Podcasts about little lobbyists

Featured guest Stacy Staggs is a wife and mother to twin girls who are the lights of her life. The girls also live with complex medical needs and disabilities. Since the twins' birth, Stacy has been advocating for their access to healthcare, public education, and community inclusion. She volunteers across a number of organizations mainly as the Director of Community Engagement for Little Lobbyists and as a Consultant with Long COVID Families. Listen to her compelling stories about family, healthcare activism, her perspective as the democratic process threatened the Affordable Care Act, and the importance for all people, regardless of ability, to live fully engaged lives. Wendy Sheridan and Robin Renée get the show started with 3 Random Facts about our bacterial inhabitants, anarcho-primitivism, and places called Bristol. In the News: Authorities in Kyiv ban large public events for Ukraine's 31st anniversary of independence, Michelle O'Bonsawin, an Abenaki member of the Odanak First Nation, is selected for Canada's Supreme Court, Omicron-specific COVID boosters are on the way, the world's smallest sea turtle hatchlings are discovered off the coast of New Orleans, and former Australian Prime Minister Scott Morrison apparently gave himself a few extra cabinet positions. Spoiler Alert: In the Geekscape segment, Wendy geeks out on The Sandman. Things to do: You Got Questions? We Got Answers! Serious or silly, send 'em to Wendy and Robin here. Learn more about Little Lobbyists and Long COVID Families. Read "What to Know About Long COVID in Kids" in TIME Magazine. The article includes information about a pacing guide created in partnership between Long COVID Families and ME Action. Watch The Sandman. Do The Bristol Stomp! https://www.youtube.com/watch?v=h74lmWlxmn8 Sound engineering by Wendy Sheridan Show notes by Robin Renée Fake sponsor messages by Ariel Sheridan Web hosting by InMotion Remote recording by SquadCast

Some twenty months into the COVID-19 pandemic, estimates suggest that between 3 million and 10 million Americans may have “long COVID,” which can bring long-term and, in some cases, debilitating symptoms ranging from chronic pain and fatigue to brain fog, respiratory problems, organ damage, and more. While experts may still be fuzzy on the exact number of so-called COVID “long-haulers,” two things are clear: this population represents the largest influx of new entrants to the U.S. disability community in modern history, and their ranks continue to grow by the day. But is America's public policy infrastructure prepared to handle the coming tidal wave? And how was it faring for the 1 in 4 Americans already living with disabilities before the pandemic? Following last week's deep dive into America's house-of-cards child care system, for this week's Off-Kilter, Rebecca sat down with three dear friends and leaders from the disability community for a look at America's frayed caring economy from the disability perspective; the policies we need to ensure COVID long-haulers aren't left out in the cold; and how Democrats' Build Back Better legislation could begin to make transformational change. This week's guests include: Matthew Cortland, senior fellow at Data for Progress and cofounder of the #DemolishDisabledPoverty campaign; Kathleen Romig, senior policy analyst at the Center on Budget and Policy Priorities; and Elena Hung, co-founder and executive director of Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities (and Xiomara's mom).

Some twenty months into the COVID-19 pandemic, estimates suggest that between 3 million and 10 million Americans may have “long COVID,” which can bring long-term and, in some cases, debilitating symptoms ranging from chronic pain and fatigue to brain fog, respiratory problems, organ damage, and more.  While experts may still be fuzzy on the exact number of so-called COVID “long-haulers,” two things are clear: this population represents the largest influx of new entrants to the U.S. disability community in modern history, and their ranks continue to grow by the day. But is America's public policy infrastructure prepared to handle the coming tidal wave? And how was it faring for the 1 in 4 Americans already living with disabilities before the pandemic?  Following last week's deep dive into America's house-of-cards child care system, for this week's Off-Kilter, Rebecca sat down with three dear friends and leaders from the disability community for a look at America's frayed caring economy from the disability perspective; the policies we need to ensure COVID long-haulers aren't left out in the cold; and how Democrats' Build Back Better legislation could begin to make transformational change. This week's guests include: Matthew Cortland, senior fellow at Data for Progress and cofounder of the #DemolishDisabledPoverty campaign; Kathleen Romig, senior policy analyst at the Center on Budget and Policy Priorities; and Elena Hung, co-founder and executive director of Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities (and Xiomara's mom). For more on all this:  Learn more about the home and community-based services (HCBS) provisions in Build Back Better, via NBC News. Here's a good overview of long-haulers' challenges accessing disability benefits, via the New York Times. Read more from Matthew and Data for Progress: “The Reconciliation Bill is a Disability Justice Issue;” “The safety net program Congress forgot” Read more from Kathleen and CBPP: “After Years of Underinvestment, It's Time to Rebuild the Social Security Administration;” “After Decades of Neglect, It's Time to Rebuild SSI”  Learn more about Elena's work and get involved with the Little Lobbyists. Follow #CareCantWait for real-time updates on home and community-based services (HCBS) in the Build Back Better legislation.

