Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information support and tools to advocate with their brothers and sisters and to promote the issues important to us and our entire families. Hello, and welcome to another episode of the sibling Leadership Network podcast. Today, we will be discussing future planning with the director of family and sibling initiatives for the Arc of the United States, Liz, thank you so much for taking the time to speak with us today.

Of course, good to meet you, Chris. And thank you, everyone for joining us today. I'm excited.

Awesome. I'll go ahead and just dive right in. Liz, can you tell us how long you've been doing this work? Tell us about your journey in this field. And what led you to working with families and siblings through the future planning process?

Sure. So as a sibling, I've been connected to the disability world for 35 years now. My sister crystal is about 36. Now. And professionally, I've been at the arc now for seven years. As the director of family and sibling initiatives, my work focuses on individual and family support. So programs such as our Center for future planning, and our health programs, and my sibling experience is what brought me to the arc of the United States on specifically the work around our Center for future planning. When I came to the ark, we just had a grant agreement. So I've been part of the team since day one. And it's been a great journey to see that program grow over the years. My journey, you know, as you know, going back to sort of the personal side of disability. Um, you know, my journey started when I was growing up as a kid, my parents used to say, You know that I would play a large role as a caregiver to my sister crystal, you know, that we had those conversations when I was very young. And of course, I was completely on board. So we had the what I like to say the Liz will take care of crystal plan. But I didn't know anything beyond that my father passed away about 16 years ago. And I quickly learned that there were no details to the lives will take care of crystal clear. I mean, my parents had a will in place, but they got really bad advice from their attorney that they should that my sister should be disinherited, which we all know is very old school advice. So at the time, also Krystal was in transition, um, she was in transition school and wasn't connected to services in California. That's where I'm originally from, and we're crystal and my family still resides. And so with the help of her teachers, I was able to navigate the service system in California, and get crystal started on that process. With the Regional Center, which is the service system in California, the group of case managers. And so today, Crystal on she has been going to a day program and vault, you know, working as on a volunteer basis, part time with the senior center, she's really loved that it took some time to find the right spot for her on, you know, with COVID, she's been home. But she's still been connected to the day program on kind of making her own schedule at home, like all of us. And she's very much looking forward now that she's fully vaccinated, still trying to figure out what transition is going to look like and if the job sites still going to be available. So we're taking it day by day, but crystal, you know, I'm going to actually see her on my mom next week. We haven't seen each other since Thanksgiving. 2019. So I'm really excited for some quality time with her and my mom next week.

Nice. Very cool. Yeah, I hope it's a good time. Thank you for sharing, of course. Um, so how would you personally define the future planning process?

So future planning is basically making sure that there's a plan in place for a person, disability or not like we all have plans, right. Like, we've all been planning for life since day one. But people with disabilities, it's really important that we make sure we have these conversations. And we're identifying the natural supports and the supports in the service system, for the person to live as independently as possible in the community, and with their center with their wishes at the center of the plan. The process is ongoing, it's a team effort. And so it's important that a future plan not only identifies the supports, but just also identifies the person's history. So medical education, health. And then you know, it's it's an ongoing process. And so, what I like to say it's something that we all need throughout all life stages. But when there is that transition in caregiving, that's very important to have this plan in place.

Definitely. Okay. Um, how often do you get emails or phone calls? From siblings who are seeking information on how they can plan to provide for their siblings with disabilities, and how do you start them down the right path.

So we definitely get requests from siblings for information on a weekly basis, you know, it will vary. We also at the ark, I support our sibling Council on our sibling sort of outreach. So we have a quarterly newsletter that goes out. And typically we see an uptick in sibling requests when we receive when we send out that newsletter. So various, but I have seen on a weekly basis, we at least get a couple. And so we have stuff at the ark that specialize in INR requests, and they have the knowledge to direct siblings to various resources. So if it's, you know, request can vary from, you know, I'm in an urgent situation, my, you know, parent just passed away, or my siblings in another state, I don't know what to do. So we, we classify those as the urgent needs. And then you have other requests that are you know, I'm starting to think about this. I'm trying to gather information. So these information, gathering requests, and then there's everything in between. So our staff has the knowledge to direct siblings to the arc center for future planning website, which is future planning dot the arc.org, as well as you know, the various state and local information that they need to navigate them. And we don't want to overwhelm people on so it's, you know, it's a tricky situation, but we want to make sure that we direct them to appropriate resources.

