the importance of respite care and the fact that caregiving is also very expensive.

I look at my checkbook and And I see the money going out quicker than it's coming in.

And so one of the things we want to talk about today is not only just the current existing infrastructure we have, but what we need to do in the future to address the continuing aging of the population and to support the family caregivers that we rely on to provide assistance to our seniors as they age.

Great, can I just interrupt briefly and say thank you very much.

And I totally understand your sandwich generation.

I've spoken about it many times.

At the last year of my father's life, after we'd been taking care of him, we had him move in with us.

And it was a complete privilege.

to be that close, but I learned the struggles.

And one of the things that dad would say is, if you've got family and you've got resources and you have most of your marbles, you're gonna do okay.

But if you're missing any one of those factors, I'm quoting him here, I know it's not quite correct, but it makes it much more difficult for anybody to be able to survive, let alone thrive in these older years.

So as you're going through, one of the things I would really like to ask you to highlight is, in addition to the resources that are available, how a family might be considering what they need to know and do.

And for example, Bringing somebody in during the day to care for dad meant labor and industries, workers' comp, full pay.

Fortunately, we had a computer and two lawyers at home to try to figure this out.

And it was really hard.

So the more we can make these resources available, accessible for individuals, the better off the families will be and the caregivers.

Absolutely, and I think I want to just continue to highlight the community living connections because that is the service that they provide.

They provide, whether it's intensive case management or that they offer assistance in helping somebody find somebody to come in and help clean their home or do some yard maintenance in order for them to keep their home.

Our goal at AARP is to have people remain in place.

to remain in their home where they want to be with their community, their family, their friends, their church, what have you.

And so everything we do is focused in on how do we support those family caregivers who are unpaid and not really receiving all the assistance that they can.

And we wanna look at that both from program supports, but also from advocacy and legislative work that we can also do in Olympia.

Good.

Thank you very much.

So, I wanted to talk a little bit about, again, some of the challenges and the real cost.

So, again, there was reference that, you know, there's a lot of social activities, there's preparing meals, managing medications, but all of these tasks require a lot of time and also money.

So when it comes to money, we know for a fact that more than three quarters of family caregivers contribute financially on an average about $580 per month.

So that can be upwards to about $7,000 a year.

So again, looking at the cost of family caregivers, and that's the unpaid family caregiver that is just saying, let me help out.

And again, I didn't realize that until, again, I'm helping my mom move.

had to pay for her cable bill to get it started because I didn't have her credit card to start the account.

So you just look at small little things like that.

Then there's also the time off from work.

Luckily here in the state of Washington, we passed the paid family medical leave.

And I feel very fortunate because I work with AARP.

We have family caregiver hours in addition to our regular time off.

So it's also looking at how do corporations address the need for family caregivers because there's going to be more and more of us that are taking care of older family members because it is a cost effective way to address the aging issue.

So a couple issues that I wanted to highlight.

One of the pieces is called the CARE Act.

And the CARE Act is a piece of legislation that we passed in 2015. And so what we know also is that oftentimes family members are put into a situation as a nurse or a care provider for somebody coming out of a hospital.

But they don't have any training on how to do some of the basics of care.

So it could be giving injections, tube feeding, cleaning wounds.

So what we did was we passed this piece of legislation.

We're currently in the process of getting the hospitals all on board working with the Hospital Association.

is that the hospitals are now required to ask somebody to designate a caregiver, and then that caregiver can receive, and the hospital is required to provide that caregiver with the training that they need in order to care for that person.

So the CARE Act does a couple...

Pardon me.

Is this available to anyone?

Let's just say somebody who is interested in this or interested in getting into the field or just a compassionate neighbor.

Is that available so somebody could raise their hand and say, I want to learn how to do all this.

Yes, absolutely.

So if they have a person that there is in their care and they need that assistance, they can ask the hospital for that specialized training so that when the person is discharged, the family caregiver isn't left, you know, not knowing how to care for that individual.

