SPEAKER: Council on Disability’s Legislative Forum. On screen is written content. Housekeeping, slide one of four. Accommodations provided today are ASL by deaf interpreters. Regarding today’s audio description, each person speaking today will describe themselves. Visual information appearing on screen will be audio described.
Housekeeping, slide two of four. Live captioning is being offered two ways–in the Zoom platform, and as a separate StreamText link. You can find the StreamText link in the chat, or on the MCD website. To view the live captions in Zoom, select the Show Captions or Live Transcription button.
Housekeeping, slide three of four. This event is being recorded. The recording will be available on the MCD YouTube channel soon. This event will not have live chat or a question and answer portion. MCD will be conducting virtual community conversations to collect your feedback. Please stay tuned to the MCD website, newsletter, and social media for information on how to participate in the upcoming MCD community conversations during the 2023 legislative session.
Housekeeping, slide four of four. You are encouraged to provide feedback and comments via our event survey. The survey will stay live on the MCD website for one week following this event. Some material presented today may be emotionally challenging and triggering for some trauma survivors.
DAVID D: Hello, and welcome. My name is David Dively. I’m a white male with blue glasses who is bald, is wearing a blue sweater, white shirt, and red tie. My background has the state capitol with our agency logo in green, blue, and white.
It is my honor and privilege to serve as the Executive Director at the Minnesota Council on Disability and work by, for, and with the people of Minnesota. This is the Minnesota Council on Disability’s 2023 Legislative Forum. As we are about to enter our 50th anniversary as an agency, I think it is appropriate to recognize the leaders, employees and council members who contributed to this agency over the last five decades. Look out for future announcements regarding our 50th anniversary celebrations.
The Minnesota Council on Disability, with a staff of around seven and a $1 million per fiscal year budget, provides technical assistance on disability rights and laws, training on disability culture, public policy advocacy, consultation to the executive branch, legislative branch, and judiciary branch, as well as to the public, and training for government agencies and organizations, all for the purpose of advancing civil rights and services for Minnesotans with disabilities. Our strategic goals are created by our governor-appointed council board, who are made up of citizens across the state. And we, as staff, work to carry out that mission.
This forum is a showcase of what we can do, what the Minnesota Council on Disability can do, and what people with disabilities can do when we come together. But it does take everyone, from consultants to vendors, to the council members here in the staff, to the community members and advocacy organizations. We are all here today to spotlight some important issues. Minnesota has a record-breaking surplus, and we have systems that need to change, some through statutory language, and others through funding increases. From home care worker shortages to barriers for employment, today, we will touch on numerous critical topics. And we ask that state leaders here today listen with an open heart and mind to understand how these policies impact everyday people in greater Minnesota and in the metro statewide. Disability is part of every culture, every community, and in every part of our state.
We designed the event today to feature citizen advocates sharing their lived experiences and talking directly with the legislator to find solutions together. To give advocates the most time possible, we are not able to have a live Q&A portion for this event. We will have community listening sessions in the coming months to hear your feedback and ideas. We value the input of all stakeholders, especially Minnesotans with disabilities.
We have heard from you over the last several months in meetings, through surveys, and meeting you at the state fair, and our goal in 2023 is to ensure the work we’re doing continues to build on the input that you’ve given us and our governing council. And we plan to have more community engagement events going forward. We collectively are the disability community. We need and want to hear from you. Also, we have an event survey. The link is posted to our website at mn.gov/mcd. The closing slide today also has a QR code that you can use to link directly to it. We’ll have the link to the event survey posted on our social media channels, as well.
There are many ways to stay involved during the legislative session. Please follow us on social media channels, sign up for our newsletter, check our website for legislative updates. Also, contact us by email or call us, or leave a message. Our phone number and email addresses are all listed on our website at mn.gov/mcd. We continue to work in a hybrid environment, so email may be the fastest way to be in touch with our public policy director, Trevor Turner, or me directly.
As we get started, I want to take a moment to thank all of our staff, all of our council members, our citizen advocates, our collaborative partners, our production team, our legislators, our legislative assistants, the Governor and Lieutenant Governor, and their staff for their participation today.
Through this forum today, we want you to have a better understanding of our agency, to see yourselves represented through the council members, through the citizen advocates, non-profits, and staff, and to understand some of the policy issues that we are working on in 2023, and to challenge all of you to stay engaged throughout the legislative session so we can make positive change for Minnesotans with disabilities across all parts of life. And with that, I’d like to introduce you to our Council Chair, Nikki Villavicencio. Chair Villavicencio, over to you.
NIKKI: Thank you, David. Hello, my name is Nikki Villavicencio, and my pronouns are she/her/xe. I am a disabled Filipinx who uses an electric wheelchair to get around my community. Thank you for coming to the legislative forum. I am honored to be the Chairperson of the Minnesota Council on Disability. I was appointed by Governor Walz in 2019. I represent Region 11, which is part of the Twin Cities. It is my pleasure to serve on the council which directly connects the opinions and priorities of people with disabilities to this independent state agency, and to the policy leaders in Minnesota.
We bring our stories, our ideas, and solutions to the table to continue to fight for our civil rights and educate the wider community about issues that affect our ability to thrive in the communities we are from, and in the communities where we choose to live.
I want to explain the process the council members and council staff use to ensure that our policy agenda is truly driven by the people. We conducted an accessible online survey that had a strong response rate. We conducted an in-person survey at the state fair. We spoke to thousands of people. We had a couple of youngsters join us too. Their influence brought us some great energy. We engaged partner agencies and advocacy organizations. We heard and listen to our stories throughout the entire year, especially at the state fair. We held council meetings and discussed strategies to better connect with the community. We voted on the MCD public policy agenda for the 2023 legislative session.
You’ll be hearing more about that throughout the forum today, and you can find the full council agenda on the MCD website. If disability issues are important to you, please consider applying to serve as a council member representing your community. You can find information about how to apply on the MCD website. We’ll post that link at the end of the program today. You can always reach out to MCD staff with more questions about the application process.
To the residents of Minnesota, your voices and opinions are crucial to the council, to guide the work of Minnesota’s Council on Disability. Please contact me, the Chair, or another council member if you have issues that need to be addressed. Today, we are bringing the voice of the people to you through this event. We know that the people presenting today represent so many of us. We are grateful these advocates spent weeks of their time to bring you their powerful stories. We hope you will be moved to action.
We trust the legislative members here today will be moved to action. Thank you for attending today, and please continue to stay engaged throughout the session. Your elected leaders need to hear from you. And with that, I’ll hand it over to Trevor Turner, the MCD Public Policy Director.
TREVOR: Thank you, Nikki. Hello, everyone, and thank you for attending the Minnesota Council on Disability Legislative Forum. I would like to thank our Executive Director, David Dively, and our Council Chair, Nikki Villavicencio, for opening up our event today. My name is Trevor Turner, and I’m the Public Policy Director for the Minnesota Council on Disability. I am a white male with blonde hair, wearing a suit, with the Minnesota State Capitol building as my background.
Today, I will be presenting our 2023 Legislative Agenda. For the sake of time, I’ll only be highlighting a few things from our agenda. However, our full legislative agenda can be found on our website at disability.state.mn.us. I encourage you to visit our public policy page and learn what issues we’ll be focusing on and advocating for during the 2023 legislative session.
The 2023 legislative session will be historic in many ways. For example, the legislature will be working with the largest budget surplus in Minnesota history. The Minnesota Council on Disability will be advocating for that money to be spent on programs and policies that support and empower the disability community. The state legislature has a unique opportunity to address the systemic inequalities and barriers that Minnesotans with disabilities face every day.
The Minnesota Council on Disability is a nonpartisan, independent state agency that works closely with both Democrats and Republicans. However, we recognize the unique opportunities that arise when the governorship, House, and Senate are all under control by a single party. The voters of Minnesota have given the responsibility of leadership to the DFL, and the Minnesota Council on Disability will hold them accountable to deliver on their promises to support Minnesotans with disabilities.
The 2023 MCD legislative agenda was created over the past year through meetings with constituents, disability advocates, state agencies, and over 300 responses to our legislative agenda survey, which was distributed online and at the 2022 Minnesota State Fair. Some of the legislative agenda items, like the employment and retention of employees with disabilities package, are a culmination of years of work from dozens of stakeholders from across the state. Policy making is neither easy nor expedient. While we are presenting our 2023 legislative agenda today, we are already looking toward the 2024 legislative session.
If an issue that you care deeply about is not represented in our agenda today, I invite you to contact me via email at email@example.com, or via phone at 651-350-8642. Together, we can work to get that issue onto our 2024 agenda, build a supportive coalition, and educate our elected officials on why they should prioritize the issue next year.
Our 2023 legislative agenda is divided among three pillars. I chose to use the pillar metaphor because pillars are important to the structural foundation to a building. No pillar is more important than the others, and they all equally hold up our legislative agenda. Pillar one is increasing disability representation in state government. Pillar two is improving the lives of Minnesotans with disabilities. And finally, pillar three is disability partner support.
Pillar one, or increasing disability representation in state government, are policy priorities that expand and grow the influence that Minnesotans with disabilities have in our state government. This includes growing the capacity of the Minnesota Council on Disability so that we can be a stronger and more influential advocate in our state agencies, and at the state legislature. It also includes hiring and retaining more employees with disabilities so that we create a pipeline of new leaders with disabilities who sit at the policy and decision-making table in our state agencies. We believe that with more employees, managers, directors, and commissioners with disabilities creating and implementing the policies and programs that serve our community, the better represented and better served Minnesotans with disabilities will be.
Pillar two is improving the lives of Minnesotans with disabilities. This includes making it easier for Minnesotans with rare diseases to see the specialists they need, or making affordable housing more accessible. It also includes addressing the PCA shortage by increasing their pay and allowing them to drive their clients with disabilities, so that they have greater access to their communities. We also will work to amend the Minnesota Human Rights Act so that Minnesotans with episodic disabilities have the same rights and protections as others with disabilities.
The biggest part of disability advocacy are the partners and coalition that come together as a team to take on the most challenging issues. Disability partner support makes up pillar three on MCD’s legislative agenda, and it includes working with the Minnesota Inclusive Higher Education Consortium to make college accessible and inclusive for those with intellectual disabilities. We are partnering with state agencies like the Department of Natural Resources to ensure that our state parks are accessible for all Minnesotans with disabilities.We will support our partner disability agency, the Minnesota Commission for the Deaf, DeafBlind, and Hard of Hearing in their efforts to make hearing aids more affordable.
And while the legislative agenda items that are being presented will be our focus in the 2023 legislative session, it does not mean that we won’t support our many partners’ initiatives in legislation. In fact, our legislative agenda is designed to be an evergreen document that supports any pro-disability policy that aligns with MCD’s mission and values.