Absolutely. And to any listeners who aren't already familiar, the newsletter is called sibling scene, and you can sign up at the arc.org. Correct?

Yeah, please do. We again, send it on a quarterly basis. Don't try to spam your inbox too much. But we definitely have a lot of great content on there for siblings, we're very mindful about making sure that the content is very directed at siblings.

Yeah, I'm signed up myself, I always find it very informative. So thank you. Oh, great, great to hear that. So one of the hardest parts of future planning as a sibling is engaging our parents or other family members to buy in and participate in this process? Do you experience? Do you have experience with family members who are resistant to the need for future planning and families? And if so, how do you handle that?

Well, I definitely have my own experience. Because, you know, after my father passed away, my mom was very resistant about just like moving forward with the details of the conversation. So that's been very challenging the last 16 years, I've also met siblings that have also shared the same experience within their own families. And then on the flip side, you know, there are a lot of siblings who don't want to play a role. And so I think, as families, and as siblings, we just have to respect whatever involvement family members want, and also making sure that the the individual with the disability wants everyone involved. You know, in my family situation, like I met, like I mentioned, it's just an a very emotional topic. And it's not that my mom doesn't want to plan, it's that she's the one talk about the details, because she just want to think about the day that she's not around. And I think a lot of your listeners can relate to that we're all you know, she's not in our heads. Yes. And, you know, for us, and my experience, knowledge is power. So I'm, in my family and the experiences of others, I've seen that, you know, gathering resources really helps those conversations move forward. And then also sharing the experience of other families about future planning on, you know, has helped, like, in my family, personally, with my mom, it's helped her knowing, okay, we aren't the only one in this boat alone. And just, you know, kind of sharing the story of, well, this is what happened when there was no plan in place. Do you want to do you want to leave me in crystal with this type of situation? Or, also, this is how this family overcame the barrier, and kind of having those two scenarios along with knowledge and then also other family members that might be able to help because sometimes, you know, family dynamics and immediate families can get a little tricky. So, you know, seeking out my husband, you know, he's been very helpful in kind of being the mediator and making sure that you know, the knowledge that we have a she has the knowledge needed to like, understand why we need to move forward with the details.

Yeah, definitely. That makes sense. So in regards to Parents parents get to learn about the whole services system over the lifetime of their child with a disability. However, siblings often have to learn the systems very quickly at an older age, when they realize, much like you had mentioned that there is no future plan or that there's future plans missing details for their sibling with a disability, what advice would you have to any sibling just starting their future planning journey.

So I would definitely say get connected to resources in the disability community and with organizations, whether it be on the state, local, or national level. And then also with the permission of your sub with a disability start to develop those relationships. If you're an adult sibling, especially develop those relationships with service providers, or if educators case manager anyone who's involved in their siblings life. I'm very involved with crystals service coordination, you know, I have a relationship with the case manager at the regional center, I'm part of the ISP meetings, you know, the day program also has my information and we communicate. And then also the doctors, you know, it you know, with crystals permissions, so, I provide sort of that check and support from afar, because I live in Virginia, and my family's in California. So, you know, there's also a challenge with being in another state and also in the past year and a half, we've all experienced that challenge of not seeing families, technology, the beauty of technology has been that we are able to stay connected. Um, so my the past 20 years that I've lived out here, I've used technology as a way to stay connected with my sister and my family. And, you know, English is not my mom's first language. She's from Guatemala originally. And so I often, you know, either share, my sister will explain to me what was explained in a meeting or on a phone call. And then I often have to kind of follow up with that individual service provider case manager, and make sure that I'm clear about the details. And, you know, follow up with any questions that were a little gray or blurry. So those are just some some nuances that get missed, that I make sure that I'm very firm about so we can have. I'm all you know, I'm the details person. So I want to make sure that we're all clear about moving forward, and that everyone has the understanding about how we're going to move forward with something. And then also, you know, make sure you're you have some type of support network, whether it's formal or informal. So like the sibling Leadership Network, you know, there's another group called sip strong, are awesome if you, I have a lot of friends who are sibs, and it's just really important to talk about it. Or if you even need professional help seeking the help of a therapist, there's, there's no shame in asking for help. So as important as it is to get connected to resources, it's also important to have that support network to rely on to just, you know, kind of vent.

