ARCO DEL ÁREA DFW.

**Luke’s Journey: A Roller Coaster of Dreams and Challenges**

Meet Luke, an 11-year-old from Trophy Club, Texas, who loves roller coasters, music, and diving into math and history. Like any kid his age, Luke has big dreams and a zest for life. However, Luke’s journey is a bit different. He has a rare genetic syndrome, intellectual and developmental disabilities (IDD), and cortical visual impairment. These conditions mean Luke needs extra support for daily activities like feeding, bathing, dressing, and even moving around.

Recently, Luke got a new wheelchair with power assist, and it’s been a game-changer. For the first time ever, he can decide where he wants to go in the house—on his own terms. It’s a small but monumental step toward independence, and we couldn’t be prouder.

Right now, Luke is enrolled in the Medically Dependent Children’s Program (MDCP), which provides him with the services he needs. But here’s the catch: this program ends when he turns 22. To ensure Luke continues to get the care he needs as an adult, we’ve put him on the interest lists for two Medicaid waiver programs—CLASS (Community Living Assistance and Support Services) and HCS (Home and Community-Based Services). These programs could provide life-changing supports like personal care attendants, therapies, and home modifications.

The problem? The waitlists in Texas are so long that they feel impossible. Luke has been on these lists since 2015, but as of February 2025, he’s still number 36,945 for CLASS and 47,630 for HCS. At this rate, he’d be over 140 years old before his name reaches the top. Yes, you read that right—140 years old!

And even when families finally get a waiver, they face another hurdle: low pay rates for caregivers. Non-medical attendants make just $10.60/hour on average, which makes it hard to attract and retain quality providers. This leaves families scrambling to fill the gaps.

We don’t know exactly what Luke dreams about for his future—maybe it’s living in his own place, choosing his friends, or finding a job he loves. Whatever it is, we want him to have the chance to chase those dreams. But to make that happen, he’ll need ongoing supports and accommodations.

As parents, we’re committed to giving Luke every opportunity we can. But without additional funding for Medicaid waivers in Texas, it’s an uphill battle. We hope the Texas Legislature steps up to reduce these waitlists and invest in people like Luke—because every kid deserves the chance to live their best life.

Luke’s journey has already been full of challenges and triumphs, but with the right support, his future could be as exciting as his favorite roller coasters. Here’s hoping we can make that happen—not just for Luke but for the thousands of others waiting for their turn.