Weekly Edition - 12.24.24

🧑‍⚕️ From the nationwide Direct Support Workforce Crisis to Major Airline Accessibility Reforms, this week brings critical developments affecting daily care, travel freedom, and community inclusion.

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The Big Idea

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

💭 Imagine waking up tomorrow and discovering your loved one's support worker isn't coming. Not just for a day, but indefinitely. For thousands of families across America, this nightmare is becoming reality. ANCOR's shocking 2024 survey reveals a system on the brink of collapse, with 90% of disability service providers fighting a desperate battle to keep their doors open.

Behind these statistics lie real families making impossible choices. When Jessica's residential program closed – one of the 39% of programs forced to shut down – her mother had to quit her job to become a full-time caregiver. It's a story playing out in 47 states, where dedicated support professionals are reluctantly leaving the field they love, not because they want to, but because they can't afford to stay. While fast-food restaurants increase wages to attract workers, disability service providers remain trapped by stagnant state funding rates that haven't kept pace with inflation.

The ripple effects are concerning. With 69% of providers turning away new referrals, families searching for services find themselves hitting dead ends. Even more concerning, 45% of providers report an increase in safety incidents, while 57% are operating in areas with no other service options. The crisis has created service deserts, leaving entire communities without essential support.

But there's reason for hope. This unprecedented crisis has sparked a national conversation about the true value of direct support professionals. Advocacy groups are gaining traction with policymakers, and innovative solutions are emerging from communities nationwide. In states like Minnesota and New York, pilot programs testing new funding models have shown promising results, proving that change is possible when we work together.

The road ahead won't be easy, but our community has never backed down from a challenge. By raising our voices together – parents, providers, and advocates – we can turn this crisis into an opportunity for lasting change. The complete ANCOR survey findings are available in the original report, and they provide powerful ammunition for the fight ahead. Because when it comes to supporting our loved ones with intellectual and developmental disabilities, giving up isn't an option. The time for action is now, and together, we can build a stronger, more sustainable system of care.

Across The Nation

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

🛫 The U.S. Department of Transportation has just unveiled what many are calling a game-changing victory for disability rights in air travel. Secretary Pete Buttigieg's announcement introduces unprecedented protections for the 5.5 million Americans who use wheelchairs, addressing years of challenges that have left many hesitant to fly due to concerns about equipment damage and dignity in transit.

These comprehensive new rules, effective January 16, 2025, mandate everything from enhanced staff training to rapid wheelchair return policies and dignified assistance standards. Airlines must now provide loaner equipment, reimburse accessible ground transportation when wheelchairs are delayed, and ensure proper handling of mobility devices – changes that could finally make air travel a reliable option for families in the disability community. If you would like to read more, check out the original article here.

State Spotlight

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

🍳 Inside a bustling Dallas College kitchen, a revolutionary culinary program is cooking up life-changing opportunities for adults with intellectual and developmental disabilities. Through an inspiring partnership with Hugs Café Inc., students are mastering professional kitchen skills - from food safety protocols to complex recipes - while building confidence, independence, and lasting friendships.

With the program expanding from 15 to 24 students next year and graduates proving to be exceptionally reliable employees, this initiative is addressing the stark reality that only 19% of adults with I/DD participate in the workforce nationwide. For families wondering what's possible for their loved ones' futures, this program's secret ingredient might surprise you - it's not just about cooking, but about creating a community where purpose and acceptance are served up daily. Discover how this model could spark similar opportunities in your area by diving into the full story of these culinary trailblazers.

👪️ In a heartwarming display of community spirit, The Arc Baltimore's Adopt-a-Family Drive has brightened the holidays for dozens of families in the disability community this year. Through their innovative matching program, over 60 families received customized support ranging from holiday gifts to educational materials, with one standout story being the Webb family, whose son Bryton discovered his musical talents through piano lessons funded by the organization's family fund. This initiative is significant because it demonstrates how targeted community support can create both immediate joy and lasting impact for families in the disability community. The program exemplifies how organizations can create meaningful connections that extend beyond seasonal giving to provide year-round support and opportunities for growth, inspiring both families seeking assistance and donors looking to make a difference in their communities.

Ever feel like you're running on empty while caring for others? You're not alone. As caregivers, we often put everyone else's needs before our own, leading to burnout that can affect both us and those we care for. But here's the truth: taking care of yourself isn't selfish—it's essential. That's why we're excited to share Johns Hopkins Medicine's comprehensive Family Caregiver Toolbox. Ready to prioritize your wellbeing?

Got thoughts? We’d love to hear from you at [email protected]