Possibilities in a Fractured System: When Developmental Disabilities and Mental Health Meet in a Fractured System
A year ago, I sat with a mom whose journey raising a son with developmental disabilities had shaped not only her family’s story but also helped inspire real systems change. Her son, now an adult, is nonverbal, on the autism spectrum and requires significant support. Like so many families, theirs has faced moments of crisis with few options and even fewer safe, supportive places to turn.
She spoke about what it was like to try to find help when her son was in crisis for most of his teens. The challenges continue now that he is a thirty-something adult. Her stories all had the same theme: her choices were very limited. The system, as it stands, doesn’t offer many pathways for families like hers. When housing stability is threatened and programming options are limited, the fallout ripples through every aspect of the individual in crisis’s life and their entire family’s life. With waiting lists that are months and even years long, to be kicked out of your supportive housing or program is devastating for families who don’t have other options.
As neurotypical people, we may not think twice about navigating a busy ER. For someone with developmental disabilities, already in crisis, it can feel like being dropped into chaos with no tools or translation. And many ER staff, through no fault of their own, aren’t equipped with the training or understanding to respond effectively to individuals with developmental disabilities. This only compounds the crisis.
But this isn’t a story about what’s broken. It’s a story about what’s possible when we choose to act. Instead of accepting the limitations of the current system: this parent joined efforts to help design 1800 Chicago, a facility built specifically for individuals with developmental disabilities and mental health needs. She could have focused on what wasn’t working. Instead, she chose to become part of the solution.
When we approach problems believing there are no solutions, we only see the obstacles. When we move forward with an open mindset grounded in hope and creativity, we are more open to finding new possibilities.
1800 Chicago exists because someone asked a better question. What if crisis care did not have to overwhelm the people it was meant to help? What if environments reduced distress rather than amplifying it? What if staff were trained to understand behavior as communication, not defiance?
Thoughtfully and intentionally designed and staffed, 1800 Chicago is one of those possibilities that has come to life. It stands in contrast to traditional emergency rooms that can overwhelm people in crisis, especially those with sensory sensitivities, communication differences, or complex developmental disabilities and complex needs. The result is a space designed around human needs. Calmer environments. Staff trained to support regulation and dignity. Clear pathways to stabilization and ongoing care.
An element that I found striking in talking with this parent is how achievable many of these changes are. The most effective elements do not require massive capital investments; they require intention.
- Lower lighting. Reduced noise. Predictable spaces.
- Sensory supports, such as weighted items or fidgets, can help people regulate.
- Staff training focused on behavioral understanding, not control.
- Inviting trusted support people to remain present during care to reduce fear and build trust.
- Creating safety without restraints by addressing the root causes of distress.
- Shifting from managing behavior to understanding it, recognizing every behavior as communication.
These approaches are grounded in empathy, not expense. They are rooted in dignity, not compliance. We owe families like the one I spoke with more than limited options and long waits. We owe them systems built with understanding and care.
National Alliance on Mental Illness Minnesota has long highlighted the need to bridge the gap between mental health and developmental disabilities. As recently retired Executive Director Sue Abderholden often emphasizes, these systems have historically operated in silos, leaving individuals who live at their intersection without the integrated care they deserve. Programs like 1800 Chicago and Laura Baker Services Association’s Behavioral Support Program show what’s possible when we replace fragmentation with collaboration and when mental health expertise is embedded within disability services. This kind of systemic integration is not a luxury; it is essential.
So here’s the invitation: Start small. Start now. Spread the word. There are things we can do today, with what we already have, to make things better for individuals and families navigating developmental disabilities and mental health needs. Share this message with others in health systems and hospitals. Help spread the word to healthcare professionals. This is how systems shift, one thoughtful step at a time.
Together we can and we will.
More About 1800 Chicago
1800 Chicago Avenue South in Minneapolis is a Hennepin County behavioral health center for adults 18 and older experiencing mental health or substance use crises. It primarily serves Hennepin County residents and is designed to remove common barriers to care. People can walk in without an appointment, insurance or ID, and first responders or crisis teams can bring individuals directly to the facility. Services include immediate behavioral health assessment, crisis stabilization, withdrawal management and connection to longer-term supports, offering an alternative to emergency rooms or jail. More information is available at Hennepin County Behavioral Health Center: hennepin.us/1800-Chicago
Heather Durenberger
Consultant, Laura Baker Services Association
Heather is a nonprofit impact strategist, TEDxMinneapolis speaker and a member of the LBSA Behavioral Support Services Design Team. The program provides behavioral consultations and training to families and organizations that support people with IDD who are experiencing behavioral issues.