In 2013, the American Academy of Pediatrics (AAP) penned a letter to the Centers for Medicare and Medicaid Services that harshly criticized, “the lack of uniformity both within and among states in access, coverage, and delivery of…mandated home health care services for children, particularly those children who receive daily specialized care in the home setting due to chronic disorders or diseases.”
If home nursing care via Medicaid is a federally mandated service for children, why is there so much inconsistency in who gets it? Why won’t insurance cover it most of the time? Why is there so much variability in how many hours of care each child receives? And how can this problem be addressed?
Eligibility for Home Nursing Care: Payers
Surprisingly, the child’s condition or need is not the main deciding factor in whether or not he or she gets home nursing care. Instead, the prime variable is who pays for the child’s care: insurance or Medicaid.
The vast majority of children who receive home nursing care in the United States access it through Medicaid. In fact, in a study published in this magazine in 2011, 84% of children receiving home nursing care had Medicaid as a payer. While some of these children financially qualified for Medicaid, many accessed Medicaid through Medicaid waivers, which will be discussed in the next section. In a few states, children may also access Medicaid through demonstration programs (1115 programs) or other state-based programs.
Under the Early Periodic Screening, Diagnostic and Treatment (EPSDT) mandate of Medicaid, states must pay for home nursing care if it is medically necessary. In the broadest sense, any child who receives financially-based Medicaid or a Medicaid waiver is entitled to home nursing care if his or her physician deems it medically necessary.1
There is no such mandate for private health insurance. The essential benefits required under the Affordable Care Act do not mandate home nursing care, and most insurers neglect to provide it. While some may cover a small number of nursing visits or a small dollar amount of nursing services, these amounts are rarely enough to provide more than a few weeks of nursing per year. In some cases, insurance companies also refuse to cover home nursing services because they incorrectly deem tracheostomy care, ventilator care, and IV care as “custodial care,” meaning the usual type of care provided by a parent or caregiver.
In many states, children who desperately need nursing care simply cannot get it, because their insurance does not pay for it, and they are unable to qualify for their state’s Medicaid programs.
Variability in Medicaid Waivers
Many children requiring home nursing care end up accessing it through Medicaid waivers. These waivers typically count only the child’s income, allowing children from middle class families to become eligible for Medicaid as primary or secondary insurance. Once children are approved for a Medicaid waiver, they can then receive home nursing care if it is medically necessary.
There are two main types of Medicaid waivers: TEFRA (Katie Beckett) waivers; and home and community based services waivers (HCBS or 1915(c) waivers).
The first waiver type, the TEFRA waiver, simply extends regular Medicaid to children with severe disabilities. Currently, 22 states have TEFRA or TEFRA-like programs. The federal law governing these waivers says that any child under 18 with a disability as determined by SSI disability criteria is eligible for the program, if he/she would require an institutional level of care if not living at home, and care can be provided at a lower cost than in an institution.
Since this program is federally delineated quite explicitly, one would think that all programs would be identical. However, states are permitted to define “institutional level of care” as they wish. Georgia, for example, allows children who are medically complex or have developmental disabilities, but specifically excludes children with severe psychiatric needs.2 Other states, such as Alaska, Rhode Island, and Maine, explicitly state that children requiring psychiatric hospital level of care are eligible for the program.3 In Massachusetts, Wisconsin, and South Dakota, the program is restricted to (or intended for) children with severe disabilities who require at least a nursing home level of care, and in Nebraska it is restricted even further to children with trachs, vents, or other complex medical technologies that require a hospital level of care.4 With such varying definitions, a child who qualifies in one state may not qualify in another.
HCBS 1915(c) Waivers
Even more variable are HCBS 1915(c) waivers, which states can design for specific age groups, diagnoses, or populations. States are not required to have any waivers, and they may choose what types of people they want to serve, which services they will provide, and how many people they will serve.
Even when programs are designed for the same populations, there tends to be a high level of variability. In a comparison of nine waivers developed for children who are either medically fragile or technology dependent, stark differences were found.5 Four waivers in Illinois, Kansas, Oregon, and Texas cover children with a hospital level of care, meaning that children may receive services up to the cost of a hospital admission. The other four, however, only cover a nursing level of care. This means that children in these states may not be able to receive enough nursing care to meet their needs.6
In addition, while most programs for children who are medically fragile covered children from birth to age 20 or 21, North Dakota’s program only begins at age three, meaning children in that state might have to live in the hospital until eligibility is reached at age three. Three programs in North Dakota, Oregon, and South Carolina cut off at age 17 or 18, leaving young adults still covered as children under Medicaid’s EPSDT mandate to transition to adult programs that may not serve them adequately or fully.
These nine programs also accept very different populations, and use starkly different criteria to assess children. Some states, such as Utah, Virginia, and Illinois, either only accept children with trachs, vents, or TPN, or structure their eligibility tools to make it almost impossible for a child without these technologies to enter the program. In North Dakota, Kansas, and Texas, on the other hand, children who just have feeding tubes or lower-level respiratory needs may qualify for waivers.
Finally, some states only look at medical needs, while others take into account cognitive status, behavioral issues, or the need for assistance with some/all activities of daily living (ADLs). For example, in Illinois, North Dakota, South Carolina, Utah, and Virginia, ADLs are not considered when determining eligibility or assessing the level of need in their waivers for children who are medically fragile. A child who has a trach, is mobile, and is developmentally on track receives the same score as a child with a trach who is paralyzed and fully dependent on a caregiver for all care.
