Posts tagged disability
All must mean ALL – Little Lobbyists Statement on Universal Health Care Policy (STATEMENT)

Little Lobbyists believe that health care is a human right. We also believe all health care policy in the United States, especially policies designed to create a system of universal health care, must include appropriate coverage for the health care of people with complex medical needs and protections for the civil rights of people with disabilities. By doing so, legislators can finally ensure that every American has access to health care. All must mean ALL.

Below, please find a summary of the top three areas of concern for our community regarding the proposals for universal health care policies.

Long Term Services and Supports

  • In addition to traditional health care services, provision for Long Term Services and Supports (LTSS) MUST be included in any and all new health care policy in order to provide adequate support for, and protect the civil rights of, individuals with disabilities and complex medical needs.

  • Priority must be placed on providing LTSS services in the community and NOT in an institutional setting; we must reverse the existing, systemic “institutional bias.” Home and Community-Based Services (HCBS) provide person-centered support for daily life activities and enable people with disabilities to remain in their homes and communities and engage in all aspects of everyday life - family, school, employment, and more. HCBS are more cost effective, provide better outcomes, and preserve the freedom, dignity, and civil rights of individuals needing care.

  • Any system must recognize and support the central role family caregivers play in planning for and providing Long Term Services and Supports.

  • For more information, please refer to the principles on including LTSS from the Consortium for Citizens with Disabilities.

Continuity of Care

  • Sweeping changes to the way health care is delivered in our country will be disruptive. However, no change should disrupt the access to, or quality of, care for individuals with complex medical needs. Being able to continue seeing trusted specialists, access care centers, and obtain vital medications, equipment, supplies, therapies, private duty nursing and more, is a matter of life and death.

  • In the current system, Medicaid coverage for individuals with complex medical needs and disabilities is inconsistent and highly variable from state-to-state, even from individual-to-individual within states. It is essential that this inequity be eliminated to provide relief for those not yet covered without compromising the coverage of those who currently have their needs fully met.

Pharmaceuticals

  • We need to increase support for research and development of treatments and cures for illnesses and diseases from the very common to the exceedingly rare. The people who need these treatments and cures must also be able to afford them.   

  • People with complex medical needs use a wide variety of medications, some common, some less so. These diverse needs must be adequately considered when determining the list of prescription drugs comprising any formulary. Appropriate provisions should also exist for those needing medication not included in the formulary.

  • For the majority of pharmaceuticals, when research and development is predominantly funded by public dollars, we believe Medicare/the Government must be able to negotiate with drug companies to secure reasonable prices and prevent the price gouging of medications, like insulin and epipens. The recommendations on making medicines affordable developed by the National Academies of Sciences, Engineering, and Medicine offer some valuable suggestions.

  • For pharmaceuticals developed for rare/orphan disease, some of which are funded through “venture philanthropy” and other private sources (like medications for Cystic Fibrosis and targeted genetic medicines for cancers), a carefully considered approach must be developed to effectively support and incentivize innovation while controlling costs for this small, very diverse, rare patient population.

Please note: at this time, Little Lobbyists is not endorsing any specific plan or policy. This document is meant to outline our concerns and provide guidance for discussion regarding proposals for all new universal health care legislation.


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The Disability Integration Act

Little Lobbyists know our children with complex medical needs and disabilities will grow up to be adults with complex medical needs and disabilities. This is why legislation like the Disability Integration Act, which seeks to end institutional bias and secure everyone’s right to choose to live in their communities instead of an institution - regardless of level of need - is so critical to protecting the civil rights our children deserve.

This year, on Martin Luther King Jr.s birthday, the Little Lobbyists were invited to speak at the re-introduction of the Disability Integration Act with members of ADAPT, NCIL, other disability rights advocates, and members of Congress. The following text is from Erin Gabriel’s speech, mom of Little Lobbyists Abby, Bridget, and Collin. Erin, who lives in Pennsylvania, was also asked to introduce Senator Bob Casey (PA) by the Senator himself before he gave his remarks in support of this bill, which he called and important piece of civil rights legislation befitting the legacy of Martin Luther King Jr..


Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

Image Description: Elena Hung, Erin Gabriel, and Little Lobbyists Xiomara and Abby at the podium during the DIA day reintroduction program. They are accompanied by an ASL interpreter.

I am the lucky mother of three beautifully autistic children, Collin, Bridget and Abby. Abby is my youngest. She is 9 years old.