In closing, I would like to give extra thanks to the disability advocates and disability organizations that agreed to present today at our forum.
Today’s legislative forum will focus on health insurance access for Minnesotans with rare diseases, accessible and affordable housing, improving the Medical Assistance for People with Disabilities Program, inclusive higher education, hearing aid affordability, and the PCA workforce shortage.
I also would like to thank our elected officials who are in the audience today, and I encourage you to listen and to learn about these disability issues. If any of these issues strike your heart and you want to do more to support them this legislative session, I encourage you to reach out to me, and I will be sure to work with you and connect you to the advocates who are leading the charge.
Thank you, everyone who is here today, and I look forward to a successful disability forward 2023 legislative session. With that, let’s get started. Please join me in welcoming Council Member Quinn Nystrom.
SPEAKER: Rare Disease Insurance Access.
QUINN: Welcome. My name is Quinn Nystrom, MCD Council Member from Saint Michael, Minnesota. I have long blonde hair, and I’m wearing a black suit jacket, and I’m sitting in my home office. Rare disease insurance access is our first segment today. This important conversation features Leo’s mom and citizen advocate, Anne St. Martin, Erica Barnes, Executive Director of the Minnesota Rare Disease Advisory Council, and Representative Liz Reyer. First, Anne will tell you her family’s journey.
SPEAKER: Infant boy lying in a hospital bed. He is in a coma, he has an intubation tube in his mouth, tape across his face, IVs in each arm and both legs. He is lying on a sheet decorated with moose and trees. He has a hospital ID band on his foot that says his name and birth date.
ANNE: Leo is my son. My name is Anne St. Martin. I am a white female with brown hair, wearing a black sweater. Leo has a rare genetic disease called Pompe Disease. Pompe Disease affects one in 40,000 people. Leo was born on May 17, 2016. In all senses, it was a normal pregnancy and delivery. As Leo turned three months, he developed feeding issues. Those issues progressed, and we knew Leo needed help. We knew we needed to see a specialist to help us figure out what was going on with our beautiful baby boy.
This legislation is important to me because we have personally dealt with insurance barriers, getting access to the proper specialists and treatments we need. I will share with you just one of our insurance struggles. Leo’s Pompe Disease diagnosis only came because he almost died. We had seen our pediatrician for the feeding issues. She had ordered labs and they had come back normal. Our pediatrician recommended that we go see a pediatric neurologist, but first we needed to wait for prior authorization from our insurance. As I sat there and watched my beautiful baby get weaker and weaker, I knew I could not wait the three to six weeks they said it could take for insurance to approve the appointment.
On top of that, there are a limited number of specialist appointments available to you. So even after you get the prior authorization, you then can wait eight more weeks to even get in to see a doctor. I called the neurologist and told them I would pay out of pocket. They told me they normally don’t do that, and I would need to give a credit card, and it could cost up to $5,000 or more for the visit. They also said that even if insurance did end up approving the visit, they cannot go back and refund me. I did not care, and I told them I would bring my credit card with me. They then told me the next available appointment was in four weeks. I told them I would not stand for that.
Luckily, they had a pediatric neurologist physician assistant that I could see the next day. We took that appointment and we prayed. The next morning, we checked in at our neurology appointment. I gave my credit card to the receptionist and we waited. I remember thinking this was it. We were going to get the answers we needed. It would be worth the cost and Leo would be okay. Instead, the PA came into the room, looked him over, listened to his heart, and then told us she was calling an ambulance and checking us into the hospital. When we got to the hospital, they did an EKG and saw that Leo was in heart failure.
Pompe Disease causes the glycogen that cannot be broken down to be stored in the skeletal muscles, and mostly the heart. At four months old, Leo’s heart was so large it was crushing his left lung, and he was in the beginning stages of respiratory failure. The doctors raced to do blood work and to stabilize Leo, but still were unsure what was causing this. They did blood work on me and my husband, which we also had to pay out of pocket for, since it was not approved, or as insurance said, needed for Leo’s diagnosis. Even though most rare diseases are genetic diseases and parents are carriers of these diseases. Doctors can diagnose better if they can see the parent’s genetic profile.
And they need those answers quickly when you have a four-month-old in heart failure, but that didn’t matter. So another charge to the credit card. Leo was rushed into emergency surgery the first night in the hospital, where they stabilized his heart, put in a G-tube for feeding, and later on a trach for him to breathe. Then we just waited. Two weeks later, still in the hospital, the results of the expensive labs on my husband, myself, and Leo finally came back, and we were given the official diagnosis of Pompe Disease. Pompe is a rare disease that has a treatment. This treatment is enzyme replacement therapy, where Leo receives a weekly six-hour infusion.
This is not a cheap treatment, and the medicine Leo needs is about $600,000 a year. The hospital advised us we needed to call our insurance immediately, and also look into applying for medical assistance. They told us the life-saving treatment for our four-month-old son was very expensive, and would take a while to get approved, mostly because of the insurance barriers. They advised they could do some treatments under a life-saving measures treatment plan, but to have anything past a month of treatment, they would need prior authorization. We reached out to our insurance right away and we were told they needed more documentation from doctors to approve.
Luckily, we were in the hospital and had many doctors available to us on a daily basis who helped us work with insurance to get this approval. Our insurance at first denied the specific dosage of the medicine that Leo needed. He was in such bad shape that the doctors wanted to use double the standard amount. Insurance only approved half the recommended dosage, another barrier we had to get past. There was more paperwork, more begging insurance for approval, and more watching our son lay in a hospital bed while the disease progressed. All we could do is pray that insurance would approve, and pray he could get the correct amount of medicine that would help him.
It took six weeks for insurance to approve the higher dose. We were in the hospital for four months in all until Leo was strong enough to come home. I know today that we are one of the lucky rare disease families out there. We had good, private, PPO insurance when we entered that hospital. We had the ability to afford thousands of dollars of out-of-pocket expenses to be seen quickly, which literally saved Leo’s life. We were told by the doctors after the fact that if we would have waited for a prior authorization to get that initial appointment, Leo would have died of heart failure at home.
I can’t even imagine waking up to my dead child in a crib because I was waiting on a piece of paper recommended by another doctor to see a specialty doctor, can you? We were lucky because our child was so sick–he was near death–that they could get around some insurance barriers by saying it was a life-saving measure. We were lucky because we were physically located within the hospital. We had access to doctors and specialists daily who could call, pressure, and submit documents to insurance in a timely manner. We are lucky because we weren’t afraid to pester the hospital staff, to their face, to help us break down the insurance barriers we were facing. We were lucky that we were in a large metro area and had access to experienced doctors who had seen some other rare disease cases and had some knowledge on treatment. Those are the only lucky things about being in a hospital for four months with your new child.
But you know who’s not lucky? Leo. Those four to six months we waited for appointments, diagnosis, medicine, and insurance approvals for treatment, the glycogen continued to build in his outer skeletal muscles, taking away his ability to walk. The glycogen built up on his heart, and he had to have a trach and a vent for the first two years of his life. Today Leo is in a wheelchair and requires intense weekly therapies just to be able to sit up, dress himself, and speak.
We did eventually apply for medical assistance TEFRA program where we pay a monthly fee based on a yearly income so that we can have a secondary insurance to help us out when our primary insurance denies Leo’s recommended treatment plans. If insurance barriers for rare disease patients were not so complicated, the state would save money in the long term on the cost of families that have to apply for medical assistance, even with primary coverage. The insurance companies would cover these essential costs to treat rare disease, and not make the state medical assistance programs do it.
The state would save money in the long term by getting these patients treated and diagnosed early, which slows down the disease progression, and the need for facility care or nursing support. The state would save in the long term by treating these patients early, and stopping the need for long-term hospitalizations in the future.
As a parent and a citizen, I don’t want the other families of rare disease children to have to go through what we went through. I want all the rare disease children who come after Leo to have access to a provider that is knowledgeable about their disease. I want insurance companies to know that rare disease, while rare, some still have a possible treatment plan for these patients. I want the medical community to understand that time is essential to treating these rare diseases. I want insurance companies to not stand in the way of a child’s life or future because it needs a prior authorization. Thank you for your time and attention to this matter.
SPEAKER: Toddler using a motorized wheelchair, wearing a baseball cap and uniform, holding a baseball bat. He is smiling.
QUINN: Thank you, Anne, for your moving and informative words, which helps everyone here today understand the importance of insurance access for rare diseases. Erica and Representative Reyer, please introduce yourself and provide an audio description of yourself. As you listened to Anne and Leo’s story, will you share with us how you are working together to find solutions to this issue? Anne and Erica should plan to take it from here.
ERICA: Thank you. Thank you, Quinn. I’ll go first. And thank you to the Minnesota Council on Disability for allowing me to be here. It’s a real honor. Good afternoon, everyone on the forum. I’m Erica Barnes. I’m the Executive Director of the newly formed state agency, the Minnesota Rare Disease Advisory Council. Our mission is to improve care for the 1 in 10 Minnesotans that are living with a rare disease. I’m a white woman with brown hair and glasses. I’m wearing a black suit, silver necklace, and I am cozily office-ing out of my home today. So sadly, Anne’s story is not unique in the rare disease community. Anne, you know this.
And so what I’d like to do is put Anne’s story kind in the context of the rare disease community to help people understand what our community is facing. So finding a clinician with the requisite knowledge to diagnose a rare and complex disease can be incredibly difficult to begin with. So some of our patient communities in the rare disease community have a handful of specialists in the United States. It’s not unheard of for some rare disease communities to have only one specialist. So even just at baseline, it can be very difficult to receive a diagnosis and get treatment.
So when you add network restrictions on top of that, it’s not surprising that individuals with rare diseases face significant delays in receiving that diagnosis and getting to the proper care. In fact, the average time to diagnosis that you’ll find cited a lot of times in the literature is seven to eight years. That can be the average time it takes for a patient to get to a rare disease diagnosis.
Our council did one of the largest surveys ever conducted in the US of the rare disease community, looking for some of those barriers to care. We did that in 2021. And what our survey found was that 29% of pediatric caregiver respondents and 19% of adult respondents reported–and I’m going to read this because I want to get it exactly right, how the survey asked the question–they reported being denied seeing a specialist due to that specialist being out of their network. So that’s why the Minnesota Rare Disease Advisory Council is supporting the bill that Representative Reyer is going to tell us a little bit about, and talk about.
LIZ: Thank you so much, Erica. Thank you to the council for including me today. I’m Representative Liz Reyer, soon to be representing Eagan and Burnsville. White woman with short, grayish-blonde hair and glasses, wearing a dark green sweater, with a blurred background.
This is a bill–the Network Access Bill–has been important to me from the beginning of my first term. I came into the House knowing that our healthcare system is not set up to serve people. It is not set up to address health issues or to keep people healthy, just because of the bureaucracy and its existence for the profit motive–nonprofits notwithstanding.
