Weekly Edition - 12.17.24

💢 Critical developments this week in Research Funding, Healthcare Access, and Educational Inclusion. These stories could reshape how we understand disabilities, access treatments, and build more inclusive communities.

The Big Idea

This week’s featured story: a closer look at developments making waves in the I/DD community

⏰ The disability community is facing a hidden crisis that threatens to unravel years of progress in autism care. ProPublica has exposed UnitedHealth Group's covert strategy to dismantle access to Applied Behavior Analysis (ABA) therapy - a move that could leave thousands of families without essential services.

The numbers are staggering: UnitedHealth Group, despite earning $22 billion in profits last year, is implementing a plan that could eliminate up to 40% of ABA providers from their networks in some states. This isn't just about numbers on a spreadsheet - it's about children like Benji, whose ability to communicate and manage daily activities hangs in the balance. When his therapy hours were reduced, his progress reversed dramatically, leading to increased behavioral challenges and regression in hard-won skills.

What makes this situation particularly alarming is that UnitedHealth's own documents acknowledge ABA as the "evidence-based gold standard treatment" while simultaneously working to restrict access to it. Their strategy specifically targets Medicaid beneficiaries - our community's most vulnerable members - through provider network restrictions and increased coverage denials.

For parents and caregivers, the implications are immediate and severe. Many families will face impossible choices: paying thousands out-of-pocket for continued care, searching for increasingly scarce in-network providers, or watching their children lose access to vital services. Medical experts and advocates have condemned these tactics as "unconscionable and immoral."

To protect your family's access to care:

• Maintain detailed documentation of all therapy progress and setbacks

• Keep records of all insurance communications

• Work closely with your treatment team on medical necessity documentation

• Consider connecting with advocacy organizations

• Prepare for possible appeals processes

If you would like to read more, check out the original article at ProPublica's website here.

Moments That Matter

Celebrating the everyday victories, breakthrough achievements, and inspiring individuals

🌟 Watch how one middle school turned "impossible" into "I'm possible" for a student who refused to let her wheelchair define her dreams.

When Za'Cora Nicholson rolls onto the sidelines at Randolph County Middle School, she's not just joining the cheerleading squad – she's rewriting what's possible for our kids. Like many of our children, Za'Cora faces daily challenges. Ataxia, Traumatic Brain Injury, and Encephalopathy affect her mobility, making each movement a testament to her determination. But here's where the story takes an unexpected turn that'll make your heart soar.

You see, Za'Cora didn't just join the team – she became their voice. As the squad's dedicated caller, she leads chants with such spirit that you can't help but smile. Remember those moments when we worried our children might never find their place? Za'Cora's mother felt that too. She noticed her daughter dragging her left leg at age 6, stepping into that familiar world of uncertainty and diagnosis that so many of us know all too well.

But here's what makes this story different – and why it matters so much to families like ours. The school didn't just "accommodate" Za'Cora; they embraced her. Her coaches didn't see limitations; they saw possibilities. Now, Za'Cora practices her cheers at home, using walls for support, filling her house with the same joy and determination that lights up her school's sidelines.

"To see her walk around in the house cheering, just like other students," her mother shares, her voice filled with that pride we all recognize, "that makes me really proud because she's not able to do the other things that other students are able to do."

Isn't this the kind of story we all need? One where a school community comes together, where teammates say things like "Everyone is the same, she's no different from us," and where our children's dreams don't have to stay dreams?

If you're feeling moved by Za'Cora's journey and want to share in more moments of triumph, check out the original article here. Because sometimes, all it takes is one story to remind us that our children's potential knows no bounds.

Across The Nation

From Capitol Hill to community centers: the national updates shaping our collective future

💵 What if you could help create a healthier future for every person with Down syndrome - including your own loved one? That's exactly what the NIH is making possible with its revolutionary $20 million Down Syndrome Cohort Development Program (DS-CDP). This isn't just another research project - it's the largest investment in the INCLUDE Project's history, designed to transform our understanding of Down syndrome from birth through adulthood. Beginning in late 2025, this unprecedented study will bring together thousands of families, leading researchers, and five major research centers across the country to unlock the mysteries of health conditions that affect our community, including Alzheimer's disease. For parents who've wished for better answers and more effective treatments, this program represents hope in action, with special attention paid to including voices from historically underrepresented communities. Your family's participation could help write the next chapter in Down syndrome research and care. If you would like to read more, check out the original article.

State Spotlight

Local developments that matter: how local policies and changes impact your community

😷 Did you know the air we breathe could be silently impacting our community's newest members? A groundbreaking study from the University of Utah has revealed something every expecting family in our caregiving community needs to hear - especially if you live in an area with high ozone pollution (that hazy, heated air that often settles in urban valleys during summer months). The research shows that exposure to this type of pollution during pregnancy, particularly in those precious middle months, may increase the likelihood of intellectual disabilities by more than 50% compared to siblings. While this study focused on Utah, its implications touch all of us who live in areas where summer brings that familiar haze - from Los Angeles to Houston, from Denver to Chicago. As parents and caregivers who understand the journey of supporting loved ones with intellectual disabilities, we can share this knowledge with expecting families in our circles, encourage them to check local air quality reports during summer months, and suggest indoor activities when pollution levels spike. If you're looking for a deeper understanding of this research and what it means for our families, you can read more in the original news article here.

🏫 Imagine a future where your child with I/DD walks onto a college campus and feels truly welcomed from day one - that's the transformative vision emerging from Michigan State University's groundbreaking Disability in Higher Education Summit. Instead of the usual struggle for basic accommodations, MSU is pioneering a complete cultural shift where disability is celebrated as part of campus diversity, not treated as a problem to solve. The summit brought together students living with disabilities, leading advocates, and university leaders to reimagine how higher education can work for everyone through practical changes like flexible course options and built-in accessibility features.

For those of us planning our children's educational futures, this represents more than just another conference - it's a beacon of hope showing that major institutions are finally listening to our community's needs and taking real action to create the inclusive learning environments our loved ones deserve. The summit's emphasis on proactive support and universal design means future students might spend less time fighting for accommodations and more time simply learning and thriving. If you're navigating college plans for your child or supporting a young adult in higher education, here is the full article to learn more about these encouraging developments that could make your loved one's college journey significantly smoother.

Safety Strategies for Autism Spectrum Disorder 

Every parent knows the flutter of worry when their child heads into the world, but for families touched by autism spectrum disorder, that concern takes on deeper meaning. The unique ways individuals with ASD process their surroundings – from busy sidewalks to everyday social interactions – can create safety challenges that many of us might never consider. While these challenges are real, they don't have to limit independence or quality of life. Understanding and preparing for safety needs empowers both caregivers and individuals with ASD to navigate life's journey with greater confidence. To view the Autism Family Safety Handbook created by RJ Barnabas Health click here.

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