We had heard stories after stories.

individuals where their family member was discharged from a hospital and they were given a paper bag fill of medications and bandages and gauzes and syringes and having no idea and their only recourse was good to go to YouTube to learn how to do these things.

So our hospitals have a responsibility and so this CARE Act is about holding the hospitals responsible to be part of that correction in the system.

My question really was, do you have to wait until you've got a loved one in the hospital?

Or could somebody say, I see it coming down the road, and I want to know about this before the time I'm going to have to need to know these skills?

I'm not familiar with...

It's a really good thing for us to look into.

That's a good idea.

I don't want to twist your arm on it today, but I think it is critical that we be forearmed.

You know, it's like taking your basic first aid class.

Right.

You want to have it and not be reading the book while you're trying to deal with somebody on the sidewalk.

Right, exactly.

Well, one of the things I'll also talk about is the Long-Term Care Trust Act, and a colleague of mine, Lonnie Todd, will also talk about that with some training that's also going to be provided for family caregivers.

So we're excited about the CARE Act.

It's not the be-all, end-all solution, but it is definitely a really positive first step.

So I did want to talk about the Long-Term Care Trust Act.

So I went over kind of the CARE Act and how it works.

One of the other things I wanted to mention is just the readmission rates.

So one of the ways that the CARE Act is really beneficial to hospitals is it helps people from going back to the hospital via the emergency room for a wound or an injection or a medication that was given improperly.

So the Hospital Association has been very supportive and we're looking at, continuing to work with them in order to further that program.

So I want to talk a little bit about the Long-Term Care Trust Act.

And the Long-Term Care Trust Act is a piece of legislation that we started working on about two years ago.

And we're looking at running a bill this session.

that basically creates a premium, it's a .58% premium, so 58 cents per $100, that goes into a trust that people can access and use for their long-term care needs.

People have not saved for retirement.

They don't anticipate, they don't think that they'll ever get old.

If you talk to most 20 and 30-year-olds who could buy long-term care insurance now for pennies on the dollar, they don't think of it as a priority because they don't think they're going to get old.

And heaven forbid, I'm never going to get sick.

Why would I need long-term care assistance?

So, what we're really trying to do is look at how we actually create a system that addresses the need for long-term care.

Because, again, Medicare does not pay for long-term care.

A lot of people think it does.

It does not.

And people do not want to have to spend down into poverty in order to qualify.

So the Long-Term Care Trust Act, again, it's through a .58% long-term care premium.

The benefit is $36,500, so lifetime benefit.

And what is great about this piece of legislation is that it enables family members.

We just talked about the cost for family members to pay for care to help mom or dad.

is that it gives the family member the ability to pay for their family, their other family member to care for them.

So instead of taking off work or losing money, that they can actually be paid for, but they need to receive a minimum amount of training in order to access and be paid for out of the trust act.

Tell me, do you have sponsors in the legislature right now?

Yes, we do.

Good.

I'm not going to worry about you.

Kathy's grinning over at me.

I just want to make sure our Office of Intergovernment Relations was involved.

It's something we would be very pleased to help sponsor and help support.

And what's also great about this is that as the population ages, there's going to be a $19 million savings to the state for Medicaid.

So again, this is just one intervention to help slow people down.

into having to be forced onto Medicaid, that this is their money, they have the ability to spend it.

The other thing that is really great about this program is that it matches the Washington State's current public system, so they can also use their benefit to pay for a home modification.

So maybe the only thing they need to do to stay in their home is build a ramp.

But they don't have the $5,000 just sitting around to pay for a contractor to come out.

They can use this money for that.

They can use it for transportation to go out to medical appointments or to even go to a crafting class at their local community center.

Maybe they don't have an access bus.

Because we're looking at this statewide, we want to make sure that what works here in King County and Seattle also works for our rural communities and addresses the issues around long-term care.

Great.

Kathy and everybody at this table, please stay closely in touch with Lena and Allison in my office.

This is a priority for us, so we'll be helpful.

Great.

Thank you.

So I wanted to also just say kind of in closing that AARP caregiving and supporting family caregivers and giving caregivers the choice that they have in terms of their setting and their place and their ability to retire and live with purpose and dignity is by far our number one priority.

