1 LIGHTLY EDITED FILE MNCCD Town Hall Forum Minnesota Consortium on Citizens with Disabilites Remote - Zoom April 29th, 2020 9:45 a.m. - 11:00 a.m. * * * * * DISCLAIMER This text is being provided in a lightly edited draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility, and this lightly edited CART file may not be a totally verbatim record of the proceedings. Nothing within this file should be duplicated, excerpted, or quoted without the express written consent of the CART captioner. Due to the live nature of the event, some names and/or terms may be misspelled, and this text may also contain phonetic attempts at sounds and words that were spoken, and environmental sounds that occurred during the event. 2 CART Provided by Megan Stumm Paradigm Reporting & Captioning, Inc. 612.339.0545 captioning-paradigm@veritext.com >> Hi, everyone, this is Alicia Munson with the ARC Minnesota, I am going to be the facilitator for the forum today. I'm so grateful to everybody that's joined us thus far. I just want to let you know that we will give it a few more minutes before we formally get started. Five minutes, so. So if you are not muted and you're not kind of sorting through sound or accessibility features right now, it would be great if you could go ahead and mute your line. And, again, we will go ahead and get started in just a few minutes. But I'm really excited to see everyone that's on the phone and on Zoom here with us already. I could hear the person that was just speaking but only very faintly. >> Okay, we're going to call. 3 >> Apparently my house is way too decorated to have a single place that I can actually use virtual background. >> No problem. So hi, again, everyone. This is Alicia Munson with the ARC Minnesota. I'm going to be your facilitator today for the forum. If you are just joining us, welcome this morning. Thank you for being here. We're going to give it just a couple more minutes before we get started. >> Good morning, Jeff. >> Good morning, sir. How are you? >> I'm good. How are you? >> Just a friendly reminder if you're not speaking or testing the accessibility functions for the meeting, please go ahead and mute yourself. 4 We're going to get started in just two minutes. >> Yeah, I literally just messaged you and then I look up and there you are. >> Oh, funny! >> Okay. Good morning, everyone. We're going to go ahead and get started. Thank you so much for joining our virtual town hall forum this morning. It is amazing to see so many members of the disability community participating in this forum. And, again, we are really grateful that you're taking the time out of your schedule to be here today and to be here and listen to some stories about the ways in which COVID-19 -- and allies statewide. So just a friendly reminder that we ask that people please mute your line if you're not speaking or if you're not testing the accessibility functions. Again, my name's Alicia Munson, I'm the public policy director for the ARC Minnesota. We are a statewide non-profit advocacy organization that works 5 [ echo ] -- people with intellectual and developmental disabilities. We are a proud member of the Minnesota Consortium for Citizens with Disabilities that is hosting this forum today. MNCCD is a statewide coalition of disability advocates, service providers, self-advocates and allies from across the state of Minnesota. And we are really working to advance the message that we are essential. Our community is essential and our needs must be addressed throughout this COVID-19 pandemic. We are so grateful that staff and members of the -- delegation are joining us today to listen to the ways that this pandemic has impacted all of us. So here's just kind of a high-level overview of how the forum is going to go today. There is a captioning service that's available that you can select and utilize, if that's an accessible feature for you. We are here on Zoom, which has the video conference capability as well as a phone call option. We're also livestreaming on Facebook, so just want to say hi to everybody that's watching along on the MNCCD Facebook page. 6 We are going to very briefly ask staff and any members of the congressional delegation to introduce themselves and we'll go by congressional district leading up to the members of our state -- (indiscernible) and then we're going to have a very brief introduction and overview from Jillian Nelson, who is also representing the Autism Society and is a member of the Consortium. And then we will get into some personal stories. We have testifiers lined up this morning from each of the congressional districts throughout the state and they're going to share some high level stories about issues impacting their lives. And then at the very end we'd love to have some very brief comments in response from the staff and members of our congressional delegation that are joining us today. So I think with that it would be great to get started with introductions from our staff and members. So is Carol Stevenson from Representative Hagedorn's office with us this morning? Is there anyone with us from Representative Hagedorn's district with us this morning? I believe that Congresswoman Angie Craig is actually on the line with us today and I wanted to give her an opportunity to introduce herself. 7 Congresswoman Craig, thank you so much for spending your morning with us! >> Oh, thank you so much, Alicia, I am really truly honored to join you this morning. I'll only be able to stay for about half of your town hall but I do have my congressional staffer Morris Allen on the call and you'll be able to stay throughout. Thank you to everyone for sharing your stories. This is exactly what members of congress and our staff need to see and hear is real world impact of our constituents, and I know that right now everyone is being asked to make changes to your daily life and thank you so much for all the work that you're doing, and I know that the delegation is going to continue to work together. Social, physical distancing doesn't have to mean social isolation, so let's make sure that we're focused on helping each other through this very difficult time. One of the things that I have been focused on during COVID-19 is to make sure that families have the resources to care for their loved ones, and that means, I don't know if some of you saw that the Senate bill that was passed, the C AR ES Act and the direct 8 assistance to families actually left out families of adult disabled dependent children. It did not include the $500 rebait for adult dependent children. And it also, by the way, didn't include a rebait for 17 and 18-year-olds, and immediately I saw this issue with the Senate bill and it sailed through the House without any members sort of making a thing of this, and so I introduced a bill and hopefully we'll be able to correct that in the next C AR ES 4.0 or whatever we want to call the next bill. I'm advocating to make it retro active so that each of you with adult disabled children get the rebate that you should have received in the first place. It also means making sure that students, like one of my sons, I have four boys, one of