The following is an open letter written by former Missouri Senator Scott Rupp. 

Emily’s Story: A Call for Action to Restore Hope

Raising a child with developmental disabilities is not a journey for the faint of heart. It’s like playing an unending game of Whack-A-Mole, but parents like us are constantly knocked down instead of joyfully wielding the mallet. Every time we celebrate progress for our daughter Emily, we’re met with yet another blow from the unrelenting bureaucracies holding the mallet—insurance companies, school districts, state agencies. They swing indiscriminately, erasing gains and shattering hope.

We’ve fought hard for Emily. From the early days of battling insurance companies to approve essential therapies to advocating at school district meetings to ensure she was placed in inclusive environments. We stayed vigilant through years of Individualized Education Program (IEP) meetings, pushing for every support she needed to thrive. We even convinced the district to keep her in the school system until age 21, knowing it was vital to her development.

But as her graduation approached, we faced what every parent of a child with disabilities dreads: the cliff. A void where services and support abruptly end. For Emily, that meant no employment prospects, no programs willing to work with her behaviors, and no hope for the independence every parent dreams of for their child. Years of progress, advocacy, and therapy were on the verge of unraveling, leaving us watching helplessly as our vibrant, determined daughter regressed.

And then we found hope. Community Living stepped in, offering a program for young adults like Emily—kids who weren’t ready to navigate the world independently but still had potential waiting to be unlocked. They called it the Young Adult Program, and it was a lifeline. Tailored for individuals aged 18-25, the program was designed to build skills, foster friendships, and prepare kids like Emily for employment and a meaningful life.

For the first time, Emily was excited about her future. We started calling it her “college,” a place where she could go, just like her siblings, to grow and learn. She talked about it constantly, her face lighting up with the possibilities. The staff was welcoming, the facilities were ready, and we had painstakingly worked through the mountain of paperwork with the Department of Mental Health (DMH) and the Developmental Disabilities Resource Board (DDRB) to secure her spot. Emily was set to begin on August 1st.

And then, on June 30th, everything fell apart.

The state withheld funding for the program in what it called a principled stand. Overnight, the doors to Emily’s future were slammed shut. The mallet came crashing down once again, driving her back into the darkness of regression, isolation, and hopelessness.

This decision didn’t just impact Emily; it rippled through our entire family. Emily cannot stay home alone, so we had to cut back on work hours, straining our finances. The joy and anticipation that once lit up her face were replaced by confusion and despair. Watching her withdraw, knowing that the system failed her, feels like a fresh wound every day.

But this isn’t just Emily’s story—it’s the story of countless families who were left scrambling when their lifeline was snatched away. Parents were forced to give up careers. Children lost progress they worked years to achieve. Families watched dreams turn to ashes, all because of a bureaucratic decision that turned a blind eye to the human cost.

This is a call to action.

We need lawmakers who can see past the numbers on a budget sheet and into the lives of families like ours. Emily deserves her “college.” She deserves the chance to grow, learn, build friendships, and find her place in the world. Her future shouldn’t be held hostage to political games.

To legislators: the time to act is now. Restore the funding. Reopen the programs. Let Emily—and every other child like her—find their purpose, hope, and joy. Don’t let the mallet fall again.

The Good News: You Can Help!

Community Living and other local organizations are waiting for Missouri’s legislators to approve more waiver funding so Emily and others like her can receive our services. Be sure your elected officials understand the importance of 1915(c) Home & Community-Based Waivers and how much they mean to your family and community by contacting them directly. More waiver funding allows more Missourians to receive much-needed disability services.