So we look at everything from that vantage point.

We also have a variety of resources available at aarp.org slash caregiving.

There's also a fantastic book called Prepare to Care, which is a detailed booklet of all the steps that is required for a family member to help an individual or the individual themselves to help themselves plan for care.

And it looks at everything from the legal aspects to powers of attorney, guardianship, but also some basic things of, you know, planning for your home.

How do you prepare your own home so that it's free from hazards for falls?

It's also, you know, accessible and you have transportation options available to you.

So.

Who's the author of Prepare to Care?

Is that you?

AARP.

Great.

Thank you for that.

So again, those resources are at www.arp.org slash caregiving.

Great.

And it's called prepare to care.

Very good.

Thank you.

Thank you.

Thank you very much.

I'm delighted with this material.

It's precisely what I was hoping that we could make public.

And one of the things that you said, which I smiled at is, you know, none of us when we were 29 years old ever thought we would ever get this old.

But we all are in a position where we either are going to need to be cared for or to care for someone.

And to have this set up in advance, you know, in some ways, what I was asking, do you have to wait until someone is in the hospital to learn these skills?

No, we ought to be learning them now when we're still physically able and interested in doing that.

So many thanks.

And I just think it's marvelous that our age-friendly city is highlighting this.

Thank you for being so articulate about it.

What's next.

Thanks.

Well now we're going to turn to the dementia action collaborative.

I'm going to turn this over to Karen Winston who's a planner in my division and she's kind of our resident expert on all things dementia related and We do know that so many of the folks who are caregivers are caring for individuals who have different types of cognitive limitations.

And we also know the increase in Alzheimer's disease and other related dementias.

And we're looking at that as our next public health crisis.

So it's really important to be addressing those needs, too.

Great, Karen.

And it's one of those marvelous things that we all want to avoid.

Yes.

We don't want to believe that either ourselves or someone we love and work with are getting to the point where memory loss is impacting them.

So tell us what to do.

OK.

So thank you.

So as a planner for Aging and Disability Services, one of my assignments is to represent ADS on the Dementia Action Collaborative.

that's organized by the state.

And I also staff one of the city's boards and commissions, the Mayor's Council on African American Elders.

So I've made available the copies of the Dementia Action Collaborative legislative agenda, which includes an ask in the next biennium for $5.4 million.

The funding will be used to disseminate dementia care practices to primary care providers, to provide health messages, public health messages, to promote early legal and advanced care planning, to develop dementia care specialist program throughout the state, and to increase specialized service capacity for people with dementia and family caregivers.

So in a related capacity, I worked with several African-American faith communities to coordinate Memory Sunday.

And Memory Sunday is nationally recognized on the second Sunday of June.

And Memory Sunday was created by an organization called the Balmain Gilead, and their mission is to promote healthy black churches.

So Memory Sunday is an opportunity for these churches to talk about Alzheimer's and related dementias.

from the pulpit and the devastating impact that Alzheimer's is having on the African American community.

It's also an opportunity to not only step up as a source of support for their parishioners, but also to educate their congregation about Alzheimer's and related dementias.

This year we had four churches participating throughout the city.

Next year we hope to double that number.

So in a few weeks ago, on November 10th, we had an African American caregiver forum.

The forum is open to everyone, but it's intended to provide information and support for caregivers whose loved ones have dementia.

This year, we had over 100 people attend the forum.

And our program included presentations by George Dix, who is a geriatrics mental health specialist at Harborview.

Carrie Goodman came from the Balm in Gilead.

They're located in Virginia.

And Carrie discussed culturally competent Alzheimer's caregiving and advocacy among African-Americans.

We also had Dr. Jim Demaine, who is a retired a pulmonary physician from Group Health, who discussed end-of-life care planning.

And finally, we had an excellent panel of caregivers, and I think that's really the value of the forum and the caregivers in the audience.

to learn and to hear from the experiences, hear the experiences of other caregivers.

That segment was called Loving from the Frontline, and I think that was very well received.