my sons is on the spectrum, one of my sons has learning disabilities, and so I am a member of Congress, but most importantly with you today I'm an IEP mom. And three of our four boys have graduated from high school, one is still in high school, but I know how each of you advocate for your children and for other children, and I want to make sure that as a member of Congress I do the same thing. And with the opportunity to work with folks like 9 Congressmen Pete Stauber in the eighth congressional district we're working together to fully fund IDEA, we both have sons with special needs and so we've made it really a point to show that we can work together across the aisle. And so the C AR ES act included $30 billion to support our students and educators and I know that distance learning, if you still have a child in school is often more difficult when that child has special needs. So thank you to all of you for just advocating. You can count on me to make sure that folks who are living with a disability are represented in our COVID-19 packages moving forward, and I now see my good friend and colleague Pete Stauber, you gotta go last because -- I'll stop talking and just say it's an honor to represent the second congressional district here in Minnesota. >> Thank you so much, Congresswoman, again. We are so grateful for a bit of your time this morning and for all the work that you're doing out in Washington, D.C. on our behalf. Thank you to Morris for being here as well. I did note that Carol Stevenson from Congressman Hagedorn is on. 10 I did want to give her an opportunity, did you want to introduce yourself, Carol and say hello to everyone here in may be having some challenges with her audio, but again, thank you for being here. Is Meg Montgomery from Congressman Philips office on the line? >> Yeah, I'm here from Congressman Philips' office, >> Is Patrick from Congresswoman McCullough's office on the line with us this morning? >> Yeah, hi. Thank you guys so much for having us. Just to reiterate what my colleague from Phillips' office just said, I know she's a huge advocate for what you guys do and I'll be happy to pass any stories I hear today on to her. >> Thank you. And was anyone from Congresswoman Omar's office able to join us? There were some scheduling conflicts in their calendars, but wondering if anyone was able to get on? Okay. And then I believe Bobby Benson from Congressman 11 Emmer's office is on? >> Yeah, thank you for the opportunity to participate today. Congressman Emmers wishes he could be here today but had a conflict. I want to say thank you to you Alicia for putting this on, thank you to heather from the epilepsy foundation, she's such a strong advocate. Thank you for inviting me. Most of thank you to everyone for taking the time out of your schedules to let us know some of your stories and what you have going on. One of the things Congressman Emmers always says we are Minnesota's sixth district of customer service. As you guys share your stores or anything else I encourage you to reach out to our office, but other than that I'm just going to listen to what you guys have to say right now. >> Thank you. And is Rebecca on from Congressman Peterson's office? >> Yes, good morning. 12 >> Hi, thank you so much for being here. >> Thank you so much for inviting me to join, unfortunately congressman Peterson couldn't make it but I look forward to being with you this morning. >> Great, thank you. And Congressman Stauber, thank you so much for joining. >> Thank you, Alicia. As my good friend Angie Craig talked about, those of you who live with children with special needs, we have to look at their abilities and I think it's important that we recognize the importance of everyone in our society and our special needs children and those with disabilities are extremely important part of our community and the fabric of our nation. And I can't stay the entire time, I've got to get on another conference call, but we have a very capable Allie Esau in my office who will be with us and giving me the stories. I would say just I'm excited to be here and be an advocate. As you know, Angie mentioned IDEA Act and that came about on a freshman orientation trip where Angie and I 13 were on a train and we were talking about families and we talked about that we are both blessed with special needs children and why don't we fund that and to make sure that the federal government lives up to its promise that it made every school district and we gave the federal government a 10-year runway to get to that 40% and both, I know both Representative Craig and I are passionately pushing this in the House of Representatives. For those of you who don't know, I cosponsored the Families C AR ES act and this expands the child tax credit for families with permanent or totally disabled dependents who take care of that individual. And I think that's important. And we recognize that often × many in our nation's capital, even in St. Paul, they forget the importance of disability community and what they can offer this country. We should never forget that and each and every one of you, Allie is going to talk about or tell me about the stories. I'm really excited to hear about the stories and what have you. But I will say with that the C AR ES package alone, we have, as Representative Craig said, there's got to be 14 more for our disability community. But what was in there was 85 million for -- centers, 50 million for aging and Disability Resource Centers, -- for section 8 and housing for those with disabilities. And 50 billion for local agencies to provide the technology and the adaptive equipment to meet the needs for those students under that IEP or under the IDEA ability or IEP rather. I think it's important that your advocacy is, I am so proud of your advocacy and I'm happy to be a part of that. I want you to know that Minnesota's eighth congressional district is, the constituent services is our number one priority and you are part of our priority, so, Alicia, thanks for having me and I apologize I can't stay but I wanted to say hi to everyone and I appreciate what you bring to our everyday lives because you matter and are important to our community. So with that, Allie Esau from my office will be staying on and I will be departing for another virtual meeting. So take care, all, and I know you're going to have a great conference here. Bye-bye. 15 >> Thank you. So Allie, thank you for being here. We are really grateful that the congressman was able to say hello and Groton this morning. We are really grateful for everything he's doing on our behalf out in Washington, D.C., it's amazing that we have Congresswoman Craig and Congressman Stauber who really understand the disability the community. Thank you, Allie, for being here this morning. >> Yeah, absolutely, can't wait to here from you guys personally, so thanks. >> And I believe Alicia malon from Senator Klobuchar's office this morning. Is Alissa on the line from Senator Klobuchar's office? Well, we hope that she will join us soon. And then is Aaron Kervers from Senator Smith's office on the line? >> Hi! , hi, this is Erin from