16/01/2026
What We Lost When Disability Support Became Less Relational
When people talk about disability supports in Indiana, the conversation often centers on Medicaid waivers, funding levels, workforce shortages, or eligibility criteria. Those elements matter, but they do not fully explain what many individuals, families, and professionals have experienced over the last twenty to twenty five years. What has changed most quietly and most profoundly is not a single program or policy, but the relational infrastructure that once held people in place.
Support did not disappear overnight. It was thinned over time through a series of decisions that prioritized efficiency, standardization, privacy compliance, and documentation. Each change made sense in isolation. Together, they reshaped the system in ways that reduced connection, visibility, and shared responsibility.
Medicaid waivers were never meant to operate alone. They relied on a set of collateral tools that made support usable in real life. These included person centered practices such as lifestyle planning maps, circles of support, collaborative planning meetings, and visual tools that helped people understand their own lives across systems. As those tools faded, the experience of the waivers changed as well, even when eligibility technically remained the same.
One of the most significant shifts was the move away from visual, relational person centered practices toward written documentation as the primary expression of planning. Historically, planning often involved large visual maps created collaboratively with the person and the people they chose to invite. These maps captured history, identity, relationships, places, goals, and the many systems a person navigated. They were often photographed or taken home. People revisited them. They used them to remember what had been decided, to understand who was involved, and to hold others accountable.
These practices were especially important for neurodivergent people, including autistic adults, who often process information visually and benefit from having complexity externalized. The maps reduced cognitive load. They created continuity over time. They made abstract systems concrete and navigable.
Over time, these practices were replaced by formal written plans such as the PC ISP and related documentation. These documents are standardized, lengthy, and written primarily to meet regulatory and billing requirements. They are not inherently harmful, but they serve a different audience. In practice, many individuals never receive a copy of their plan. Even fewer have the time, training, or bandwidth required to read and interpret it. Planning shifted from something people actively participated in to something that existed largely on paper.
Alongside this shift in tools came a shift in culture. Person centered planning meetings were once gatherings that centered the person as a whole human being. People chose who attended. Meetings often happened over lunch. Food was shared. Accomplishments were named. Milestones were acknowledged. Supporters met one another. The meeting itself built connection and commitment. It helped people understand how they fit together around someone’s life.
These gatherings were not incidental.
They were the mechanism by which relationships were strengthened and responsibility was distributed. When meetings narrowed or disappeared, supporters stopped meeting one another. Informal supports drifted away, not because they did not care, but because there was no longer a structure inviting them to stay connected.
At the same time, staffing structures changed. Over many years, positions were renamed, narrowed, or eliminated. Pay stagnated or declined relative to responsibility. Time once spent building relationships, convening teams, and solving problems collaboratively was replaced by documentation and productivity requirements. People working inside the system did not lose skill or commitment. They lost the conditions that made good work possible.
The effects of these changes are now visible everywhere. Families are expected to coordinate complex systems largely on their own. Case managers and providers carry more responsibility with fewer supports. Burnout is widespread. Support networks are fragile, often relying on one or two exhausted people.
Support is not only a moral concept. It is math. When you reduce the number of people involved, increase administrative demands, and remove tools that make relationships visible, the system loses capacity. Even if services exist on paper, usable support declines.
This matters especially now, as formal supports are pulled back further. Telehealth access has been reduced. Expectations of independence have increased. Families are told to rely more on so called natural supports. But it is important to acknowledge that the system itself has spent the last two decades eroding the tools that helped people identify, build, and sustain those supports.
We are asking people to rely on natural supports in a system that no longer helps them see or build those supports.
Lifestyle planning maps and circles of support were not outdated or idealistic. They were practical tools that recognized a basic truth. People are supported by networks, not programs. These tools made those networks visible, shared, and sustainable. Losing them did not just change paperwork. It changed how people experienced their lives and how much support anyone could realistically provide.
What has been lost is not just a method, but a way of understanding support as relational rather than transactional. Naming that loss is not about returning to the past. It is about understanding how we arrived here and why families and individuals so often feel isolated inside systems that were meant to support them.
Jennifer David, BCBA