In addition to being autistic, Abby is also Deaf-blind, nonverbal, uses a wheelchair and has a long list of medical symptoms that go along with her genetic diagnosis. She has a rare, progressive and degenerative syndrome that we are still trying to learn more about. Medically, Abby has had to go through a lot.

That said, she, in so many ways, is a story of everything that can go right with the system. Because of where we live in Pennsylvania, her hearing loss was found at birth and she immediately qualified for Early Intervention services as well as a home and community based Medicaid waiver for children with disabilities-Pennsylvania’s version of the Katie Beckett Waiver. We have been able to find therapies and treatments that have helped her – all while living at home with her family.

Abby’s syndrome is progressive. She will eventually lose much of what she has gained. Her seizures will return and intensify.  And as her disease progresses, we know she will need nursing care at home to help with her daily needs. With the waiver, we know that when the time comes, she will be able to access the care she needs until she turns 21.  

But our waiver is not available to every child like Abby. It varies significantly state by state. And without that waiver, insurance companies use an institutional bias and won’t provide the home care so many of our children need. That means they will pay for care in a nursing home, but not in your own home. It’s part of why we live 600 miles away from our family- because Abby’s access to care literally depends on her zip code.

And when she reaches adulthood, that waiver will go away. Her services will stop, including any therapy and nursing care she has. She will be put on a wait list that extends for years. Her health will continue to decline during that time, while she waits.

Right now, Abby is growing up in her community, with her family and friends. She goes everywhere with us. She enjoys shopping, going to movies, even going to some political events here and there. She travels. She goes swimming at our local lake. She snuggles with her dog at home. She rides all the rides at Idlewild (our local amusement park). She smiles and laughs and brightens the day of so many people around her. She LIVES her life with more spark than most people I know. She deserves to have that freedom to keep living in her community. To get a job if she can. To keep going out with her friends and to travel if she wants to.  

She deserves to have that choice and not be relegated to a nursing home at age 22 because of the services she will require. She deserves to actually live and not just exist. Abby and people like her deserve the right to that choice regardless of which state they happen to live in. This is why the Disability Integration Act is so important for our family, for Abby and for people like her.

The National Centers for Independent Living (NCIL) held an art contest last summer. My daughter, Bridget, entered. The contest was “What the DIA Means to Me.” After talking about it for a few minutes, Bridget knew exactly what it would mean to her. She drew a picture of herself and her little sister in a wheelchair with a nurse being shown to their table at a restaurant. Because, as she explained to me, “The DIA would mean I could visit Abby at her house and we could go to a restaurant or anywhere we want instead of being stuck in a boring nursing home.”  

The DIA means families can stay together and people with disabilities can participate in their communities and LIVE their lives. Just like every other American. — Erin Gabriel

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”

Image Description: Abby’s sister Bridget with her award from NCIL and her award-winning artwork about “What the DIA Means to Me.”



Of Mickey Mouse and Congressmen (by Sandra Joy Stein)
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“Hello, my name is Sandra,” I recorded onto the senator’s voicemail as my own voice cracked. “I am calling you from my son’s Make-a-Wish trip at Disney World.” The tears started down my face. “I beg you to not repeal the Affordable Care Act.”

This was January 2017, just a week week before the inauguration of the 45th President of the United States. The timing felt ominous. We had watched the 2012 election returns from our son’s hospital bed, back when his tracheostomy tube had just been removed and a pacemaker was still protecting his heart. We knew that if our son were fortunate enough to leave the hospital alive, the outcome of the election would determine the fate of his potential for health insurance with a pre-existing condition and without lifetime limits.

Our son’s disease—a horrific and unpredictable autoimmune encephalitis that, like many other diseases, can strike anyone at any age and at any time—came on fast and furious. He went from perfectly healthy to critically ill within a week’s time. His first hospitalization was fifteen months long. The disease caused multiple acquired disabilities, the need for near round-the-clock nursing care, several medications, a wheelchair and other durable medical equipment. While his prognosis was uncertain, his spirit and grit were strong. The mere fact of our trip to Disney World felt like a miracle.

Make-a-Wish was incredibly responsive to his unique needs. Just weeks before our trip, my son stunned us when he regained his ability to walk with a gait trainer. I mentioned this exciting new development to the Make-a Wish staff member who coordinated our trip and she quickly rented a gait trainer for him to use at Disney. When she informed me that “It will be in your villa when you arrive,” I nearly dropped the phone. My son, the bulk of whose childhood has been spent in hospitals and at medical appointments, would be walking around the Magic Kingdom and, just like magic, the durable medical equipment needed to make that possible would appear!