Senator Smith's office. Just to reiterate what everyone else has said, looking forward to listening to what you all have to share and 16 Senator Smith unfortunately couldn't join today but really values, you know, your experiences and that is really what informs the work that he does, so we are looking forward to hearing more and I will be reporting that back. Thank you. >> Thank you so much for your time this morning, Erin. So at this point we do want to transition into our stories. As I mentioned, we'll have kind of a high level overview from Jillian Nelson who's a very powerful advocate with the Autism Society and then we have identified speakers from each of the congressional districts. If we have any time at the end we would love to sneak in a couple of other stories, but we'll just have to see how we go with time. Jillian, I'm going to turn it over to you. >> I should un-mute myself so it goes a lot better. Thank you all so much for joining us today. I'm Jillian Nelson, community resource and policy advocate for the Autism Society of Minnesota, I'm also an autistic adult. 17 I've been contemplating for several days what to say to you this morning on open up this discussion on the state of the disability community in the midst of this pandemic. The reality is is that right now we're existing in a place of fear. Yesterday I took a call from a dear friend begging for permission to sign a release of information for me. She was calling me from the back of a cab on her way to the ER to be tested for covid. The fact that she needed to preemptively make sure that someone with extensive disability rights knowledge was willing to fight for her equality in health care and for her life was a moment that crushed my heart and strengthened my resolve to keep working to make sure that these voices are listened to. We gather here to rally -- for legislation such as the heroes fund and coronavirus -- fund for persons with disabilities. Because at home, we're afraid. Imagine what would happen inside a hospital, but also what our children's educations will look like. If we're able to access services and have PCAs and direct support professionals show up when we need them am. 18 If the programs we rely on for meaningful life, most of which are non-profits will, survive this. And if the people making choices to impact our human rights and wellness remember who we are and what our lives look like. As you were designing the fourth covid bill, please remember that we are essential in this community and that the lives we live have meaning. And right now we're desperately rallying in hope that you can ease some of the fear. Remember that the federal support during this time of crisis will impact the lives of our community long after the world is back to normal. We have brought together Minnesotans from across the state to share their experiences during this pandemic. But remember this is a glimpse at the challenges that our communities are facing in addition to the rest of the burdens that this crisis is placing on everyone. We thank you from the bottom of our hearts for your attention and compassion as we share these stories. >> Thank you so much, Jillian. The first speaker that we have this morning from the first congressional district is Karen Larson. Karen, are you here with us this morning? 19 >> Yep, I got to figure out how to take off mute. >> You got it, we can hear you loud and clear. >> Oh, great. Thank you very much for having me. Jillian, you're a hard act to follow but I'm going to try. My name is Karen Larson. My son Andrew is 35 years old, he has a big huge smile, a big heart and works very hard at everything he does. He also happens to have some multiple disabilities. Andrew uses facial expressions and vocalizations to express his needs, wants, and he does so, does not use words to communicate. Andrew lives in our family home with myself and my husband Tim, he has two longterm staff that work with him every day and know him very, very well. They know and understand the way he shares his thoughts, feelings, needs, and wants. During this time of covid Andrew is safe in our home and is practicing strict social distancing with everyone who does not -- everyone who comes into our home, he has some lung problems, which scares us to 20 death because one sneeze and everything could change in his world. We have limited his -- limited visitors to his two staff and family. When we feel that all of his -- we feel that he's currently safe at home, we are very concerned about what would happen if Andrew needed to be seen at a clinic or hospital at this time. Andrew accesses -- sorry. Intense levels of support and if he needed to be seen by a doctor or hospitalized, he would need to have these one person such as myself, my husband or longterm staff with him that is able to communicate his needs and preferences to medical professionals. We are very worried about hospitals around the U.S. that have a big ban on families and personal support persons being allowed to be with the person that needs that level of support or care. A year ago Andrew was hospitalized for a month. His dad and I were with him every minute of every day. It was a long stay. He continued to thrive and heal. The nurses and doctors are great. They know their world and they know how to medically, you know, work with Andrew, but they don't know how to 21 communicate with Andrew. They don't know what he needs and they don't know how to comfort him what he's afraid or he's in pain or he just needs a drink. So we had to be there to communicate that and help them through this stay. A significant contribution to Andrew's quality of life is the support he gets from his family and his staff by his side. That is his support team. We believe that people with disabilities have the right to receive respectful care and have a person of their choice with them in a hospital setting for support, for comfort, for healing. Now more than ever before, during this pandemic, and always. Thank you. >> Thank you so much, Karen. We really appreciate you sharing that story, and I think it just highlights, you know, some of the concerns that we've been hearing about on a national scale about medical rationing of care ask disability discrimination and health care supports, and then also just really the vital need for family support and 22 trusted networks of support during hospitalization in response to covid. So that's certainly something we are hope to go make progress and allow individual to be with them if they do have to be treated for covid. Thank you again, Karen. Our next speaker from the second congressional district is Paulene Swanby. Paulene, are you on the line with us today? And I believe Jody Johnson was a support person that was with Paulene, if she's on the line? Okay. Well, maybe we will come back to them nice they are having some challenges with connecting. So from the third congressional district we have Tiffany Tully. Tiffany, are you with us this morning? >> Yes, I'm right here. >> Hi, Tiffany. Thank you. >> Hi. I'm good. 23 My name is Tiffany Tully, and I have two children with disabilities that benefit from therapies and the structure of school. I myself am autistic as well and I definitely benefit from all of that as well. So while we've been out of school neither kid is doing well with telehealth as well as the demands of school and their so-called comforting environment. We've created this environment at home to be their safe place and bringing these demands to a place that we've created for the best, for their sensory and mental health needs is a demand that we just can't meet. So it's just unattainable. Our school and teachers are going above and beyond for their students, but we are barely able to even take attendance. My children's mental health the most important thing right now and I can either push my children to the breaking point and destroy the bond that I've been working really hard and years to create or I can respect that they will do the best that they can and then we'll move on and do what we need to do as a family. So we have all, we also have a wonderful support team through our therapy center for each child. 