The Not-So-Scary Future (Future Planning with Liz)

Today we are talking about something that’s hard for a lot of people: Thinking about the future. We don’t know what to expect – and frankly, the unknown can be a little scary – especially if you are a person with a disability or a family member who relies on supports to build and live a good life.  

In this episode we meet Liz Mahar who is sharing a wake up call across the country about future planning. She says it's not only possible but – it is necessary. 

Liz is the Director of Family and Sibling Initiatives at The Arc of the United States and she is a leader within the Center for Future Planning. However, her greatest experience might come as sister to Crystal, who has Down syndrome. 

Learn more about future planning: 
https://arcwi.org/2017/10/05/part-wisconsin-future-planning-network/

The Center for Future Planning: https://futureplanning.thearc.org/?_ga=2.182646630.1397700017.1636577291-193680245.1590781332

Letter of Intent: https://arcwi.org/content/uploads/sites/17/2017/12/FINAL-CFP-LOI-on-cfp-website.pdf

Wisconsin Professionals to Help: https://futureplanning.thearc.org/professionals?utf8=%E2%9C%93&profession=&state=Wisconsin

Transcript

Speaker 1: 0:05

Welcome to the arc experience, 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: 0:22

Hello and welcome to the arc experience podcast. I'm your host, Lisa pew from the arc Wisconsin. Today. We're talking about something that's hard for a lot of people thinking about the future. We don't know what to expect, and frankly, it can be a little scary, especially if you're a person with a disability or a family member who relies on supports to build and live a good life. But today's guest Liz Muhar is sharing a wake up call across the country about future planning. She says that not only is future planning possible, but it is essential. Liz is the director of family and sibling initiatives at the arc of the United States. And she is a leader within the center for future planning. However, her greatest experience, I think she'd say might come as sister to crystal who has down syndrome. Isn't that right, Liz?

Speaker 3: 1:17

Yes. That's correct.

Speaker 2: 1:19

Well, thanks for joining us, Liz. We want to dive right in. Can you tell us what is future planning? Give us kind of the one-on-one.

Speaker 3: 1:28

Sure. Lisa, thank you so much for having me today. I'm happy to be here. Um, so future planning is basically creating a guide for an individual with the disability so they can lead a happy and independent life. Um, that's no different than you and I making a plan for our future. Um, but it's, uh, it's very important for people with disabilities because they have someone, a family member or a trusted friends that supports them in their day-to-day life. Um, it's important that this guide, this a life plan, um, documents, the person's daily routines, um, their health background, education backgrounds, um, things that are important to them, holiday traditions. Um, and so caregivers and individuals that support the person with the disability, um, on a regular basis, we as caregivers have this information in our heads, but if it's not documented, then when the caregiver can't provide that level of support, then the person who takes over and, and as, and when I say take over, takes over with supporting the individual, um, that information kind of gets lost in the, in the translation. So, um, it's so essential for, I think, for anyone to have that plan, but, um, for people with disabilities, um, it's critical that everything is documented.

Speaker 2: 2:50

Sure. That that makes a lot of sense. And, you know, as I mentioned in your introduction, you're a family member and you have your sister crystal. I'm wondering if you could tell us a little bit about what future planning looks like in your family's life and why it's kind of personally important to you.

Speaker 3: 3:09

So when I was growing up, um, my parents would always tell me that, you know, Liz, you're going to help take care of crystal when you're both older, when you're adults. And I said, you know, absolutely. Um, my father passed away 16 years ago and I was very, um, helpful to my mom and my sister. And I sort of helped them with the transition. And I asked my mom, oh, we always talked about, you know, me helping crystal. Um, and at that point, crystal was in transition. Um, she had a year left of school and she wasn't receiving services and supports, um, besides what she was receiving at public school. And I said, okay, so what are the details to that plan? And my mom said, oh, you're going to help take care of her. And I said, oh, okay. And then I quickly, you know, looked through the will and look that she was disinherited because that's information that the attorney had given them that's information, that's very old school. Um, and so then I quickly started to learn that there were no details to the Liz will take care of crystal plan. Um, so I think it's so essential for families across the country, siblings like myself, um, to help guide those conversations and to make sure that, um, everyone is going to have different viewpoints. Um, and I know certainly in my family, we all have, we have some different viewpoints, but at the end of the day, um, it's important that crystal wishes and desires and needs are being met, um, and that she it's ultimately her life and her plan. Um, so, uh, you know, it's so important for these conversations to start sooner rather than later, um, because it, it brings a lot of peace of mind also for caregivers. Um, I know, um, there's a lot of barriers to future planning and like missing a block of information misinformation also. So lack of information, there's not a lot of availability of appropriate services. I know we've been trying to figure out once my mom can't help my sister, my sister, crystal lives at home with my mom when crystal, it gets to the point where my mom can help support her. Is she gonna live in her own in the current apartment that they live in? Um, she's going to live at a group home. Like, what is that gonna look like? Um, so we've done some group home tours and we haven't really quite found a setting that would be appropriate for her and that she would be happy with and comfortable with. Um, so that's something that we're still struggling through and there's other pieces like the independent living skills, um, that I think my mom likes to do a lot of stuff at home for crystal. Um, so, um, it's hard for me to communicate to her that it's important that she lets crystal do more at home. Um, but crystal is pretty independent. She attends a day program and works part-time at a senior center. Um, so I think for my mom, one of the barriers has been the emotional side of things and that that's a large barrier in itself. Um, so, you know, I think it's just on my end trying to do as much as I can as the sibling who lives across country. My sister's in California, living at home with my mom where I grew up and I'm out here in Virginia, right outside of DC. So there's only so much I can control. Um, and so it's great that I have a lot of resources and I can start, you know, putting together a plan as much as I know through the work that I do. Um, so when that day comes, crystal has everything that she needs.