And overall, it was a wonderful forum, and we're looking forward to having an even better turnout next year.

Good.

I have not heard about that, so thank you for bringing that to our attention.

Have you heard about the dementia roadmap?

No.

Oh, we need to get you that.

That's an excellent resource.

And we found for families who are just beginning the journey, it's so helpful because it provides guidelines and helps people in terms of kind of expecting what comes next and what they need.

It's an excellent resource.

I would appreciate seeing that.

Thank you.

And the roadmap is available online on the Community Living Connections website.

And it's downloadable on there as well for the public.

And it's great for anyone to access at any point along the roadmap of dementia and whatever stage they're at.

And it's filled with incredible amounts of resources.

Thank you.

Thank you for that.

Sure.

So now I'd like to introduce Lonnie Todd.

She's the legislative and policy director for SEIU 775. And we're really pleased to have her here today.

Nice.

And welcome.

And we heard from Adam yesterday who thought, what, we left you out?

So of course not.

Ever.

Thank you for having me and thanks for affording me the time.

As we've heard a lot about the long-term care system today and the needs of caregivers, I want to, as highlighted, talk a little bit about the professional workforce side of the thing, side of the work, and how it affects unpaid professional, unpaid caregivers as well.

So, SEIU 775 is a labor union that represents about 40,000 long-term care and, among other workers, 40,000 long-term care and home workers in Washington State.

And all of these workers are actually Medicaid workers serving Medicaid clients and are either paid directly through the state as employees of the state or through agencies that have contracted with the state.

And they're able to, through the Medicaid program, as Kathy McCall highlighted, Medicare does not serve long-term care needs, but Medicaid system does.

So if you're eligible via both Medicaid needs in terms of physical needs and in terms of financial eligibility.

You're able to then go through many times an organization like Kathy Knight's and figure out what needs you have and line you up with a caregiver such as one of our members.

About 50%, between 30 and 50% of our members are family members of some kind.

And the others are either friends, neighbors, or clients in the community where they were able to find the right worker for the right client.

Our workers tend to be, the workforce is over 80% women and 30% people of color, 20% of which are, 20% of our workforce is also foreign born.

So we have a huge amount of community inside community serving needs.

Many languages are spoken, and especially for people that have very specific needs, they're able to get culturally and linguistically appropriate care through the program.

So we obviously have a very broad legislative agenda for 2019, but want to focus here a bit on training and living wages as it pertains to the workforce.

A professionalized workforce on the paid side is integral to a functioning long-term care system at the state level, but it's also key to respite care as you've heard a little bit about.

So I want to, before I discuss our 2019 legislative priorities, give a little context as to how we got there.

So in 2007, or 2004 around, before caregivers came together and formed a union, 2004 is when they formed a union, they made $7 an hour, so just a few pennies over minimum wage.

They had no access to L&I, they had no access to any benefits, and there was no formal training.

So it was really in many ways considered, we had legislators tell us it was adult babysitting.

It was a what?

Adult babysitting.

Adult babysitting.

Since coming together and with a huge amount of support from the state government and organizations like you have here, we've been able to see huge significant professionalization gains within the workforce.

And I think one of the things that helped us get number one in the nation.

So I want to talk about some of the things that have come about around that professionalization.

So as I mentioned before, there was no training.

There was no career pathway.

And the average wage was a couple pennies over minimum wage.

Now, when our new contract is funded in the new budget, the average wage will be over $17.50 an hour.

So definitely not quite to a nurse's salary, but on the way to a real professional salary and a living wage.

And workers are entitled to a retirement benefit.

It's the first in the nation.

Only long-term care workers through the Medicaid system that have any access to a retirement program.

A very robust health care benefit system.

And then the best training and strictest training requirements in the nation.

So I want to highlight some of that.

specifically for you because it's such an exciting program.

So the SEIU partners with a partner organization called the SEIU Benefits Group.

That's an employer, employee-owned benefits trust, and the training partnership is the biggest part of that.

The training partnership is the second biggest education institution in Washington State, second only to the University of Washington.

