November is Family Caregiver Month: Time to Celebrate Wisconsin Caregivers

November is National Family Caregiver month. Did you know that One in five Wisconsinites (or 1.18M people) is estimated to be an unpaid caregiver?  Wisconsin family caregivers provide more than 490 million unpaid hours of care annually to individuals with disabilities and older adults. 

80 percent of all care is provided by families who help loved ones daily with meals, bathing and dressing, medications, doctor appointments and more. 

Today’s guest is first and foremost Mom to Kelsey, who has Angelman Syndrome. Lisa has over 30 years’ experience advocating for persons with disabilities and navigating the complicated support system, including for her own daughter.  She is also Executive Director of the Respite Care Association of Wisconsin.

Respite Care Association of Wisconsin: https://respitecarewi.org/

RCAW respite care provider registry: https://respitecarewi.org/registry/ 

Family Caregiver Month activities and resources: https://www.caregiver.org/news/celebrating-our-communities-caregivers/

Wisconsin Family and Caregiver Support Alliance (WFACSA): https://wisconsincaregiver.org/alliance

2021 Wisconsin Family Caregiver Month proclamation: https://arcwi.org/content/uploads/sites/17/2021/09/110121_Proclamation_Family-Caregiver-Month.pdf

Thank you CUNA Mutual Group Foundation
The CUNA Mutual Group Foundation: Supporting the sustainable development of our communities.

Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.

Transcript

Speaker 1: 0:05

Welcome to the arc experienced, featuring the stories of self advocates with disabilities and their families from around Wisconsin. Be inspired. Take action. And now for today's episode,

Speaker 2: 0:23

Hello and welcome to the arc experience podcast. I'm your host Lisa pew with the arc, Wisconsin and November is family caregiver month. Did you know that one in five Wisconsinites that's 1.18 million people is estimated to be an unpaid caregiver. Wisconsin family caregivers provide more than 490 million unpaid hours of care annually to individuals with disabilities and older adults. 80% of all care in our state is provided by families and they are helping their loved ones daily with meals, bathing, dressing, medications, doctors, appointments, and more. You likely know a family caregiver in your community, and maybe even you are a family caregiver. Today's guest is a family caregiver she's first and foremost, mom to Kelsey who has Angelman syndrome. I'm sure we'll be hearing a lot about Kelsey and today's podcast. Lisa has over 30 years of experience advocating for people with disabilities and navigating the complicated support system. Lisa is our guest. She is also executive director to respite care association of Wisconsin. Welcome Lisa.

Speaker 3: 1:33

Welcome and thanks for having me on today. Oh, well,

Speaker 2: 1:35

You're a perfect guest to help us kick off a family caregiver month for a variety of reasons. You know, first of all, I definitely want people to know about the respite care association of Wisconsin. Can we start there? What is respite care association? Why should people know about it?

Speaker 3: 1:51

Sure. Actually respite care association of Wisconsin is a statewide organization that we're here to help family caregivers with their support needs. And, um, over the years we've developed five programs to really be strategic and trying to support family caregivers, kind of the meat and potatoes of what they need in regards to getting a break, because that is so important oftentimes, and as you know, and I know that, um, we, uh, our family is first and we give it our all, but sometimes we get too much without taking a break. So we've developed some programs that involve training. So we do some recruitment to try to find people to increase the pool of trained respite care workers in Wisconsin. So we have, we offer a comprehensive portfolio of training opportunities and, um, when people complete our training, they're able to go onto our respite care registry so that they are available, um, for people to find and to match in order to provide, uh, to be hired for cares in the home. And it's okay for employers to even go on there and look because we want to just, again, increase that pool of, of folks, um, to provide respite, um, and the caregivers. We also do a lot of outreach and education to, um, a number of, um, online or virtual events. And we have a number of grants that really, um, focus on providing direct respite care for family caregivers. We P we provide, uh, grants to respite care provider agencies so that if they can, they want to expand their program to serve some underserved populations, such as folks with tribes or Hispanic or the African-American communities. There's some grant funds out there for that. Um, there's a whole number of, uh, other grant programs that are very specific, but all related to respite care. Um, we also have a comprehensive resource page and we have it divvied up between, um, uh, children, adults, and older adults. So you don't have to go through a whole bunch of stuff. You can kind of hone in on what you're looking for. And then again, with their registry of trained workers that we have currently, we have about seven 16 people on our registry that, um, can be searched by county. And by age of your loved one, whether it's a child that belts or an older adult, and hopefully,