Speaker 2: 6:58

You know, what I really like most about your story is that even though you are so far away, like literally across the country, you could almost not be further in living in this country. You are still probably more so than most siblings kind of shoulder to shoulder with your mom in at least thinking about the plan and helping crystal to get some experiences that are going to move her closer to what her future can look like after mom is no longer there, because that's the reality, right? I know some statistics in Wisconsin about 75% of adults with intellectual and developmental disabilities live at home with their parents. Um, but that about a quarter of those parents right now are already over age 60. So that that's a lot of families that probably really should be doing some of the exploration that you're doing right now with your mom. And with crystal, you mentioned a little bit about some of the, you know, emotional sort of reservations that your own mom has, but in your years of doing training around future planning, what are other roadblocks, why, why are families not really getting future planning done? Would you say?

Speaker 3: 8:15

I think, um, families sometimes have a, uh, they have a experience with the system that was not such a great one. Um, or there's a lack of services, home and community based services. As we know the services and supports for individuals with disabilities are not mandatory. They're optional. So meaning that, um, if you live in a state where, um, there are a few services, then you're going to be put on a waiting list. Um, and, um, institutional care I think is what's mandatory, but home and community-based services, isn't, it's an old model and that's why we're advocating. And so that's why I think now that I've been very involved with my sister and now working at the arc, I, as a family member, see the connection. And I think it's important for family members to see the connection between what we're doing day to day to help plan for the future. But if those services and supports aren't available in the community, we have to advocate for them. Um, so, you know, with my experience, um, aside from the emotional, there's the, you know, the, the what's available in each state also, um, and this comes as a surprise to a lot of caregivers that live in other states from their loved one with a disability, but let's say crystal, you know, my mom passes away and crystal decides to live closer to me and my husband here in Virginia, her the day program, the respite care, the job coach, those services that she gets to make her successful on a day-to-day basis at what she does at work. And through her day program, those services don't follow her here in Virginia, she would have to be added onto a waiting list to get those services. So those services aren't portable. They don't follow her. So that's, I think, um, when working with caregivers, when I've done presentations or a siblings, that's a kind of a aha moment. And I actually didn't know that until I came to the arc. Um, so it doesn't matter what your education level is. You can be a college graduate and still not know, um, because every state service system has every state has a different service system. Um, so it's important that we start to, um, as caregivers figure out what's available, and if there's going to be a move in the future, that's what the individual wants. What can get done ahead of time to sort of plan for that transition to another state.

Speaker 2: 10:47

Yeah, that service system is so complicated. Think about all the alphabet soup of acronyms and programming that parents get to know throughout a lifetime of their loved ones with disabilities. I EEP ISP, DVR, whatever, and sorry for the background noise here. I've got a lot of hammering happening if you're hearing that, but I, but like to your point of bringing in siblings and other people that can be in that circle of support earlier is not only going to just help them know what their role is in the plan, but help to ease them into that really complicated system to figure out how to keep things going. Hey, Liz, well, great conversation so much more to talk about. We're going to take a little break to hear from our sponsor and we'll be right back

Speaker 1: 11:38

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: 11:53

All right, thanks Liz, for hanging in there, we want to keep our conversation going. I wanted to ask you, you know, talked a little bit about the roadblocks. Are there also some of the biggest mistakes that families maybe make? How can we talk to people about how to avoid those sorts of mistakes?

