I wanted to follow up on my last post with more of what happens when incentives are pointed in the wrong direction. Denials and obfuscation are just the start. From there, it cascades.
A single NO doesn’t stop with one family. It spreads, it compounds, and it spirals out of control. Here are three of the ways.
Downstream failure 1: In this space, most caregivers learn how to support their child from other caregivers. Each caregiver, almost by definition, has a dataset of one. So when a parent is denied, or told a specific reimbursement isn’t available, that information never enters the shared knowledge of the community. It just disappears. The same dynamic carries misinformation. Picture a parent told their child must be two years behind grade level before the school will even assess them, a way of working around the fact that the child already qualifies under OHI. A parent who knows their rights can push back. Most don’t know the line is even contestable. They accept it, and that misinformation spreads. A single denial can carve a hole in needed supports for an entire community within weeks. It is simply the virality of information, or in this case, misinformation.
Downstream failure 2: A parent’s ability to pay for the services their child needs is often dependent on reimbursement or Department of Developmental Services funding. If that funding is denied or delayed, the individual who needs the support is harmed. But that is just the immediate issue. The broader issue is that as individuals get denied, demand for the service drops (demand being the need for the service plus the ability to pay). As demand drops, the ability for service providers to stand up a sustainable business plummets. As supply plummets, awareness plummets. It is a vicious cycle, and it is how we end up with support deserts in the communities that need them most.
Downstream failure 3: Whatever the original intent, the systems we have survive because they are far cheaper than the alternative. Programs like IHSS, Regional Center housing support, and early intervention exist because they cost far less than what replaces them when they fail. Every denial and every hurdle pushes more families toward those more expensive, less integrated, more costly outcomes. That is a future we don’t want and can’t afford.
These are just examples. There are endless versions of the same pattern: the virality of information, the absence of it, and the long shadow cast by services left unprovided.
It is why care identification and coordination have to actually exist, and why it has to be built around the individual, parent, and the caregiver. The people who hold control today are responding to short-term incentives that were never designed around the child or the family. Coordination built around them is how that changes.
Major enhancements to Undivided’s person-centered planning tools, coming soon, can help make discovery, advocacy, and access a reality instead of luck.
– Seth Besse, CEO of Undivided
