What gets measured gets managed
What problem are we trying to solve? Right now, IDD support providers cannot afford to carry float staff who are not providing care. At least that’s what our provider told us on Tuesday afternoon.
If you remember, we just changed over between agencies. We went with a highly recommended, small agency that commits to serving all the families it takes on. We like them. They hired a three-member care team that cover shifts in our home seven days a week. Regrettably, one of our care team was potentially exposed over the weekend. The dad of the consumer our DSP spent time with on Saturday developed symptoms on Sunday and eventually tested positive for COVID-19. Long story short, our DSP did not show up for her shift on Tuesday afternoon. As the urgency of the moment settled down, our agency owner shared the crux of the problem with us; they simply cannot carry any bench strength.
Our IDD Care Coordinator, Victoria, called Jeanne earlier today as part of her monthly ‘check in.’ Jeanne serves as guardian for our daughter, Alex. Jeanne coordinates the delivery of any authorized supports; she maintains relationships with all of the care team members and does the thousand little things each and every day that make this broken system of care around Alex work for us. Victoria was not yet aware that we had relied on “natural supports” to work at our jobs yesterday and that the shift this afternoon remained uncovered. Cardinal works retrospectively. When they reach out, it is an additional time commitment from the families. I keep thinking that they are going to do some of the care coordination for us, but then I realize they do not see themselves in the role of care management. Centerpointe did.
Cardinal did call and speak with the agency. They called us back to confirm what we had told them is the same thing that the agency is reporting to them. That’s not really the high value work that is going to change the system. The agency was filing a form to document its unstaffed shift to Cardinal. We’ll never see that. No one will. That data is not publicly available nor is it aggregated for policy makers who may be interested in designing a system that actually works. We as of yet have no coverage for next Sunday, Tuesday, or Wednesday. Jeanne had to request four hours of Family and Medical Leave Act (FMLA) from her boss due to the time she spent coordinating schedules between the agency, our natural supports, and Cardinal Care Coordination. Every change to the care plan sends ripples in her direction. She has been navigating mounting swells since the summer and jumped the shark in switching over agencies.
You can therefore imagine how I almost came undone when Victoria suggested that we onboard a second agency if the first agency cannot provide back up staff. How dare she suggest the family take on yet more administrative burdens on behalf of the role that I see Cardinal intrinsically responsible for performing. Remember, DHHS gives Cardinal the money. Cardinal gives the family an annual budget and mandates that their network of providers provide back up staff. Providers get paid retrospectively if and when they provide services. Families coordinate care, go uncompensated, and stressed out when they provide natural supports during scheduled/authorized shifts. Families already provide all of the natural supports for every other hour of the week that is outside of the consumer’s budget.
Providers deserve a way to serve families successfully. We know there are various models to address the systemic issues. Either Cardinal needs to prospectively pass through the budgeted amount along with the mandate to maintain service levels or it should accommodate building its own bench to step in when providers fail to perform. Cardinal cannot delegate mandated services and fail to hold providers accountable to families for the contractual outcomes. DHHS is paying for this system and its results, or lack thereof. DHHS cannot sit back and fail to measure the fidelity of the system they have created and are responsible for administrating. Show me the money. Show me how it is being spent. And show me the frequency and duration of the labor (natural supports) that is being harvested from families, many of whom operate without a safety net, absent any fair, just, and equitable compensation for their labor.
Dollars sent to LME/MCOs are the largest line item in the Medicaid budget. What are you getting for it?