It serves 50,000 students a year.

They have over 300 basic training courses and they train in 39 cities in Washington State.

So it's statewide and really both in terms of creating a basic training structure and in terms of creating a continuing education program that really meets the needs of what people are seeing in their own work.

So dementia classes, mental health, we've seen a huge uptick in the mental health and behavioral health needs of both clients and caregivers and making sure that we're able to take care of that.

How can people learn more about these programs?

They can go to www.mysciubenefits.org.

And then I would say the best way to figure out if you are eligible to receive paid long-term care services in our state is to go through your county W4A, Area Agency on Aging, and they're able to walk you through what you're eligible for and what is the best fit for you.

So as Kathy McCall touched on, we are in actually somewhat of a care crisis.

Not only do we have a huge amount of people in the sandwich generation and otherwise serving as unpaid caregivers, but based on demographics, we're going to have more people needing care and fewer caregivers to provide that care.

So really wanting to make sure that our focus at the state level is not just professionalization, but also making sure that it is a job that people can stay in, can thrive in, and that there are career pathways.

and that we're really focusing on recruitment, not just retention.

So one of the neat other programs we have going is a new program called Carina.

And it's actually a matchmaking service, because what you'll hear a lot of the times is when someone loses, they might have a paid family caregiver taking care of them.

If they lose that family caregiver arrangement, it's really hard to find a new paid caregiver.

Carina is a new matchmaking service that actually in real time works with the department and the workers to make matches in your community.

And sort of like care.com for the Medicaid eligible population.

And really trying to deal with some of those access issues and hopefully use it as a recruitment tool in the future.

The other thing I would say is that, bringing it back to the legislative agenda, all of these wins that we've been able to get outside of broad public and organizational support, these all happen through collective bargaining.

So we collectively bargain with the state through every biennium around wages, benefits, and training.

And so our legislative agenda in this upcoming biennium to make sure we get the contract funded so that we can continue the robust and expand on robust training, making sure that there's a living wage, especially with the cost of living that we see in Seattle and King County, and making sure that workers can really afford to stay in this work and that especially for family paid family caregivers that who have had to leave the workforce are able to not only just pay their bills but make sure that they are not losing on health care and that if they get injured taking care of a loved one that they are able to access the disability and that sort of thing that they need.

So the it's collectively bargained with the state and then it's up to the legislature to then fund that in the next biennium So that's number one on our legislative agenda is making sure that individual provider contract gets funded But I'd say a very very strong number two is the trust act which Kathy McCall touched on the trust act is something that we've been working on for a long time because we do have people that either have to rely on family caregivers as long as they can, or have to spend down their entire life savings to get to Medicaid long-term care.

And it's not only not a fair system, it's not a viable system.

And so, as someone in their 30s, Even I know all about the long-term care system, and it seems like the long-term care insurance market is just too confusing, and there's not a good product that is really made for the general public.

So this is something that we've worked on for many years and is ready to go, and we'll really be able to, for most Washingtonians, be able to deliver the type of long-term care needs coverage that they need.

So whether it is direct care or modifications, but really meeting people where they're at and recognizing that we should not have a system where after years and years and years of work that you have to bite down into poverty for your last remaining years.

Thank you for your leadership and SEIU generally for all the work you've done for the last 14 years.

It's made a big difference.

I know Councilmember Mosqueda and I in particular are very interested in working with you on this, and then on the trust program you're talking about, but also expanding available health care options for people across the state.

So just know you've got pals and advocates here.

Great, thank you, and thank you for your leadership as well.

And I would say the last thing I want to touch on the 2019 is the personal needs allowance increase.

So for clients on Medicaid in the aging population, if you are between 100 and 100% federal poverty level, you are required to pay some sort of copay.

And this can be upwards of hundreds of dollars a month.

What we're seeing is that this can be the difference between someone being able to stay in their home and someone having to rely on skilled nursing or hospital care.

So there was a ask, we have an ask in the budget this year to increase that and remove the copay for as many people as we can.

Thank you.

Thank you.