Even more troublesome is the fact that there is great variability in waiting lists and prioritization systems for HCBS waivers. A child who moves from one state to another may not be able to obtain services for months or years.
Even more challenging is the fact that some states do not even offer waivers with a nursing home level of care or above, either through an HCBS waiver or a TEFRA waiver. Some children with significant medical needs who are cognitively and developmentally on target may not even qualify for a program, and those who do may be restricted in the amount of services they can receive. Louisiana, Missouri, Tennessee, Washington, and Wyoming all fail to operate any program at all for children who are medically fragile, have physical disabilities alone, or require a nursing home or hospital level of care for non-psychiatric reasons.7 Numerous states fail to offer waivers for children who require a hospital level of care, such as children on ventilators who are unstable, or children who require continuous, ongoing intravenous nutrition and medications. Alabama, Indiana, Iowa, Kentucky, Louisiana, Missouri, Montana, New Mexico, North Dakota, Tennessee, Utah, Virginia, Washington, and Wyoming all lack this type of program.
States with no programs for children with physical disabilities or a nursing home level of care
States with no programs for children with a hospital level of care
- New Mexico
- North Dakota
With such variability between programs in different states, a child with the exact same needs may receive vastly different services–or not qualify at all–depending entirely on his or her address of residence.
Variability in Nursing Hours
Once a child is accepted into a program that will provide home nursing care, the next question is how many hours of nursing care the child should receive. Many states have recently moved to standardized assessment tools to determine both eligibility and the amount of services that should be provided.
There are countless problems with standardized assessment tools. First of all, virtually none of them have been verified for accuracy using rigorous scientific study, meaning they are all arbitrary judgments. Some assessment tools have not even been evaluated by a pediatric physician. There are no data in the medical literature that correlate specific technologies or needs with the amount of nursing care a child should receive. The closest one can get in the medical literature is a small study that attempted to correlate the sleep needs of parents with the amount of nursing hours required for sufficient sleep.8
The main problem with these types of standardized scoring systems is they are never fully able to capture the wide range of conditions, treatments, and medical technologies that may be in use. For example, the Oregon scoring system only allows children on full-time ventilators to receive more than 15 hours per day. A child with significant feeding and respiratory challenges who requires ongoing IV medications and therapies all day scores quite low under most systems, despite extensive needs. Similarly, in many states, children with rare diseases, who receive non-standard forms of ventilation, use enteral drainage or suction, have extremely unstable vital signs, or use other non-standard therapies may not be able to have their needs captured appropriately through these standardized tools.
Many states specifically tie scores on assessment tools to the number of nursing care hours or the amount of the budget received. For example, Oregon uses the following system for children with a hospital level of care:
| Level 1
|| 75+ and on a vent 20+ hours per day
|| 554/month (~18/day)
| Level 2
|| 463/month (~15/day)
| Level 3
|| 385/month (~12/day)
| Level 4
|| 339/month (~11/day)
| Level 5
|| 50-59 or vent at night
|| 293/month (~9/day)
| Level 6
|| 140/month (~4-5/day)
Virginia uses a similar system:
|| 10 hours a day
|| 12 hours a day
| 80 or more
|| 16 hours a day
In addition to tying nursing hours to specific standardized scores, the scoring systems in Virginia and Oregon also restrict the total number of nursing hours per day to 16 and 18 hours respectively. Other states such as North Carolina, whose CAP-C program manual states no child may receive more than 126 hours of nursing per week, also have arbitrary caps on nursing hours. Based on statements made by the Justice Department of the United States related to legal cases in Florida and Georgia, arbitrary limits are not appropriate under the EPSDT mandate if children require greater levels of nursing care.9
Finding a Solution
Just who should be eligible for home nursing and how much? This is a question that can only be answered by a child’s family in conjunction with his or her medical team. Unfortunately, even this type of system is not fully reliable, as physicians may be influenced by current standards of potentially poor practice by states, and there is great variability between physicians. Nonetheless, the child’s medical team, who knows the child best, should always determine medical necessity.
A good first step to improving the system as a whole would be to standardize eligibility from state to state. While many children’s hospitals are championing a proposal called the Advancing Care for Exceptional Kids Act of 2015, this proposal would not solve the problem of variable eligibility for Medicaid waiver programs.10 Instead, making the TEFRA option mandatory in all states would allow access to Medicaid for all children who require an institutional level of care without waiting lists. To further standardize the system, the definition of “institutional level of care” needs to be uniform on a federal level.
Once eligibility has been established, the question of how much nursing care must be visited. Firstly, all states must rescind arbitrary caps on hours to be fully compliant with current interpretations of federal law by the Justice Department and courts. Next, states must return to a system where the child’s medical team has the primary say in determining the services needs. Because children will always vary, the most important solution is to ensure that families and physicians participate in the decision-making process. Children’s physicians should always be the ultimate determiners of medical necessity, and state officials must always rely on human judgment rather than standardized assessment tools when determining eligibility and nursing care hours.
Finally, families and advocacy organizations need to be aware of their rights, particularly under the Americans with Disabilities Act as interpreted in the Olmstead decision. This Supreme Court decision clarified that individuals should always be allowed to receive services in community settings instead of institutions, if it is safe and financially responsible. Children have a right to receive nursing care at home if they would be eligible to receive the same services if they lived in an institution, including a nursing home or hospital. Families and advocates need to continue fighting–and filing lawsuits–until all children with complex medical conditions can live at home with the appropriate services.