When we think about complicated health insurance programs like Medicaid, it’s easy to miss the stories of the individual people and families who receive these benefits. A few months ago, one remarkable mother shared her family’s story in a public hearing to the Medical Services Board, shining a light on some of the personal impacts of these important policies.

In her testimony, Pam Rogers explained that more than a decade ago, her two-year-old daughter choked, stopped breathing, and suffered a global anoxic brain injury. While her daughter survived after a lengthy stay at the hospital, the injury resulted in permanent medically complex conditions. Pam did everything she could to give her daughter the best life possible—all without any training or support. Eventually, she chose to go to nursing school to become a certified nurse to learn what she needed to know to support her daughter.

Extraordinarily, she didn’t stop there. Pam’s experiences inspired her to foster and ultimately adopt five additional children with complex medical needs, each of whom likewise required around-the-clock nursing services.

Pam was able to care for all of her children at home through a unique Medicaid benefit known as Private Duty Nursing, or PDN.

Private Duty Nursing and Why it Matters

PDN is a Medicaid benefit for people who are medically fragile, and who require substantial, complex, and continuous skilled nursing care. The purpose of this benefit is to keep these people with complex medical needs out of hospitals or other institutional settings, so that they may be cared for at home.[i]

The fact that the recipients are children requires special consideration: federal law requires that all states provide children enrolled in Medicaid with access to a wide range of benefits — PDN included — recognizing that access to such services early in life gives people the best chance of attaining optimal health.[ii] The list of services available to kids is extensive, but just as importantly, those services must be provided flexibly and to the extent they are medically necessary, without hard limits or caps. This provision applies to PDN, behavioral health care, and speech therapy alike.

Supported by PDN, Pam, like so many other devoted parents and caregivers in Colorado, not only provided a loving home to children who would otherwise not have had one — she also provided a crucial benefit back to the state of Colorado. With such complex medical needs, Pam’s children would have been in full-time institutional care settings, had she not adopted them and arranged for PDN benefits. But hospital care is significantly more expensive than at-home care — by as much as a third, according to one study.[iii] By caring for these children at home, Pam not only provided each of them with a better life; she also saved the state money, and helped ensure access to hospital beds and other resources for other children who needed them.

For five years, each of Pam’s children received 24-hour Private Duty Nursing services. But that all changed a few months ago, when nursing hours for several of her children were cut by half.

This cut happened despite no change in her children’s conditions, and no changes in the PDN hours requested from her children’s medical providers.

A Crisis, and the Department’s Response

In the fall of 2022, CCLP began hearing from families like Pam’s, whose long-standing PDN hours had been cut with little or no explanation. A large number of requests for appeal were filed in the Office of Administrative Courts, as families dealt with the blow of being denied services their children had previously received and still required. Many families were left scrambling, not knowing what to do to get their children’s needs met.

In October 2022, Pam and nearly a dozen other families provided emotional testimony to the Medical Services Board about the crisis their families were facing with denials of their needed nursing care.[iv]

Recognizing that action was needed, the Department of Healthcare Policy and Financing (HCPF) paused the reductions and terminations, providing each family with an automatic administrative approval of the requested PDN hours — but only temporarily. During this limited period, the Department assured families it would review each and every request for PDN services, train the Home Health Agencies who submit the documentation to request PDN services, and improve the letters that are sent to families about their benefits.

From the beginning of the automatic approval process, CCLP articulated concerns that this temporary hold — just over two months from the date it was set — would not give HCPF enough time to achieve their stated goals. Indeed, that temporary approval has now been extended twice, giving the affected families a series of last-minute reprieves, but without providing longer-term solutions or any knowledge about how their kids might receive the life-sustaining care they need in the future.

The limbo has left the community of parents and caregivers incredibly frustrated and scared for their kids. Along with CCLP and other advocates, the community has been calling for focused, intentional work with stakeholders to improve the way that Colorado provides services to children. Improvements in this area have been a long time coming, too. Policies and processes surrounding this benefit have been problematic for years, at the very least since 2019, when similar issues arose around home health benefits.

The Road Ahead

While we at CCLP recognize that the Department has put forth significant effort to address the current crisis, we believe their work thus far has not been enough.

For months now, CCLP has pushed for more transparency from HCPF. But promised data that could provide insight into the basis for the denials has, as of yet, remained unshared. Stakeholders continue to seek information about how HCPF and its “utilization management” vendor apply state policies to determine which services, and at what level, are appropriate — including timelines, documentation requirements, and member communications. The Department promised to work with stakeholders and the public, but as of the date of this blog post, information continues to be lacking.[v]

As for her family’s ordeal, Pam Rogers has yet to see any sign of resolution, but she’s not giving up. “My agency continues to ask questions and receive vague answers from HCPF regarding their administrative approval process… I do not expect to hear anything more anytime soon… However, I will continue to show up even if no one else does.” She expresses frustration that the only solid piece of information coming from HCPF is the (constantly moving) deadline date, with no other written information on which she can base expectations on for her family’s needs.

What is clear to us at CCLP: Before the period of automatic approvals ends, HCPF needs to actively build trust among the pediatric PDN community, including improved transparency into the decision-making process. Promises made should be promises kept. The risks in continuing to handle this crisis poorly cannot be overstated: for the children impacted by this crisis, they are, simply put, matters of life and death.

[i] https://medicaid.ncdhhs.gov/providers/programs-and-services/long-term-care/private-duty-nursing-pdn

[ii] https://www.hhs.gov/guidance/document/epsdt-guide-states-coverage-medicaid-benefit-children-and-adolescents

[iii] https://www.commonwealthfund.org/publications/newsletter-article/hospital-home-programs-improve-outcomes-lower-costs-face-resistance

[iv] https://coloradosun.com/2022/10/28/medicaid-denials-colorado-children-disabilities/

[v] https://hcpf.colorado.gov/private-duty-nursing