INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
This issue sponsored by:
VOLUME 33, NUMBER 2
As a mother to a daughter with complex medical needs, Elena Hung became worried that funding for the programs and services her daughter depended on might be cut or eliminated under the Trump administration's plan to replace the Affordable Care Act (ACA). In June of 2017, as she sat around a friend's kitchen table discussing their concerns for their children, they decided to do something about it. Their solution was as simple as it was effective - show up and tell their story. By bringing their children to Capitol Hill, these parents hoped to show lawmakers firsthand what was at stake for them.........................................MORE
Mona Randolph of Kansas City, Missouri passed away on February 18th at the age of 82. Mona was one of the last handful of people in the United States still using an iron lung, or what she called her “yellow submarine.” Mona originally began using an iron lung after contracting polio in 1956 at the age of 20................MORE
Vol. 33, No. 2, April 2019
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at email@example.com.
Little Lobbyists' Elena Hung on the Fight for Health Care
As a mother to a daughter with complex medical needs, Elena Hung became worried that funding for the programs and services her daughter depended on might be cut or eliminated under the Trump administration's plan to replace the Affordable Care Act (ACA). In June of 2017, as she sat around a friend's kitchen table discussing their concerns for their children, they decided to do something about it. Their solution was as simple as it was effective - show up and tell their story. By bringing their children to Capitol Hill, these parents hoped to show lawmakers firsthand what was at stake for them, and thus, Little Lobbyists was born.
Since then, they have collected stories from all over the country and continued to forge connections with policy makers at the federal, state and local level. Elena's own daughter, Xiomara, was diagnosed with Tracheobronchomalacia, Chronic Lung Disease, Chronic Kidney Disease, and Global Development Delays. She has a tracheostomy and uses a ventilator and oxygen. IVUN spoke recently with Elena about how the group got started and what's on the horizon for them.
IVUN: Let’s start at the beginning. Like a lot of people with disabilities or complex medical conditions, you had some serious concerns about the current administration’s attempt to repeal the Affordable Care Act (ACA). So how did this eventually lead to forming Little Lobbyists?
Elena's daughter, Xiomara
Elena Hung: I did not set out to start an organization. Many across the country after the 2017 inauguration felt like they needed to speak up and do something. So for me, personally, it was specifically after the House voted on their repeal efforts in May. Like many people who have healthcare issues, we were watching it very carefully. I think we were all expecting it to go that way, but it was still a shock. So after May, we really sprung into action to do something big. Prior to that we were doing what we were supposed to do, which was calling our members of Congress, but we wanted to do something more.
Once the May 4th decision was made, it felt really urgent. So I called some of my friends in the local area in Maryland and had a brainstorming session. We arrived at having one lobby day where we would show up and bring our kids to Capitol Hill, and we would try to collect as many stories as we could ahead of that. We went online. We reached out to our networks. A lot of them were families with children with trachs, that’s my personal network. We did branch out a bit. We reached out to people across the country. They told us their stories. We put them together and showed up on June 20th. That was our first lobby day, and it sort of took off from there.
IVUN: When talking about “your network,” did you primarily meet people through Facebook? How did you meet other families with children who have similar complex medical needs?
Elena Hung: Yes, it was primarily Facebook. There are a lot of problems with Facebook, but it’s great for families like ours. There are a lot of online support groups both for and by parents and children. There’s a lot of information there. I personally belong to a number of groups. My daughter has a number of medical conditions that affect her airway, lungs, heart, kidneys. So, I am in the trach group, and the heart-kid group, and the kidney group. There’s all these different groups, by medical condition and geographical location, and also by purpose. Some of these groups are for advocacy, some are for education, and some are for emotional support. So, I had then started a local trach group, and some of the other people from Little Lobbyists came from there originally.
IVUN: Were there setbacks along the way, or times when you thought your message wasn’t getting through? Were there things that were more difficult than you expected?