Really well done.

So are you going to talk more?

Just a few more comments to kind of wrap it up.

I just want to echo Lonnie's comment about the reason we're number one in the nation for long-term supports is it's a long-term partnership that we've had in this state between the Department of Social and Health Services, the local area agencies on aging, and the network of individual providers and home care agencies that have provided the support to help people stay at home.

And so it's been a very important partnership over the years.

proud that we have that.

And I just want to acknowledge the fact that it's been a lot of work and not necessarily widely sung.

And so part of our goal for the next year is going to be to really, really lift it up, raise it up so people know what their options and opportunities are, and just what an incredibly important part of our social fabric this is.

So amen, sisters.

So just to mention briefly, I want to put a plug in for the Senior Lobby.

That's an organization, we actually have 37 members, and we're members, part of the group.

They have a retiree association, there's mobile homeowner association, it's a broad range of organizations that have been members of the senior lobby for 40 years, I guess, many of them.

And we all work together.

That's where we do a lot of our advocacy at the state legislature, both what Kathy and Lonnie were talking about in terms of some of our initiatives for the coming legislative session.

We'll be doing that in conjunction with the senior lobby.

And we have sort of what we call the Age Wave Coalition because that's the organizations that are really focused on the long-term support system and really strengthening that.

So we have, and you've already heard about some of the initiatives there.

And the folks come down to, well, they're actually meeting LACI monthly.

All the organizations come together now.

Everybody's gonna be getting organized and ready for the session, and we'll be tracking lots of different bills and working together.

And I think that's where we've seen some of our most effective work is as a coalition.

So we'll be going down.

We all have advocacy days for our individual organizations, and then we have Senior Lobby Day in February.

So it's been a great partnership, and that's been real important to the work we do.

Great.

Thank you.

I did want to just mention, and maybe Amanda can help us, I feel like there, you know, in terms of your question about can't people be learning some things before, say, they're in the hospital and there's a crisis.

I think that through our Family Caregiver Support Program, there are options for people who can get some training.

You might want to talk about that, Amanda.

Yes, that's correct.

So through the Family Caregiver Support Program, we do have trainings that can help people build skills.

Like one of them is called Powerful Tools for Caregiving.

So it can help people build skills on how to do things that they may anticipate that they're going to be needing to do in the future, but not necessarily something that they're currently doing.

so it could prepare them.

And the Family Caregiver Program is the state-ran program, so that's the one that has no income cap to it as well.

So people with higher incomes could also utilize that service as well.

I think it's wise.

And I'm not panicking here, but I'm just recognizing that as we are, as a group in King County getting older, that having people trained and recognizing it's not weird to do this.

It is a very proactive approach to personal and public health.

So I'm very appreciative of all the work you're doing.

Would you just fill me in?

Do we have time for questions from the audience?

And here's the embarrassing thing.

I'm going to have to leave you and go back to my jury duty.

So Allison, can I just ask you to take that over and if there are questions, anything else that any of you would like to say?

Did we miss anything that you would like to just sort of promote at this point?

One thing I'd like to just kind of also share is that AARP, along with a coalition of organizations, is looking at how to make some adjustments to the senior property tax exemption within the state.

And right now you have to have only $40,000 And so for most seniors that are on Social Security and maybe have a small pension, they don't qualify for the senior property tax exemption.

And again, going back to what I said before, AARP's goal is to keep people in their homes and help them age in place.

With dignity, and it's good for everybody.

Exactly.

And so the senior property tax exemption, one of the things we're looking at, and it seems like we have some good bipartisan support, is looking at adjusting that income cap based on the median income for the county.

So, because whatever we do under the state constitution has to be uniform.

So, what we're looking at is adjusting it based on the median income so that more and more seniors can qualify for that exemption.

The other thing I just want to, you know, let people know, and again, this is related to caregiving because it's easier if mom or dad stay in their home versus having to move them out of a home that they've been in, you know, for decades.

is that a lot of people don't use that exemption and they don't use the deferral either.

So there's ability to use that.

