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Aug 19, 2020

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Lived Experience: Colorado advocates fight for denied essential health benefits

by | Aug 19, 2020

Community Insight, Equity work, Lived Experience

Editor’s note: This vignette is part of the Lived Experience series, which highlights how Coloradans benefit from advocacy efforts led by CCLP and its partners.

Though largely intended for individuals and families with low incomes or disabilities to provide health coverage, Health First Colorado (Colorado’s Medicaid program) supports families with high-acuity children – with a more flexible definition of financial need – to help them cover the costs of essential treatments and services. For many families, however, meeting the criteria for and accessing these benefits can be a logistical and legal nightmare.

Chris Russell, a family advocate who works in pediatric home care, is familiar with this situation. Chris has spent many of the last 39 years navigating the complex Medicaid system to ensure that her son, who has a physical disability, can receive essential services that he requires.

“His disability is quite severe,” Chris says. “He’s extremely intellectually capable and not too recently [earned] his Ph.D.… but his body has been a challenge…[He’s] pretty much had everything go wrong that could go wrong in 39 years with the system in terms of going through IEPs in the schools and going through all manner of Medicaid misery.”

Armed with her experience as an attentive mother, Chris has spent 29 years working at a pediatric home health agency to ensure that eligible families receive the medical coverage and services they need. Through her work, Chris is exposed to systemwide issues related to accessing certain Medicaid benefits. When Chris comes across a particularly difficult legal problem, she consults Bethany Pray, Legal Director at Colorado Center on Law and Policy, to help solve it.

“The lawyers at CCLP – they have the status, they have the title, they have the vast knowledge and the Department listens to them,” Chris explains.

Correcting immigration misconceptions
Recently, Chris worked on two cases involving families with children who had severe disabilities. Each of the families qualified for Medicaid waivers but were being denied based on citizenship — despite having legal status in the U.S. “Both families were here on some kind of a work visa,” Chris says. “There were two separate counties involved and in neither case did the county acknowledge that that the children should be able to get on Medicaid.”

Chris continues, “there was actually a lot of conflicting information in various documents that [the Colorado Department of] Health Care Policy and Financing [or HCPF] put out, that the counties put out, and when I would call [the county human services offices and single entry point case management agencies]  just to research this—whether immigrant children could access Medicaid… One-hundred percent of them said no… Basically, what I found out was that when a misconception gets started people just repeat the misconception until it virtually becomes the law. It’s not the law — it’s wrong — but it gets disseminated so widely that everybody believes it’s true. So, the counties don’t believe that these kids can get Medicaid, [and] that’s what they tell the case managers.”

Thanks to CCLP’s legal advocacy efforts, both children’s families were rightfully able to access Medicaid and Department application language was changed to ensure that people without Social Security Numbers were not inappropriately screened out. According to Chris, “Even though those were individual cases, they manifested in a change…and a better understanding of what was true and what wasn’t true across all the counties… That’s an example of a situation where one individual’s miserable situation manifested in correction of an entire policy that affects many, many people.”

Fighting unlawful process changes
It is common for the problems that Chris identifies within Medicaid to be systemic and affect a very large number of families. Last year, Chris noticed a particularly widespread problem among children who applied to receive home nursing services: “Out of the children that we had previously gotten 100 percent approval on, about 40 percent of those children got denied suddenly,” Chris says. “And so that precipitated panic, big panic on my part because there’s so many children that we see in that boat.”

These denials were due to a sudden change in the way children’s eligibility for services was being considered by the group that oversees the authorization process for Certified Nurse Aide (CNA) and private duty nursing services.

Chris continues, “So I went through, I interviewed each of those people and set them up for hearings at the administrative law court… If I ever had a question, then I could ask Bethany the answer to the question.” For Chris, Bethany was a valuable resource for providing options on how to proceed.

At the same time, CCLP found that the notices families had received were lacking vital information. The constitution guarantees people due process — specifically notice and a hearing — before they lose a benefit or service. Successfully arguing that services could not be denied without due process, CCLP worked to get benefits restored to all children who had gotten the flawed notices.  Then, with help from Colorado Legal Services, CCLP resolved legal hearings for many of the children who had appealed.

This was a tremendous win for families who would have otherwise been denied services. However, each family has only been temporarily approved until Sept. 30, 2020.

Chris explains how the re-approval process this year will be much more challenging: “Now they corrected those [procedural] errors…We’re going to have to go to court and argue that clinical merits of the case…It’s going to be very challenging, and I’m not looking forward to it, but honestly none of these things would have happened – in terms of any defense of these families, defense of these children, in terms of their care and in the services that have been denied — I  don’t think it would have happened without CCLP.”

The Medicaid system saves lives every day but is far from perfect. Eligibility requirements, approvals, and enrollment can often be incredibly confusing and challenging to navigate. Continued advocacy from individuals like Chris and organizations like CCLP is crucial not only for ensuring that Coloradans receive the coverage they deserve, but also for holding actors within the Medicaid system accountable for adhering to the law.

“It makes you feel extremely good to be able to help somebody,” Chris says. “It’s just such a painful situation to have a child and know that they need something to flourish medically and they can’t get it for some unfair reason, from a mistake or misunderstanding, or the parents just don’t have the knowledge to navigate this incredibly complex Medicaid system, or whatever the reason is… I absolutely couldn’t possibly be more grateful for my job — it’s the best job in the whole wide world. But my job is made a whole lot better by the fact that if I have a legal question, CCLP always knows the answer.”

-By Andra Metcalfe

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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.