So to me, my mandate is to address that in systemic ways, through working for health care reform. But that’s long and slow, and we can’t let children like Leo have to wait while we get through those solutions. So the other part of the work I think is really important, this is a classic example where we have the health care available in our state, or in our country. We have artificial barriers that are keeping people from taking advantage of it and being able to use it. So this bill does exactly that. It takes out the barriers for people who need to see some of those very rare specialists, especially for kids who need that with urgency for diagnosis. I’m really proud of this bill, the collaboration that we’ve been doing, and I am going to be working really hard to get it through this coming session. Thank you so much, again, for having me.
ERICA: Thank you, Representative Reyer. And as I’ve thought about this bill and listening to Representative Reyer, Anne, I just wondered if you could talk a little bit about what would it have meant to your family? And as I listened to your story and all of the difficulty you went through with getting Leo to be able to be diagnosed, and a specialist, what would it have meant for you and your family if this bill had been in place when you went through that diagnostic odyssey? And we call it the diagnostic odyssey in our community. I think the rare disease community is the only community to use that term, because it is such a journey. So what would it have meant to you if we’d had this bill?
ANNE: Well, thank you again, too, for having me today, and the Minnesota Council of Disability. I appreciate it. I think what this bill would have done for our family is it would have sure been less stress on our family during an already stressful time of trying to deal with our sick child. There would have been less of a financial burden on our family during this time. And one of the main things, too, is I think it would have been a lot less stress on our pediatrician during this time, because she had–she told us after the fact that she really did–she knew something was wrong with Leo, but she knew she had to jump through so many insurance hoops to get us to see the specialist that he needed in a timely manner.
And I think that–I don’t want to say it tied her hands, but I know it hurt her, knowing that she wanted to get this child seen and helped, but she knew there were all these boxes that she needed to check off to do that, and she did it as quickly as she could, and she was there for us. But there are some pediatricians out there that don’t see it that way, too. And I think when you put another barrier of insurance issues that they have to go through, it’s hard on the child, as well as the family.
And that’s the other thing I think we should all remember, is that all this time, and money, and waiting, Leo was really suffering in silence. And I mean, that’s the hardest thing as a mom to get over, and to think of. And as any parent knows, you don’t want your child to suffer at all.
ERICA: Wow, that is such a good, you know, thought, that it’s not just for the family. Sometimes we forget that those pediatricians and those clinicians also want to get patients to the right care, and to the appropriate care, and it can be a burden on them, as well. And an emotional burden, it sounds like, from what you say from your pediatrician.
And it also sounds like, you know, as I hear what you’re saying, and as I engage with families just like yours, Anne, every minute that we have an unnecessary delay to getting a child to the correct care is a minute that that child is suffering, or that that adult is suffering. And so I’m so thankful you’re willing to take what you went through with your family and help us solve these systemic issues.
ANNE: I appreciate that there is a bill out there that’s going to try to do this for families like ours.
QUINN: Well, I hate to cut in, because there is so much to discuss.
ERICA: I was just getting warm.
QUINN: I know. We’re just getting warmed up, the four of us. But there are so many amazing things to talk about today, and so I know this conversation will continue. You know, thank you, Anne and Leo, Erica, and Representative Reyer for this conversation today. We look forward to the day when families that face rare diseases are able to access the health care that they need and deserve.
So now, sadly, but happily, I’m going to turn it back to Trevor for our next segment.
TREVOR: Thank you, Quinn. Our next segment highlights MCD’s state agency partnerships. To talk to you about the importance of hearing aid affordability is Government Relations Director of the Minnesota Commission for the Deaf, DeafBlind, and Hard of Hearing, Alicia Lane.
SPEAKER: Hearing Aid Affordability.
ALICIA: Hello, I’m Alicia Lane, the Government Relations Director for the Minnesota Commission of the Deaf, DeafBlind, and Hard of Hearing. I’ve been deaf since I was a baby, and I’m communicating with you in American Sign Language. The voice you hear is that of an interpreter. To describe my appearance, I’m a white Hispanic woman with dark hair pulled back, brown eyes, glasses, and wearing a black top. I’m standing in front of a black background.
Here at MNCDHH, much of our focus is on communication access for the 20% of Minnesotans who identify as deaf, deafblind, or hard of hearing. We all can agree that for most people, being able to hear clearly is important for communication.
Indeed, 80% of hearing loss cases can be treated with hearing aids–yet only one in four people who could benefit actually use hearing aids. One in four. For older adults without hearing aids, over a third identify cost as the biggest barrier. The cost of one hearing aid averages $2,000, and most people need two. That means $3,000 to $6,000 for both ears. Medicare and private insurance plans typically don’t cover hearing aids. Oddly enough, hearing aids are one of the only durable medical equipment–DME–expenses not covered by insurance or waivers. Currently in Minnesota, insurance is required to cover hearing aids for children 18 and under.
And recent FDA regulations permit increased sales of over-the-counter–OTC–aids, with a goal of bringing prices lower. Here’s the catch, though, over the counter sales are restricted to only those with mild to moderate hearing loss. That means Minnesota has an affordability gap for adults with moderate to profound hearing loss. For this group, hearing aids require more power, plus they require more specialized expertise for fitting and customizing to the consumer’s hearing loss. This adds to the cost.
Minnesota’s insurance mandate for children was a wonderful step forward. Of course, children with hearing loss who reach age 18 don’t magically become hearing.
The average lifespan for a hearing aid is five years. Replacements may be needed sooner if a person’s hearing level changes, or the demands of their environment change. For example, taking a new job with a different responsibility, or becoming a new parent are environmental changes that could require updated hearing aids. Young adults entering college are at high risk of losing access to hearing aids before they’ve completed their studies. I personally remember many of my young friends going from two aids to only one.
Employment discrimination against those with hearing loss is still rampant. As a result, this population’s ability to afford hearing aids is severely reduced.
Aging people who become socially isolated due to untreated hearing loss are at greater risk for dementia, possibly up to five times greater risk. Hearing loss is listed as a top risk factor for dementia.
A bill introduced in 2019 sought to expand the hearing aid insurance mandate to all ages. It’s time to revisit this bill. We are also exploring the possibility of a voucher program and, if needed, funding for cost benefits analysis to expedite the process. We urge Minnesota’s legislators to close the gap for affordable hearing aids. Thank you to Minnesota Council on Disability for partnering with us and providing this opportunity to get the word out about this critical health issue. Please reach out to MNCDHH if you are interested in authoring or advocating for hearing aid affordability. Thank you.
TREVOR: Thank you, Alicia. MCD is looking forward to working with the commission for a successful session. The disability community is honored to have our Governor and Lieutenant Governor with us today. Please welcome our Governor, Tim Walz, and our Lieutenant Governor, Peggy Flanagan.
SPEAKER: Governor Tim Walz and Lieutenant Governor Peggy Flanagan.
TREVOR: Hello, everyone, again. I am being told the governor is on his way, so in the meantime, I will be happy to share some things with you today. I would like to remind everyone that our full legislative agenda will be on our website. So unfortunately, we were not able to talk about everything during this legislative forum that we are supporting in the next legislative session. So if you would like to learn more about our public policy agenda, please go to our website, and it will be there.
As David Dively said, next year in 2023 will be the Minnesota Council on Disability’s 50th anniversary. The Minnesota Council on Disability was founded in 1973, which also happens to be the same year that the Minnesota Human Rights Act was passed. So it’s a big year for disability rights next year, and we look forward to celebrating with all of our partners and Minnesotans with disabilities across the state.
Minnesota played a really large part in passing the ADA. Minnesota has always been a big disability leader since 1973, when the Minnesota Human Rights Act was passed, which predates the ADA by 17 years. And that inspired Minnesota Senator David Durenberger to introduce the Americans with Disabilities Act legislation in Congress, which passed in 1990.
So one of the things that we did over the past six months or so is that we had a legislative forum survey just to help guide our legislative agenda for next year. And I wanted to share with you all the results of that survey. We had over 300 responses from the state fair, and from online.
So the number one response from these 300 recipients was saying that human services was the number one thing that should be a priority for next year. And that includes waivers, and supports, and things like that. And so we’ve made sure that our legislative agenda reflected that.
Number two was disability human rights, and number three was accessible and affordable housing.
And number four was the home care and PCAs.
Number five was health care and health care access, and number six was employment.
Number seven was accessible transportation and public transportation.
Number eight with education.
Number nine was public accessibility.
And number ten was accessible state parks.
So our legislative agenda was really guided by the results of this legislative survey. We also met with lots of different constituents and people with disabilities across the state to help guide the legislative agenda for next year.
One of the things that we did not get a chance to include in today’s forum, but now we have a little bit of time to talk about, is–speaking of the Minnesota Human Rights Act–we’re hoping to amend the Human Rights Act to include episodic disabilities. And I bring this up because this proposal would clarify that episodic disabilities are covered under the Minnesota Human Rights Act. This policy resulted from a US district court judge who ruled–Josianne Mell v. The Minnesota State Agriculture Society that because the Minnesota Human Rights Act does not have specific language around episodic disabilities, but the Americans with Disabilities Act does, it means that the Minnesota Human Rights Act is intentionally omitting episodic disabilities from the state disability protections.
This means that the state of Minnesota cannot intervene in cases that involve episodic disabilities, and those with episodic disabilities must go to the federal government to have their cases heard. And we believe that the state of Minnesota is better equipped to help Minnesotans with disabilities, ensure their rights, recognize and enforce. This proposal would bring the Minnesota Human Rights Act in line with the ADA and allow the state of Minnesota to assist Minnesotans with episodic disabilities in discrimination cases.
So that’s one of the things that we’re definitely focusing on next year, and I would hope that if anyone here does not see something that they care about reflected in our legislative agenda, to please reach out to me.
I am happy to meet with a constituent to learn about different disability issues, and to really learn more about what Minnesotans with disabilities across the state care about, and the issues that really mean the most to them. And so again, you can reach out to me by emailing me at Trevor–T-R-E-V-O-R–dot Turner–T-U-R-N-E-R–at state.mn.us. And please send me an email.
And we are still waiting for the governor. I’ve been told that the governor is now actually here, so I would like to welcome Governor Walz to come and take it away. Thank you, Governor Walz.
WALZ: Good afternoon, Trevor. Good afternoon, everyone. Governor Walz here. I’m speaking to you from my office in the capitol. I’m wearing a blue suit, white shirt, and a light blue tie.
I just wanted to–first of all–Trevor, thank you. Thanks, David. Thank you, Minnesota Council on Disability for making Minnesota a state where everyone is included. Where equity, inclusion, and accessibility is the air that we literally breathe. And the work that you do around putting together legislative priorities to ensure that those goals are translated into actionable items that do improve people’s lives, and making sure that the folks most impacted by the decisions we’ll make and have made are those at the table.