24 Some of the relationships have taken over a year to build before we have even started therapeutic intervention and getting, you know, going further with our therapies. So one of my children has selective mutism which meaning that they can't always speak due to anxiety, so, that child cannot do any telehealth, they can't do any school work basically due to their selective mutism. It's too much for them. The center is okay with us not doing the telehealth right now and trying to work with us, but once they open up, which they are starting to open up as of this week, they will either need us to do telehealth or come in. I have my own physical disabilities, I cannot do that. We haven't left the house or our property in over a month, probably more. So we just can't risk it. So now I either have to make the decision as they start opening up the building and stuff to either risk my health or risk their mental health. We know that they are working really hard to keep up the center and keep it open, but if we can't do it, then we have to be put on a waiting list again and to 25 give you perspective, the waiting list can be 6 to 9 months and we might not even get our same therapist again. So all of that work and that bond that we have tried to established is now probably maybe down the drain. We'll have to start it all over and for my children, that's pretty much not -- it's devastating to our family. They weren't able to get the C AR ES loan, the C AR ES act loan because they were over by a few people so they don't have a lot of options either, so had we been able to get that, we might have had more choices for our family. I of course know that everyone is in a tricky situation, but I also know that this is all up in the air and the gray area type thing is really affecting my own mental health. We've created an environment that we need in having this encroach in our safe place is really uprooting so many thing that's we worked hard to really maintain. There needs to be more firm guidelines and a way for therapy and disability support areas to operate. And I appreciate everyone taking the time to listen to all this, but as an autistic, I really need to see more black and white, more structure. 26 It's really taking a toll on myself as a person and as a parent. So thanks for listening. >> Thank you so much, Tiffany. I know that certainly concerns around telehealth accessibility, something that we're hearing consistently and then also challenges with distance learning and our next speaker from the fourth congressional district, Rhea Nelson Rock is also going to be speaking to that. >> I am, thank you. Hello, I am Rhea Nelson Rock, I live in Lake Elmo, Representative Betty McCollum's district. Thank you for allowing me to join you -- my husband and I have two 13-year-old daughters and a 10-year-old son. Our son Nolan started having seizures at 4 months old, at 5 months old he began having infantile spasms, a severe seizure type that generally results in neurologic impairment. As a result of his seizures, Nolan is significantly cognitively delayed and disabled and also has physical disabilities. Nolan has an IEP and spends most of his day in a 27 special ed classroom. As part of his IEP, Nolan receives speech, OT, PT, and DAPE services at school and has para support throughout his day. As you can imagine our shelter in place has impacted Nolan's ability to continue to learn and develop. Nolan cannot be given a worksheet or an electronic assignment and be expected to complete it on his own. All homework or at-home learning requires somebody to be at his side helping him. As an essential employee myself I do not have the ability to devote several hours a day working with him on homework. Although I fully support the fact that our children are not in school right now I am very concerned about Nolan and other kids like him who are not receiving the education and other services that they need and are therefore going to regression. I have pushed to have continued para support to assist him with homework, but have been told that para support is currently not allowed. So my request today for congress is to work to protect special education services and student rights under the IDEA act and provide robust funding to states and school districts, ensuring that our children have 28 adequate resources to provide them with meaningful and equitable education experiences. Thank you. >> Thank you so much, Rhea. We really appreciate you sharing that. Again, full funding for IDEA is so vital to support access to special education service that's really help kiddoes with disabilities thrive in their classrooms and, you know, we also have heard some concerns from families about potential IDEA and Rehab Act waivers, so really want everyone in, you know, representing the congresspersons here today to keep an eye out for that as we will be monitoring that closely as well. >> Hi, Alicia, this is Jody and Paulene, can you hear us? >> We can hear you, Jody and Paulene are our speakers from the second congressional district. I'll turn it over to you, I'm glad you could be here. >> I'm Paulene Swanby and Lutheran Services supports me by paying my bills and taking me to doctors appointments because I don't have a driver's license 29 right now, so we're in the process of trying to study and I work and live in Red Wing and I work at Pro Act, so with all this covid stuff going on I haven't been to work since March 17th, we're supposed to go back May 7th, LSS is really important because without them I wouldn't be able to get my license and get to the places where I need to go. And I live in Red Wing with my boyfriend but he's always at work, so I don't get the -- he can't bring me places without -- when he's working. >> This is Jody and like Paulene said, I get to help her, I have the honor to help her enhance her quality of life, nurture her potential and help her to explore her hopes and dreams and that right now is working on getting her driver's permit and eventually her driver's license. And we're asking members of Congress for fair inclusion of home and community based