On the radio show this week, we cover the week of childcare action as Congress considers a proposal for childcare for all; the latest with the Womens Health Protection Act; the rising power of the AAPI vote; and what happens when the Vice President of the United States of America visits your home. *Special guests include: Nina Perez, MomsRising, @MomsRising; Sara Outterson, Center for Reproductive Rights, @ReproRights; Varun Nikore, AAPI Victory Alliance, @aapialliance; and Jamie Davis Smith, author and member of Little Lobbyists, @LittleLobbyists 

On the radio show this week, we cover the week of childcare action as Congress considers a proposal for childcare for all; the latest with the Women's Health Protection Act; the rising power of the AAPI vote; and what happens when the Vice President of the United States of America visits your home. *Special guests include: Nina Perez, MomsRising, @MomsRising; Sara Outterson, Center for Reproductive Rights, @ReproRights; Varun Nikore, AAPI Victory Alliance, @aapialliance; and Jamie Davis Smith, author and member of Little Lobbyists, @LittleLobbyists

On the radio show this week, we cover the week of childcare action as Congress considers a proposal for childcare for all; the latest with the Womens Health Protection Act; the rising power of the AAPI vote; and what happens when the Vice President of the United States of America visits your home. *Special guests include: Nina Perez, MomsRising, @MomsRising; Sara Outterson, Center for Reproductive Rights, @ReproRights; Varun Nikore, AAPI Victory Alliance, @aapialliance; and Jamie Davis Smith, author and member of Little Lobbyists, @LittleLobbyists 

As a parent, what do you do when you know something is not ‘right' with your child and no one seems to listen to you?  Being a mom can be challenging and made even more so with the constant moves a military family has to make.  However, find out what Austin Carrigg and how she finally was heard and has become an advocate for exceptional needs and exceptional children.   Guest: Austin Carrigg is the Founder and Chief Executive Officer of Exceptional Families of the Military (EFM) and the Founder of The Youth and Children's Advocacy Network (THEYCAN).  She is also the Down syndrome ambassador at Ketotic Hypoglycemia International and has spent the last seven years tirelessly advocating on behalf of children, youth, and families. Her experiences span complex medical needs, adoption, surrogacy, military life, and finding accessibility in an inaccessible world. In 2019 Austin was named a board member of Ketotic Hypoglycemia International, subsequently publishing Towards enhanced understanding of idiopathic ketotic hypoglycemia: a literature review and introduction of the patient organization, Ketotic Hypoglycemia International in Orphanet Journal of Rare Diseases, as well as Ketotic hypoglycemia in patients with Down syndrome, in the Journal of Inherited Metabolic Disease. In 2020 Austin Founded Exceptional Families of the Military (EFM) after testifying before the House Armed Service Committee in an effort to unite the voices of military families like hers and raise their voices collectively to incite change. Exceptional Families of the Military represents more than 130,000 families with a mission to connect military families with Disabilities, Special Healthcare Needs, or additional educational needs from all branches of the service in order to navigate within the Exceptional Family Member Programs and identify areas of improvement that affects the families they represent. Using the data, they collect while simultaneously assisting families, they endeavor to create long-lasting systematic changes in the laws and regulations that affect EFMP families. 2017-2018 Austin was the Vice President and a founding board member of Little Lobbyists, an organization whose vision is to ensure that all children with complex medical needs have access to the health care, education, and community inclusion they need to thrive. The Little Lobbyists share healthcare stories of children from across the country with their members of congress. Austin has been nominated as Military spouse of the year for her work with the Little Lobbyists, the Tricare For Kids coalition, and her individual work with military families across the country.  Austin was a 2018 Heroes at Home Awardee and was recognized by Virginia Governor, Ralph Northam, for her work supporting military families.   Discussion Points/Time Stamps: Who is Austin Carrigg 2:08 Becoming a mom of an exceptional family 3:28 Military life/insurance/doctors 4:48 The roller coaster begins 7:34 Downs Syndrome/ketotic hypoglycemia 9:02 Learning and Growing 12:48 It's a Family Affair 17:50 The Advocate 18:04 A Support System20:10 Symptoms 23:26   Resources: LinkedIn – (99+) Austin (Campbell) Carrigg | LinkedIn Ketotic Hypoglycemic International - Home - Ketotic Hypoglycemia International % Questions:  Email: www.newhorizencoaching.com/contact

