In several states struggling with economic issues, the ax has come down on children with special needs. We have seen Pennsylvania try to institute copayments on Medicaid services for children with special needs, Illinois attempt to eliminate or limit its program for children with trachs/vents, and California reduced its in-home services. Many other states are planning or attempting to make cuts. How can we ensure that children with complex medical needs in all states get the care they require without bankrupting their families? The answer is we need guaranteed Medicaid coverage for all children with complex medical needs.
States are not required to provide any services to children with special needs unless they qualify for Medicaid financially. While financial qualifications vary by state and age, most states only guarantee services to children below 100-200% of the federal poverty level.
Many families above this level, however, simply cannot afford to care for their children or provide for their medical needs without assistance. Some families cannot qualify for Medicaid or private insurance at all, leaving their children completely uninsured and in need of full Medicaid benefits.
Even families with good incomes and private insurance may be unable to meet their children’s needs, because private insurance rarely covers services like private duty nursing. Other services such as therapies, formula coverage, or durable medical equipment may be greatly restricted by private insurance. Copayments, coinsurance, and deductibles often add up to thousands of dollars a month for families of children with special needs.
These children are considered to be underinsured, meaning they have insurance but it does not cover many of the services they require. These families desperately need Medicaid “wrap-around” services that supplement their current insurance by providing home nursing care, personal care services, therapies, durable medical equipment, enteral formula, and other uncovered services.
Without Medicaid assistance, families of children with complex medical needs have few choices. They can try to pay out-of-pocket, requiring them to restrict the care and services their child gets, which can negatively affect their child’s health while simultaneously bankrupting them financially. They can quit their jobs so they qualify for Medicaid financially, impoverishing themselves and requiring additional public benefits such as food stamps. They can give up custody of their child to a relative or the state in order to obtain Medicaid benefits, or get divorced so they appear to have a lower income. Or, most sadly, they can place their children in institutions such as nursing homes and hospitals, because institutional care uses a different set of income deeming rules to qualify children for Medicaid, and institutional care is 100% free in most cases.
All states are aware of these problems, and all have taken steps to assist families struggling with catastrophic medical expenses. But while institutional care is 100% guaranteed and free, providing home-based services through Medicaid or Medicaid wrap-around coverage is completely optional. This is commonly referred to as Medicaid’s institutional bias. Because these programs are optional, states can choose not to offer them at all.
If states do choose to provide services, they are allowed to choose what groups of children will be provided with services, how many children will be covered at one time, and what specific services will be covered. For example, in many states you can receive nursing care at home if your child has a feeding tube and oxygen, while in other states you can only receive these services if your child has a trach or vent. Some states serve all children with autism and none with cerebral palsy, while others only serve children with developmental disabilities younger than five.
Every state does things a little bit differently. Many states simply extend Medicaid (known as a TEFRA waiver) to any child who would otherwise need to live in an institution without it. Other states apply to the federal government to receive 1915(c) or home and community based services (HCBS) waivers that provide Medicaid and additional benefits to a defined number of children who have similar needs, such as children with medical technology or children with autism. Some states have state-based programs or unique federally-funded 1115 demonstration waivers.
The problem with this system is that services may not be available to some children or can disappear at any time, leaving families completely unable to handle their children’s care. For example, a child who moves from one state to another may desperately need help but may not qualify for services in the new state. In some cases, children are on waiting lists that are years—or decades—long. Sometimes children have changes in medical status, such as no longer needing a ventilator, and find they suddenly do not qualify for services any longer.
Most recently we have seen states attempt to radically cut even the most critical programs, simply because the state is in financial distress, and these programs are technically considered to be “optional.”
Legally, all citizens must be given the choice of receiving their care in the most integrated setting possible, meaning the community, because of the Americans with Disabilities Act as interpreted by the Olmstead Supreme Court decision. This means that if a state will pay for institutional care for a child, by law they must also pay for home-based care for that same child. Currently, many states are not in full compliance with this law, and there are hundreds of lawsuits across the country fighting for citizens to receive appropriate care and services at home.
There is an apparent contradiction between this legal standard and the federal Medicaid programs for children with disabilities, which make home and community based services optional. With no federal requirement for these programs, and no federal guidelines mandating who should be covered, we end up with a patchwork system that is completely optional. We need to eliminate this non-compulsory system and come up with a new system that has uniform regulations from state to state and is consistent with the Americans with Disabilities Act.
Equally important is the need to eliminate waiting lists and get children the services they need to help them become lifelong productive citizens. All children entitled to these Medicaid benefits should be receiving them with minimal wait time.
As such, I propose to create a national bill, called the Katie Beckett Bill after the recent passing of Katie Beckett, the Medicaid pioneer whose case first led the government to extend Medicaid to children with complex medical issues. This bill would establish a new class of children who are guaranteed Medicaid eligibility regardless of parental income. This new class would be made up of children who would otherwise require an institutional level of care, such as care in a hospital, nursing home, or intermediate care facility, if they were unable to receive services at home. These children would be guaranteed full Medicaid benefits, including benefits through the EPSDT program, which includes services specifically required for children, such as nursing care and medications.
States would continue to have the option to provide additional benefits, such as respite, home/vehicle modifications, and training services, which they deem would be required to prevent institutionalization of children in their state. These benefits could be offered to specific populations as needed.
Of course, many states would balk at such a plan because it has the potential to bring numerous additional children into the Medicaid program, at an increased cost to the state. In reality, however, providing children with comprehensive health care and services beginning at as early an age as possible is likely to reduce the lifetime cost of care in these populations. Similarly, keeping these children out of hospitals and institutions is likely to save significant state dollars as well. In some cases, a few years of intensive medical care or therapy may prevent lifelong conditions, dramatically reducing costs to the state.
We hope to begin petitioning legislators at the national level to create a bill to guarantee Medicaid coverage or Medicaid wrap-around coverage for all children who would otherwise have to live in an institution without home and community based services.