Tag: Medicaid

Like many parents and caregivers in California with a family member who has a developmental disability, Sherrean Carr is “petrified” about what might happen to her daughter, Taylor, if federal budget cuts target Medicaid funding.

If Congress passes a budget that includes a proposed $880 billion cut, California would see a $10 billion reduction in Medi-Cal funding each year for the next decade. This would significantly impact the disability services system in California, which over 520,000 children and adults with developmental disabilities depend on for essential services and support.

Taylor, 31, lives in a subsidized housing unit for people with disabilities in Gilroy, CA. She has multiple disabilities, including cerebral palsy and a severe seizure disorder. Every day, she takes 41 anti-seizure medications, along with various other prescriptions for her different conditions.

“My beautiful daughter has the highest level of need possible when it comes to relying on disability services and supports,” Sherrean said. Taylor is non-verbal, unable to walk, and requires 24-hour care and supported living.

“I really wish I didn’t have to rely on these services, but this is the life we were given.”

Sherrean and Taylor’s father, Dave Ramos, are retired and live on a limited income. They pay for their daughter’s out-of-pocket care costs that Medi-Cal, Medicare, or SSDI do not cover.

“If I had to pay for her medications alone, it would cost between $8,000 and $10,000 a month. We would be bankrupt and homeless within a month. That’s just for her medications—not including her medical equipment and specialized nutritional needs,”

Sherrean explained. “Without Medicaid, it would be life-threatening. Taylor wouldn’t survive a day without her medications.”

Medi-Cal programs, funded in-part by Medicaid, support Taylor’s entire well-being. She wears orthotics, needs dental cleanings under general anesthesia, and receives CalFresh benefits for food assistance, diapers, medical supplies, a wheelchair, and a gait trainer, among other necessities. Direct support professionals from the San Andreas Regional Center and In-Home Support Services (IHSS) provide 24-hour care for Taylor, helping with personal hygiene, dressing, mobility, community outings, and administering medications. The Eden Housing apartment complex where they live is specifically designed for people with disabilities, featuring ADA-compliant kitchens and bathrooms, and two bedrooms in each unit so caregivers have a place to sleep.

Sherrean oversees all of Taylor’s support staff and manages a busy schedule of medical appointments to ensure Taylor receives the quality care she needs each day.

“I can’t imagine what will happen to her if Congress approves the proposed cuts to Medicaid,” Sherrean said. “I am grateful for the taxpayer dollars that keep my daughter alive and provide her with the best quality of life possible. Taylor’s father and I believe our taxes should support every disabled resident in our state, especially those without other health benefits.”

While Congresswoman Zoe Lofgren, who represents the Carr-Ramos family, has voted against the proposed Medicaid cuts in the House of Representatives, we urge her to share Taylor’s story with her colleagues to highlight the devastating impact these cuts would have on real lives. The following members of Congress voted in favor of the $880 billion Medicaid cut:

• Rep. Doug LaMalfa, Oroville
• Rep. Kevin Kiley, Roseville
• Rep. Tom McClintock, El Dorado
• Rep. Vince Fong, Bakersfield
• Rep. David Valadao, Hanford
• Rep. Jay Obernolte, Big Bear Lake
• Rep. Young Kim, Anaheim Hills
• Rep. Ken Calvert, Corona
• Rep. Darrell Issa, San Diego

If you are a constituent of any of the members of Congress listed above, please join our fight to SAVE MEDICAID by sharing your story with us and your elected officials. Please email us your story with photos to [email protected] or RECORD A VIDEO MESSAGE at mystory.thearcca.org.

In a poignant narrative that underscores the vital role of Medicaid funding, Cynthia Chadwick, president of the Board of Directors for The Arc of Ventura County, shares her family’s journey through the challenges of raising two sons with developmental disabilities.

Cynthia and her husband, Rich, were blessed with two sons: Thomas, a spirited blond, and Robert, a freckle-faced redhead. Early on, they noticed differences in their boys. Thomas was not developing speech as expected, and subsequent testing revealed he was deaf. When Robert was born, he too faced the same challenge. While Cynthia views their deafness not as a disability but as a challenge, it necessitated her learning sign language to communicate effectively with them.

As the years progressed, the family faced additional hurdles. Both boys experienced seizures and exhibited learning delays, with Robert developing muscular weakness that eventually confined him to a wheelchair. Despite these challenges, the Chadwick family felt fortunate to access essential government-funded services, including Medicaid, which allowed their sons to lead fulfilling lives.

Robert thrived at a nearby Arc day program, where he enjoyed the camaraderie of his peers and the joy of outings. His infectious laughter brought light to the family, and his love for their dog, Nick, and funny Popeye cartoons created cherished memories. Tragically, Robert passed away from a grand mal seizure in 2019, leaving a profound void in the family’s life.