Kelly chats with Elena Hung, Executive Director and Co-Founder of Little Lobbyists.

Kelly chats with Elena Hung, Executive Director and Co-Founder of Little Lobbyists.

On Episode 280 of the Mama Bear Dares Podcast, Leslie and Tesi sit down with Elena Hung, co-founder and director of Little Lobbyists, an incredible organization that seeks to protect and expand the rights of children who have complex medical needs and disabilities through advocacy, education, and outreach. Elena shares her journey of working WITH and on BEHALF of families with medically complex kids, about the power of story to change hearts and minds AND policy. She and her fellow advocates refuse to accept the policies and legislation being advanced by the current administration and Congress and seek to educate legislators by showing up in-person with their children (and their ventilators, oxygen tanks, feeding tubes, wheelchairs, and more!) so that everyone can see first-hand who is impacted by laws and programs like the ACA, Medicaid, ADA, and IDEA. Visit the Mama Bear Dares website for details.

Laura is Simon’s mom and the Director of Communications for Little Lobbyists.Laura believes that, regardless of health or ability, all people have the right to life, liberty, and the pursuit of happiness. She also believes that every person has gifts to share, celebrate, and use to make our world more beautiful. Laura is a graphic designer, small business owner, and adjunct professor. She believes in the power of great design for great organizations and specializes in communication for education, health care, and the arts. She loves being in the classroom helping creative people turn their passion into their profession. When she isn’t creating or teaching design, Laura works toward making the world a more beautiful place by volunteering on various board committees that support arts in education and the inclusion and celebration of people with disabilities. She loves being a mom to both her amazing kids, does a lot of yoga, bakes impressive cakes, and really appreciates a nice manicure.Laura can be reached at laura@littlelobbyists.orghttps://littlelobbyists.org/ https://cnd.com.ua/en/products/shellac-peacock-plume

Inside the first-ever campaign training program for disabled candidates with its creator, Sarah Blahovec; PLUS: Elena Hung and Roger Stone on celebrating 2 years fighting to protect the ACA with the Little Lobbyists.

Laura Hatcher is on the leadership team of The Little Lobbyist. The Little Lobbyists are families of children with complex medical needs and disabilities who seek to educate legislators about our community by showing up in-person with our children (and their trachs, ventilators, oxygen tanks, feeding tubes, wheelchairs, all the stuff) so they can see first-hand who is impacted by laws and programs. Most importantly, they want legislatures to see our kids are just KIDS; who go to school, love to play, and deserve access to the health care, education, and community inclusion they need to grow up to live their best lives. The little lobbyists also seek to educate families with complex medical needs about legislation that impacts us and to empower us to be strong advocates. In this episode, Laura gives us a pep talk to encourage and equip us to be voices for the disability community. Links to content mentioned can be found in the shownotes at www.lomah.org/podcast2/71 Related Episodes: #70 - Do This Not That: Lessons From a Self Advocate with Angela West #69 - Self Determination with Complex Communication Needs with  Dr. Karrie Shogren #68 - The Need for Adult Sized Changing Tables with Changing Spaces #67 - HCBS Waiver Settings Rule with Together for Choice #61 & #62 - Inclusive Housing and Social Change with The Kelsey