Absolutely, yeah, self care has been a very hot topic this year with COVID. And everything going on amongst siblings, so. So in the future planning process, the financial aspect of future planning goes hand in hand with the legal aspect and can be just as daunting to any sibling who is not currently working in the field or just familiar with it at all. What advice and or resources do you recommend for any of these siblings.

So similar advice to what I just mentioned, now, it's get connected to their resources with, you know, seeking out the information from disability organizations on the state, local or national level. And then, of course, with the permission of your sibling developing relationships with those professionals. On the ark center for future planning, future planning Doc, the ark.org has various resources on all of these topics on all this, what we consider the six elements of future planning, we have videos, plain language documents, and most of the resources that we have available on our website are also available in Spanish. We have a Spanish web web page. And you know, it's important to seek out information about the financial and legal aspects. And although you know, many financial and legal professionals are skilled in their, you know, realm, I'm not an attorney or financial advisor by profession, so I trust them but I also you know, it's sort of like that trust but verify, um, you must verify because they might know certain aspect of it, but maybe they're not specifically skilled around special needs planning about you know, special needs trust pool trust ABLE accounts. supported decision making all the different levels of guardianship or not guardianship, but well guardianship, but all the different levels of supporting an individual formally and informally. A lot of professionals immediately go to guardianship. So it's good to know what the other options are, in addition to guardianship,

absolutely, thank you. So while services coordination looks different in almost every state, what similarities are there that siblings can leverage to make sure their siblings with a disability are getting the best out of the system,

I would definitely say start to learn more about future planning, I'm going to the Center for future planning website on future planning dot the ark.org we have a great sort of general framework of what should be included in a plan. And it's, you know, very general in nature, but that it's a great way to just get started on. And it's, it's a very comprehensive website, and you don't have to go to the website and read it in one day, you can go and pick certain topics, look at certain resources, kind of start to navigate it, you know, at your own leisure, um, and then it's also making sure that I'm on the website, we also kind of provide the advice of how to seek out information on the state and local level. And then another sort of, I think this knowledge is very, very important for any sibling, it's knowing that Medicaid funds home and community based services. So because Medicaid is that funding source, just having that knowledge, that's the basic foundation of knowing why services look different in each state. So once you start to learn that, I think that's a great way for siblings to start figuring out where to go next. And then also, I'll make a plug here about the arcs website, visit the arc.org. To learn more about what we're what our organization is doing around policy and advocacy around home and community based services, I think your listeners would be very interested in learning more, and we have some action steps that people can take. And I think a big takeaway here is like everyone is an advocate, everyone has a story. And so in, in order for disability rights are for services to become more available. It's it's very important for people to have this knowledge and to advocate so there can be changed eventually.

Absolutely. That's a great point. I've personally used the arc center for future planning website in my own future planning process. And I've found it to be very thorough, so no, good. Yeah, I'm happy to hear that. Yeah. Like you said, though, it's definitely something you want to take day by day and not try to get in one big one big time.

Yeah, and I think all of us, most of us, I'm speaking for myself, but a lot of other siblings that I met were very type A, and we want to get it done. And we want to, and I think it comes out of a good place. But we also want to make sure that we're not going into, you know, information overload, as well.

Yeah, burnout is easy to do. So, future planning resources are sometimes difficult to access or even know that they exist. Historically, this can be especially true for the bipoc community, can you speak to any efforts that you know of, to have more outreach into communities of color, and how any of our listeners can access them?

Sure. I mean, this is a really important sort of question that you raised here. I'm a person of color. I'm a Latina, my mom, you know, as I mentioned, from Guatemala, so when I came to the arc, you know, I just thought it's very important that when we develop these resources that we eventually develop them in Spanish, and in a way that's culturally competent. We've been very intentional, intentional about creating materials and also delivering that information in person in language. So it's not just you know, straight up translating information, but making sure that they are delivered in a way that's culturally competent, and also that we are trying to understand people's point of view and their culture and then their cultures views about disability because, you know, we all have our cultures have different views about disability. And so I think education is key for communities of color. When I present it, I do various presentations to caregivers in English and Spanish. When I present to Spanish speaking community, you know, I know where they're coming from, you know, I, as an individual who's a person of color, my mom's from Guatemala and English was her second language. I know that disability in our countries are a little bit it's a little bit different, the points of view and also what's available. So it's really important to listen to listen and lead with empathy and then start to educate The big message I hear from groups and caregivers that I've presented to in the past is that even when information is available in their language, and so let's say, you know, in this example, in Spanish, it's still confusing, because there's still a lot of jargon. And it's, we're heading straight into disability service speaking. And even as assembly if you if English is your first language, it just feels like jargon, right? Like we're learning this whole new language to your point earlier. So then that becomes another barrier. So we have to make sure that we're educating communities of color about their rights to access to services and programs. Because you know, there are a lot of parents that come from communities of color that don't know what their rights are, and don't know what they can access. So it's really important that we start there and then start to deliver the information around future planning and connecting them to groups.

