One in five children under age 18 have special health care needs, representing 15 million children from birth to 21. Children with special health care needs (CSHCN) include those who have chronic physical, developmental, or behavioral health needs that require services of a type or amount beyond that required by children generally. With additional need for services and elevated costs, health coverage is very important for CSHCN and their families.
Nearly half of CSHCN are covered by Medicaid and/or the Children’s Health Insurance Program (CHIP), making it a lifeline for them and their families. Medicaid covers a wide range of medical and long-term services and supports, many of which are not covered at all or available only in limited amounts through private insurance. Coverage for these services is essential for keeping children with complex and chronic needs living at home with their families, in their communities.
H.R.1 (OBBBA) legislation passed last year directly puts this comprehensive Medicaid coverage at risk. Justice for CSHCN and their families will require policymakers to keep Medicaid stable and strong.
Speakers:
- Elisabeth Wright Burak, Senior Fellow, Georgetown Center for Children and Families (moderator)
- Kay Johnson, President, Johnson Policy Consulting
- Dr. Kimá Joy Taylor, Founder, Anka Consulting
- Kasey Dudley, Director, Parents as Champions, SPAN Parent Advocacy Network
- Dr. Allysa Ware, Executive Director, Family Voices
- Caitlin Feasby, Managing Director of Policy, Groundwork Ohio
Download the Presentation Slides
Resources:
- A Brief History of the Politics of Child Disabilities – Kay Johnson
- Medicaid Helps Children and Youth with Special Health Care Needs (CCF)
- Medicaid Helps Families of Children and Youth with Special Health Care Needs (CCF)
- 5 Key Facts About Children with Special Health Care Needs and Medicaid (KFF)
- Medicaid Provides Early Intervention for Infants and Toddlers with Disabilities and Developmental Delays (CCF)
- H.R.1 Explainer: Medicaid, CHIP, and Affordable Care Act Marketplace Cuts and Other Health Provisions in the Budget Reconciliation Law, Explained (CCF)
- Work Reporting Requirements Hub (CCF)
- Medicaid Expansion States (KFF)
This webinar is apart of a larger series, Medicaid Connections.
Extended Q & A:
Question: Some home visiting services target CYSHCN but are not available in all counties. Are there efforts to build a universally offered program for all children and youth with special health care needs?
Answer:
This is a good question, and the short answer is that many of these decisions may lie in state agencies or policymakers. How each state funds home visiting and the specific service, such as care coordination, for CYSHCN may vary.
Your question also depends on how you are describing home visiting.
Generally, I refer to home visits for care coordination, for delivery of early intervention services, or child welfare case management as home based services. The term home visiting today implies one of the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) programs.
You may be referring to home visits by care coordinators for CYSHCN in Oregon, such as CaCoon, which relies on public health (federal maternal and health block grant, or Title V funds), Medicaid reimbursements and other state and local resources. County spread could depend on qualified care coordinators available, funding limits or others. I would engage with the Family 2 Family group in Oregon or other policy resources to help learn the state landscape. Many states use Title V Maternal and Child Health Services Block Grant dollars to fund care coordination for CYSHCN, including home-based services in some areas.
For folks who work in early child development, home visiting generally refers to evidence-based home visiting programs for children anywhere from birth to age five (or even pregnant mothers). At the federal level, the Maternal Infant and Early Childhood Home Visiting program (MIECHV) provides grants to states for home visiting and about half of states use Medicaid to reimburse some services or home visits that are part of MIECHV programs.
Question: Curious how folks who have private insurance can qualify for Medicaid – I thought Medicaid was an income eligible program?
Answer:
Medicaid is an available insurance program for anyone who qualifies based on state eligibility criteria, even if they already have private insurance. If the enrollee has private insurance, Medicaid is considered the “payer of last resort,” meaning it only pays for services that the private plan will not cover, or the added out-of-pocket costs that may remain even after private coverage kicks in. This is more commonly used in the case of people with disabilities and CYSHCN.
People can become eligible for Medicaid in many ways, starting with income eligibility. (See slide 19). For children, income eligibility is much higher than for adults. For those with a disability or special needs, they may be able to enroll by income alone, but may also be eligible based on a disability or health condition along with their income. For example, some states use “medically needy” options for coverage, which takes into account the amount of income spent on health care while privately insured or without insurance. If a person’s income drops to very low income levels (usually under the poverty line in most states) *after* accounting for health care spending, then they may become eligible for this category. This is just one of many possible categories that may apply depending on state-adopted options, so I would start by talking with your state eligibility office to see if anything is available.
Question: We’re also very worried about young adults with SHCN like 19-21 year olds in the California Children’s Services program, who will be subject to work reporting. Do you know of any state efforts to protect those folks?
Answer:
There is a lot of confusion about who Medicaid work reporting requirements apply to, so that is an understandable concern. Medicaid reporting requirements and extra renewals every 6 months apply to adults enrolled in Medicaid Expansion coverage (California refers to this group as the “Adult Expansion Population”). While it’s confusing because so many things are referred to as “Medi-Cal”, young adults in the California Children’s Services program are NOT subject to any work reporting requirements.