Laura Hatcher is a graphic designer, a small business owner, an adjunct professor and the Director of Communications for Little Lobbyists. She is the mother of a sixteen year old daughter, Olivia, and a twelve year old son, Simon. During a routine ultrasound in the latter part of her pregnancy with Simon, she and her husband Brian learned that the baby had hydrocephaly. When Simon was born they also discovered that he had had a stroke in utero whose effects would cascade into multiple problems, including cerebral palsy and epilepsy. Simon has cognitive and physical disabilities but a phenomenal sense of humor. Laura says, "Simon has the best laugh you've ever heard." He is currently obsessed with Sesame Street and wants to be a chef when he grows up. In today's podcast, Laura, Jason and Elizabeth discuss the intricacies of genetic testing, the work of The NIH Undiagnosed Diseases Program and how they each grapple with the mysteries of their children's diagnosed and undiagnosed problems. When Simon's motor abilities began to decline, they discovered optic nerve atrophy and neurological hearing loss. That led to genetic testing and the discovery that Simon had a unique genetic mutation that was the cause of all of his issues and possibly even his stroke.

Our guest today is Elena Hung. She is the President and Co-Founder of Little Lobbyists, a parent-led organization that advocates for children with complex medical needs. Her daughter Xiomara (whose name means "ready for battle") was born with a number of medical issues. Elena, Xiomara, and families like them have been visiting Capitol Hill and speaking with lawmakers and their staffers, talking about what is possible with access to quality, affordable health care, and what is at stake without it. Elena: "We are story tellers. We are truth tellers. We are sharing the humanity of children with complex medical needs."

Elena Hung joins The Great Battlefield to discuss her work as the Co-founder of Little Lobbyists -- an organization led by parents of children with complex medical needs. She details the methods they are using to help elected officials better understand the real-life consequences of dismantling Medicaid, Medicare, or the Affordable Care Act. | Episode 125

This week we talk to Elena Hung, Founder and CEO of Little Lobbyists, about how the election turned her in to an activist (we can relate). We talk about how storytelling connects her work as an activist on behalf of medically complex kids with her day job as an immigration lawyer, and how community is an essential building block for advocacy. Our Calls to Action stay on the healthcare and storytelling theme, and we award the Golden Pantsuit to a woman leading her organization to come to terms with its racist history. Listen and share today!

This week we talk to Elena Hung, Founder and CEO of Little Lobbyists, about how the election turned her in to an activist (we can relate). We talk about how storytelling connects her work as an activist on behalf of medically complex kids with her day job as an immigration lawyer, and how community is an essential building block for advocacy. Our Calls to Action stay on the healthcare and storytelling theme, and we award the Golden Pantsuit to a woman leading her organization to come to terms with its racist history. Listen and share today!

Kelly speaks with Austin and Ben from the group Little Lobbyists about their work educating congresspeople and the public about children with complex medical needs and advocating for legislation that will protect their children's access to affordable, quality healthcare. Learn more about Little Lobbyists at: https://www.littlelobbyists.org/

Kelly speaks with Austin and Ben from the group Little Lobbyists about their work educating congresspeople and the public about children with complex medical needs and advocating for legislation that will protect their children's access to affordable, quality healthcare. Learn more about Little Lobbyists at: https://www.littlelobbyists.org/

Bill Press is out so Ben Wikler (MoveOn) is filling in. He welcomes Sam Berger, Elena Hung, Michelle Morrison and Gregg Beratan to discuss Donald Trump's fundamental misunderstanding of health care policy, how the Obama White House would have worked to improve the ACA, the Little Lobbyists' fight for children with medically-complex needs and ADAPT's protests in support of Americans with disabilities during the health care debate - the full Friday edition of the Bill Press Show!