Elena Hung: Oh, absolutely. We planned on one lobby day. That was it - June 20th. We show up, and then we go home. Halfway through the day, I remember very vividly looking over to Michelle, a fellow trach mom friend, and realizing, “We have so much more work to do.” We need to come back. We have so many more stories. People were still submitting them as we were on the Hill.
The more meetings we were having, the more we realized two things: one, we had a lot to learn, and two, we had a lot to educate. We were meeting staffers that had no idea about the needs of our families. We had staffers who were very smart and talented and wonderful, but they just did not know. They did not know what Medicaid was, for example, and didn’t know why someone like me, who has a law degree and a good paying job, would need to apply for Medicaid for my daughter. There was a lot of education that needed to be done. So we very quickly decided we needed to come back again the next day. And that turned into another day, and another week, and month, and it just took off on its own. So in terms of setbacks, it was just about realizing how important our work was and how important our voices were because that’s not what has been heard.
On the actual issues, June 20th was the first time we showed up. That week, the Senate was working on a bill behind closed doors that was not released to the public yet. The news claimed they were trying to get a floor vote on it ASAP. So that first week we were on the Hill was just, “show us the bill.” Let's talk about process. The following week, the bill was released. We felt like we needed to go back because now we could talk about the bill and what was actually in it. As we predicted, it could be improved. It wasn't good. We weren’t just coming in to talk about the ACA, but were focusing on the process. We wanted to focus on each individual step. That’s why we kept on coming back.
IVUN: Besides the ACA, what other federal programs are important to people like your daughter?
Elena Hung: In 2017, we focused on the ACA and fighting the repeal efforts, and Medicaid. We felt like Medicaid was something that was so misunderstood. Everything that had to do with Medicaid we tried to message on. Even the tax bills at the end of the year. We realized how they were plotting to pay for the tax bill by cutting funding to programs like Medicaid. We decided to speak up and draw the connection there. In a way, anything that has to do with funding is important. Anytime anything threatens programs like Medicaid or food stamps, anything that threatens the security of people, we decided we were going to speak up on.
We’ve also taken an approach to intersectionality advocacy. Anything that threatens children with medical needs and their families, we are going to speak up on and work with other groups on that, even though it’s not our primary issue. In early 2018, when the shooting at Parkland happened and there was all the talk about gun violence prevention, it wasn’t in our lane so to speak, but we started to discuss safety and active shooter drills and how disabled children would be affected by that. Children who have medical needs who use a wheelchair, in an active shooter situation, what’s the plan for them? We wanted to raise those questions. We wanted to raise questions about survivors of gun violence who experience physical and mental trauma. What about the health care they will need? We drew it back to health care in those conversations. We talked about immigration. There are people coming to the US seeking medical assistance as a result of fleeing persecution in their home countries. We can’t ignore that, we want to highlight that. There are people who have disabilities who are currently being detained by our government. That’s not what Little Lobbyists set out to do, but we wanted to find a way to highlight the voices of those who are disabled and experiencing medical need.
IVUN: Looking ahead then, what do you think is the next big battle regarding health care? Some of these things are constant and ongoing as far as attempts to roll back programs, but what is Little Lobbyists looking to do in the future?
Elena Hung: We want to continue to defend and expand the ACA. It has done tremendous things for our families, and this is not a time to walk away from that. We will fight to protect the ACA specifically the protections that mean the most to our families specifically - protections for pre-existing conditions, the ban on lifetime caps, and coverage for essential health benefits. With that is Medicaid expansion, for children with complex medical needs, specifically those who require therapies and private duty nursing, like my daughter and a lot of children with trachs. They need a skilled nurse to be with them at school or home and often that is paid for by Medicaid. So we will continue to talk about Medicaid expansion and community inclusion. We signed on to support the Disability Integration Act, which says that people with disabilities have a right to live where they choose, including their homes and communities. We are trying to reverse that institutional bias. When HR 620 was introduced, we fought back against that.