Speaker 2: 4:03

Yeah. How many people on that registry, I just want to make sure that people hear that, oh,

Speaker 3: 4:07

There's 216 on the registry right now,

Speaker 2: 4:10

216. What an awesome resource that registry is to people in Wisconsin. I bet there are a lot of folks listening that didn't even know that that existed. Do you get people calling you that are like, wow, thank you. I didn't know that you had such a thing

Speaker 3: 4:24

All the time. It, because everything we offer is free as well. So there are some other programs that are out there are registries or places where you can find workers. Oftentimes you have to pay a subscription because of how we're funding. We offer everything for free and people have a hard time, you know, we're not an employer, so we're not competing with anybody. We're just really here to be a support system for family caregivers.

Speaker 2: 4:48

Wonderful. You know, and I learned something and, you know, you probably could talk the whole podcast about all the things that Ricard does. And I think we want to make sure that people can go to your website and find that, and we'll remind folks of what that is at the end, but, um, you know, all those grants, the registry that must provide a lot of relief to family caregivers. I'm wondering if you could talk about like, when, when family caregivers call you, what does that sound like? What's ha what is happening for family caregivers right now in Wisconsin and what, what what's happening when they call you for help?

Speaker 3: 5:24

Well, um, a lot of the times they're calling when they're already at that point of severe distress, and they're not knowing what to do, not knowing where to start and with the staff that we have. That's the one really, um, thing that I'm very proud of is staff will take the time to listen to what the, uh, family caregiver is saying, because oftentimes they don't know what they don't know. So they don't know what they're asking for. They don't know where to start, but we'll kind of help walk them through the process. And we do have a number of people calling us because there's an increasing amount of long distance caregivers that are emerging because of things that are happening during COVID. And again, the caregiver workforce shortage, it's just really been, um, a huge impact to families getting in, in their care recipients, getting the care that they need. Um, when we walk people through certain, um, processes, we usually identify resources, one that we can help, or we, we kind of serve as a no wrong door approach, even though, you know, others do that, but that's, we just won't pass the buck or, um, uh, you know, not follow up with them. So we will walk them through until they're connected their program. But some of the things, um, that we're really getting are people are also calling us that are, um, coming relatives of, um, relative caregivers of people that aren't there like biological children. And there's a many reasons for that. But a lot of times people aren't familiar with kinship care or the absence, if you don't choose to go into kitchen care, um, we're able to help those folks. So there's some just new emerging family, caregiver issues that are coming up rather than just the standard ones. And it just all is building and adding a little bit more to the crisis, but we're trying to have Medicaid that along with our collaborative partners at your agency. Yeah.

Speaker 2: 7:11

Yeah. I mean, when you meant, when you used the word crisis, I think that definitely is the case. I mean, those numbers that I shared in the beginning, 80% of all care provided by families 490 million hours of care every year. That's a lot of care. And I know I, you know, in the introduction I talked about you as a mom, to Kelsey, what, what is that? Can you talk a little bit about Kelsey, who is Kelsey and kind of what has been your own caregiving story?

