The Ghost Network Behind Pediatric Home Nursing: When Authorized Hours Go Unfilled

There's a child in a New Jersey hospital who is clinically ready to go home. Not almost ready, not maybe next week — ready. The discharge plan is written, the equipment can be arranged, the family wants them home, the care team wants them home, and the health plan has authorized private duty nursing hours.

But there is one missing piece: no nurse. So the child stays.

Not because the hospital is the right place anymore. Not because the family failed to plan. Not because the doctor forgot the order. The child stays because the home nursing network on paper doesn't match the home nursing network in real life.

If you want to understand what's broken in Medicaid managed care access, don't start with a dashboard. Start with that discharge planner trying to find a pediatric home health agency that can actually staff the case.

On paper, New Jersey has hundreds of home health agencies. But when we reviewed the NPI registry for pediatric-specific home health designations, the number of dedicated pediatric home health agencies looked closer to eight out of two hundred.

The agencies that surfaced as pediatric-specific included names like Affirmed Home Care, Pediatric and Adolescent Therapy Associates, Active Pediatrics Therapy Services, Growing Hope, Pediatric Care for Kid Care, and Family Care Agency. This isn't published government statistics — it's what we've done at Carenodes to actually enumerate the network scope as it relates to pediatric home health.

When the network looked so broad on paper, it became a bit of a head-scratcher, because it started to point to a much bigger problem. When the network looks broad on paper but families still cannot get care, the question isn't "do we have enough providers listed?" The question is: can a child actually get home?

I'm Alex Yarijanian, and this is the Value-Based Care Advisory Podcast.

Today's episode is about pediatric home health, private duty nursing, and one of the most important access problems in Medicaid managed care — the gap between authorized care and delivered care. Because in Medicaid, authorization is not the finish line. A health plan can approve private duty nursing hours. A hospital can discharge a child. A family can be ready. But if those hours go unfilled, access has failed.

The Unfulfilled-Hours Problem

This is where the story gets uncomfortable for managed care organizations, regulators, and provider networks nationally. MACPAC has documented that a meaningful share of authorized private duty nursing hours go unfulfilled — often cited in the 20% to 40% range. This isn't a New Jersey-specific figure, but it captures the scale of the access failure.

If a medically complex child is approved for 80 hours of nursing a week, and 20% to 40% of those hours aren't staffed, that family isn't receiving the benefit it's authorized to receive. They're receiving a promise with missing labor behind it.

Managed care has a habit of treating provider directories as if they're proof of access. A directory says there are providers. A network adequacy filing says the plan meets the standard. A contract says the service is covered. But pediatric private duty nursing exposes the weakness in that logic.

A provider directory can include agencies that:

1. Do not take new pediatric cases
2. Do not serve the child's county
3. Do not have capacity to staff high-acuity cases
4. Do not have overnight nurses
5. Do not accept the plan's reimbursement rate
6. Are listed but unreachable
7. Are technically contracted but functionally unavailable

This is how you get what's called a ghost network. The term gets used a lot in behavioral health, but the same concept applies here. The plan appears to have a network. The directory appears to show access. But when a family or discharge planner tries to use it, the network just disappears.

Research on Medicaid managed care directories has found very high rates of inaccuracy or inaccessible listings. CMS cited similar evidence in the 2024 Medicaid Managed Care Access, Finance, and Quality Final Rule when it justified new secret-shopper survey requirements.

That matters because CMS is no longer asking, "Does the directory look complete?" CMS is moving toward the question: "Can members actually obtain care?" That's a very different standard.

Why Pediatric Home Health Is Different

Pediatric home health is not just adult home care with smaller patients. These cases can involve ventilators, trachs, feeding tubes, seizure disorders, complex medication regimens, and fragile transitions from NICU to PICU to home. The family may need overnight nursing coverage. They may need nurses comfortable with pediatric acuity. They may need backup staffing when a nurse calls out.

That makes the labor market much narrower than the directory suggests. A general home health agency may exist in the state and be enrolled in Medicaid — but that doesn't mean it can staff a medically complex pediatric case tomorrow.