It’s usually much harder. Even with relatively decent insurance, tenacious parents, and extraordinary medical providers, getting my son what he needs is a constant battle and soon after that Disney trip, the administration’s repeated attempts to repeal the Affordable Care Act and severely cut Medicaid made me fear for my son’s life. Should he need to change insurance for any of the predictable reasons, the likelihood that his coverage could be legally denied or prohibitively expensive has increased with each profit-motivated tactic to derail his protection. Given the necessity for mandatory enrollment of healthy folk to compensate for the coverage of folk like my son, coupled with the role of a robust Medicaid program to cover what private insurance does not for people with disabilities, the Republicans have been intent on discontinuing his current level of coverage and care. My son's ability to live at home, frankly to live at all, depends on the social contract between all of us.

Now the 2018 midterms are upon us and I fear for what lies ahead in health policies if the senators and congresspeople who voted against protecting my son’s healthcare remain in office. Already the administration has shortened the ACA enrollment period, allowed junk insurance policies to compete with more robust coverage, allowed non-protection of pre-existing conditions, launched a lawsuit to further undermine healthcare protections, failed to enforce current policies on which people with complex illness and disabilities rely, and misrepresented their healthcare policies and platforms while campaigning. Parents of children with medicalized lives know how to read the fine print of such policies and we know what puts our children’s lives at risk.

My mind returns to that moment at Disney, when I was taking time from my son’s Make-a-Wish trip to call the elected officials I had hoped would break with their party and protect my son. Now it is time to vote them out.


Today’s election matters for family caregivers of children with medical complexity in unprecedented ways. At Little Lobbyists we have leveraged our collective power to protect our children in both our political processes as we also perform their day-to-day care. As November is National Family Caregiver Month, Little Lobbyists is partnering with the Who Lives Like This podcast to feature caregivers, just as we have featured our beautiful children over the past 100 days.

To kickoff off National Family Caregiver Month, Who Lives Like This features writer and caregiving comedienne Sandra Joy Stein. You can hear her episode on Who Lives Like This at http://bit.ly/NaFaCaMoPodcast.



Every Child Deserves a Chance (by Amy & Erik Boyle)

Like most couples, when we dreamed of having a child we dreamed about our child laughing, playing, growing up strong and smart, going off to college, having tons of friends, being part of a community, falling in love, and one day maybe starting her/his own family.  When we decided to have our first child, we were young, healthy, working parents who assumed we’d find great childcare and be able to continue our lives (although maybe a bit more tired than before) as we always have.

Our first child, Ryler, was born in June 2011.  He was full-term, but to our surprise, only about 4lbs and had a significant cleft lip and palate which prevented him from sucking. We spent several weeks in the hospital with him undergoing numerous tests from specialists to determine what other medical challenges he had, and learning how to feed him. We eventually discovered he has a genetic disorder none of the doctors had heard of, swallowing issues which required a feeding tube for a couple years, has a few heart defects, a bleeding disorder that required transfusions and causes excessive bruising and bleeding, is immune deficient, hearing impaired, has microcephaly (small head with abnormal brain development), seizures, significant intellectual disabilities, and he would require extensive early intervention and continuous therapies to learn what most of us take for granted – how to eat, walk, talk, hold things with his hands, etc. Today, he is followed by almost 15 medical specialists to manage his care.

After learning all this about our son, the dreams we had for him before he was born didn’t dissipate, but our focus shifted to understanding his medical issues and how to navigate our new world together. Our dreams may have changed a bit, but during those early days, and still today, the most important thing we want for our son is that he be given a CHANCE. We believe that everyone deserves one. We want Ryler to have a chance to develop to his fullest, to love and care for others and be loved and cared for by many, to go to school and learn, to have friends, play and laugh, and just be a kid.     

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We were fortunate Ryler was born 15 months after the ACA (Affordable Care Act a.k.a “Obamacare”) became law.  Because of the ACA, we don’t have to worry about lifetime maximums within our private insurance or pre-existing condition insurance discrimination, so Ryler can have access to the many wonderful specialists who work with and believe in him. Thanks to our Medicaid waiver which helps our family cover things, like therapy, that private insurance doesn’t, Ryler has been given the chance AT LIFE we dreamed of.  