When WRR starts, the state should know on its end which Medicaid program each person is enrolled in. Their data systems should indicate who is enrolled in Medi-Cal adult Medicaid expansion and which 19- and 20-year-olds are in the Children’s Services program. The 19- and 20-year-olds in that program should NOT receive a notice stating they need to comply with new requirements.
California recently sent its notice to Medicaid Expansion adults here. It just says adults 19-64, so I can see how it’s confusing to 20- and 21-year-olds in the CA Children’s Services program. However, only Medicaid Expansion enrollees should receive that letter. An example of a better notice is Virginia’s here, which states that other Medicaid groups (like pregnant women, children, or adults with a disability) are not affected. Utah’s notice here says in bold that this new reporting requirement only applies to Adult Expansion enrollees.
Question: I’m interested in your thoughts on what can or should be done in some states that are particularly being targeted to have their Medicaid funding cut/withheld (California, Minnesota, etc.). As was mentioned earlier, some of the anti-fraud measures are significantly adversely impacting families who are trying to get supports for their children. Particularly interested in what public health partners can do to support families as this is happening.
Answer:
In these states, as in most, there is important work for child and family advocates. Educating your Medicaid agency staff, governor’s office, and state legislators is an important step. If you have personal experience or knowledge about how the programs work well, you may provide important information to them as they make decisions and respond to federal pressures. As the panel showcased, raising your voice to talk about the importance of Medicaid and services it provides for CYSHCN and other children is valuable in every state.
Question: Can you all talk about concerns regarding access to EPSDT (including lead poisoning testing) for children in Head Start given the feds proposed gutting of Head Start responsibilities.
Answer:
Head Start has a long and productive partnership with EPSDT, guided by federal law and regulations. Many are raising concerns about Head Start, and adding your voice to those efforts is important. In addition, you might work with your local health department, community health centers, children’s hospitals and other providers to ensure that blood lead testing is administered when appropriate. (BTW, this has long been a challenge in EPSDT.)
Question: I have found that the lawyers for school systems advice the boards and employees to limit what families and students know about their rights, both under IDEA & Medicaid. Any suggestions to change these self-serving “policies”?
Answer:
Providing accurate and up-to-date information for families is an important step. They need sources of information that can be trusted, do not have self interest, and let them know about their rights, eligibility, and the available services. As discussed by the panel, partnering with and promoting use of the Family-to-Family Information Center in your state is one practical step.
Question: Can you elaborate on some of the red tape and barriers that families are facing with maintaining Medicaid. The renewal process has become more confusing and complex.
Answer:
The enrollment and renewal processes in Medicaid are complex, with much variation by state. (This survey details by state the kinds of requirements and options.) For kids in particular a lot of work has been done to streamline and simplify enrollment and renewals over past decades. Certainly added red tape for adults under H.R. 1 sets us back. But one thing to keep in mind is that every child is guaranteed a full, uninterrupted year of Medicaid or CHIP coverage from the day they enroll, regardless of changes of circumstances. So even if adults or parents lose coverage, children’s enrollment should be protected until the annual redetermination. Getting out the word to parents about this protection is another step you might take.
Question: How would you address the discrepancy in Medicaid costs within the children and youth with special health care needs domain? For example children with medical complexities spend the majority of pediatric Medicaid funding, so it’s logical that they would be the most susceptible to Medicaid cuts. They’re also the children outside of psychiatric conditions most likely to reside in out of home placements. I worry about how to rectify disability based discrimination within this larger children and youth with special healthcare needs if possible I wanted to get a panelist view on how we need to best adapt our energy to protecting the children most likely to have a mortality or morbidity outcome related to the Medicaid cuts.
Answer:
This is a great question. First, a reminder that when medically necessary, there are no optional services for children as a result of the strong design of EPSDT federal law and rules. But to your point, states could consider rolling back reimbursement rates or other ways that could impact services access. We remain concerned that because 1 in 5 CYSHCN and disabilities is in an optional coverage/enrollment category, so that may be an area targeted for cuts. States may decide to eliminate waivers, drop buy-in or medically needy programs, etc.
When trying to balance budget needs, states may look at optional services (for adults), or reimbursement rates or other areas of Medicaid. While your logic is understandable, know that strong state advocacy can help to align Medicaid and other state budget advocates to think bigger, perhaps not about where best to cut (or not) but instead push for states to use options to raise revenue. At minimum, there are hundreds of examples of folks telling stories and activating folks who support children with special health care needs to stave off cuts in the past at the state and national levels, so nothing is a foregone conclusion. Educating your neighbors, friends, and colleagues about what may be at stake is a great place to start.
Question: Is there a good list or resource of statewide organizations for all 50 states that work on Protection & Advocacy and/or Medicaid support and defense?
Answer:
This is a great question and there are many! In addition to the organizations listed in the resources the links below to 50-state networks allow you to find go-to advocacy resources in your state
Partnership for America’s Children
Family Voices Affiliates and/or Family-to-Family Information Centers (F2F)
Alliance for Early Success State allies
State Priorities Partnership network
Question: Are there templates for families and providers to send to legislators and state/federal agencies to inform them of the deficits in implementation of these important laws?
Answer:
Many of the state groups linked above are likely to have these. Family Voices also has a federal newsletter with updates on activities. Feel free to reach back out if you can’t find what you’re looking for and we can try to direct you to the right place.