The family’s journey took another heartbreaking turn when Thomas, now 42, developed early onset dementia. This condition dramatically altered his personality, leading to frustration, aggression, and incontinence. Once a sweet, shy teenager who excelled in Special Olympics sports and idolized Kobe Bryant, Thomas now struggles to remember the rules of the games he once loved. He currently resides in a group home, a place that provides the necessary support and care for his needs.

Cynthia emphasizes that both of their sons are unique individuals, embodying both strengths and challenges. Their stories reflect a broader narrative of the disability community and underscore the importance of continued support for individuals like Thomas and Robert.

As the family navigates these trials, they remain deeply concerned about the proposed cuts to Medicaid funding. Cynthia urges policymakers to recognize the critical impact of these services on families like hers. “Please find it in your hearts not to cut Medicaid,” she implores. “Such cuts would be a crushing blow to disabled individuals, their families, and the dedicated staff that serve them.”

Through their heartwarming yet heartbreaking experiences, the Chadwick family exemplifies the importance of advocacy and support for individuals with developmental disabilities. Their story reinforces The Arc of California’s commitment to ensuring that all individuals receive the assistance they need to lead fulfilling lives.

You can join our fight to SAVE MEDICAID by recording your story on video, or emailing us at [email protected]

Click HERE to view their story on video.

By Jordan Lindsey, Executive Director, The Arc & UCP California Collaboration

As members of Congress return home this week for recess, Californians across the state are making it loud and clear that voting for a cut to Medicaid is a betrayal to people with disabilities and their families.  Our voices are beginning to be heard but the fact remains that the House of Representatives passed a budget blueprint for a cut of $880 billion in spending, which would drastically reduce funding for Medicaid funded services in California by tens of billions of dollars every year.  And no matter what members of Congress are saying, people with disabilities and their families are NOT WASTE, FRAUD, AND ABUSE.

By now you are hopefully aware of what programs and services Medicaid funds in California through Medi-Cal: Regional Center services, In Home Supportive Services (IHSS), therapies and supports for students, pre-natal care for pregnant women, and early interventions services for babies born with complex medical conditions or developmental delays. 

So, how can you add your voice to this fight?  Members of Congress are on recess from March 15 – 23, so this week is a critical time for you to reach out to them before they make important votes on Medicaid in the coming weeks.

Our partners at Care Can’t Wait have developed this Ultimate Guide to Protect Medicaid that will give you step by step information on how to reach out to your member of Congress and how to engage others to do the same.  Additionally, you can help to spread the word about the following opportunities to connect with our Republican members of Congress this week: 

Rally to Save Our Health Care in front of Rep. Young Kim’s office (District 40).

• DATE: Tuesday, March 18
• TIME: Noon 
• LOCATION: 180 N. Riverview Dr. Suite 150 Anaheim, CA 92808 | Flyer here

Tele-Townhall with Rep. Kevin Kiley’s (District 3)

• DATE: Monday, March 17
• TIME: 6:30 PM. 
• To participate, call (877) 229-8493 and enter PIN #122293. 
• RSVP: https://kiley.house.gov/tele-town-hall-rsvp-form

If you need assistance reaching out to your member of Congress or organizing a rally or other event then please contact our office at [email protected].

At The Arc of California, we believe every person deserves the opportunity to live with dignity, respect, and the supports they need to thrive in their community. The Simon family of Sebastopol exemplifies what’s possible when California families have access to critical Medicaid-funded services, which is Medi-Cal in California. But their future—and that of countless other families—hangs in the balance as proposed federal budget cuts threaten to undermine these essential programs.

Maayan Simon grew up in a home built on love and compassion. Her parents, Steve and Laurel, now in their late 60s, adopted two boys—Zac and Jacob—when they were babies. Both boys were born with Down syndrome and were placed for adoption. Steve and Laurel welcomed them into their family without hesitation, dedicating their lives to ensuring Zac and Jacob had every chance to flourish.

For over three decades, Medi-Cal has been a lifeline for the Simon family, covering critical health services that Zac and Jacob depend on. At 16, Zac experienced a catastrophic medical event—a rare arteriovenous malformation (AVM) bleed in his spinal cord that left him permanently paralyzed. Thanks to Medi-Cal and Medicaid-funded programs like In-Home Supportive Services (IHSS) and Home and Community Based Services (HCBS), Zac and Jacob have been able to remain in their family home, surrounded by love and community.

But that future is in jeopardy. If Medicaid funding is cut, the Simon family may be forced to make an impossible decision: continue paying increasing out-of-pocket costs for home care—exhausting their financial resources—or place Zac and Jacob in nursing facilities. Such institutional care would not only remove them from the home and community they love but also cost the state of California far more than supporting their care at home through IHSS and HCBS.

Steve, a retired software engineer, and his wife Laurel have spent their lives contributing to their community and paying taxes. Now, they face the grim reality that they may never be able to retire peacefully, all because of proposed Medicaid cuts that threaten their sons’ well-being. And they are not alone. Across California, millions of seniors and people with disabilities rely on Medicaid for their health, independence, and dignity.

