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News

Feb 27, 2023

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Recent articles

Private Duty Nursing: One Family’s Story

by | Feb 27, 2023

Community Insight, Health, Lived Experience

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

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HEALTH:
HEALTH FIRST COLORADO (MEDICAID)

Health First Colorado is the name given to Colorado’s Medicaid program. Medicaid provides public, low-cost health insurance to qualifying adults and children. It is an entitlement program funded by the federal, state, and county governments and is administered by counties in Colorado. Those who are required to pay must pay a small co-pay when receiving certain health care services.

State Department: Department of Health Care Policy and Financing

Eligibility: Most adults 18 to 64 are eligible for Medicaid in Colorado if their household income is at or below 133% of the federal poverty limit (FPL). Pregnant women are eligible with incomes of up to 195% FPL, while children under 18 may be eligible if the live in a household with income at or below 142% FPL. Some adults over 65 may also be eligible for Medicaid.

Program Benefits: Through Medicaid, low-income Coloradans are eligible for a range of health care services at little to not cost. Services provided include doctors visits, prescription drugs, mental health services, and dental care. Co-pays for certain individuals may be needed for certain services.

Program Funding and Access: Colorado funds our Medicaid program through state and federal dollars. Medicaid is an entitlement program, which means that all who are eligible for Medicaid can access the program, regardless of the funding level in a given year. This does not mean that it is always easy to access Medicaid, even when eligible. And since the program is administered by counties, funding levels for county staff and other administrative roles can make it easier or harder for Coloradans to access the program. On top of this, not all medical providers accept Medicaid which limits the ability of Coloradans to seek health services even if enrolled, such as if the nearest provider is a 2+ hour drive away.

Note: This data is from before the pandemic and does not reflect changes in enrollment rules during the COVID-19 pandemic and public health emergency.

Statewide Program Access 2015-19: Over the study period of this report, an average of 89.0% of the population at or below 133% of FPL (i.e., the population who is likely to be eligible for Medicaid) were enrolled in Medicaid in Colorado.

FOOD SECURITY:
SUPPLEMENTAL NUTRITION ASSISTANCE PROGRAM (SNAP)

The Supplemental Nutrition Assistance Program or SNAP helps low-income Coloradans purchase food by providing individuals and families with a monthly cash benefit that can be used to buy certain foods. SNAP is an entitlement program that is funded by the federal and state governments and administered by counties in Colorado.

State Department: Department of Human Services

Eligibility: Currently, Coloradans qualify for SNAP if they have incomes below 200% FPL, are unemployed or work part-time or receive other forms of assistance such as TANF, among other eligibility criteria. Income eligibility for SNAP was different during the study period of this report than today—it was 130% FPL back in 2019 for example. The US Department of Agriculture uses the population at or below 125% FPL when calculating the Program Access Index (or PAI) for SNAP. We follow this practice in our analysis despite Colorado currently having a higher income eligibility threshold.

Program Benefits: SNAP participants receive a monthly SNAP benefit that is determined by the number of people in their household and their income. Benefit amounts decrease as income increases, helping households avoid a sudden loss of SNAP when their incomes increase, even by a minor amount. Benefits are provided to an Electronic Benefit Transfer (EBT) card that can be used to purchase eligible food items, such as fruits and vegetables; meat, poultry, and fish; dairy products; and breads and cereals. Other items, such as foods that are hot at their point of sale, are not allowable purchases under current SNAP rules.

Program Funding and Access: SNAP, like Medicaid, is a federal entitlement program. This means that Colorado must serve any Coloradan who is eligible for the program. As such, funding should not be a limit to how many Coloradans can be served by the program. However, funding for administration of SNAP at the state and county level can limit the ability of county human service departments to enroll those who are eligible. Other program rules and administrative barriers can make it difficult for Coloradans to receive the benefits they are legally entitled to receive.

Statewide Program Access 2015-19: Over the study period of this report, an average of 61.1% of the population at or below 125% of FPL (i.e., the population who is likely to be eligible for SNAP) were enrolled.