Absolutely. Oh, one initiative that comes to mind is the bipoc roundtables that the SLN has partnered with the sibling support project and special needs siblings to promote with the bipoc community. You can check that out on the sibling support projects, website, sibling support.org. So the last question I want to go with is future planning process. As we know, and we've discussed, it's ongoing, and it can be overwhelming and daunting. What advice or words of encouragement might you have to siblings who are maybe still figuring everything out and experiencing experiencing some burnout? Or considering not completing their siblings future plan at all?

Well, you're not alone. It's, it's overwhelming. You know, there's family dynamics, a lot of emotions. And then also getting services. Every state has a different service system, and there's waiting lists. So there's a lot of things you can't control. So focus on what you can control, and take it step by step. And don't expect for this, you know, to be one and done, it's ongoing. And I think the greatest lesson that I've learned has been to lean on others for support, and it's okay to ask for help. I know when I started on this journey, especially after my father passed away, it was it was difficult, um, and I thought I could do it all on my own because I had the Superwoman mentality. But we're all humans, right? So take time for yourself. And you know, you mentioned before, self care has been a big topic for everyone, during COVID, but even before COVID I think as siblings, we all that's just been a topic that's been around I know, at SLM, that's when I've attended conferences in the past. That's been a topic that comes up. So take time for yourself to protect yourself, protect your peace. I've experienced burnout many times. And taking a timeout has been really important for my emotional and mental health. I'm fortunate to have a very supportive spouse who gently reminds me when it's time to consider taking a break. And you know, my my husband, Brian has been a great partner in this journey since day one. So you know, he's been a great game to my Yang. And I'm also fortunate to have a supportive network of friends and friends who are also sibs that I can just vent to. So there are times where my husband wants to listen to me, but he knows like, he doesn't get it. You know, he's a seven law, which there's also an important role as a civil law, there are many times overlooked. So I want to give a shout out to all the seven laws who are there who are great support networks, not just for their spouses, but also for their son in law who has a disability. So there are times where he's like, I don't really know what to say. So he's reached out to certain friends who are sibs, and say, could you help us out and I and you know, I can vent to them and they totally get it. So I think it's very important to lean on others for support and, and know that there's someone out there that's going through the same experience has lived it. Um, so it's, we're all in this together.

Absolutely, yeah. I'm just gonna follow up with another plug there. for connecting with other sibs, there is signet, which is a Facebook group for adult sibs. And it's a really good resource. If you don't already have a chapter of the sibling Leadership Network in your state. It's a great way to connect and make new friends if you don't already know another sibling.

Yeah, and just one more thing that you know, I know that we're always looking to the future, but it's also just remember to enjoy the present with your siblings. Like, next week, I'm going to be in town for like five or six days with my family and I at first had this long agenda about things I wanted to discuss. And I'm like, you know what, I haven't seen them in almost two years. I just need to enjoy The present moment. So I know we're always looking ahead, and it's so important, but also enjoy the present.

Yeah, that's amazing advice, especially as we're all reconnecting with our families again, after the pandemic. Thank you. Definitely, of course. And I just want to add in here to for any listeners, you can find these resources that Liz has mentioned and many more in the future planning section of the adult resources page on our homepage, sibling leadership.org. And, yeah, again, thank you so much, Liz for joining us today. It has been an absolute pleasure,

of course, and thank you to everyone listening out there and it's always great to work with all of you with assembling Leadership Network.

Thank you. find resources, tools and information about the sibling experience on sibling leadership dot board. The sibling Leadership Network is a nonprofit and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.

Transcribed by https://otter.ai