The Arc of California urges lawmakers to consider families like the Simons when they vote on the next version of the budget in the U.S. Senate and protect Medicaid.

“Please don’t turn your back on people like my parents and brothers when we need you the most,” Maayan pleads. “Vote NO on cuts to Medicaid and ask your colleagues to join you.”

If you would like us to share your story with our elected officials and the community, please email us your story with photos to [email protected] or RECORD A VIDEO MESSAGE at mystory.thearcca.org

Last week, the U.S. House of Representatives passed a budget plan on a near party-line vote, with only 1 Republican voting “No”. The budget plan passed by the House includes a $880 billion cut to Medicaid, which funds half of Medi-Cal programs in California. The budget now heads to the U.S. Senate, where amendments are expected. Once the new version of the budget act is voted on, the Senate version of the budget will go back to the House for a vote. Both the Senate and the House must agree on a final version of the budget before it becomes law.

While this may feel like defeat, the battle continues. Our work as advocates is not over! You have all done an incredible job by calling, emailing and tagging your legislators in social media posts.

Click HERE to watch Katy Neas, CEO of The Arc of The United States, on CNN respond to the Medicaid cuts in the House budget plan, and address how these draconian cuts would impact the lives of millions of people with disabilities and their families.

“It’s important to remember that having a disability is bipartisan, and is part of the human condition. It doesn’t discriminate by political party, economic status, race, or gender,” Neas reminded viewers during the interview.

While this is true, not a single democratic Representative in California supported the draconian Medicaid cut, and our two democratic California U.S. Senators Alex Padilla and Adam Schiff will protect Medicaid as they deliberate in the Senate. However, we have work to do to encourage our U.S. Republican Representatives in California to protect Medicaid in the next version of the budget bill.

YOUR CAN MAKE AN IMPACT!

1) Record a video message urging members of Congress to reject the cuts to Medicaid (Medi-Cal) by telling them how cuts to your services and supports will impact your life, or the life of someone you care about at MyStory.TheArcCa.org – We will share video messages with legislators.

2) Organize a rally or townhall at your Representative’s office by emailing us at [email protected]

3) Donate to The Arc of California to help power our advocacy efforts this year at SupportTheArc.org

If passed, the proposed $880 billion cut to Medicaid would dramatically impact the availability of vital programs for millions of Californians with developmental disabilities. So, what are those programs? Here is a quick snapshot of services and supports that would be threatened:

• • All regional center services for Californians with intellectual and developmental disabilities and their families (supported living, supported employment, transportation, day programs, respite, early intervention, group homes, and many more).
  • In-Home Supportive Services for people with disabilities and seniors (IHSS).
  • Covered health care for people with disabilities, low-income children, pregnant mothers, and other low-income Californians (Medi-Cal).
  • All long-term care services, including nursing facilities, prescription drugs, and home and community-based services. (HCBS)
  • School services and therapies for children on Medi-Cal, including school psychologists, speech and language therapists, personal care aides, nurses, and more.

This is the time to speak up and speak out! Educating our elected officials about the critical need for Medicaid-funded services can make a big difference.

On Tuesday, February 25 the U.S. House of Representatives is planning to vote “Yes” or “No” on catastrophic cuts to disability services. Call (866)426-2631 to tell your Congressional Representative to oppose any cuts to Medicaid, which funds Medi-Cal programs!

The vote to cut Medicaid by hundreds of billions of dollars would dramatically impact the availability of services for Californians with intellectual and developmental disabilities. If Congress and President Trump sign a cut to Medicaid into law then California would lose tens of billions of dollars and would likely be forced into cutting programs funded by Medicaid (California’s Medi-Cal). So, what are those programs? Here is a quick snapshot of services and supports that would be threatened:

• All regional center services for Californians with intellectual and developmental disabilities and their families (supported living, supported employment, transportation, day programs, respite, early intervention, group homes, and many more).
• In-Home Supportive Services for people with disabilities and seniors (IHSS).
• Covered health care for people with disabilities, low-income children, pregnant mothers, and other low-income Californians (Medi-Cal).
• All long-term care services, including nursing facilities, prescription drugs, and home and community-based services. (HCBS)
• School services and therapies for children on Medi-Cal, including school psychologists, speech and language therapists, personal care aides, nurses, and more.

Representative David Valadao, a Republican Member of Congress in the greater Bakersfield region, is being widely praised for raising concerns with the proposed cuts to Medicaid. Additionally, last week the disability community participated in rallies and townhalls in the districts of Representatives Ken Calvert, Jay Obernolte, and Young Kim in hopes that those representatives will also raise their voice to protect their constituents from these harmful cuts. Click HERE to watch media coverage of the rally at the office of Rep. Jay Obernolte. The threat continues, however, that this Tuesday Speaker Mike Johnson will secure the votes he needs in the House to pass the Medicaid cuts.

ACT NOW! Call (866)426-2631 to tell your Member of Congress to oppose any cuts to Medicaid!