It's a bit cumbersome and part of our legislation is also looking at how we simplify the process.

So, I just have to put in a plug, too, because you'll be happy to know that Aging and Disability Services, as the Area Agency on Aging, we have an advisory council, and we're working very closely.

That's one of our priorities for King County.

We have a state legislative agenda as part of the Area Agency network.

That's some of what we've already talked about.

But we also look at regional needs, as individual AAAs do.

And property tax exemption, we worked on that last year.

We're going to keep working on that to try to provide more support.

And as part of our age-friendly initiative, we're looking at trying to make it easier for people to be able to apply for that.

It's kind of, I think, confusing for people.

And a great thing that happened through the veterans and seniors and human services levy, if I get that right, and the funding that went to senior centers this year with the initial funding, they had extra dollars available so that each of those senior centers that were funded are going to be able to do a little more work to try to help people access that benefit.

So it's all part about trying to help people know what's out there to help them.

Right.

And make it easy.

Have connections that are clear.

It makes a huge difference.

OK.

Anybody else have any wonderful last words that you would like to make?

Well, say hi to Amanda for me.

OK.

I really appreciate that.

So can I ask, is there anybody in the audience who would like to make some comments?

Please.

Please use the microphone, OK?

And nice to see you again.

My name is, this one?

Yeah, either one.

Good, you got it.

Okay, well my name is Dolores Rossman and I really wanna thank the caregiver support that I have received through Sound Generations, their program.

If it weren't for that program, I would not be here today.

I have a caregiver taking care of my husband because I'm a full-time caregiver.

So I just wanna, I don't think a lot of people know about that program.

I just wish there was more publicity about it that people can access it and get some relief and also respite relief as well.

So thank you.

Good.

Well, thank you very much.

Thank you for coming down and I'm glad that you had that available for you.

Since we don't have big marketing budgets, this is our great opportunity to get the word out with you today.

Right.

Well, just know that this will be something we'll be working on in my office.

I would like to have that drumbeat louder and continuous.

Thank you.

We can help with blogs, we can help with Facebook and social media, and then that gets shared.

So let's just make it a goal this year of having at least monthly, if not more, this information that's out and gets out to people.

It'll make a difference.

Sounds good to me.

Good, me too.

Anyone else like to join the conversation?

Eileen Stewart?

They're the experts.

Well, experts in the back row, don't be shy.

I think that's it.

OK.

Well, wait a second.

They're moving.

All right, thank you very much.

Oh, Eileen, okay.

Hi, I'm gonna ask Dolores if she'd come back up and just maybe tell a story, you've got so many of them, but tell a story about how caregivers have made a difference in some of your recent experiences with your husband.

Do you think you could do that?

OK.

Thank you.

It brings it to life.

Irene, thank you for doing that.

And I'm going to excuse myself.

I apologize to you, but Judge North isn't going to take it kindly if I don't get back on time.

Thank you.

There was a period where I had no caregiver support.

And my husband is a World War II veteran.

He's 92. It's been, well, it was extremely difficult.

I had a severe depression as a result, but I had a wonderful therapist who said, Dolores, you need support.

You need somebody to help you.

So I was able to get the program, and it made all the difference in the world.

In our country, we're often taught to be very independent and not to ask for help.

But when you're in that situation, you do need help.

And so the more people that know about your services, the better, because as we've talked about, all of us are going to be needing or caring for someone.

And if we just could talk more about it and not have it be kind of this hush, hush thing, but that this is a normal, natural, thing that we do is that we age, and how can we be more of a caring society?

And not only caring for the person needing the care, but the caregiver as well.

So I've been very, very fortunate.

It was a tough haul, but had it not been for that therapist telling me, you need to get some care, I might not even be here today.

So thank you.

One of many stories.

Thank you.

And I would just add a plug on that.

I mentioned it quickly, but carina.com, for those caregivers that are on Medicaid but are looking for just a little respite help, go on carina.com and see if we can line you up with a respite caregiver.

Thank you.

Anything else, Kathy?

No, I think that's it.

All right.

I think with that, we're adjourned.