We see ourselves as part of the disability community. And while we are currently defending and fighting for children with disabilities, we're trying to highlight this narrative that children with disabilities grow up to be adults with disabilities. So while we are urgently fighting for them right now, we are also planning and fighting for their future so that they have a right to live where they choose, have the tools that they need to live an independent life and really be connected to the disability community. We are all in the same fight, but we are serving as role models for our children to show them what is possible.
We haven’t really worked a ton on this yet, but education is something else that we do have our eye on. We want to make sure our children with medical needs have a right to a free and appropriate education however they choose. One thing we have our eye on is the Keeping All Students Safe Act (KASSA), which deals with appropriate restraints, making sure our children aren’t subjected to cruel and unusual punishments, seclusion, etc. We went from being on the defensive to being rather proactive. It’s quite exciting to have allies in the House right now. Everyone is talking about universal health coverage. We don’t have a public position on that right now but we have been talking to a lot of people to make sure that any universal health care plan includes long-term services and supports and make sure what they have in place won’t disappear when they reach a certain age. That is a concern for many of our families.
IVUN: You talked earlier about people telling and sharing their stories. Why is that important?
Elena Hung: We talk about Little Lobbyists putting a face on health care. We’re trying to humanize this discussion. When the news media talks about health care, it’s in the context of CBO scores and data and numbers and policy analysis, and I think the humanity gets lost in all of that. What we’re trying to do is say, look, there’s a person behind that CBO score. When we talk about 13 million people losing coverage, there’s a real person behind that. I can’t bring 13 million people with me on the Hill, but I can bring a number of families and try to say, “Look, this is a child that benefited from the ACA and we understand what is possible with access to health care, and what is at stake without it.” It makes it harder to turn away. When you walk into the office time and time again, when you know it’s a real person behind those numbers, it makes a difference.
IVUN: How can people support Little Lobbyists if they’d like to?
Elena Hung: I’m trying to figure that piece out. We’ve been completely volunteer-run up until now. We’ve decided to organize ourselves as a nonprofit organization. We would love for people to help us spread the word. We have a website; we are all over social media. Help us spread the word, connect us to other families that want to share their stories publicly. Donate money! We’d love to reimburse our families for their transportation to the Hill. We’ve been paying a lot of expenses out of pocket. We would love to grow Little Lobbyists. Our dream goal is to have Little Lobbyists chapters across the country in each state. Then families can go to their state capitals and advocate and do what we are doing in DC at home as well.
Mona Randolph, one of last remaining iron lung users, passes away at 82
Mona Randolph of Kansas City, Missouri passed away on February 18th at the age of 82. Mona was one of the last handful of people in the United States still using an iron lung, or what she called her “yellow submarine.” Mona originally began using an iron lung after contracting polio in 1956 at the age of 20. Polio left her without the use of her left arm and with limited mobility in her right arm. After an extended stay at Warm Springs, she recovered sufficiently to be able to live without the help of the iron lung for several decades.
She initially wanted little to do with the larger disability community. But her views evolved after a fortuitous discovery. In a 1989 Rehabilitation Gazette she writes,“In the early 60's, I found an excellent little rehab publication, the Toomey J. Gazette, whose funky name appealed to my self-image as a refined hippy. I pored over its tiny-print pages and met other polio survivors performing feats such as running a business from their full-time home in an iron lung. These stories of real people succeeding at real tasks both humbled me and brought new hope. I felt excitement, bitter envy, shame, admiration, despair, dissatisfaction, determination.”
She soon met others with disabilities. They contacted the National Paraplegic Foundation and became a chapter. Within five years, they achieved two goals: compiling and distributing a guide on accessibility to architects and obtaining a city ordinance requiring curb cuts. The chapter evolved into The Whole Person, a dynamic organization which still exists as an advocate for all individuals with disabilities in Kansas City. Subsequently, Mona served on the board of the Coalition for Independence which coordinated direct assistance to the disabled, and she volunteered at Abounding Love, a church-sponsored ministry to the developmentally disabled.