It is frustrating to us that many don’t realize how crucial affordable, quality medical insurance and programs like Medicaid are. Many people don’t appear to understand what they cover, how they protect the most vulnerable Americans, how close they themselves may be to needing ACA protections one day (if they don’t already), or how devastating it can be to go without.  Raising a medically complex child can be financially devastating, no matter your income level. Many families like ours need one parent to work in the home to care for their sick child (Ryler’s amazing Daddy in our case) and are down to one income; making health care costs even more of a challenge. Our private insurance and Medicaid pay for extremely expensive antibodies that protect Ryler from illness, his seizure medications, home nursing, and therapies. Medicaid even gives children like Ryler the ability to go to school with medical care in place, rather than being forced to teach him at home where he’d have little social interaction.

Today, Ryler is an extremely happy, strong, playful, spunky, loving seven-year-old.  He adores his family including his little brother, Reece and medical alert dog, Oaty.  He loves going to school and gives the best kisses. Ryler has proven many doctors wrong over the years and we’ve learned so much from him, simply because he was given the chance to be a little boy – to learn in an environment appropriate for him, and to receive crucial, life-saving medical care. As a family, we’ve been with him during countless medical procedures, surgeries, hospital stays, ICU visits, ambulance rides. We have even seen him near death after complications from procedures.  But one thing that has saved our sanity and allowed us to focus on caring for our sweet little boy is knowing he will always have the health care coverage he needs. If we don’t vote to protect our care in November, GOP leadership has said they will once again try to strip families like mine of that lifeline. Please be a health care voter and help kids like Ryler have the chance they deserve.

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A Book that Shaped Me: Best Friends on Wheels by Debra Shirley (by Ben Smith, 5th Grade)
The author and his sister, Little Lobbyists Ben and Claire Smith

The author and his sister, Little Lobbyists Ben and Claire Smith

Best Friend on Wheels shaped me because it taught me that it is okay to have a sister with a major disability. Before I read this book, I thought it was not okay to have a sister with a disability. Although I am ashamed to admit it now, I was embarrassed by my older sister Claire who has a microduplication of chromosome two, uses a wheelchair, is autistic, and has many other medical issues.

You may ask how did this book teach me that it was okay to have Claire as my sister? Best Friend on Wheels taught me this because it is a book about a girl with a similar disability.  At the beginning of the book Sarah, a girl with a disability, rolls into the classroom and a girl stares at her wheelchair but does not look at Sarah. At first, she looks away, embarrassed that she might say something wrong and hurt Sarah’s feelings. This is like when I was younger and I always stared at Claire’s wheelchair and thought that she would not be able to play with me. Now I am ten and I think of Claire’s wheelchair as a neat accessory like a piece of jewelry rather than as something that makes her different.

A lot of people stare at Claire when we walk to a toy store in our neighborhood and think that she cannot communicate what she wants. This reminds me of a part of Best Friend on Wheels when Sarah and her friend go to get ice cream and the lady at the counter asks Sarah’s friend what would she like thinking that because Sarah has a disability she cannot talk. Although my sister cannot talk, she can point and let us know which toy she wants that way, but people do not always give her the chance to do so.

Best Friend on Wheels showed me that people underestimate kids with disabilities all the time, not just my sister, and that I had to speak up for my sister so that people would realize what she is capable of. I’ve continued to do this by going to Capitol Hill and rallies to speak up for kids with disabilities and will do so for the rest of my life.

When the girl in Best Friend on Wheels becomes friends with Sarah, it is not because she feels bad for her for being in a wheelchair, but because of her pins showing that she is a “ROCKHOUND.” This may seem unimportant, but it is very important because it shows that people with disabilities can like the same things as people who do not have disabilities. The girl in the book did not notice Sarah’s pins at first because she was too busy staring at Sarah's wheelchair. When she does look beyond Sarah’s wheelchair she realizes they both collect rocks and have a lot of other things in common too. This showed me that people with and without disabilities can have a lot in common if they just take the time to talk to each other, even if what they have in common is just watching movies or reading books.

Best Friend on Wheels taught me that it is okay to have a sister with a major disability because it showed me that a person with a disability can do everything people without disabilities can do too. Just like the two friends in the book, I have learned that I can do everything with my sister Claire that my friends can do with their siblings. We enjoy going to amusement parks, eating ice cream together, swimming, and playing games.

Thanks to Best Friend on Wheels I stopped being embarrassed that my sister had disabilities and realized how much fun I could have with her. Now she is one my best friends. I am so glad I am not missing out on having so much fun with her just because of her wheelchair.


Ben's essay was a finalist in the Library of Congress' 'A Book That Shaped Me" contest. He was recognized for this accomplishment at the National Book Festival in Washington, DC on September 1, 2018

Click here for a link to where you can purchase the book, Best Friend on Wheels by Debra Shirley.