So I can tell you that the input from the work you do today will inform our budget. I think you saw last year in our supplemental budget, in our MDH budgets, your priorities were reflected with that. It was unfortunate that our legislative session ended in gridlock last year. I can assure you that will not happen this year, and I also can assure you as you’re thinking about this, our state finances being in such a positive space that that budget surplus is meant to improve the lives of Minnesotans, and this organization is going to play a key role in making sure that we’re funding some of these programs in a manner that you know needs to be done.
So our budget will be released from the Lieutenant Governor, and myself, and the administration office on January 24. That’s dictated by law. We will be working together over that next month, or five weeks, or so to make sure that the results of this discussion today, the results of the work that the group is doing will be incorporated into our request. And then we will work together, as the Lieutenant Governor often says, both on the inside and outside work that needs to be done to move legislative priorities.
And so I hope you’re viewing this legislative session as a transformational opportunity to improve the lives of all Minnesotans.
I hope you’re viewing it as an opportunity to keep our promises as they’ve been made, and have a voice that is truly reflective of all Minnesotans.
So I’m grateful for all of your work. I’m grateful for the opportunity to be able to share in this work. And I have to tell you, I’m looking forward to some pretty significant bill signings this year that improve the lives of Minnesotans. And I know that the Lieutenant Governor and I, the idea of working together on these very important issues, is something that lifts us up every day.
So again, Trevor, David, and everyone on the call, thank you. I’d like to turn it to my partner in this, and someone who understands this legislative work as being in the Minnesota legislature, and what this important time is as we write budgets and policy proposals means, Lieutenant Governor Flanagan.
PEGGY: Well, thank you so much, Governor, and good afternoon, everybody. I’m Peggy Flanagan. I am a Native American woman with long brown hair. I have black glasses on. I’m wearing a cream-colored sweater and a yellow top, standing in front of some artwork of clouds and Senator Wellstone.
So I would like to just echo everything that the Governor just has said, and also just express my gratitude to the staff of MCD, the leadership, of course, and thank you, just David, your continued leadership as a member of the external leadership team, the advisory team, has been really powerful, so thank you for showing up, and thank you for doing this work.
And we are in a position where we have an opportunity–this legislative session, to do a lot of good work. So one I think of also, just advocates, and the role of advocates, I consider myself to continue to be an advocate, even in this role as Lieutenant Governor, because we all have to move the things that we really care about. I think a lot about Nikki and the council. And I think for Nikki, who as a fellow advocate, I would see Nikki in committee hearings, and then as a legislator, and now as LG, Nikki is everywhere, and the council is everywhere. And it is time for that work to just continue. People need to know that we are in these places where decisions are being made.
So Nikki uses her voice and her own lived experiences to ensure that Minnesotans with disabilities are part of policy making, and I am so grateful for it. We have a lot of important work that lies ahead for our administration, and for all branches of government in 2023. And as a Native American woman working in state government, I understand in many ways what it means to work in a system that wasn’t designed by us or for us, and in many ways was created to keep us out of a lot of these systems, which is why it’s important to our administration, and to me personally, to make sure that state government works better for all Minnesotans, to make sure that everyone is at the table where decisions are being made.
And you know that better than most, especially when we lift up voices of Minnesotans with disabilities, from Black, Indigenous, and communities of color, that matters tremendously. This is an intersectional lens, and too often we fail to acknowledge that, understand, and seek to learn as Minnesotans. And that is why this work is so important. We have to ensure that all communities are represented, and that’s why I’m so grateful for the council. You all do this work, and partner, and push, and it really matters.
And so during our time in office, as we’ve been here for the last four years and now can continue in this role, it’s an opportunity for us to even strengthen those partnerships even more, and making sure that the perspectives of this council are part of the work that we do.
So continuing to work together across systems to break down these barriers, to know that there are things that are in place that are limiting people from living their full lives, and it is our job to do what we can to try to remove those barriers. No one should worry about how they’re going to get from point A to point B because there aren’t enough affordable or accessible options for transportation. No one should have to wonder if they’re going to be able to access a PCA during a shortage of healthcare professionals, and no one should have to worry about how they can afford to live in a home that offers the accommodations that they need to be able to live safely and comfortably each day.
So that’s why it’s so incredibly important that everyone who is in attendance today virtually, in this virtual room, understands the value and the impact of your voice. Please do not let the conversations stop here. It matters tremendously that you connect with your legislators. As a recovering legislator, I can tell you that those personal conversations in community, those personal notes and emails, they really make a difference.
And no one is a better advocate for the community than you, and to know how powerful your perspective is in the capitol, and I love that Trevor has an image of the capitol directly behind him, as just a reminder where these decisions get made, that we have to show up in the ways that we can in these spaces. So we are with you, and we want to continue to be partners in this work with you, where we can have an inclusive and responsive Minnesota that better serves members of the disability community. And I’m really hopeful that we can get there, And I’m really hopeful that we can get there in continuing our work with MCD.
So thank you so much for having me. I will pass it back to Trevor, but just really excited for 2023. And I hope that you all are, too. [foreign language]. Thank you so much.
TREVOR: Thank you so much, Lieutenant Governor Flanagan. And thanks again, Governor Walz, for stopping by. It really means a lot to us. And congratulations on your re-election. We look forward to working with you all more in the next four years, and thanks again.
So now we’re going to move on to our next policy discussion. I’m going to toss it over to our ADA director, David Fenley, to talk more about accessible and affordable housing.
SPEAKER: Accessible Affordable Housing.
DAVID F: Hi, I’m David Fenley, the Minnesota Council on Disability’s ADA Director. I’m a white male with a mustache, short brown hair, a blue collared shirt, and a blurred background. I’m here today with Justin Smith, citizen advocate, and Representative Liz Reyer. I’m happy to introduce our next segment, Accessible and Affordable Housing, but first, here is Julia Page to introduce Justin.
JULIA: Hello. My name is Julia Page. I am a white woman with short brown hair. I am wearing glasses, and I’m wearing a beige sweater. I am the Public Policy Director for The Arc Minnesota. The Arc Minnesota promotes and protects the human rights of people with intellectual and developmental disabilities.
We are working on a policy change in Minnesota to address the need for more affordable and accessible housing. A major barrier for people with disabilities who want to live in their own home is finding one that is affordable and accessible. Often, you can only find one or the other, and even that is a daunting task. Before we get into the details of the policy change, I would like for you to hear from disability advocate Justin Smith, and how this issue has impacted him.
JUSTIN: Hi. My name is Justin Smith. I’m a white man in my mid-twenties, wearing a burgundy shirt. I use a wheelchair to move around and a communication device to help me speak. I am in my apartment.
Two years ago, I started a quest to find an affordable, wheelchair-accessible apartment, and ran into too many barriers. First, there is simply a lack of accessible and affordable housing. I recently did a search of apartment vacancies in Ramsey County. After filtering for low-income, wheelchair-accessible units, and removing the 55+ apartments, because if I wanted 55+, I’d just keep living with my parents.
Of the 5,055 current vacancies, there are two apartments that might be available, and might work for someone using a wheelchair. Neither look as if they would work for me. My best chance of finding an accessible apartment with a roll-in shower was looking at brand-new developments, yet that is no guarantee of success. I quickly discovered that there are no consistent criteria for what qualifies as wheelchair-accessible. As part of my search, I toured a brand-new, 98-unit building. It had one studio and one one-bedroom apartment that they considered to be accessible. 2%.
Wow. As you can see in this image, I’m barely able to fit in the bathroom in my power wheelchair, and it had a bathtub instead of a roll-in shower, as needed by most wheelchair users or people using walkers. I may be able to get into a building, ride in an elevator, and get into an apartment, but wouldn’t actually be able to live there.
Here’s the thing, I do not want to live in a group home or segregated apartment building where everyone has a disability. I use self-directed services so that I can choose my own support staff and train them to help me with my individual needs. I want to be part of an inclusive community with people of all ages, abilities, and backgrounds.
Unfortunately, developers don’t seem to be designing many spaces that let me be part of their community. We need to design for accessibility from the start, and people with disabilities need to be part of that process. I eventually lucked out. One of the places I contacted was just being built and did have a floor plan of the wheelchair accessible apartment for me to look at. The apartment manager was extremely helpful and said the apartment would have a roll-in shower. I put down my first deposit on my apartment with the agreement that I could check it out and make sure it would work for my accessibility needs. The apartment is not ideal, but it’s workable.
And it’s mine. It’s important to know the only reason I am in this apartment today is because I was lucky enough to talk to the right person at the right time, and that I had enough savings in my ABLE account to help me pay my rent this past year. And I’m now able to remain in my apartment because I just got a Section 8 housing voucher. Here’s why it’s worth making more affordable and accessible housing. I’m living in my community. I’ve reconnected with old friends. I choose to live independently so that I can write, work on my books and blog, go listen to live music at First Avenue, and watch lots of soccer matches.
I choose to live independently, and I can, if I have the accessible housing and supports I need. If people with disabilities are supposed to be able to live in our communities, where are we supposed to live if we’re not building more accessible, affordable apartments that actually work for people with disabilities, that are integrated and included in our community? Where do we live? Thank you for listening to my story.
DAVID F: Thank you, Justin. And now, the discussion.
JUSTIN: Hello, Representative Reyer. Thank you for being here today to discuss this important policy change.
LIZ: Pleasure to be here, Justin. Hello, everyone. I’m Representative Liz Reyer from Eagan. I’m a 65-year-old white woman with short, grayish-blonde hair, blue eyes, and glasses, wearing a dark green sweater and silver necklace, and have a blurred background.
Housing that’s accessible and affordable is a key priority of mine, so I’m proud to be an author for such an important and necessary policy change for Minnesota.
JUSTIN: What would this policy change do?
LIZ: This policy change would ensure, if we’re using state dollars such as housing infrastructure bonds, to build housing in Minnesota, that we’re building housing that works for everyone who needs it. What it does is increase the level of accessibility that is already being built using these state dollars to include a roll-in shower. Currently, it’s only optional to include a roll-in shower, even under the most accessible building code.
Another important change is to address accessibility beyond mobility to include sensory accessible units. This policy change would also ensure that sensory accessible units are included in projects funded by housing infrastructure bonds. Sensory accessibility would mean that for 5% of units, there would be soundproofing between shared walls, no fluorescent lighting, and low fume paint and carpet glue.
JUSTIN: Can you tell me more about how this policy change came to your attention?
