In Their Own Words

Rob Hudson is a Frank Trippett Advocacy and Outreach Fellow, and Community Outreach Associate for The Arc of Northern Virginia. Rob’s advocacy on behalf of his daughter, Schuyler, who has a rare disorder called polymicrogyria, has guided his personal philosophy for the past twenty years.

This time of year, the Virginia statehouse becomes a buzzing hive of activity. For sixty days, the General Assembly meets and makes decisions that affect the lives of thousands of Virginians with intellectual and developmental disabilities. It’s our best opportunity to take the cold numbers and lofty legalese that compete for their attention, and instead turn those paper figures into people. That’s when our loved ones leave the realm of the conceptual and transform in front of legislators’ eyes into genuine human beings whose ambitions, joys and very lives depend on the choices made in Richmond now.

In preparation for our meetings with policymakers, a number of devoted advocates shared their stories and those of their loved ones with IDD. A trip like the one we took on February 6 to Richmond can be an exhausting endeavor. These are families that are often stretched to their limits in regard to time and energy, and yet there they were, orange scarves around their necks and testimonials in hand. Their words were effective.

For someone like me who writes about these issues both for a living and for the deeper reasons that have nothing to do with a paycheck, I know I’ll never compose a paragraph so eloquent as the simple words of an advocate with a disability or their devoted loved ones as they describe their own lives and struggles and victories. Experience carries real power. It demands to be heard.

For Michael and Karen Thomas, as with other parents of children with IDD, advocacy on behalf of their 32-year-old son Drew has been a labor of love. “Drew has a smile that will light up a room, and through his nonverbal communications, he can be warm, gentle, and loving,” Michael said. “He enjoys swinging, walking in the park, and listening to music from Michael Jackson to Sade. He savors his time with family on weekends and loves home cooking.”

Drew has severe intellectual and cognitive disabilities, as well as low vision, as a result of a rare disorder called de Morsier Syndrome. Nineteen years ago, the Thomas family was able to secure a DD Waiver, allowing them extra support and respite through care attendants. When Drew transitioned to a group home eight years ago, the waiver helped to secure a group home and day program placement that was equipped to address his complex needs with the necessary support staff.

“We still have experienced some challenges with the waiver,” Michael said, “including not being able to find care attendants or enough appropriately trained attendants. Additionally, multiple meetings and volumes of paperwork and forms are required for his support. Some things in Drew’s life will not change, and they have been well-documented as permanent, but we must continue to re-establish the need repeatedly.”

Despite those challenges, Michael says he doesn’t know what his family would do without the waiver, which has helped them in many ways. “The waiver has allowed us to live productive lives,” he said, “and more importantly it has allowed us to stay together as a family in support of our son. It is difficult to think about Drew’s quality of life and our lives without the waiver.”

Sarah Cornett is a twenty-six-year-old with Autism Spectrum Disorder and Type-1 diabetes. She works at The Arc of Northern Virginia as part of the Tech for Independent Living team, a job she enjoys very much. She credits the mentors she’s had over the years and the good special education system in Arlington for her success. Sarah has been on the DD Waivers waitlist for over five years.

“Although I live at home now, I am hoping someday to live on my own,” Sarah said. “Because of my medical needs and my disabilities, I will need continued medical insurance, therapy support, job support and accommodations, and social and recreational opportunities for a successful life.”

Her mother, Elaine Cornett, elaborated on their family’s situation.

“We’ve had our ups and downs navigating the special education system,” she said, “and her transition supports to semi-independent adulthood are ongoing. We are currently petitioning to keep her on our health insurance, and that decision is pending. That’s a frightening prospect for a person with a life-threatening chronic illness that requires expensive medication and medical equipment.”

For Paul Brown, freedom has come through independent living with supports.

“I have had waiver services for three years now, but since I have been able to move out of my parent’s home, I feel like I’m living in a ‘zen-den.’ This is a dream home for me. I am no longer under stress and anxiety because my sponsored home provider works so patiently with me and respects my rights.”

Paul’s parents, Marisa and Doug Brown, explained further.

“We had to wait for many years before our son moved off the Priority One DD Waiver waiting list. By that time, I was 70 years old, and my husband was 72 years old. We were appreciative of the in-home services Paul received and, most especially, the respite care that allowed us to take a vacation separate from our son after 40 years.

“But we eventually realized that should one of us become seriously ill, the in-home support would be insufficient to meet our family’s needs. I am very pleased to report that since October 2023, Paul has been the recipient of a sponsored home placement. Paul has found a home that has absolutely brought out the best in him. I think a combination of a new and caring person, a new environment where he feels more in control of his life, and a new sense of responsibility has worked wonders! Paul is engaged in activities that, as his parents, we just couldn’t get him to do. Best of all, he is HAPPY!

“In fact, this is the happiest he has ever been. When Paul was growing up, his school experience was so negative that he was always anxious. Now he can relax and be calm, as can we because we believe he has found a forever home. Increased funding for the Waiver services is critical because we know that there are still families like ours in urgent need of these services.”

The Frank Trippett Advocacy and Outreach Fellowship was established in 2021 by the family and friends of the late Frank Trippett. It was created as a tribute to his years-long advocacy on behalf of people with intellectual and developmental disabilities. The Fellowship seeks to create an enduring legacy to Frank’s advocacy and deep personal commitment to helping other families like his connect to vital resources.

Consider making a financial contribution to The Arc of Northern Virginia to honor Frank’s memory and his commitment to outreach and advocacy.

 Back to Top