services for people with disabilities in the next federal COVID-19 relief package. And thank you for your time today, especially to Congresswoman Angie Craig for your continued support and being such a strong advocate for the disability community. >> Thank you so much, Paulene and Jody. 30 Paulene, I really hope you're able to get your driver's license. That's a big milestone in many folks' lives, so I know that would really help you enhance your belonging in your community so really hope you'll be able to do that. Thank you so much, Jody for all of your work. Direct support professionals are essentially, so as we mentioned, hoping that home and community based grants will be included in the fourth covid relief package. So thank you both. >> Thank you. >> You're welcome. >> Now I think we're going to turn it over to Abigail V from Fraser from the fifth district. >> Thanks, Alicia, and thanks to all of the members of our congressional district and their staff who are joining us this morning. As Alicia said, my name is Abi and I am the counsel for Frazier. We are a non-profit founded almost 85 years ago to assist children with special needs. 31 We have served over 12,000 clients a year in housing and education services. As you've heard from families [ echo ] >> And as we are seeing as community mental health providers there is an ongoing and increasing need for our services during this pandemic. We've pivoted to telehealth services wherever that is possible, but as some of the earlier speakers have mentioned, some of our clients, toddlers and preschoolers especially do not do well with telehealth and they need face-to-face services. When these children go days or weeks without services we see regression that then requires a longer course of treatment and more intensive services which increases the time, energy, and financial cost to both the families and the community. Additionally, Frazier and other providers like us are only being paid for services that are being provided, so we've seen a 70% decrease in services that require face-to-face interaction, and this means that we are furloughing our staff. As a mid-size employer, we have 1500 employees, we have not been included in state or federal relief programs and we are currently looking at over $3 million in 32 anticipated unemployment reimbursement fees right now. That's really difficult for us to handle, given that reimbursement rates for our services barely cover services when things are going well. So as much as we've tried to build a rainy day fund, we know that as an agency we cannot sustain those ongoing costs. We'd like to work with all of you to come up with creative solutions that can support these mid and larger-sized non-profits that have not been included thus far in packages. We think that there are some ways to provide this with support that could include subsidizing our unemployment reimbursement fees, it could be providing retainer payments for services that have not been provided as a result of the pandemic. It could be providing grants to our organizations. And importantly, it could also include counting mental health providers and direct support professionals as health care providers in the definition of health care in these upcoming packages. And it can also include lepping us to access personal protective equipment for our staff who are going into homes and providing direct support services to clients with special needs. 33 So thank you very much for your time, and we look forward to working with you. >> Thank you so much, Abi. Really appreciate your lens on that and for sharing that perspective. So from the sixth congressional district we have parent advocate Scott Price and, again, we really wanted to thank Senator Smith and Congress woman Craig for taking the lead on the all dependents count, that's something we've been tracking really closely and advocating for and thank you to all the other members that have signed on thus far. Scott's going to speak a little bit about why that's so important. Scott, are you with us this morning? >> I am, good morning. My name is Scott Price, my wife Laura and I have five children, three adults with developmental disabilities and two teenagers, all are living with us. Since the stay at home order went into effect, we lost work, community based programs, access to routine medical care and even the ability to do remote day programming due to Minnesota DHS rules. 34 Because of these losses, my wife and I had become teachers, game leaders, cooks, and several other jobs that many families have talked about and must absorb more than what other families are doing. It was my understanding and incorrectly that my adult children would be recipients of the $1,200 amount of the stimulus money. Since my children are my dependents on my taxes it may have been more accurate to say that they could have received the $500. I can tell you we have not received anything for my adult children with disabilities. Two of my three adult children work part time and therefore are actually tax payers. I'm not sure why a disabled individual would be less deserving of the stimulus money than my 15-year-old who's never paid taxes. I am fortunate my kids have services that are flexible. We have been able to ensure our family remains fed, clothed and safe. I work with about 150 families who receive waivered services, in many situations there is only a single parent. The additional duties I mentioned above fall solely to that mom or dad. 35 They are often not aware of resources so they call me asking for guidance. They need that stimulus money desperately. When I think of what government should do in a crisis, it is first to assist those who can't help themselves. When I see what's actually happening it appears more and more that those with disabilities have been pushed to last in line because of their inability to advocate for themselves. As future supports come out it is important to me, my family, and those I serve that people with disabilities be treated as equal citizens of our country. Thank you for your time and hearing our concerns. >> Thank you, Scott. So, you know, financial instability is something that a lot of families are experiencing right now across our country. And we really hope that congress will take action to make sure that families of adult children with disabilities are receiving those stimulus checks in the same way that many -- many others are. So, again, thank you for those that have supported the All Dependents Count act and we hope that other members who have not signed on will be sure to do so. 36 Another significant concern that advocates have in Minnesota is around rights restrictions and rights violations as a result of the pandemic, and so Karen Swanson from the seventh congressional district was going to share a story about that. Karen, are you on the line with us? >> There. Can you hear me? >> Yes, we can hear you. >> Okay. All right, good morning and thank you so much for having me history err to discuss this important topic with you. My name is Karen Swanson, I'm the parent for two adult children with autism. My younger son -- lives in a group home in Moorhead here with three other young men. He's healthy and active, swims, plays baseball, soccer, attends social groups, active in church, he also works at a thrift store part-time. Shawn usually has a very busy schedule and that is best for him in order to be happy and healthy. 