LIZ: Yes. I had heard from my constituents and members of the disability community that accessible and affordable housing was a major problem in Minnesota. The Arc Minnesota came to me to author this policy change last year. This policy change was inspired by the work of disability advocate Judy Moe, who also happens to be a council member of the Minnesota Council on Disability. Judy and her daughter, Raven, who uses a wheelchair, struggled to find accessible housing, which led them to be homeless for a short period of time. Judy advocated for a change in the city of Richfield to ensure that not only are accessible units being built, but they’re actually accessible to those who need them, specifically the need for a roll-in shower.
JUSTIN: I heard about Judy and Raven’s work on accessible housing when my dad was serving on a homestead housing subcommittee, building upon their working originally, so that it’s statewide, and not having to get changes municipality by municipality will be amazing for those of us searching for accessible apartments across Minnesota.
What else do you think needs to be done to make sure people with disabilities have affordable, accessible housing?
LIZ: Yeah. We need to be sure we’re building and maintaining our affordable housing stock, addressing the critical shortage in housing statewide. We also need to expand rental subsidies for people below 30% AMI. Addressing affordability, as well as accessibility, is key to stabilizing housing in the community for people with disabilities. We have the resources in Minnesota. We just need the political will to make these important investments.
Justin, thank you for sharing about your experience earlier. It sounds like you drove into a lot of brick walls throughout this process, and addressing affordable, accessible housing is just one piece of that puzzle.
JUSTIN: I agree. The barriers for people to live in their own homes and in their community feel insurmountable, and I think lead people to have no choice but to live in more restrictive, costly settings, like group homes. I have had to navigate various programs like SSI and other benefits, such as SNAP food benefits, on top of all the other services and supports I have to manage. Right now, the biggest issues endangering my ability to live independently are finding staff and having a consumer-directed budget that pays for the amount of staffing that I need. It’s hard to compete for direct support staff when paying people under $20 an hour with virtually no benefits.
My dad or mom spend all of their night shifts with me, and I go to my family’s home on the weekends because I don’t have enough staff, and the consumer-directed budget is 60% of what I need. We need self-directed funding and services to be comparable to provide our services for those of us who choose them, so that we can live in our communities and choose the staff and supports we need. I grew up expecting that I’d be included and have choices in how I live.
We need the state to ensure that people with disability have the same opportunities and access to living in their own homes as any other settings. The brick walls I kept driving into and barriers I continue to face are wrong. They do not match up with the goals of our state, to build an inclusive Minnesota, where I have a seat at the table. Trust me, you just need to create the space. I’ll bring my own chair.
LIZ: I would love to have you there at the table. Thank you for sharing that, Justin. Is there anything else you’d like to share today?
JUSTIN: Here’s the thing. I am an exception. I am lucky enough to have parents who could guarantee my rent, so that I could move into the first and only apartment I found that was wheelchair accessible. I had savings in an ABLE account to help me pay rent for almost a year until I got my Section 8 housing voucher. Most people won’t have these resources, and I’m scared that they just fall through the cracks and have no real, meaningful choices in finding an affordable and accessible home, like I did. We can do better. We must do better.
LIZ: Thank you so much, Justin. You’re right. You should be included and have choice in how you live. I want to work with you beyond just this specific policy change to ensure that’s a reality for you, and all people with disabilities in Minnesota. Thank you for the advocacy you’re doing. I hope my colleagues here will join me in this effort.
JUSTIN: Thanks, Representative Reyer.
LIZ: Okay, thank you.
DAVID F: Thank you, Justin, for being a disability advocate, and thank you, Representative Reyer, for being part of this conversation.
Our next segment will be moderated by council member Tammy Berberi.
SPEAKER: Inclusive Higher Education.
TAMMY: Welcome, everyone. I’m Tammy Berberi, MCD council member, and I’m happy to join this event today from my office at the University of Minnesota, Morris, where I teach. I’m a white woman with graying brown hair, wearing a tweedy green jacket and glasses. I’m also a disabled person, whose parents and other champions fought for my right to learn alongside my peers. Almost year by year, I could tell you how advances in civil rights for people with disabilities made possible the life I lead today.
I’m pleased to participate in this segment, inclusive higher education, a conversation between Mary Hauff, representing the Minnesota Inclusive Higher Education Consortium, student citizen advocate Gage Robinson, and Senator John Hoffman.
MARY: Thank you. My name is Mary Hauff. I’m a white woman with dark brown hair. I’m wearing a slate blue sweater.
A national inclusive higher education movement began in 2008 to expand college options for students with intellectual disabilities. Minnesota is lagging behind. Currently, there are four Minnesota college options with an enrollment capacity of 100 students for the estimated 5,000 prospective Minnesota college students with intellectual disabilities. Students with intellectual disabilities who attend post-secondary education are more than twice as likely to be employed, live in homes of their own, and rely less on government supports like SSI and Vocational Rehabilitation.
Widening the pathway to post-secondary education will ensure Minnesotans with intellectual disabilities have the opportunity to pursue their careers, live the life of their choice, and more fully contribute to their communities. This will strengthen the Minnesota workforce, contribute to the Minnesota economy, and lead to long term cost savings for the state. The Minnesota Inclusive Higher Education Act addresses the opportunity for Minnesota to join the states that are leading on inclusive higher education nationwide. The proposed legislation establishes an Inclusive Higher Education Technical Assistance Center and grants for Minnesota public colleges and universities.
We are determined to widen the path for students with an intellectual disability to have access to post-secondary education, a gateway to opportunity that has been narrow and impassable for far too long. We are advocating for the passage of the Minnesota Inclusive Higher Education Act to support Minnesotans with an intellectual disability and make inclusive higher education a priority.
I now would like to introduce Gage, a prospective college student, to share his story.
GAGE: Hi. My name is Gage Robinson. I am a white man with dark hair and a beard, wearing glasses and a burgundy shirt. Thank you for giving me the opportunity to speak today.
I recently completed high school and am in transition. It has always been my goal to go to college. And I’m interested in public speaking, web design, non-profit organization, and cabinet making and woodworking. I would like to explore careers in these interest areas. School has always not been easy for me. In my younger years, I spent most of my day in a self-contained classroom with other students with disabilities. I love to learn. I just learn differently, and it may take me a little longer.
I love being in classes with my peers and friends without disabilities. I want to go to college to be with students my age, create friendships, and be a member of the campus community. Currently, my options are limited. I need more choices to go to college and be successful. The transition options through my high school does not include taking college classes or being with peers without disabilities. I should have the option of going to college to learn, make new friends, and gain new skills. Inclusive higher education will provide me with the supports that I need to be successful. I want to be seen as capable. I am. I want to keep learning. I am a lifelong learner. I am more than a disability.
I am a son, a brother, a nephew, a friend, an athlete, a self advocate, a public speaker, a non-profit leader, a woodworker, a prospective college student. Given the opportunity to go to college, I can succeed and have the career of my choice. I am advocating for expanding inclusive college options for students with an intellectual disability, like me. All Minnesotans with an intellectual disability are worth it. Thank you.
TAMMY: Thank you, Mary and Gage. We’re looking forward to a good conversation with both you and Senator Hoffman. Senator Hoffman, when you address the audience, please provide an audio description of yourself. And to get us started, Mary, you want to go ahead?
MARY: Yes. Thank you, Tammy. Senator Hoffman, we want to welcome you to our conversation. And we thank you for your ongoing support for the Minnesota Inclusive Higher Education Act legislation. We look forward to working with you this session, and as the session is fast approaching, we’d like to hear what you foresee for the legislative session, and the passage of our proposed legislation.
JOHN: Thank you, Mary. John Hoffman, Senate District 34, Champlin, Coon Rapids, Brooklyn Park, Rogers, and Dayton, Minnesota. I’m in a room, I’m in an office building. I’m wearing a gray suit coat, white shirt. There’s a TV monitor behind me, but it’s not on. It’s actually a projection screen. And there’s a conference table behind me. And I’m looking out a window at beautiful downtown Ramtucky, Minnesota. If you’ve been here, it’s the gateway to the west.
So it’s good to be here, Mary, and as you look at the session, who would have thought that here we are, November 8, that all of a sudden we would be in the majority. It’s a slim majority, 34-33 in the Senate. And the House has retained their majority, as well.
And the governor got re-elected. So it’s the first time you’ve had three bodies of the same Democratic Department of Labor party since to 2013, right, 2012 election. What does that mean? I think that the message to people was to, you know, what are we going to do? It’s time to govern, right? I like the fact that you have a 34-33 Senate, because that would really say to us, you know what? When Paul Wellstone said we all do better when we all do better, we all means we all, right? We’ve got to be inclusive about our conversations.
I know as the incoming Chair of Human Services, I don’t know all my jurisdictions, but I will guarantee you this–intersectionality and conversations about how we’re doing and what we’re doing and how we’re including people with disabilities across the spectrum is going to be key and priority in my life. And it has been since my days in the Bush administration in 2001 to 2004, when I was on the Federal Interagency Coordinating Council, and as I was a vice-chair chair of the school board.
So now you’re looking at the session. You can say everybody starts jumping up and saying, we’ve got a big surplus. $17 million, billion dollar surplus, right?
Let’s be very clear about a couple of things. $1.184 billion of that was underspent money that we had already budgeted to the Department of Human Services, to be used for individuals that are going to be under that umbrella of needing services and supports in the Human Services world. And that includes folks that are living in group homes, elderly services, people with disabilities, anybody that fits under the 256b statute, 245d, 245a, 245g. Right, that all fits into that bucket. Go look it up, otherwise I’m going to spend 40 minutes explaining every one of those statutes to you, Mary.
But in this case, you know, you say if $1.184 billion was underspent, what about the FMAP, the Federal Medical Assistance Program? Oh, well, that, add another $730 million to that. That should be in that same bucket, right? $1.825 billion is the simple math I did, of money that is being shown in that forecast, the $17 billion, should have been utilized within the bucket of services of the people we care most about in Minnesota. Why is that an issue for me? You know, we have 20% of our hospitalization are folks that clearly should have been in nursing homes, or should be on their own. Home health care services are part of that, that bucket of services pieces in there, as well.
And you start to think, okay. Why couldn’t we do what we’re doing? We have a workforce shortage, 53,000 people, job vacancies within the caregiving places in Minnesota, right? So I think what I’d like to see happen, Mary, is the bill that we had passed overwhelmingly in the Senate last year, that would have stabilized some of the long term care industries, I believe, we pull that bill back off the table, reintroduce it first thing, first day, and try to get some fast tracking done to help stabilize our caregivers in Minnesota. Let’s keep it very succinct, very important. The essence of that bill is going to be clearly about caregivers, right?
Then we can start having the discussion about what’s next regarding services and supports, and what needs to be fixed in the state of Minnesota. So you asked my opinion on that. That’s just where I think I’m at with that one. So I hope that kind of gives an overview for you, Mary, what you were seeking.