Speaker 3: 7:43

Oh, I love to talk about Chelsea cause it's, it's been a positive thing. Experience-wise and um, so Cassie has Angelman syndrome, so she is non-verbal and has intellectual and developmental disabilities is ambulatory. So I, you know, I feel very fortunate with that, that I'm able to get her around with transportation. Myself. A lot of people are so reliant on transportation and that's a huge barrier from their loved one being involved in the community. Um, with Kelsey, we have gone through a reprogram available, uh, you know, from the app birth to three to early childhood to while we were on the wait list for ever for CLTs. And we aged out before we ever got on that, but we did have access to what was called. It was called family support funds. Um, I think it's the C cap funds that are re referred to now. Then we transitioned in, um, to a family, share a long-term care and then switched over to IRS. But I feel like we've hit all of these different programs and we just, so we kind of walk the talk, but with Kelsey, she has this, um, innate ability. And I think we can all talk about that with our kids, that they have this sixth sense, sixth sense, um, in judging people or knowing a good person without having to even talk with them. There's just a gift that they have. And throughout this time we've been really lucky and having, um, RSP care worker, Anna, who has just been a godsend, um, she came to us and actually approached us. I didn't have to seek her. And she wrote a note in Kelsey's backpack. She worked for an agency and said, I want to hang with Kelsey. She's so much fun. And how many times do you get notes like that? Like never happens. And I'm like, you want to hang with my kid really? And I'm like, I'll pay you. I was like jumping at the bit to, to engage with her. And fortunately I engagement has really paid off. We have had Anna in our lives for over 10 years now. And Anna we've had her come to the EPS. I've had her come to the doctor with me. Um, I involved her in a lot of, um, decision-making processes because anesthesia is another side of Kelsey that I don't see and that others don't see. And so, um, involving your respite care worker in, um, a life and the needs and, um, uh, resources for your loved one is, is really key again for that long-term cure, um, relationship. And what's even nicer on top of that. And I was talking to you a little bit about that earlier, before we started is Anna's daughter. Now, um, her name is Lydia and she has been, um, 17 now. And Kelsey has been a part of her family for more than half of her life. So Lydia has asked to help provide care for Kelsey. And, um, we just started this week. And again, just for nurturing that relationship, now, I'm going to the next generation that I'm, I can't say how excited I am about that. So just again, those nurturing relationships, relationships with your workers is so key. Okay.

Speaker 2: 10:47

How wonderful it is that you have that key quality worker in your life to support not only Kelsey, but you and your role as a family caregiver ha and how fortunate that is and actually rare. I'm sure you would agree. That's rare that family caregivers have that level of support. Hey, Lisa, I want to keep talking about this. Um, I'm going to take a short break and we're going to hear more from you.

Speaker 1: 11:14

Today's episode is sponsored by the CUNA mutual group foundation, supporting the sustainable development of our communities. We believe that a brighter financial future should be accessible to everyone no matter where they're starting from.

Speaker 2: 11:29

We'll come back. We are talking to Lisa Schneider with the respite care association. She was just talking to us about her role as a family caregiver and the great support she has from a direct care worker. But we know that these, you know, uh, 80% of family caregivers in Wisconsin who are family members really are in a crisis. And that's part of the reason why we recognize November as family caregiver month and try to create some awareness. Lisa, you are also, um, the co leader of the Wisconsin family and caregiver support Alliance, which we both belong to. I'm wondering, can you give us a sense for why family caregiver month is important and what you hope happens during family caregiver month?

Speaker 3: 12:11

Well, November, uh, national caregiver month is a great opportunity to heighten the awareness of family, caregiver issues. One of the tremendous amount of work that they do as you talked earlier about the number of hours that they provide that are unpaid. And, uh, many of these folks are also trying to balance, um, work and caregiving and just the rest of their life and sort of create some awareness about that so that more people are aware of it. And hopefully even more employers become aware that they probably have caregivers that are, that they're employed. They're not even aware of. So to create that awareness and to also help engage family caregivers, to maybe be more self-aware that they identify as a family, caregiver themselves all too often, they don't recognize themselves as a family caregiver and they really are, and that they need to know that there's supports and resources out there for them. So they create that awareness and kinda, you know, get people excited about, wow, you know, I didn't know, you know, there was a little of these things out there. That's an opportunity again, to share resources and to just know that we're here and to also give others opportunities, to find ways to engage family caregivers in how they can help them, as opposed to say, oh, I couldn't do the work that you do. Um, I don't know how you do it all. What can I do to help, you know, you want me to bring a meal? Do you want me to bring them up eight forthright in you're asking, uh, how to help a family caregivers? And so we had to provide some ideas and insight of how beneficial side is.

Speaker 2: 13:41

Yeah. You know, I think the things you said about, you know, the number of hours that, uh, caregivers provide and the impact on their work, just a few data points around that. Um, we know that Wisconsin caregivers report provided about an average of 41 hours of care per week, and that half of caregivers report that they actually have cut back on the hours that they're working or volunteering at jobs outside in the community because of their caregiving. And then that of course, results to, you know, lost income for them and maybe impacts their retirement. Um, also I know that caregivers spend a lot of their own money in their caregiving role, whether it purchasing things or again, if they're hiring help out of pocket. Um, so, you know, I think it's so important that we have the respite care association of Wisconsin and all the great work that you do. So thank you for that. I wonder if in your role as a caregiver and also in your role as executive director of the respite care association of Wisconsin, what are your kind of words for other family caregivers who are trying to hang on? Like what, what, what can you say to them about, um, their role and, um, maybe to offer some comfort?