37 He usually spends time with our family every weekend and we do a variety of activities with him and his older brother who also has autism. He looks forward to these weekends with us and we like to take him biking, to the lake, and just spending time with family. Since COVID-19, all of his activities have been canceled, his job is on hold, no one is allowed in and out of his house except for staff. We have been told that if we want to take him we must take him for 14 days without him having any symptoms or exposures. My husband, Shawn's father and I are both essential workers and continue to work full-time throughout this pandemic. I am a nurse and my husband works for Crystal Sugar, we would need to have staff at home in order to care for him while we're at work. This has not been an option through the agency that runs his group home. Shawn spends most of his time these days indoors on his iPad what he's accustomed to so much more activity. I'm very concerned about how this will affect him and all of the others that are in this similar situation. As a nurse with 31 years of experience I understand the 38 risks of COVID-19, however, treating a person with disabilities, treating their home like it's a retirement home is not the answer. It's a violation of their rights. For young healthy individuals to be treated as if they are senior citizens is just not okay. People with disabilities should have the same rights as everyone else in society. We aren't asking that Shawn violate shelter at home or run all over town, but just that he be able to spend time with his immediate family, get outside, be active, enjoy his basic freedoms. Staff at his home do come and go and we feel that as a family we should be able to have the same rights to come and go to see our son and we would also follow those same guidelines that our staff are following. Thank you so much for hearing me out today. >> Thank you, Karen. We're so grateful that you shared that story and, you know, it is just, it's disheartening, I guess I would say that this level of isolation is not new for people with disabilities. People with disabilities all the time are told where they can go, when they can go there, and with whom. 39 And we need to break that down. We need to be treating people with disabilities like people. They need to have the same rights and the same access to their loved ones, family members as the rest of us do. All of us are learning our new normal, but the burden of this pandemic should not fall more so on people with disabilities than the rest of us. So, again, just really grateful for you sharing that perspective, Karen, and for all of your advocacy with and on behalf of your son. And then the last scheduled testifier that we have from the eighth congressional district is Shane. Shane, good morning, are you with us? >> Good morning and thank you for having me. Can everybody hear me? I un-muted my mic. >> We can hear you loud and clear, Shane. >> Okay, good. First time I've ever done Zoom on my laptop. So thank you, everybody. 40 I'm 36, I live in Duluth in a one bedroom apartment and, yeah, covid's definitely been difficult on me and my family to say the least for a lot of reasons. One of the reasons is I just hired within the last week two PCAs off of an indeed ad I posted and one of the PCAs had ended up actually after she filled out all of her background check paperwork one of her roommates had been exposed to the covid virus so she had texted me and said because of that she didn't want to risk exposing me to the virus. And the second staff I haired after two days of working for me went to the ER and thankfully they tested negative for the virus but they had some other health issues so they were still in the hospital because of that. So pretty much my mother has been my one and only PCA for about the last several weeks. And I think one of the biggest issues right now and I think a lot of people would agree with me on this is that there's no way to really test any potential PCAs to see if they do have the virus and there's no way to do at this time anyway any ongoing testing to see who does and does not really have the virus and that. And that in and of itself is a scary thing because I know a lot of PCAs because the wage isn't very high end 41 up working with more than one client and the more clients they work with, the more, the higher the increased risk is of getting covid. And I think there definitely needs to be more personal protective equipment in the form of masks and gloves and I think that'd something that the federal government should be looking at. I know it's definitely changed a lot of stuff because I've had to do Zoom meetings with my sisters, my nieces and my nephew and that's been hard to adjust to. But I think the hardest thing is how do you find and retain a PCA in this type of climate that we're in because like you had said, you never know, does somebody have the virus when they come into your home, where have they been, who have they been around. It's all stuff I wish there was actual testing that you could do with a potential PCA before you actually hired them. As opposed to just taking it at face value. So I guess my hope would be that the federal government would also extend testing to potential PCAs and provide more personal safety equipment in the form of gloves and masks because as we all know those are two things that are in short supply right now because of covid. And I look forward to life getting back to more degree 42 of normal and being able to be outside. I know the only two places I've been are my apartment and my mother's house the last month because of the covid. That's pretty much all I had. Thank you. >> Thank you, Shane. Thank you so much for sharing your personal story. And, you know, again, we've shared that message and you'll see it above my he did here, PCAs are essential, and PCAs are I vital part of a support network that help people with disabilities live in their own homes and work independently in jobs that are fulfilling and meaningful to them. So we really do help that the fourth covid package will include investments for home and community based services grants that would include support for personal care assistants, personal protective equipment, we know that there are shortages across the country, but those are really vital resources that can help make sure that people with disabilities are able to continue living independently. If folks have to go and move into more congregate settings, that's certainly more expensive it, restricts 43 their independence and their rights, but then also we've seen in states that do continue to operate really a large volume of high resident number institutions that that's really where those covid outbreaks are happening and we need to make sure that people with disabilities are living as independently as possible and working as independently as possible and not restricted and confined to those congregate settings, so that's why PCA services really are essential and we want to make sure that they are included in the fourth covid package. So we have just about 10 minutes left and wanted to give a bit of time for the staffers from our congressional offices to respond. I think this time we will maybe go backwards and start with the senators' offices. So Elyssa from Senator Klobuchar's office, did you want to share any final comments or reactions to the stories this morning? >> Hi, can everyone hear me? >> We can hear you. >> Oh, great. 