MARY: Yeah. Gage is here, and if you have any questions specific for him relative to attending college and assistance in college, we would love to have that kind of dialogue with you while we have the opportunity today.
JOHN: Absolutely. What’s the most important thing, Gage, when you talk about college? What is the most–two things. What’s the most important thing that you find that’s important to you in college, and then I want to know what your funnest thing to do in college is. What’s the most important, and the most fun that you’re finding in college?
GAGE: I want to be a college student and become independent like other people my age. I want to be with friends without disabilities. I want to go–I want to learn. I want to gain more skills. Gain skills for my career and a job I want.
JOHN: And your job, what would be your–if you could wave a magic wand, what would be your ideal job?
JOHN: I love it. Really?
JOHN: That’s amazing. That is absolutely amazing. Good for you. Woodworking is amazing. So that’s something I couldn’t do. You have to have like time, patience, and you’ve got to know how wood seams work, right? Isn’t that kind of what you’re finding? Tell me about that.
GAGE: Yeah. I like working with my hands. I have taken woodworking and construction classes. I have worked on a house remodeling project. I know this is an interest area for me.
JOHN: Wow. Remodeling? Like what? What did you do in the remodeling as a woodworker? What was some of the fun things that you did?
GAGE: Stain, paint, and… And help put cabinets in.
JOHN: So you’ve got to have an eye for that, the cabinets to see–did you make sure that they were level, or were they–
JOHN: I could never put in–plumb? What’s the word woodworkers use? Plumb? Is that the word? Is that the word you use, plumb?
GAGE: I think so.
JOHN: That’s awesome. That’s awesome. Well, thank you for sharing that.
GAGE: You’re welcome.
JOHN: I love the fact that you–you know what? You know, disability is just a normal, natural occurrence in Minnesota, and in the world, and in the nation. And you’re saying, you just want to be there and do what you want with other people. There’s an inclusivity in that, and I appreciate your words. And I appreciate you. So thanks, Gage.
GAGE: Thank you.
TAMMY: Thank you, Gage, and Mary, and Senator Hoffman. Gage, I’m so excited. I just feel like you have such a bright future ahead of you.
And I want to move right along to our next segment, which is about home care workforce shortage, and it features citizen advocate Damon Leivestad. Thank you all so much.
SPEAKER: Homecare Workforce Shortage.
DAMON: Hi. My name is Damon Leivestad. I’m a white male with a beard, dressed in a gray shirt and a Minnesota Gophers knit cap. I’m a 49-year-old mechanical engineer from Plymouth, where I live with my parents, David and Diana. I was born with a neurological disorder called spinal muscular atrophy, and I’ve been in a wheelchair since I was 10 years old. I’ve been using PCA home care services since 1992.
The shortage of home care workers is growing at a staggering rate, which has had a tremendous impact on those of us who rely on home care services. The time, energy, and difficulty of finding workers for those people with disabilities feeling very vulnerable burdens them in times without hope.
This in turn inhibits our ability, job security, and stability in our lives that most people take for granted. Due to our inability to hire and retain quality home care workers, our health, safety, and daily needs have not been met. Without our basic needs being met, it’s impossible to know what the future will look like. Planning for employment, time with family and friends, or getting involved in our communities has been set aside because survival has become our primary task.
Recently–less than two weeks ago, actually, I lost a long-time home care worker over an illness. One of the reasons she stayed as long as she did was because she had two young children at home.
Her husband worked from home three days a week and watched the kids while she was there. And she would be with the kids the other days. That allowed them to save close to $12,000 a year in daycare, which made up for the low wages she made working for me. Her kids, however, are in school full time, as well, so she found a better paying job with retirement benefits, so she could start planning for her future.
Due to this and the overall difficulty of finding home care workers, I began to rely more and more on my parents to provide for my care. This solution, however, is not sustainable, because my parents are now in their late ’70s, and have much less ability to help me than they once did.
Meeting my care needs that are easily done by one home care worker require both my parents working together to accomplish. This has left me increasingly concerned about their and my safety, as well as what the future has in store for me. Today I’m fine, but what about tomorrow, next week, or next year, when my parents are no longer able to care for me? Will I finally have help to continue to live at home and to work, or will I need to arrange for a living facility? I’m not alone in this concern.
There’s thousands of other disabled Minnesotans who are in similar situations. As a result, I’ve become increasingly active in advocating for changes in home care services that I feel I needed to address in the home care crisis. Together, I hope we find a solution to make home care work a desirable career opportunity with sustainable wages and benefits to attract quality, reliable home care workers. Thank you.
HOPE: Thank you, Damon, for your powerful statement. Damon sends thanks to everyone for being here today. He was not able to join us live.
Hello. I’m Hope Johnson, council member of Minnesota Council on Disability. I’m a white woman with brown hair, wearing a dark green blouse and a black sweater. I have a blurred background of my workplace office in Waseca.
This segment’s topic is home care workforce shortage. The disability community has been in a home care workforce shortage crisis for several years. Today we are having a conversation based on Damon’s story, with David Dively, Senator Carla Nelson, and myself.
I am a social work professional who manages county waiver programs, and have seen this shortage take its toll on not only people with disabilities, but also for the personal care workers themselves.
Thank you, Senator Nelson, for joining us today, and discussing this critical issue around the home care workforce shortage. Damon is a strong advocate, as many citizens are, especially for PCA and home care services, and disability support professionals whose work allows Minnesotans with disabilities to live, play, and work independently in the communities of their choice.
Apologies, it looks like David’s having some issues with his microphone, so David is going to discuss, if we can get that working, some ideas to increase the workforce in this area. You know what, we still can’t hear you, David. In the meantime, I’ll try to carry on.
So some advocates such as Damon shared some ideas to increase the workforce. This includes allowing home care workers to buy into Minnesota Care so they have health insurance benefits, as well as grants for tuition to support people going into these caring professions.
Another idea is loan forgiveness programs for PCAs, creating seniority tiers that allow pay increases to increase with expertise, as well as allowing increased rates for RNs, LPNs, and others with additional credentials and licenses to encourage home care workers to pursue more training and education.
Senator Nelson, as a member of the Senate Human Services Committee already, you have heard these issues and concerns brought up. What path do you see forward in the legislature to address these issues?
CARLA: Thank you so much for having me, Hope. First, can you hear me Okay?
HOPE: Yes, I can.
CARLA: Oh, wonderful. Well, it’s a joy to be with you today. Thank you for your great work. And yes, it is very clear–I think everyone in the legislature, I think, many, many Minnesotans realize the challenges that our home health care settings are enduring. Of course, that includes our assisted living homes, our nursing homes, our group homes, home care, DTNH, palliative care, hospice. All of those settings for people that are so near and dear to us, and who need that support. And the problem is there just aren’t enough workers. There’s a number of issues, but one of them is certainly not getting the number of workers needed to provide the care that we expect, and that Minnesotans deserve.
And so some of the things that were passed last year out of the Senate, I think could be very helpful moving forward with that workforce shortage in our group homes, our disability homes, our long term care nursing homes, and such. And in 2022, the Senate passed–the Senate Republicans introduced a bill for $1.322 billion that would be a budget priority to address those long-term care workforce needs. And again, I mentioned, those areas where it was so important that we get the workers–often it’s a time of life or death. We need to have those trained workers. And I think this need was only exacerbated by COVID-19 and, of course, its after-effects. So I was glad to support that proposal.
What it did is it was about a billion dollars to raise the wages of workers in our long term care, personal care disability waiver, and rate service industries. And specifically, that provided a $1,000 retention bonus for those employees. It also provided hiring bonuses of $1,500 for up to 20,000 new nursing home assisted living, group homes, home care, DTNH, palliative care, and hospice employees. That would have been very helpful. That was about a $30 million cost. The retention bonuses was about a $206 million cost.
And then also, training funds. Provided $30 million for training funds, $1,500 for 20,000 new studies, background studies, training uniforms, to help get those needed workers into these settings. And then another issue that we’ve heard so much about was also included, which I anticipate these things will move forward. That’s what I’m pushing for. This significant investment in the workforce needed, and then also one of the other items that you might recall, certainly, I heard from many of you about it, was moving up the advance disability waiver rate setting change. We need to move that up to April 1.
And as you know, this timing shift will be incredibly important, especially at this time of massive inflation, to help our disability service providers with their cash flow. And it would then ensure the delivery of services to vulnerable Minnesotans. And that was a cost of about $55 million. And let me just say, that’s $55 million that our disability providers need now. And so it’s very important that we do that, of course. And then we also passed an emergency staffing pool. That was a temporary continuation of the emergency staffing pool used for training programs to help expand qualified workers.
And just a couple other things that I would mention, again, one would be the temporary permitting and licensing changes, which would allow previously licensed nurses to temporarily practice in nursing homes and assisted living facilities. And it created an expedited pathway to allow unlicensed employees in an assisted living facility to be more quickly trained, and then provide direct care. I’ve seen that in Rochester work very well. And then, of course, timing is critical, as these changes are so much needed.
And then the last one I’ll mention today is the PACE program, streamlining that so that programs of all inclusive care for the elderly, PACE can model the care for elderly residents of Minnesota, particularly those that are eligible for both Medicare and Medicaid benefits. And this would make the program work together more effectively. It would save taxpayers money, and most importantly, it would help patients more efficiently access the services.
So those are all items that have been well received in the Minnesota Senate, were passed. Great bipartisan support, you just heard from Senator John Hoffman. He was on the Health and Human Services Reform and Policy committees, where I was serving, as well.
And now he’s going to be chair, and he’s been a great champion. And I’m hoping that we will continue with these very much needed bipartisan measures to support the care, the direct care, the training, and the employees that are so needed. And of course moving up that reimbursement date calculation will be helpful, too. So these are all things that I think will be incredibly helpful. Because they were supported with such a bipartisan support in the Senate, in fact, I do not believe–at that time it was a Republican-controlled Senate. Well, it still is until January 3, but what I would say–
HOPE: Sorry to interrupt, Senator Nelson. We are at time, and I appreciate everything you had to say. You said it so nicely, all the wonderful provisions of work that we can move forward in our session. So thank you for your time, Senator Nelson. I appreciate it.
CARLA: Hope, what I just want to close with is that we definitely, I believe, should feel good that these things will continue on, as they were so well bipartisanly supported. They’d be a good model to continue with. Thank you.
DAVID D: That’s great to hear. Thank you.
HOPE: Absolutely. Thank you. Next we have my council colleague, Andy Christensen, introducing our next topic. Thank you.
SPEAKER: Employment and Retention of Employees with Disabilities.
ANDY: Hi. My name is Andy Christensen, MCD council member from Northfield. I’m a white man with a beard, wearing a red sweatshirt. I’m sitting here in my home office. This segment features a conversation between citizen advocate Aaron Weikum and Representative Mike Freiberg. To begin, here’s Aaron’s experience.
