“Nothing About Us Without Us”: Why the Wagoner Family Advocated to Save LISS Funding

11th hour negotiations and intense advocacy saved program from total cuts

Janet Wagoner was relieved to hear the Low Intensity Support Services (LISS) Program, which was at risk of being eliminated entirely, was spared in the eleventh hour in the FY 2026 budget for the Maryland Developmental Disabilities Administration (DDA). While the program was not restored to its full funding, advocates remain hopeful that in future years LISS funding will increase, as the need remains ever-growing.

LISS is a unique and impactful program, designed to support people with intellectual and developmental disabilities (IDD) and their families to increase or maintain independence and more fully participate in their communities. Historically, it has provided small grants of up to $2,000 annually for some 2,000–2,500 people with IDD who are eligible for DDA services. LISS funding is the only state-funded support these families receive all year, and the need is so great that funds are awarded through a lottery system.

Janet and Ronnie Wagoner and their 15-year-old son Cooper have benefited greatly from the program. Cooper was diagnosed shortly after birth with a very rare neurobehavioral syndrome called Smith-Magenis Syndrome (SMS), a complex developmental disorder that affects multiple organ systems of the body and comes with physical, developmental, and behavioral features, in addition to a circadian rhythm sleep disorder.

Upon hearing that the LISS program might be eliminated, Janet, a firm believer in the disability rights slogan, “Nothing about us without us,” quickly became a vocal advocate for all the Maryland families who would be affected by the loss of services.

In a letter to Maryland lawmakers, she detailed the many LISS adaptive services her son had benefited from over the years, noting that they are “extremely costly and not affordable for most Marylanders.”

With SMS, Cooper suffers from a sleep disorder and can wander at nighttime. Using LISS funding, his family was able to purchase a Safety Sleeper medical enclosed bed system that is an absolute necessity when they travel away from home.

Janet is also a strong advocate for people with disabilities having access to the community. “I often feel like they are discriminated against when it comes to assimilating into society. It’s not only the physical barriers but often the way people look at you. Many families worry their loved ones will be judged for behavioral outbursts at parks, malls, restaurants and public facilities.“

She credits the LISS program with helping people with IDD live independently and thrive in their communities. “Having equipment that provides safety and accessibility is crucial to their quality of life.”

An active family of five, the Wagoner’s include an “extremely social” Cooper in a variety of their sporting activities, vacations, and community events.

“People with SMS are well known to lead a sedentary lifestyle due to their disability. We try our hardest to keep Cooper engaged in activities that promote exercise and socialization, like bike riding and snow sports. He has also participated in adaptive ski lessons and just this year is now learning how to use a SnowGo ski bike with adaptive lessons at local resorts.”

Through the LISS program, the family has been able to finance a bike trailer, an adaptive stroller that resembles a wheelchair, adaptive ski lessons, home modifications, an adaptive bicycle, and laptop computer.

As part of the organization’s advocacy efforts throughout Maryland’s legislative session, Penn-Mar CEO Greg Miller reminded lawmakers that the high-impact program the organization helps to administer was designed as “a lifeline to help families be as healthy as they can be, given the stress and challenges involved with caring for a family member with a disability.”

Thanks to fierce advocates such as the Wagoner’s, hardworking advocacy groups such as the Maryland Association of Community Based Services, and key legislators, whose leadership throughout budget conversations ensured that the IDD community’s concerns were addressed, the LISS program will continue in the coming fiscal year, though on a much smaller scale.

Penn-Mar is still working with DDA to iron out the finer points of how the program will work in FY26, and what Penn-Mar’s role will be. And though a lot still needs to be resolved, one thing is certain — families like the Wagoner’s and many other Penn-Mar advocates will always work to ensure that people with IDD have access to the resources they need to live their best lives.