Bridging the Gaps in Disability Policy: Reclaiming the Promise of the ADA

More than 35 years after the passage of the Americans with Disabilities Act (ADA), has the law lived up to its promise of ensuring full participation and equal opportunity for people with disabilities? This question was at the heart of New America’s recent event, Bridging the Gaps in Disability Policy, a dynamic discussion forum about how to strengthen connections among fragmented systems and create new policy frameworks that truly support the disability community.

“All policy is disability policy,” said Carrie Gillispie, Project Director of Early Development & Disability for New America’s Education Policy Program, as she opened the event. “Policy is a reflection of and a driver of a country’s values.” Yet, she noted, many of the systems meant to support disabled Americans are being swiftly eroded by policy changes, major federal funding cuts, and mass layoffs.

As New America works to meet the urgency of this moment, it's deepening its commitment to disability inclusion across programs and priorities. This means hosting accessible, inclusive events to learn directly from people with lived experience, in alignment with a core disability rights mantra: “nothing about us, without us.” Their insights, alongside policy expertise, are essential to how we effectively reshape systems.

“We have an opportunity right now,” said forum moderator Taryn Mackenzie Williams, Senior Fellow for Disability at the National Partnership for Women & Families. “We are compelled to reimagine what it means to meet the promise of the ADA…we need to reckon with the reality of those systems.”

Life Between the Gaps

For Dr. Ashland Murphy, a former teacher and mother of four, this systemic reckoning starts with healthcare. As an example, to kick off the first panel at the event, Dr. Murphy described the maze of Medicaid referrals she navigates to get care for her autistic son and her triplet daughters, who were born prematurely. “It goes back and forth quite a bit. We call the specialist again and did they receive the referral?...We are playing monkey in the middle here.”

If Dr. Murphy’s family shows up without the right referral, they’re turned away, despite having driven hours to get there. Everything from gas and parking costs to exorbitantly high medical expenses add up, and the financial and emotional impacts are steep. Reflecting on these experiences, Dr. Murphy believes policy must better align with the realities of being a caregiver for family members with disabilities.

Christopher Worth, an educator, PhD student at the University of Missouri St. Louis, and community organizer with cerebral palsy, further emphasized the burden of bureaucracy. “Our stories get co-opted and sort of watered down by systems that make us constantly verify disability. My disability is a constant. It is not going away. I see it as a gift. I am lucky to have that privilege. But so many other people that I work with as a community organizer, they need to be reminded often times that their power exists outside of these systems.”

However, the systems are designed in ways that disempower disabled people, rather than supporting them to thrive. For instance, Jocelyn Mondragón, the Communications Manager at New Disabled South, shared how benefits programs can trap people in cycles of dependence. “They are supposed to help disabled people live independently and drive community,” she said, “but they really restrict us.” Mondragón went on: “If you are too independent, you risk your support services. If you are not dependent enough, you do not qualify for those services.”

These restrictions are further compounded by inequities in access to healthcare. And for Alisa Yang, an artist and filmmaker living with chronic illnesses and long COVID, these inequities take a toll: “It is expensive to be sick in this country and being sick is also a full-time job.” But, as Yang pointed out, actually finding a job as a disabled person can be a significant challenge. And yet, employment should not be an indicator of a person’s value. “This notion that people are only as worthy as their…productivity is really untrue and hurtful,” said Yang.

Across these stories ran a shared message: people with disabilities are not passive recipients of policy outcomes; they are experts on their own lives and the systems they operate within.

The Power of Policy

The second panel at the zoomed out to a broader policy lens, addressing how systems often fail the people they’re meant to serve, and what can be done to change that.

Jazmyne Owens, Senior Policy Advisor, PreK-12 Education Policy, for New America’s Education Policy Program, explained how harms caused by the current administration are further revealing existing cracks in the American education system. In particular, she referenced the Individuals with Disabilities Education Act (IDEA), a law that “promised 40 percent of funding to be covered by the Feds and they have never come close to fulfilling that promise.” Owens went on to say: “In addition to that promise still being unfulfilled, the current administration is taking this opportunity to just decimate programs and money that has been set aside for really vital initiatives that students with disabilities, English learners, that really all students would benefit from.”

Gillispie, who earlier introduced the event, further reinforced the troubling state of the American education system, rooted in her experience as a school psychologist. Recognizing the compounding forces of racism and ableism, Gillispie spoke to the effects that a lack of resources has on every phase of childhood, from early intervention to K-12 education, and how evidence-based supports are frequently denied. “If we had more cohesive and less siloed systems in the constellation of supports for families,” she said, “things would work a lot more smoothly.”

Vicki Shabo, Senior Fellow for Gender Equity, Paid Leave & Care Policy and Strategy at New America’s Better Life Lab, echoed this sentiment, addressing failures within the care economy. “Workplaces are not set up to acknowledge that people are caregivers and workers,” remarked Shabo. “They’re not set up to acknowledge that people might have not just visible, but invisible disabilities.”

Looking ahead to solutions to fill gaps in policies and services, An-Me Chung, Director, Teaching, Learning & Tech & Strategic Advisor, for New America’s Education Policy Program, discussed the role of technology—specifically artificial intelligence. “Technology has got to be safe and effective and it has to be free from discrimination,” Chung said. “Guardrails need to be put in place to make sure that data that is used is safe and unbiased.” Ultimately, as with all efforts for true inclusion, Chung emphasized that “it needs to be a forethought rather than afterthought.”

“We Have Everything We Need”

As the event drew to a close, Gillispie returned to a theme that had woven through both panels: the need for collective will to drive change. “People say things are impossible or too complicated,” she said. “But actually, we have everything we need. We just have not had the pressure to make those changes happen.”

Williams agreed, reminding the audience that centering disabled perspectives is key to moving forward. “We know what works,” she said. “Make the choice to fund it…[and] center the voices of people with disabilities…experiences and expertise will lead the way.”