Speaker 3: 15:00

Well, I, I do think that as much as COVID has been a negative impact, it has shined a light on the caregiver issue, especially family caregivers. And, um, so hopefully some good can come out of that in regards to, um, you know, lot of times people aren't, uh, don't take interest in an issue until it affects them. And I think a lot of people had it affect them during the Kobe, um, pandemic. So this is an opportunity for more people to, um, do raise their voice. I think with the work of the governor's task force on caregiving, the recommendations that are still being worked on, um, that those are things that some of these family caregivers can get behind so that we can make some of them come to fruition. And similarly with the current res ad and the report that just came out for, um, um, from the res, uh, council that they just provided a report to Congress. Um, and for those who don't know, res stands for recognize, assist, include support, and engage. This will eventually become an opportunity for all the family caregivers to have a voice as well. And it's important for them to have that voice, because that is really to tell legislators, hear you, um, that is when things are going to change. And so, um, do use your voice to affect that change. That's, that's gonna be the best way possible for caregivers to get the supports and resources that they need. Yeah.

Speaker 2: 16:26

Lisa, you do such a good job of that. I know that you have legislators of both parties that participate in respite care association of Wisconsin. You have relationships with your elected officials. I know it seems like one extra thing to ask family caregivers to kind of do that. But I mean, it really is as simple as telling your family caregiving story to another person in a way to help them understand what your day to day life looks like. Right. Lisa. Yeah,

Speaker 3: 16:55

Absolutely. And even with things, um, that, that aren't so obvious, but when for those who are impacted, um, it's devastating. And we were just on a call yesterday and the Northwestern part of Wisconsin, and they were talking to us about, um, uh, transportation issues. There's a lack of transportation up there. And I should say transit of durable medical equipment, there's a Hoyer lift shortage up there. And you've got folks that really need to be changed and moved that are non-weightbearing and, um, and not have those kind of tools out there. Um, and whether that's in an adult day center or whatever that affects again, the quality of care that family caregivers, what peace of mind from that. And when there's always these glitches in these systems, um, we gotta, we gotta work on this. And so just finding out about little tweaky, things like that, um, are things that we should be bringing to the attention of our legislators, that, that they really understand what's going on. That it's not just sending a person, it's getting the transportation, it's getting the product, it's getting the people in. It's just the big thing, but our voices are powerful and there's power in numbers. So this is a good chance for us to work together.

Speaker 2: 18:11

Lisa, we are so fortunate to have you in the role that you're in, in Wisconsin, as a family caregiver advocating on behalf of people with disabilities and older adults and other family caregivers. I really thank you for that.

Speaker 3: 18:24

Thank you so happy to be here.

Speaker 2: 18:26

All right, Lisa, I want to make sure that folks who've been listening, know how to get ahold of you. Could you tell us how do we find the respite care association of Wisconsin?

Speaker 3: 18:34

Sure. The best place to find this is on the web. You guys can go to www that respite care w I org, or you can give us a call at six oh eight two two two zero three three. I know you guys may not have a pen handy, so I'll repeat that again. It's 6 0 8 0 3 3.

Speaker 2: 18:57

Okay. Thank you so much for joining us, Lisa.

Speaker 3: 19:00

This was wonderful. Thank you for having me.

Speaker 2: 19:03

All right. Thank you to our listeners. Make sure you think a family caregiver this month very important, and please be sure to like share and subscribe until next time

Speaker 1: 19:12

Today's episode of the arc experience was brought to you by the arc Wisconsin, the state's oldest advocacy organization for people with intellectual developmental disabilities and their families it's funded in part by the Wisconsin board for people with developmental disabilities. Our theme music called species is the property of[inaudible] and cannot be copied or distributed without permission. It was produced by Eleanor Cheetham, a composer and artist with autism.