Mona at Warm Springs, 1956.
At home in Kansas City, 1970s.
Mona attributed much of what she was able to accomplish to her strong faith. “I have no secret formula to divulge, and no prideful delusions about being a self-made, Independent Living Specialist who pulled myself up by my own hand-splint straps. Without God, His words of encouragement, His committed people, and the family and resources I was given, I would be neither alive, nor well, nor living happily in Kansas City.”
In 1977, a series of bronchial infections led her doctors to advise her to start using an iron lung again. “The ‘yellow submarine’ is my necessary, trusted, mechanical friend,” she told a reporter in 2017. “I approach it with relief in store at night and thankfully leave it with relief in the morning.”
She used the iron lung for sleep six nights out of the week. During the day she used a CPAP, but said she preferred using the iron lung at night because she felt it allowed her chest to expand and contract more naturally. Mona was only one of a few known iron lung users left in the United States. She was profiled last year in the Kansas City Star. She is survived by her husband Mark.
Mona in her iron lung, 1980s.
Education Dept to Conduct Surveys on IDEA Implementation
The U.S. Department of Education is planning to conduct several surveys this fall to gain a better understanding of how the Individuals with Disabilities Education Act (IDEA) is being implemented across the country. The information will be used by the Education Department, Congress and other stakeholders in preparation of the next update of IDEA, which was last reauthorized in 2004.
A notice on the Federal Register explained more: “The data collection for the Individuals with Disabilities Education Act (IDEA) State and Local Implementation Study 2019 will examine how states, districts, and schools are identifying and supporting children and youth with disabilities. The study is one component of a Congressionally-mandated National Assessment of IDEA.
“The purpose of this data collection is to develop an up-to-date national picture of how states, districts, and schools are implementing IDEA in order to provide ED, Congress, and other stakeholders with knowledge that can inform the next reauthorization of IDEA and, ultimately, how services are provided to children. This study of IDEA is necessary because a decade has passed since the previous IDEA national implementation study, and subsequent developments may have influenced the context and implementation of special education and early intervention.”
Money Follows the Person Receives Temporary Boost
The Money Follows the Person program was allocated $20 million last week to sustain it temporarily while long-term funding is worked out. MFP officially expired in 2016, but Congress passed a three month, $112 million extension earlier this year as states were beginning to run out of money to support the program.
This vital program allows states to access Medicaid funding to pay for employment supports, housing and other services so that people with disabilities can transition from nursing homes and other institutional facilities to homes in the community. With long-term funding unsettled, some states have slowed their transitions down. Advocates are still pressuring Congress to pass the EMPOWER Care Act, H.R.1342, which would allocate $450 million annually for the program through 2023.
CMS Rule Clarifies What Qualifies as 'Community-Based'
Federal officials have issued long-awaited guidance to help states determine what living arrangements for people with disabilities are considered community-based rather than institutional.
The new guidelines from the Centers for Medicare and Medicaid Services clarify a 2014 rule outlining criteria for programs provided through Medicaid home- and community-based services waivers.
The rule calls for home- and community-based settings to provide full access to the community as well as offer privacy, foster independence and allow people with disabilities to make their own choices about services and providers. The criteria apply to homes, day and job-training programs and other non-residential offerings provided through waivers. More.
ABLE Accounts and SNTs: Which is Right for You?
The online resource eParent.com recently broke down the differences between an ABLE account and a Special Needs Trust (SNT). The article examines the advantages and disadvantages of each type of account and which might be best for different types of situations. Also see: “ABLE Accounts 2019: Top Questions,” and, from the Social Security Administration, “Myths Busted: ABLE Accounts.”