44 Great, I do apologize that earlier you weren't able to hear me, I was on the call and, again, my name is Elyssa calling from Senator Klobuchar's office who unfortunately the senator wasn't able to join today but I wanted to thank you for extending an invitation to staff and to say how I'm definitely touched and moved and I've been hearing all of the stories and how much work is left to be done in terms of helping the disability community making sure that there is more work to, you know, happening to help people lead quality independent lives and community integration. You know, one thing I wanted to mention is that there's definitely a lot of opportunities, there's still conversations happening regarding the next coronavirus relief package and there's a lot of work that's already been done that the senator has supported relating to many of the topics that have been raised today, regarding providing additional funding for home and community based services, comments about boosting Medicaid payments, unless additional -- increase, extending paid leave protections, expanding access to PPE, the list goes on, and you've all highlighted the important items that must be considered and must be part of the consideration. Please know that as a staffer I hear you and as a 45 conduit to the senator I will be passing along all the stories, please don't hesitate. I want this call to be a beginning of a larger dialogue in ways we can be helpful. We can't know what is happening or not happening on the ground without conversations like these. So thank you so much. >> Thank you, Elyssa, we're really grateful for your time this morning. Erin from Senator Smith's office, did you want to share any final thoughts or comments? >> Hi, yeah. I would love to just again kind of echo what Elyssa just said that the senator hears you and is doing her part to support a lot of these various different issues that you have mentioned. She's glad to lead on the all dependents count act with Representative Craig and support HCBS services, -- providers and, you know, will continue that work along with kind of the more general issues that you've raised about increasing access to testing and PPE and working to kind of address this virus as much as we can now so that we can get through this as quickly as possible and 46 safely as possible and just really appreciate hearing all of your unique individual stories and will be glad to share those with the senator as well and she really appreciates hearing from you and knowing (indiscernible) so thank you so much. >> Thank you as well. We're really grateful for your time. Allie from congressman Stauber's office, did you want to share any final comments? >> Yeah, so I just want to thank you all for sharing your stories with us. Certainly I'll make sure the congressman hears from all of you. Shane, I want to particularly thank you for representing Minnesota's eighth on the phone call today. The congressman himself is from the Duluth area, Hermantown and so he's hearing from folks like yourself daily and we're doing our best to figure out ways that we can make sure that in phase four, you guys are -- the disability community is taken care of, that all of the supporters are given the access that they need to care for the individuals that they've cared for for so 47 long. And Abigail, I appreciated you giving some really actionable items that we can look towards in phase four that can help organizations like yourself in your mission to care for all the individuals that are out there and currently suffering and needing more access to care. So feel free to reach out to me individually, anyone on this call, I'm going to leave in the chat box my e-mail address, so feel free to always reach out to our office. We want to keep the communications line open as we move forward and we really appreciate you all joining us today. So thank you so much. >> Thank you, Allie, as well. Rebecca from congressman Peterson's office, did you want to make any final comments? >> Yeah, thank you. Just wanted to thank you for the invitation to join you today. Karen and others, thank you for sharing your stories. I'll definitely be taking these back to Congressman 48 Peterson and also my colleagues who work on some of the issues that came up during the call. And Allie, I think that's a great idea. I'll leave my e-mail in the chat box as well. If you'd like to reach out to our office, please do, feel free to do so, and everyone, please do stay well during this time of a lot of uncertainty and frustration and please do let us know how we can be helpful. So thanks again for your time this morning. >> Thank you. And Bobby from Congressman Emmer's office, would you like to say anything? >> Yeah, again, I'll get in line as I say thank you, everyone, for sharing. Scott here in the sixth, your story all about adult dependents not getting the money, you know, I've dealt with 17, 18-year-olds not getting anything from the stimulus and so this was kind of news to me, which it shouldn't have been but it's not just your story, Scott, it's Rhea, and her challenges with telelearning, Tiffany and telehealth, Paulene getting to her doctor without LSS to give her rides. 49 These are all stories that I needed to hear in some ways, anecdotal -- stories like this is really what moves the needle on some of this stuff, so I appreciate all of you taking the time today and the congressman and I are actually meeting this afternoon and this is going to be one of the things we talked about. >> Thank you so much, Bobby. We really appreciate that. And then Pat from Congresswoman McCollum's office, would you like to share any comments? >> Yeah, again, I would just like to thank everybody for sharing these incredible stories. Just one side note, my cousin suffers from autism, she's actually very involved in Autism Speaks and I've been staying in contact with her so I know that just taking to her that the unique challenges facing the autism community in particular are a lot of times left out of the dialogue from what a lot of people are talking about. So just special thank you to Jillian and everybody, the parents of those in particular the autism community. I know that you guys are really facing a unique set of challenges. 