Speaker 3: 12:13

I think there's a lot of, um, advice that's given out that's very old school. Um, when I say that I mentioned the example of my, um, parents, when they created their will, they disinherited my sister. Um, and that was the advice that was given to them from their attorney there and their estate planners. So, um, it's trying, you know, getting this information from, you know, the arc or another disability organization, the arc, um, our center for future planning. We have an online resource center with, uh, sort of what's included in a future plan. Um, our Reese, our online resources is, is future planning dot the arc.org. Um, and so I, you know, I think it's just important for, um, caregivers to make sure that when they are making decisions, um, but they are making that decision based on information that's sort of up to date. And also, um, I also can think of guardianship when I mentioned this, because another sort of, I would think outdated, um, thinking is that every person with a disability needs a guardian, um, the guardianship is, is very restrictive. It looks different every state, um, but you're essentially taking away the rights of an individual to make a decision. And there's other ways for caregivers, um, to support an individual with a disability that doesn't require guardianship and, you know, and to be in full transparency here, I am a limited guardian of my sister. Um, but you know, it's a way for us to help her make decisions. Um, but you know, when she moves to Virginia, she might not want that because the guardianship looks different in Virginia. Um, so, you know, what are our other ways for us to support her? We can get a power of attorney. We can, um, be an authorized representative for her social security or any type of public benefits that she's receiving. I know when I go to the doctor offices on in California, um, they don't even ask for the guardianship papers anymore. They just ask for her to sign a form that says that it's okay for me to receive information. So I know, um, and that might be different every state, but, um, it's important to just kind of get that information ahead of time, because I think when people, when individuals with disabilities, um, start to reach the age 18, a lot of families here to the state guardianship guardianship, um, or just outdated information. So just make sure you're as a caregiver, informing yourself through organizations in your community, um, such as the arc, um, that can provide you with information. So you can make an informed decision.

Speaker 2: 15:08

You know, I think in addition to what you just talked about related to guardianship and, um, you know, kind of outdated, uh, assumptions. One of my takeaways just in our conversation here is like, don't forget to include the siblings that you're the circle of support for your loved one, with a disability should include those siblings or other family members who really need to be brought into the plan early. Otherwise it seems like it's kind of a missed opportunity. Would you agree

Speaker 3: 15:38

Completely? Um, and you know, there are some simple, I mean, I'm very involved with my sisters. Um, just life day to day, we text twice a day and, you know, I'm part of her, her, uh, ISP meetings, annual meetings with the case manager and her job coach knows me well, not every is going to play that role and that's okay, but I think it's better to know that ahead of time, rather than make the assumption also, um, the individual with the disability may or may not feel comfortable with their sibling playing that role in my case, you know, my sister and I are very close, so I help support her. But, um, it's important for, I think parents not to make that assumption because the sibling may or may not be able or willing to, um, you know, provide that level of support. Um, now we're in the future.

Speaker 2: 16:31

Yeah. That is a, that is a really good point. A good thing to talk about now, for sure. You know, this, I can, I've worked with you on future planning trainings, and I know how passionate you are about this. What, what is your goal? What drives your passion? Why do you want more people to know about future planning?

Speaker 3: 16:52

Because I think going back to what you were saying about the alphabet soup, um, and asking me about the, the roadblocks. So my mom is from Guatemala and, um, English, isn't her first language. So I think there are a lot of families like myself and also families like, like yours, Lisa, where, um, you know, we're just, day-to-day trying to support our loved one. And we want to make sure that they have what they need, not just in the now, but in the future. And so what drives my passion is that all families have access to up-to-date information, and it doesn't matter what zip code you live in, what language you speak, that you're getting the information and breaking through sort of the alphabet soup of the disability services system. Um, and also that, um, as a family member that you feel heard and that, you know, that there are other people in your same boat, I know you and I have talked in the past about sort of our personal experiences, you as a parent and myself as a sibling. Um, so what drives my passion is I want to make sure that no matter what zip code state you live in, that you have access to the information to make those informed decisions. Um, but also that then that drives individuals to advocate for those services and supports. There's been so much progress in the disability rights movement in the last 70 years, but we've only scratched the surface. Um, and so there's still a lot of models out there that are very outdated and that don't empower people with disabilities or don't recognize the contributions that people with disabilities make. Um, so, you know, at the end of the day, it's, it's my experience and sibling and my sister that drives my passion.

Speaker 2: 18:42

Yeah. That makes total sense. Um, let's say there's somebody who's listening to us right now. That is like, gee, I know I should be doing this. I feel so overwhelmed. I don't know where to start. Is there some simple, easy, first step? Like what would you say? Like what, what's, what's one thing that they can do that, that, that can start a future planning process for someone.