AARON: Hello, everyone. My name is Aaron Weikum. I’m a large man with brown hair, a brown beard, and a black shirt. I’m an independent autistic adult and autism advocate, and I also work as a vocational rehabilitation services professional.
I’m here today to highlight the immense barriers Minnesotans with disabilities face finding and maintaining integrated competitive employment. While I’m fortunate enough to be employed in a position I love, this has not always been the case. I’ve lived in poverty for most of my life, and I’ve experienced unlawful disability discrimination in education and employment environments.
In some cases, it has been explicit and actionable, like being told by a prospective employer that an autistic person cannot do a specific job, or being berated and called the “R” word by a supervisor. However, as with racism, sexism, and other forms of discrimination, in most instances, perpetrators go unpunished and victims receive no redress.
About 85% of autistic Americans are not engaged in competitive employment. And most who are, are underemployed, working part time with limited benefits, or otherwise being paid less than similarly situated neurotypical employees with equivalent qualifications.
Connect 700, the state’s initiative to hire and retain public servants like me with communications impacting disabilities at parity with the general population, has not been properly implemented. County and local governments, and other public entities like school districts, where most public sector positions are found, do not participate in Connect 700. And few, if any, have developed equivalent initiatives to recruit and retain persons with disabilities. And in the private sector, where most Minnesota jobs are found, there is no incentive to hire and retain workers with disabilities.
On the contrary, most employers systematically screen out or pass over applicants with disabilities, despite this being illegal and costing them highly qualified talent. There lies before us now a historic opportunity to address this. Despite numerous issues, Minnesota is one of the best states for persons with disabilities to live and work. If we make further improvements and boost our reputation, we could attract a vast, untapped talent pool from other states and around the world to fill much needed positions and improve essential services.
Survey data suggests that employees with disabilities, particularly those on the autism spectrum, are more loyal and productive than any other worker demographic. Many of us have specialized skills and passions that neurotypical people lack. And if properly utilized, we could literally expand the boundaries of human knowledge and fix some of society’s most pernicious problems. All of this is to say that ignoring your autistic family, friends, and fellow citizens is not just to our detriment, but to everyone else’s. Thank you.
ANDY: Aaron, thank you for sharing your employment journey. I think some of the people listening today can quite possibly relate. Maybe more of us have had similar experiences. Representative Freiberg, what comes to mind as you listen to Aaron’s experience?
MIKE: Aaron, did you have a comment first?
AARON: Oh, no. I think they played a video segment beforehand.
MIKE: Okay. I apologize. The video was not visible to the people who were in the room here. I know, Aaron, you had a couple questions that you said you were going to ask me. Did you maybe want to turn to those?
AARON: Yeah, I did. I’ll just start. So hi, everyone. I would like to start out by saying that although I do work for vocational rehabilitation services, the opinions expressed in that prior video segment and in this interview are my own, not necessarily consistent with the official positions at Minn D. I’m speaking now as an independent autism advocate. So thank you, Representative Freiberg, for joining us today.
MIKE: My pleasure. Thank you for having me.
AARON: So the main item in the legislative agenda this upcoming session concerning disability and employment is about the Connect 700 program. So for those who are not familiar, this program allows job applicants to state positions who have communications impacting disabilities that prevent them from participating in the traditional interview-based selection process, up to 700 hours of on the job experience to demonstrate their qualifications and their ability to do the job. So the State Employment and Retention of Employees with Disabilities Bill would codify and improve Connect 700. Do you support that legislation? And why or why not?
MIKE: Yes, absolutely, I do. First of all, I appreciate your work, Aaron, both as a constituent of mine, and as an autism advocate. I’m an autism parent myself, so these are issues that are really important to me.
House File 2017 was included in last year’s House State Government Omnibus Bill. And I forget exactly how the votes lined up, but as the DFL caucus, we unanimously supported the omnibus, and the inclusion of House File 2017. In there, it includes lots of really important provisions. So I know it would implement and codify several policies recommended by the advisory task force on state employment and retention of employees with disabilities.
You know, it establishes an accommodation fund. It included definitions of relevant terms and statutes, added new requirements for job postings to make them more accessible, required accommodations to be made within the selection processes, created the 700 hour on the job program that we’re talking about. And requires the inclusion of people with disabilities in affirmative action programs. So I think these are all really important goals. I think it’s really important to get people with disabilities into the workforce, and was glad to support the bill.
AARON: And going forward, would you support any additional programmatic improvements to Connect 700 through legislation? For example, crediting that up to 700 hours that has already been worked by the participant toward the regular probationary period for state employees?
MIKE: Yeah. The goal of the Connect 700 program is to guarantee that disabled applicants are provided with on the job trial work experience to demonstrate they can perform the job. And if a disabled employee can do the job and is hired to the position, then they should receive credit for the time worked, even though it was probationary. I just think asking disabled applicants to complete both an on the job trial work period and the standard probationary period is duplicative, and it places our disabled workers behind their peers in accruing benefits.
AARON: Thank you. So as I mentioned in my pre-recorded portion, most public employees work not at state agencies, but for county and municipal level government, or for public school districts, or other local entities. And these employers don’t participate in Connect 700, and don’t generally have any accessible application standards at all. Do you find this acceptable, and do you see the legislature ever doing anything to address this?
MIKE: Yeah, no, I don’t think it’s acceptable, and I think we should address this, and hope we will. So the goal is important. We should ensure that disabled employees are protected at every level of government employment. I know with House File 2017, the primary costs associated with it were creating the content for the ADA Title II, affirmative action, equal opportunity, digital accessibility inclusion, disability awareness, cultural competence, and the other trainings required in the bill. You know, those are one time costs, and the programs can then be made available and tracked by employers at no additional cost. Certainly, we have an extensive surplus right now.
A fair amount of it is one time funding, so something like this where there’s not ongoing expenses, I think, would be a good use of just a very small portion of the surplus. There may be additional costs to tailor the programs to different levels of government. We didn’t review those under last session’s bill. I wasn’t on the state government and local government committees in the last session, but I actually will be in the upcoming session, so I’m hopeful that this is something we can look at in our committee, and regardless, we should not let these costs impede developing and implementing accessible hiring processes at every level of government.
AARON: Thank you. And finally, of course, most Minnesota job vacancies are in the private sector. Do you see any ways that Minnesota law could help support equitable employment in that space?
MIKE: Yeah, no, there are some things we’ve looked at already. There’s the Task Force on the Elimination of the Subminimum Wage, and I know that can be kind of a controversial issue. But it is something I’ve supported. I do think people with disabilities who are in the workforce should be treated the same in terms of job protection laws, and workplace protections, and wage protections, as people who don’t have disabilities. So I certainly support the work of the task force, and I do think we need to start looking forward to ways to eliminate the subminimum wage. And I’ve co-authored that bill, and actually testified in favor of the task force bill a couple of years ago.
So I know the task force is required to submit its report to the chairs by February 15 of 2023. So I think that’s something that we’ll definitely look at this year. And beyond that, just making sure there’s adequate funding for disabled workers, I think is something that’s really important. The 2021 jobs bill that we passed included a whole bunch of provisions in this regard. So there was $28.6 million for vocational rehabilitation services, funding for extended employment–
ANDY: I hate to interrupt you, Representative. Aaron, do you have any quick, final thoughts?
MIKE: Yeah. Oh.
AARON: No, go ahead, Representative.
ANDY: Okay, thank you both, Aaron and Representative Freiberg, for being here today in partnership so we can get solutions across the finish line. Folks, we’ll need just a minute to set up the next segment on MA-EPD. So the screen will have the transition slide for a few extra seconds. Take a minute to stretch or to take a few deep breaths. We’re in the homestretch. When segment seven appears, you’re in for a treat, because you’ll be welcomed by my council colleague, Myrna Peterson. Thank you both.
SPEAKER: MA-EPD: Medical Assistance for Employed Persons with Disabilities.
MYRNA: Thank you, Andy. Hello, everyone. I am Myrna Peterson, a retired educator and an MCD council member from Grand Rapids, Minnesota, representing region three. I’m a white woman with short, dark brown hair, wearing a bright red cape. I respond to the pronouns of she/her. I have limited use of just one arm and hand to operate my power wheelchair, as an outcome of a spinal cord injury 27 and 1/2 years ago. I am coming to you from my home office with a blurred background. I am very thankful that we are able to bring this event to you today virtually, because with this weather, I’d have a hard time getting to the cities.
On that note, I am pleased to represent the old state Minnesota disability community here in Grand Rapids, the home of goMARTI, our self-driving vehicle project. This project is part of the governor’s council on connected and automated vehicles, of which I am also a member.
I’m afforded these work opportunities because for 26 and 1/2 years, I have been a recipient of MA-EPD, Medical Assistance for Employed Persons with disabilities. It is my pleasure to introduce to you our final segment on this MA-EPD program, a conversation with citizen advocates Brittanie Wilson, Rob Wudlick, and Julianne Nelson, plus Senator John Hoffman and Senator Jim Abeler. I’ll hand it off now to Jillian.
JILLIAN: Good afternoon, everyone. I’m Jillian Nelson. I am the community resource and policy advocate at the Autism Society of Minnesota. I’m a white woman with teal hair in a bun, wearing a black sweater. I am also an autistic adult, and my pronouns are she/her.
I am here, like Myrna said, with my friends and colleagues, Brittanie and Rob. And we’re here today before you in our roles because of an amazing program called Medical Assistance for Employed People with Disabilities, or MA-EPD. This is a program that allows individuals with disabilities to continue to access MA for services and support after their career paths take them away from income-based qualifications.
Participants pay a monthly premium based on their wages, and this program has allowed so many people to achieve their career goals and still get the important support they need. However, this program hasn’t been adjusted since it was first put in place, and we’re working as part of a team on reforming a few pieces of it to improve access for our whole community.
I am a newer participant to this program, just in the last two years. I’ve always believed that if I worked, I wouldn’t qualify for benefits. And because of this, I went from crisis to crisis, and really struggled maintaining stability, and a stable living situation. When I got MA-EPD, it meant that I could have the supports I needed.
I have my PCAs, I have sensory support, and more. My life literally changed. And so did my ability to be a great employee. When I got the support I desperately needed, the crisis stopped. And I was able to show up to work every day and put my best foot forward.
For me, though, accessing this program means I make choices. People with disabilities often make lower wages. Myself, I work for a smaller non-profit, because that’s where I find the support I need in a job I love. It also means I’m not rich. It also means that paying a percentage of my wages every month is an incredibly large added expense, and it means I need to make hard choices.