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

The Special Supplemental Nutrition Program for Women, Infants, and Children, also know as WIC, provides healthcare and nutritional support to low-income Coloradans who are pregnant, recently pregnant, breastfeeding, and to children under 5 who are nutritionally at risk based on a nutrition assessment.

State Department: Department of Public Health and Environment

Eligibility: To participate in WIC you must be pregnant, pregnant in the last six months, breastfeeding a baby under 1 year of age, or a child under the age of 5. Coloradans do not need to be U.S. citizens to be eligible for WIC. In terms of income, households cannot have incomes that exceed 185% FPL. Families who are enrolled in SNAP, TANF, Food Distribution Program on Indian Reservations (FDPIR), or Medicaid are automatically eligible for WIC. Regardless of gender, any parents, foster parents, or caregivers are able to apply for and use WIC services for eligible children.

Program Benefits: WIC provides a range of services to young children and their parents. These include funds to purchase healthy, fresh foods; breastfeeding support; personalized nutrition education and shopping tips; and referrals to health care and other services participants may be eligible for.

Program Funding and Access: WIC is funded by the US Department of Agriculture. The state uses these federal funds to contract with local providers, known as WIC Clinics. In most cases, these are county public health agencies, but that is not the case in all Colorado counties. Some WIC Clinics cover multiple counties, while others are served by multiple clinics. Private non-profit providers are also eligible to be selected as a WIC Clinic.

Statewide Program Access 2015-17: Between 2015 and 2017, an average of 52.2% of the population eligible for WIC were enrolled in the program in Colorado.

Financial Security:
Colorado Works

Colorado Works is the name given to Colorado’s program for Temporary Assistance to Needy Families or TANF. It is an employment program that supports families with dependent children on their path to self-sufficiency. Participants can receive cash assistance, schooling, workforce development and skills training depending on the services available in their county.

State Department: Department of Human Services

Eligibility: In general, Coloradans are eligible to enroll in TANF if they are a resident of Colorado, have one or more children under the age of 18 or pregnant, and have very low or no income. For example, to be eligible to receive a basic cash assistance grant through TANF, a single-parent of one child could not earn more than $331 per month, with some exclusions—and would only receive $440 per month (as of 2022). That said, there are other services provided by counties through TANF that those with incomes as high as $75,000 may be eligible for. In addition to these, participants in TANF are required to work or be pursuing an eligible “work activity” or work-related activity. Any eligible individual can only receive assistance if they have not previously been enrolled in TANF for a cumulative amount of time of more than 60 months—this is a lifetime limit that does not reset. Counties may have additional requirements and offer benefits that are not available in other counties in Colorado.

Program Benefits:  While the exact benefits that one is eligible for under TANF can vary, all qualified participants are eligible to receive a monthly cash payment, call basic cash assistance. Other than cash assistance, counties are have a lot of choice in how to use their TANF funding; generally a use of TANF funds is appropriate so long as it advances one or more of the four purposes of the program: (1) provide assistance to needy families so that children can be cared for in their own homes or in the homes of their relatives; (2) end the dependence of needy families on government benefits by promoting job preparation, work, and marriage; (3) prevent and reduce the incidence of out-of-wedlock pregnancies; and (4) encourage the formation and maintenance of two-parent families.

It is important to note that those eligible for TANF are also eligible for many of the other programs we’ve included in this report, such as SNAP, Medicaid, and CCCAP.

Program Funding and Access: Colorado funds its TANF program through funds received from the federal government through the Temporary Assistance for Needy Families block grant. Most of the federal funds are allocated by the state to counties, which are required to provide a 20% match of state funding. Federal and state rules allow the state and counties to retain a portion of unspent funds in a TANF reserve.

Statewide Program Access 2015-19: Over the study period of this report, an average of 50.7% of the population at or below 100% of FPL (i.e., the population who is likely to be eligible for TANF) were enrolled in TANF in Colorado.