Opportunity to Participate in Research - Interview Requests
Stony Brook University
Pamela Block, PhD, Professor and Director, Disability Studies Concentration PhD Program in Health and Rehabilitation Sciences, Stony Brook University, is looking to interview family members of children who are aging, or adults who have aged, out of children's hospitals and health systems in New York State and beyond. If you would be interested in being interviewed please contact her at firstname.lastname@example.org or 631-444-3197.
Rensselaer Polytechnic Institute
Interview Request: We are undergraduate students at Rensselaer Polytechnic Institute attempting to design a device to make mobility easier for children on ventilators. We are seeking your experience either using a ventilator or helping someone on a ventilator move around with one (for people of any age) and any other related equipment (i.e. mobility aids such as wheelchairs, gait trainers, trikes, scooters, etc., pulse oximeters, feeding tube, humidifiers, etc.). A major goal of this project is to ensure that our design considers the wide variety of needs and abilities of the children, families, and caregivers we are designing for. We would be available to chat at your convenience. Any interview information we learn from you will be anonymized. You can contact Ria Shroff by email at email@example.com, or by call/text at 925-482-4682 if interested. We are extremely grateful for your assistance.
Assisted Living Options for People With Disabilities
From eParent.com, this guide breaks down the different options for those who now find that living in their own home is no longer the best fit for them or who simply need more in-home help to continue aging in place. The article examines assisted living, independent living, and home care arrangements and talks about the options for paying for each.
AAHD Issues Call to Action - All of Us Research Program
The American Association on Health and Disability (AAHD) is challenging the disability community to learn about the All of Us Research Program and consider participation with a Call to Action. The All of Us Research Program is seeking to improve precision medicine and the future of health. AAHD is working to encourage people with disabilities to get involved in this research program that includes historically under-represented populations in biomedical research, including persons with disabilities.
All of Us is a new research program from the National Institutes of Health (NIH). The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history.
Their goal is to get one million or more participants. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. NIH states that they will share information back with participants over time.
AAHD's Call to Action challenges the disability community to embrace “nothing about us without us.” If we truly believe in the concept of “nothing about us without us,” then we must answer the call when asked to participate in this type of program. If you are interested in enrolling in the All of Us Research program, please visit www.JoinAllofUs.org/together.
ATS Conference 2019
A second conference will take place in 2019 at the Poughkeepsie Grand Hotel in Poughkeepsie, New York on Wednesday, October 2nd, 2019. This well-established conference will be celebrating its 40th anniversary and is one of the longest continuously running Respiratory Care & Sleep Medicine conferences in the country.
AARC Congress 2019
AARC Congress 2019 will be held November 9–12, 2019, in New Orleans, Louisiana. Highlights from the recent 2018 Congress can be found on their website.
ERS International Congress 2019
The European Respiratory Society will hold their 2019 International Congress in Madrid, Spain, September 28 - October 2, 2019. The programme for the meeting has been posted. Additional details and early registration are available on the Congress webpage.
October 19-23, 2019, New Orleans, Louisiana. The CHEST 2019 Annual Meeting will offer more than 400 general sessions, postgraduate courses, interdisciplinary sessions, original investigation presentations, CME/CE credits and MOC points for hundreds of sessions and more.
Registration is now open.
Philips' Trilogy Evo Portable Ventilator Platform Aids in Transition to Home
Late last year, Philips released a new ventilator platform called Trilogy Evo. The system consists of similar ventilators that essentially differ in their interfaces, specifically in terms of whether they’re intended to be used in the hospital or at the patient’s home. When at home, the ventilator is connected to Philips’ Care Orchestrator platform through a Qualcomm cellular hub. Using Care Orchestrator, clinicians can receive warnings or notifications issued by the Trilogy Evo and can change its settings remotely to adjust to the patient’s needs. A USB stick can be used to transfer settings from one Evo to another, or a clinician can simply manually copy over the mode being used and its settings. If a patient needs to have changes made, the clinical team can always make those remotely and they will take effect on the patient’s at-home ventilator immediately.