50 And everyone else, thank you so much as well for sharing your stories as well. Rhea, in our district the story that you tell of Nolan, I know you guys are -- somebody put it well before that the burden of this pandemic is falling on some very unlikely heroes, and we need to deal with this in a short-term and longterm strategy. Short-term needs to be a fourth phase, inclusion, you know, for mid and large-sized non-profits as you guys were talking about. Making sure your caregivers have the PPE they need, making sure we can get things back to normal as quickly as possible. But the longterm strategy has to be looking at what were the effects that this pandemic had on some of our children in terms of what skill sets had -- what skill sets, you know, unfortunately went backwards. How much more investment are we going to have to make to bring our children back up to speed to where they were. We read a terribly, terribly tragic story a couple weeks ago, my boss, Congresswoman McCollum sent it to me which shows she's keeping an eye on this, from a mother after years of special education, this year she was really, really excited that her young daughter was 51 finally going to be able to learn to speak in school and I actually believe she had the same disorder that one of the parents was talking about, selective muteness. And unfortunately because she's at home now, the mother said that it's going to take at least eight more months, that she has totally regressed and bare minimum next school year if everything returns to normal, the daughter will get to the point that she was only weeks away from at the start of this pandemic. Those are those untold stories that right now we need to address the needs, but six months from now, a year from now, two years from now we need to keep these people in mind because it's going to take an all hands on deck strategy. The congresswoman very much is aware of that, we're going to make sure you guys are included as much as possible in this fourth package, but after that, we cannot let up, we have to put our foot on the gas. Thanks again for sharing your stores, this has been awesome. Have a great day, everybody. >> Thank you so much, Pat, really appreciate it. Meg from Philips' office, would you like to share? 52 >> Sure, I'll just echo this is extremely helpful and I think Scott said earlier the people who don't have the loudest voice end up last in line. It, and to hear personal stories in a timely way. Tiffany from the third, I will certainly be passing your story along to the congressman this afternoon and just on behalf of all of us, appreciate all you're doing for your children and really understand that you need to see things more clearly in black and white and that there's a lot of talk right now but we need some action, so we've got a lot of action items from this call and I appreciate all of your time. >> Thank you so much, Meg. Morris from Congresswoman Craig's office, would you like to share at all >> Again, the congresswoman said it and her time was important to be on this call and she apologized she had to get off but she was insistent she'd be on this call from the start. And it is to her credit that she pooled together folks from the non-profit world early on in the pandemic crisis where we actually had non-profits from our congressional district talk about the unfolding 53 situation that they only could have imagined at that time, and we have been a champion of highlighting the importance of funding for the smaller non-profits, and we are now championing together with the Minnesota Council of Non-profits, non-profits up to 10,000 employees as well for fund to be received. This is obviously an issue that is visceral for Representative Craig and we will continue to promote and support all efforts to ensure that most of thans of every orientation and of every set of abilities are able to have the services that they are entitled to and access to the opportunities that each of us deserve to have. So thank you, Alicia and Jillian, for your work on this, and thank you all to the hundred people who are on this call, and support of those stories that were told. >> Thank you as well, Morris. Really appreciate your time. And I saw Carol put all of her contact information in the chat box as well. Carol, are you still on the line in? If so, would you like to share any comments with -- [ Music ] 54 >> Yes. Yes, I would like to share. Congressman Hagedorn regrets that he could not be here today, he very much, this is close to his heart, he has a nephew with disabilities who is just a delight and the light of his life. And as I look at the hashtag we are essential, I think that doesn't just refer to workers but people with disabilities themselves, you are all essential. Karen Larson, I look forward to meeting you and Andrew and your husband in the future and would like to arrange for the congressman to meet you as well. Your concern about hospitals allowing parents to be in the hospital if heaven forbid Andrew would have to go in the hospital to allow you to be there and to stay with your child in order to express his needs to the staff. I just think that's vitally important and I will be passing that on to the congressman. I did leave my contact information in the chat, and I look forward to hearing from you. Thank you, everyone. This is very helpful and I will be referring these action items onto the congressman. Thank you. 55 >> Thank you so much, Carol, and to all of the staff for being with us. Again, special thanks to Congresswoman Craig and Congressman Stauber for taking a bit of their time. I want to give a huge shout-out to everybody that shared their personal stories today. Thank you to Jillian, Karen Larson, Jody Johnson, Tiffany, Rhea, Abi, Scott, Karen, and Shane, thank you so, so much. It is vitally important that your stories be heard, that they be highlighted and that we support your empowerment in advocating for things you need throughout this crisis and far beyond. We are so much stronger together as a disability community and when we work with members of congress we can really make sure that the issues facing folks with disabilities, their family members and allies are prioritized. So thank you, everybody, for taking time to be here today on behalf of ARC Minnesota and all of our partners within the Consortium for Citizens with Disabilities, Fraser Lutheran Services, and many others who coordinated the event we're really grateful for everybody time and hard work today. 56 So please stay well, please be healthy and please don't hesitate to contact all of us at MNCCD if there's anything that we can do to support you and your families. Thank you, again, everybody for spending the morning with us and we will look forward to staying in touch about these issues and many others. So thank you so much. CART FILE DISCLAIMER This text is being provided in a lightly edited draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility, and this lightly edited CART file may not be a totally verbatim record of the proceedings nothing within this file should be duplicated, excerpted, or quoted without the express written consent of the CART captioner. Due to the live nature of the event, some names and/or terms may be misspelled, and this text may also contain phonetic attempts at sounds and words that were spoken, and environmental sounds that occurred during the event.