Speaker 3: 19:08

So, you know, feeling overwhelmed, I can completely relate to that feeling. I would say, you know, start with the, like the pain points. So when I say that, it's like, I think about, uh, my first sort of step into future planning with my sister. And that was 16 years ago when my dad passed away and I figured out there's no details to this plan. So at that point, crystal was transitioning out of school and we didn't know what was next for her. Was she going to work? Was she going to like, what is crystal going to do? So I was, we were able to connect her to the regional center, which is the service system in California. She got a case manager and we figured out, okay, there's a day program. This is what's available. So for me, and for crystal, the first step was okay, figure out what she needs to do to get connected to the service system in California and what she needs, what do we need to do to get her to, you know, contribute to the community and to live a full and independent life now that she was, you know, graduating out of school and transitioning out of school. So when I say, you know, respond to the pain point, it's like, what's the sort of like hot button issue right now that your loved one needs. Um, so that could be, you know, someone received a large sum of money. What do you do with that? Um, there's able accounts, special needs trusts, um, or, you know, your loved one is turning 18 and people keep saying guardianship guardianship, start to read about that. So just like take a little bite out of the meal, start with a snack and then work your way up. Um, so it, it's not going to all get answered or done in one session or even in one year it's a lifelong process. Um, but definitely address sort of like the hot button, what needs to get done right now, and then, you know, sort of work your way through there.

Speaker 2: 21:08

I like that start with a snack. That's really great advice because I think you're right. If you try to eat that whole meal, it's just going to make it even more overwhelming. And there isn't there, there's no reason why you can't start with a small step, you know, and kind of speaking of that small step, I know that the arc of the United States and the center for future planning have built a lot of really great resources and tools that can help someone dive into that small step. Can you talk a little bit about where people can get more information or maybe tools that can help them?

Speaker 3: 21:41

So we have an online resource center, it's future planning dot the arc.org, and that's, um, really great first step to figuring out what needs to be included in a plan. So we have, um, just general information about what to include in the plan who's gonna, who, you know, who's, who plays a role in the future planning process. Um, we have webinars videos, plain language documents. We have a lot of our resources translated to Spanish. Um, and I'm actually very happy that, um, our webpage that we have in Spanish started to become, uh, there was just a lot of resources and we actually had to redesign it. So it's kind of a good problem to have because we started to develop more Spanish resources over the years. Um, so that Spanish webpage is going to look, um, very similar to sort of, um, some of our other pages that we have on the website. We also have a tool called the builder plan tool where people can go in to our, um, future planning website and create an account for free and start to build a plan. Um, uh, each section will take about an hour to go through, but it's like, uh, uh, you answer questions and then the system then, um, suggests a next step or what information you're missing to get to the next step. And it creates this to-do list for you. And you can share parts of the plan with individuals, um, who are part of the future planning team, because that's what it is. You're all part of the team. Um, so definitely in all of our resources are free. We have archive webinars. Um, so definitely encourage people to take a look of our, at our online resource center, future planning about the art.org and just start to look around and, you know, you may not be comfortable with creating your plan online, but we have a great resource, a template, um, the letter of intent, which is the plan, um, and people can download that and start to fill out, uh, the plan and just do a handwritten plan rather than the online.

Speaker 2: 23:53

Yeah, there, I, I totally support people going to that website, uh, center for future planning, for resources and the build, your plan tool. I think what you were talking about before was starting with that small step. Really, you can find a resource on any one of those, probably small steps to kind of get you started. I also think the letter of intent is a great kind of a simpler step to kind of use as your roadmap. One other thing that you didn't talk about that I think is really important is that the person with the disability, you talked about crystal being the center of that plan and kind of the driver of the plan. And there are also resources on there for self-advocates and videos to write Liz.

Speaker 3: 24:41

Yes, that's correct. We have a tools and resources for self-advocates. The people with disabilities absolutely are the center of the plan, they're the drivers. Um, and it's important that they are well aware of the information so they can make that informed decision.

Speaker 2: 24:59

Thank you so much for joining us, Liz, what's your last word of advice for people who have been listening to us today,

Speaker 3: 25:06

Don't be overwhelmed, um, and you know, really reach out to other people. Um, because I know that's, what's helped me is not just being informed, but, um, I have friends, uh, colleagues who are parents or siblings, uh, and it, you know, just knowing that there's, there are other people that are going through the process really helps, and also not just emotionally, but, um, also helps with helping with our own future planning process. Um, and it's okay to take a break, you know, self care, um, setting boundaries too. Um, we want to make sure that we can step away from the plan from the process if it's getting overwhelming. So that way we can come back and have fresh eyes, um, when we're making the plan.

Speaker 2: 25:59

Really great words of advice. Thank you so much for the conversation today. All the ideas about resources, I'll be putting those in the show notes for people, and thank you to our listeners for listening to the arc experience podcast today, please be sure to like share and subscribe and we'll talk to you next time.

Speaker 1: 26:19

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.