If I’m waiting for a reimbursement check from the county, I can’t pay my MA-EPD premiums and my car payment, or my MA-EPD premiums and my rent, or my MA-EPD premiums and buy necessities. I have to choose every month, and something always gets put off till late. And it’s never my premiums, because I can’t go without those supports. The cost of living increases and wages have not grown proportionately, yet the percentages of per-premiums of MA-EPD have stayed the same. And this means that every year, my purchasing power decreases, and yet I still have this commitment to pay if I want to remain stable.
One of the pieces we’re asking for in reform is to lower the premiums for individuals that are within income limits that make that financial stability more precarious. This program was designed to help people with disabilities reach the same starting line as everyone else, but with a significant financial burden, that starting line is harder and harder to reach. And with changes to premiums, hopefully we can remove some of those challenges.
I’m going to send it on over to my good friend, Rob, who’s going to talk a little bit about some of the challenges of the asset limits, and how we’d like to improve that.
ROB: Hi. My name is Rob Wudlick. I go by he/him. I think I’m blonde. I’m kind of a dirty blonde white guy. Rough beard, short beard, with a wood background, wearing a light-collared orange shirt. I’m a quadriplegic. I had a spinal cord injury 11 and 1/2 years ago. I’m a C4 quad, which means I have a hard time moving my arms, and hands, and legs, and body. I’m in a power wheelchair. I require almost 24 hour assistance, seven days a week. Usually from family members, but that’s another story. And I currently work at the University of Minnesota in clinical trial project management, helping advance spinal cord injury research. And I am working and starting my own company. We’re trying to reduce the risk of pressure injuries by sensing pressure and providing awareness to users and clinicians.
I’m in a situation where I don’t want to have to choose between losing my benefits and–I don’t want to–a lot of us hide money, that are successful. Not–it’s all legal, but it’s not the way that I want to do things. And right now, we’re limited with a $20,000 asset limit. And granted, yeah, people like me, and a lot of other people are on a different spectrum than Jillian. And I was there once, when I started working. I was trying to figure out how much I can work with my disability, and it’s a tricky situation.
But with $20,000, and with the job that I have, I want to be able to contribute back to my community. I want to be able to work, continue to work and be successful at it, just like everyone else, and have the same opportunities. This program really has been a great asset. But since 1999 when it was incepted, it really hasn’t been changed. And we’re looking at something where, what’s a down payment on a house? Well, we can’t really save up to afford even a down payment, so we’re kind of limited on a lot of things that we’re–there. Really, it’s about building stability and equal opportunity to get us to the starting line. And getting us out of the basement.
So our goal is to kind of work this session and create some reasonable solutions to help improve employee pay benefits for people with disabilities.
Thank you. And here’s my good friend, Brittanie.
BRITTANIE: Thank you, Rob. Hello, everyone. My name is Brittanie Wilson. I am the Equity and Justice Director at the Arc Minnesota. My pronouns are she/her. And for a visual description, I am a Black and Hispanic woman. I have shoulder length dark, brown curly hair. I’m wearing a lavender sweater and disability empowerment themed earrings.
I am honored to be here today to speak about MA-EPD, a program that I have been on for 10 years. I was born with a joint and muscle condition and navigate life using an electric wheelchair.
And like so many others in my community, I grew up with an understanding that if I made too much money, I would be kicked off of Social Security and state services that I need to live, including the CADI waiver and PCAs. Because of this, upon graduating college, I didn’t look for a job like all of my other peers. About two years later, I learned about the disability hub and made a call that would change my life. I learned that on MA-EPD, I could work while earning a competitive wage and still get the help that I needed. I was informed that I also needed to apply for Medicare, and I was accepted into both programs. I started working, and as I grew professionally, my wages increased.
One day, I received a letter explaining that I would need to start covering my Medicare Part B premiums in addition to my MA-EPD premium. At this point, I was barely making it by, and everything additional that I made went to my health care premiums. Another two years of successful employment went by, and I was notified that I would need to start paying for my Medicare Part A premium. There was no way that I could pay over $700 a month for my health insurance and still be able to afford the basic things like rent and food. It became clear to me that I would be forced to quit my job and apply for all of the services that I had been working so hard to stay off of.
When I called my county financial worker and told them my story, they said that there was nothing that they could do, and offered to give me food bank information. I was so frustrated, and most importantly, terrified for my future, but I refused to give up, because working meant everything to me. I kept going up the chain of command, telling my story, and begging for someone to hear me and to understand the position I was in. After a few weeks and many phone calls, I finally got to someone who had the power to make a decision. And their decision allowed me to stay on MA-EPD without Medicare so I could keep working.
I’m not sure how many Minnesotans have been put in a similar situation who weren’t successful in solving that problem, but no Minnesotan should ever be forced to choose between working and relying on the system for health care. I hope that we can work together and gain your support for MA-EPD reform, which would allow folks to be reimbursed for Medicare premiums, among other equitable changes. MA-EPD is such an important program because it allows people with disabilities to work and live just like everyone else. It’s been a little over 20 years since this incredible legislation was passed, and many disabled Minnesotans have the benefit of thriving because of it.
Twenty years has also allowed us to find the gaps and barriers that stop people from living their full potential, that make people choose between the impossible. Reform is overdue.
Thank you, Senators Abeler and Hoffman, for being here. I would like to turn it over to you now for your thoughts on this important reform.
JOHN: Thank you. Thank you. Thank you, Senator Abeler. Thank you, Brittanie. Thank you, Rob. Thank you, Jillian. And thank you, Myrna. Did I get that–Myrna?
I’m a little upset to hear of just the barriers that exist within our system, and so bear with me. I’m John Hoffman. I represent Senate District 34, Coon Rapids, Champlin, Brooklyn Park, Dayton and Rodgers, Minnesota. I’m wearing a gray suit with a white shirt. I’ve got brown hair–I think it’s still brown. And then I’m in a conference room, and I’m sitting in a black chair. And I’m in beautiful downtown Ramtucky, Minnesota. So if anybody’s ever been here, it’s the gateway to the west.
Real quick, last year, Senator Abeler, and you heard Carla Nelson talk about it just earlier on just a few minutes ago–he was the chief author of a bill that was a workforce bill regarding caregiving support, stabilizing workforce, right, and this whole thing. That’s a prime example of something that we need to finish this year.
But in addition, Brittanie, there are so many gaps, and you just shot them out there. And Rob and Jillian, too. We need to fix this.
On one hand, we have this low unemployment rate in Minnesota, but yet on the other hand, we’re saying, well, if you work too many hours–and I can give you lots of stories. SNL Team Clean out of Saint Paul, 40% of their workforce are people with disabilities. And they’re already starting to cut down hours because their person is maxing out where they should be. It’s like, why should that be there? And so thank you for your stories.
I am committed to bring–Senator Abeler, as a matter of fact, as the bill jacket gets up, you’re looking at two people that are going to be absolutely there, championing this across the board. And with that, Senator Abeler.
JIM: Well, thanks. Thanks for having me. I’m actually in Florida, working on my mom’s hurricane-damaged home. And what you see behind is some walls that need sheetrock, because the thing flooded. My old friend, Stevie, has come along with me. Jillian was asking him to chat, so he’s here helping. Then I’m here wearing a white shirt and–anyway. Pretty good sheet rocker.
I’m glad you can all be here, and Senator Hoffman, I’ve passed, rhetorically, the gavel on to him, but not the torch. We’re both carrying the torch for all this stuff. And it makes no sense at all to not let everybody work the most they possibly can to have everything good happen to them.
And so the Senate has, on a bipartisan basis, has been supportive of that. And Senator Murphy offered the amendment in our committee, which I worked with her on to find the money. And I don’t know how it got snagged up at the end, but we have to fix this, and I’m all in. And I’m so pleased for the leadership John Hoffman is going to show, and as we work together to make a difference for all of you guys, so thanks for having me.
ROB: All right. Thanks for your response. Jillian, do you have any questions, or–
JILLIAN: Again, I just want to thank you both so much for championing this issue. I remember this came up last year, and Senator Abeler’s autism council had a town hall on transition. And John came to the table and said–he tasked me and Holden with bringing him a bill on this.
JOHN: I did.
JILLIAN: You did. You said, come back and get me a bill. It was right before a special session. You wanted it for a special session. So we went, we worked really hard, and we handed you a bill. And it didn’t go anywhere in the special session, but then we took off running come the regular session last year.
I am really curious as to what the message you would like for your fellow colleagues, and the House of Representatives, and fellow senators on what the importance of this bill is, and what you would like to see them do when this crosses their desks, and when this crosses the floor in just a couple of weeks here. Because we have a chance to change some real lives and make a profound impact on the workforce with this bill.
JOHN: Thanks, Jillian. And Jim, if I could just–I’ll just add a real quick anecdote to that–I just met with Bentley from the Minnesota Chamber of Commerce. To me this is a workforce issue, period, right? We desperately need people working in the state of Minnesota. The unemployment rate’s low. Companies, major companies, anybody, they’re saying bring us the workers, right? But if we’re putting barriers up that exist because of some old system, guess what? It’s time for reform. I heard that question. And so I think your allies in this are going to be what we would consider in the Minnesota chamber. And we’re actually–I’m going to connect you to Bentley from the Minnesota chamber, because he sees this across different, other sectors, as well. But you guys have an option to fix this. Let’s fix this. Senator Abeler?
JIM: Yeah, and just to be brief, add some kind of message, like–would you let us work?
JIM: And so there’s different compartments in your meeting today, but Connect 700, this thing, some of the waiver programs, the exploration with the day services programs, and so on, it’s all the same thing. And so forget the compartments. Let’s just make it work.
JIM: You know, it snagged up before. I think now, having probably a better chairman, maybe he can get something accomplished there. So go, John. And I’ll help you.
MYRNA: Okay. Thanks, everyone. We’ll need to wrap up. Thank you, Brittanie, Rob, Jillian, Senators Jim Abeler and John Hoffman for this robust conversation. We believe things will improve if we all work together.
To end our program, here’s Trevor.
SPEAKER: Minnesota Council on Disability’s 2023 Legislative Forum. Wrap up with Trevor Turner, MCD Public Policy Director.
TREVOR: And that’s a wrap. So thank you, everyone, for coming to our legislative forum, and the audience today. I would like to thank all of our advocates, our legislators, the Governor and Lieutenant Governor, our council members, and the MCD staff for putting this on.
I just wanted to give a quick shout out that we will be presenting a legislative forum survey. So we ask you that after, a screen will pop up, and we will have a QR code and a link that you can go and do a survey to let us know how you thought of these issues that were presented today. And if you want to get more involved, we would love to have you.
So thank you and have a great day.
SPEAKER: Thank you for joining us. To access the event survey, or learn how to be a council member, scan the QR code on screen, or go to M-N dot G-O-V forward slash M-C-D forward slash 2023 F-O-R-U-M.