This is why the NPI registry analysis matters. Search broadly for home health agencies, and the market looks large. Narrow to pediatric-specific designations and actual pediatric orientation, and the market looks much smaller. That smaller market is the real market families experience — that's the actual patient experience.

Authorized Hours vs. Filled Hours

The most important distinction in this episode is the difference between authorized hours and filled hours. Authorized hours are what the plan says the child can receive. Filled hours are what actually shows up in the home for families. The second number is the one that matters.

If a child is authorized for 12 hours of nursing per day but the agency can only staff six, the family absorbs the rest of the impact. Parents become the backstop. Siblings feel the strain. Hospital discharge gets delayed. ED use becomes more likely. Caregivers burn out.

And from a managed care perspective, the system may look compliant, because the service was technically approved. That is the policy failure: approving a service is not the same as delivering access. It is not one and the same.

This is where the story comes back to the hospital. New Jersey Children's Hospital and New Jersey Hospital Association policy discussions have raised the issue of children waiting weeks, sometimes longer, for discharge to home nursing. This should be framed carefully — but anyone who's worked on complex pediatric discharge knows the scenario is real. A child no longer needs inpatient care but cannot go home safely without nursing. The hospital bed stays occupied. The family waits. The health plan has authorized the benefit, but the home-based workforce isn't there. This is not a pediatric home care problem — it's a system capacity problem.

Why the CMS 2024 Rule Still Matters

I know we're in 2026, but it's worth revisiting why the CMS 2024 Medicaid Managed Care Final Rule matters: it pushes managed care access oversight closer to reality. The rule strengthens access monitoring and network adequacy expectations. One of the most important ideas is that access cannot be measured only through static provider directories or contractual language.

CMS is moving toward secret-shopper surveys, appointment wait-time standards, and more practical tests of whether members can actually obtain services. For pediatric private duty nursing, that logic could go even further. The key access questions should be:

• How many authorized PDN hours were actually filled?
• How many children experienced delayed discharge because home nursing was unavailable?
• How many agencies listed in the directory are actually accepting new pediatric cases?
• How many can staff high-acuity pediatric cases?
• How many can be partially versus fully staffed?

Those numbers matter — not just the network count, not the directory size, not just "the provider is contracted, checkmark."

What Health Plans Should Do Differently

When I advise a Medicaid MCO on this problem, I don't start with a generic network adequacy report. I start with a pediatric PDN access audit:

1. Compare authorized hours to filled hours.
2. Identify children waiting in the hospital for nursing.
3. Validate every pediatric home health agency in the directory through live outreach — which is what we did.
4. Separate agencies that serve adults only, mixed populations, and true pediatric high-acuity cases.
5. Map capacity by county, shift type, and acuity.
6. Identify rate or contracting barriers that make agencies unwilling to take cases.
7. Treat unfulfilled authorized hours as an access failure — not just a provider staffing issue.

Because if the plan authorizes the care but the family cannot get that care, the member experience is still a failure, and the bad outcomes still stick with the plan.

Documentation Strategy

For providers, hospitals, and advocates: don't just say access is bad — that's not sufficient. Document the referral date, authorization date, requested hours, filled hours, missed shifts, agencies contacted, reason for refusal, county, discharge delays, and family impact.

This is how anecdotal experience becomes actual evidence — evidence regulators, health plans, and policymakers can act on, and evidence you can leverage in your own contracting discussions with health plans.

Closing

The story we started with was a child ready to leave the hospital but waiting for a nurse. It's not just a sad case — it's a stress test for Medicaid managed care. If the network is real, the child gets home. If the network is paper only, the child waits. That's the difference between coverage and access.

In pediatric private duty nursing, that difference is measured in hospital days, family exhaustion, and children who should be home but aren't.

So the next time someone says the health plan has hundreds of home health agencies in the network, ask the better question: how many can take a pediatric case today? That's the network that matters.

I'm Alex Yarijanian. This is the Value-Based Care Advisory Podcast.

If this episode was useful, share it with someone working on Medicaid access, discharge planning, or managed care network adequacy. And if you want help turning provider directory data into an actual access analysis, this is exactly the kind of work you can do following the guidance I just gave.

Thank you.