When Funding Disappears but the Need Does Not
The situation
Alex is an adult with a catastrophic high cervical/cervicomedullary injury who lives in the community and directs his own care.
His diaphragm pacer is his primary respiratory support. A ventilator provides additional respiratory support.
The diaphragm pacer requires ongoing supplies, including batteries. These supplies are not covered by Medicaid or Alex’s other insurance.
For a period of time, the Logan County Board of Developmental Disabilities reimbursed some of these expenses using local service and support dollars.
What changed?
In 2026, a receipt was submitted for reimbursement of diaphragm-pacer batteries.
The reimbursement was denied.
The written explanation stated that Logan County’s recent levy had failed, the county board was under fiscal emergency, and locally funded programs—including the service and support dollars previously used for reimbursement—had been cut.
Importantly:
Alex’s respiratory needs had not changed.
His diaphragm pacer had not become less important.
The batteries had not become unnecessary.
What changed was the availability of public funding.
What happened next?
We ate the cost.
The public expenditure decreased.
Alex remained medically stable.
The necessary batteries remained available.
On the surface, there was no adverse outcome.
But the underlying resource need did not decrease.
The cost moved.
Before: Local funding → necessary batteries → Alex
After: Our funding → necessary batteries → Alex
The successful outcome remained the same because we replaced the lost funding.
This has been the norm since Alex has been injured.
The question the system should ask
What would have happened if the Alex or I could not afford the batteries?
The reimbursement denial explained why local funding was unavailable.
But it did not address several critical questions:
• What function does this equipment serve?
• Is there another funding source?
• Is there a safe and available substitute?
• Can the individual or family afford to purchase it privately?
• What happens if they cannot?
• Does loss of the resource create a health, safety, independence or community-participation risk?
• Who is responsible for helping identify an alternative?
Those questions become especially significant when the resource supports the individual’s primary respiratory system!…a.k.a. Life support!
Why this matters for HCBS modernization
Ohio is moving toward more standardized assessment, data collection and acuity-based reimbursement.
But administrative data could record this situation as:
County expenditure: $0
and:
Individual remains stable.
Neither fact reveals that the individual or family privately purchased the resource that preserved the outcome.
That creates a serious measurement problem.
$0 in public spending does not necessarily mean $0 in resource need.
It can mean:
need + noncoverage + private substitution.
If privately purchased resources are invisible, successful family intervention can be mistaken for successful public-system performance.
The broader measurement problem
Families substitute money as well as labor.
HCBS evaluation should therefore measure not only:
Authorized services
→ Delivered services
but also:
Family-provided care
Privately purchased disability-related supplies/equipment
Uncovered necessary resources
Supports lost because of fiscal or coverage changes
What replaced those supports
What happened when no replacement was available
CMS’s HCBS Quality Measure Set is intended to improve HCBS quality and outcomes and help states identify disparities. Ohio’s own service-and-support administration rule requires individualized assessment and planning around health, welfare, meaningful activity, community connections, risks, and available supports. The rule also defines the service budget as the projected cost of implementing the ISP regardless of funding source.
The unanswered question is therefore not simply:
“Did Medicaid or the county pay for it?”
It is:
“What resources actually make this person’s successful community life possible—and who is providing or paying for them?”
The equity test
Now consider two people with the same essential uncovered need.
Family A can afford the resource.
The person remains stable and participating in the community.
Family B cannot afford the resource.
What happens?
If the answer depends primarily on the household’s ability to privately finance the gap, then family financial capacity has become an invisible component of the support system.
Policy takeaway
A funding decision can change who pays without changing what the person needs.
When an existing support loses its funding source, a person-centered system should be able to determine:
What did the resource accomplish?
What replaces it?
Is the replacement safe and obtainable?
Who now bears the cost?
What happens if they cannot?
And HCBS modernization should measure that transition.
Because otherwise:
public spending can fall,
the family can absorb the difference,
the person can remain successful—
and the system can completely miss who actually kept the person successful.
The absence of crisis does not prove the absence of need.
Sometimes it proves that someone outside the funded system prevented the crisis.
