Feb 27, 2023

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Private Duty Nursing: One Family’s Story

by | Feb 27, 2023

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

Recent articles

HEALTH:
HEALTH FIRST COLORADO (MEDICAID)

To maintain health and well-being, people of all ages need access to quality health care that improves outcomes and reduces costs for the community. Health First Colorado, the state's Medicaid program, is public health insurance for low-income Coloradans who qualify. The program is funded jointly by a federal-state partnership and is administered by the Colorado Department of Health Care Policy & Financing.

Benefits of the program include behavioral health, dental services, emergency care, family planning services, hospitalization, laboratory services, maternity care, newborn care, outpatient care, prescription drugs, preventive and wellness services, primary care and rehabilitative services.

In tandem with the Affordable Care Act, Colorado expanded Medicaid eligibility in 2013 - providing hundreds of thousands of adults with incomes less than 133% FPL with health insurance for the first time increasing the health and economic well-being of these Coloradans. Most of the money for newly eligible Medicaid clients has been covered by the federal government, which will gradually decrease its contribution to 90% by 2020.

Other populations eligible for Medicaid include children, who qualify with income up to 142% FPL, pregnant women with household income under 195% FPL, and adults with dependent children with household income under 68% FPL.

Some analyses indicate that Colorado's investment in Medicaid will pay off in the long run by reducing spending on programs for the uninsured.

FOOD SECURITY:
SUPPLEMENTAL NUTRITION ASSISTANCE PROGRAM (SNAP)

Hunger, though often invisible, affects everyone. It impacts people's physical, mental and emotional health and can be a culprit of obesity, depression, acute and chronic illnesses and other preventable medical conditions. Hunger also hinders education and productivity, not only stunting a child's overall well-being and academic achievement, but consuming an adult's ability to be a focused, industrious member of society. Even those who have never worried about having enough food experience the ripple effects of hunger, which seeps into our communities and erodes our state's economy.

Community resources like the Supplemental Nutrition Assistance Program (SNAP), formerly known as Food Stamps, exist to ensure that families and individuals can purchase groceries, with the average benefit being about $1.40 per meal, per person.

Funding for SNAP comes from the USDA, but the administrative costs are split between local, state, and federal governments. Yet, the lack of investment in a strong, effective SNAP program impedes Colorado's progress in becoming the healthiest state in the nation and providing a better, brighter future for all. Indeed, Colorado ranks 44th in the nation for access to SNAP and lost out on more than $261 million in grocery sales due to a large access gap in SNAP enrollment.

See the Food Assistance (SNAP) Benefit Calculator to get an estimate of your eligibility for food benefits.

FOOD SECURITY:
SPECIAL SUPPLEMENTAL NUTRITION PROGRAM FOR WOMEN, INFANTS AND CHILDREN (WIC)

Every child deserves the nutritional resources needed to get a healthy start on life both inside and outside the mother's womb. In particular, good nutrition and health care is critical for establishing a strong foundation that could affect a child's future physical and mental health, academic achievement and economic productivity. Likewise, the inability to access good nutrition and health care endangers the very integrity of that foundation.

The Special Supplemental Nutrition Program for Women, Infants and Children (WIC) provides federal grants to states for supplemental foods, health care referrals, and nutrition information for low-income pregnant, breastfeeding and non-breastfeeding postpartum women and to infants and children up to age five who are found to be at nutritional risk.

Research has shown that WIC has played an important role in improving birth outcomes and containing health care costs, resulting in longer pregnancies, fewer infant deaths, a greater likelihood of receiving prenatal care, improved infant-feeding practices, and immunization rates

Financial Security:
Colorado Works

In building a foundation for self-sufficiency, some Colorado families need some extra tools to ensure they can weather challenging financial circumstances and obtain basic resources to help them and their communities reach their potential.

Colorado Works is Colorado's Temporary Assistance for Needy Families (TANF) program and provides public assistance to families in need. The Colorado Works program is designed to assist participants in becoming self-sufficient by strengthening the economic and social stability of families. The program provides monthly cash assistance and support services to eligible Colorado families.

The program is primarily funded by a federal block grant to the state. Counties also contribute about 20% of the cost.

EARLY LEARNING:
COLORADO CHILD CARE ASSISTANCE PROGRAM (CCCAP)

Child care is a must for working families. Along with ensuring that parents can work or obtain job skills training to improve their families' economic security, studies show that quality child care improves children's academic performance, career development and health outcomes.

Yet despite these proven benefits, low-income families often struggle with the cost of child care. Colorado ranks among the top 10 most expensive states in the country for center-based child care. For families with an infant, full-time enrollment at a child care center cost an average of $15,140 a year-or about three-quarters of the total income of a family of three living at the Federal Poverty Level (FPL).

The Colorado Child Care Assistance Program (CCCAP) provides child care assistance to parents who are working, searching for employment or participating in training, and parents who are enrolled in the Colorado Works Program and need child care services to support their efforts toward self-sufficiency. Most of the money for CCCAP comes from the federal Child Care and Development Fund. Each county can set their own income eligibility limit as long as it is at or above 165% of the federal poverty level and does not exceed 85% of area median income.

Unfortunately, while the need is growing, only an estimated one-quarter of all eligible children in the state are served by CCCAP. Low reimbursement rates have also resulted in fewer providers willing to accept CCCAP subsidies.