EARLY LEARNING:
COLORADO CHILD CARE ASSISTANCE PROGRAM (CCCAP)

The Colorado Child Care Assistance Program provides child care assistance to low-income families and caregivers living in Colorado in the form of reduced payments for child care. It is a program funded by the federal, state, and county governments and is administered by counties in Colorado. The share owed by parents/caregivers is determined on a sliding scale based on the family’s income.

State Department: Department of Early Childhood Education

Eligibility: Counties set eligibility for families separately, but must serve families with incomes at or below 185% of the Federal Poverty Limit. Families accepted to the program are no longer eligible once their income exceeds 85% of the state median income. Parents or caregivers must be employed, searching for work, or engaged in another approved activity to be eligible for CCCAP. Parents and caregivers enrolled in Colorado Works (Temporary Assistance to Needy Families or TANF) or in the child welfare system are also eligible to participate in CCCAP. Generally, CCCAP serves families with children under 13, although children as old as 19 may be eligible under certain circumstances.

Program Benefits: If a family is eligible for CCCAP and has income, they may likely have to pay a portion of their child’s or children’s child care costs each month. The amount that families owe is based on their gross income, number of household members, and the number of children in child care in the household. As such, households tend not to experience a benefit cliff with CCCAP when they see their incomes increase

Program Funding and Access: Colorado funds the CCCAP program using federal dollars it receives from the Child Care and Development Block Grant program. The state allocates federal and state funds to counties using a formula that takes into account factors like current caseloads and the number of eligible residents. Assistance is available until the county’s funds are spent, so the number of families that can be served is often a function of how much funding is available and the income and composition of the household that applies. It is not uncommon for counties to overspend or underspend their allocations of funds. The state reallocates unspent funds from counties who underspent to those who overspent. While underspending could indicate a problem with the way a county administers its CCCAP program, it could just as likely be a sign that there are few providers in the county who participate in CCCAP—or a lack of providers generally.

Statewide Program Access 2015-19: Over the study period of this report, an average of 10.8% of the population at or below 165% of FPL and younger than age 13 (i.e., the population who is likely to be eligible for CCCAP) were enrolled in CCCAP.

Housing:
HUD rental assistance programs

The US Department of Housing and Urban Development (HUD) has three housing assistance programs that we look at together: Housing Choice Vouchers (Section 8), Project-based Section 8, and Public Housing. In Colorado, these programs provided assistance to over 90% of the households who received federal housing assistance from all HUD programs. Through federally funded, local or regional public housing agencies (PHAs) are the agencies that administer these programs, through not all are available in all counties. These are not the only programs available in Colorado that assist households afford the cost of housing, such as units funded through federal and state tax credit programs.

State Department: Department of Local Affairs

Eligibility: Generally, households with incomes under 50% of the area median income (AMI) of the county they live in are eligible for these rental assistance programs, although PHAs have discretion to select households with incomes at higher percentages of AMI. That said, HUD requires that 75% of new vouchers issued through the Housing Choice Voucher/Section 8 program in a given year are targeted to households with incomes at or below 30% of AMI. PHAs are also able to create criteria that give priority to certain types of households who are on waiting lists for these programs.

Program Benefits: These rental assistance programs help households afford the cost of housing by reducing their housing costs to around 30% of their household income. In the case of the Housing Choice Voucher program, the PHA pays the voucher holder’s landlord the remaining portion of the rent.

Program Funding and Access: Funding and access are both challenges for these rental assistance programs. In addition to limitations on the number of public housing units or housing vouchers a PHA can manage or issue, lack of funding compared to the need constrains the ability of PHAs to assist low-income households. In 2020, Coloradans were on waitlists for Housing Choice Vouchers for an average of 17 months. Waitlists also exist for the other rental assistance programs.

Statewide Program Access 2015-19: Over the study period of this report, an average of 21.1% of renter households with incomes at or below 50% AMI (i.e., the population who is likely to be eligible for HUD rental assistance programs) were living in subsidized housing.