5
State and Federal Policy
In this session, said Houtrow, speakers focused on ways that policies can align with the goal of supporting children with disabilities and their families so that they can thrive in their communities and live full lives.
SERVICE COVERAGE
Rishi Agrawal (La Rabida Children’s Hospital; Northwestern University) gave workshop participants an overview of the rights that children with disabilities have under the law. Medicaid plays an outsized role in the care of children with disabilities, and under Medicaid, children are entitled to all “necessary health care, diagnostic services, treatment, and other measures…to correct or ameliorate defects along with physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the state plan.” This benefit is referred to as Early and Periodic Screening, Diagnosis, and Treatment (EPSDT); Agrawal said that the treatment piece is critical for children with disabilities but often does not receive sufficient attention. A corollary to children’s rights under EPSDT is an Equal Access Provision, which requires that payments to providers are “sufficient to enlist enough providers so that care and services are available under [each state’s Medicaid program] at least to the extent that such care and services are available to the general population in the geographic area.” For children who are covered under commercial insurance, the standards of coverage are variable. The Essential Health Benefit Standard governs individual and small group plans under the Affordable Care Act, and requires coverage of benefits such as pediatric
services and habilitative and rehabilitative services. Children covered by large employer plans may have different benefits, said Agrawal. Regardless of type of insurance coverage, children with disabilities have rights under the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the American with Disabilities Act (ADA). IDEA guarantees children access to a free appropriate public education, along with the services needed. The ADA, said Agrawal, ensures that children with disabilities have access to home- and community-based services and are not inappropriately segregated in congregate care facilities. Agrawal noted that while children are entitled to these benefits and protections under law, their rights are not always adequately protected and programs that serve them are not always adequately funded.
During the pandemic, and the associated declaration of a public health emergency, new flexibilities and approaches to these programs were introduced. Many of these changes were beneficial to children with disabilities and their families, said Agrawal, including:
- Less onerous prior authorization procedures to receive devices or medications;
- Paid family caregiving and school aide services;
- Fewer redeterminations of eligibility for home- and community-based services;
- Flexibility, overtime allowances, and increased pay to address workforce shortages in home care;
- Virtual education and young adult day programs; and
- Coverage for telehealth services.
Moving Forward
Agrawal noted that many of these changes were flexibilities that families of children with disabilities have been needing for a long time, but that only became available during the pandemic. Given the rights that children with disabilities are guaranteed under the law, however, Agrawal asked if these changes should be viewed as optional flexibilities or if they should be expectations of what is required to be compliant with the law. Going forward, he said, there is a need to consider whether it is “truly optional to do the things that we did in the pandemic for children.” Agrawal identified several areas in which pandemic flexibilities should be extended or expanded in order to better serve children with disabilities and to ensure that their legal rights are protected. First, there is a need to minimize administrative roadblocks to services; navigating the current system can feel like navigating a maze and some families simply give up. Simplifying and removing administrative roadblocks will improve the family experience and ensure
that people who need services are able to obtain them. Reducing administrative burdens to increase access would improve compliance with both the letter and the spirit of Medicaid laws. Further, he said, there is focus in the disabilities world on improving and incentivizing care coordination, but administrative burdens cancel out some of these efforts. Limited resources and efforts are wasted, he said, when care coordinators are focused on “endless red tape.” Second, there is a need to recognize the essential role of families, and to compensate them for their work. The lack of homecare services and other critical services that children need means that the burden has been shifted onto families. In many cases, said Agrawal, the burden falls on mothers, some of whom give up their careers and income to care for their children. Compensating families for their work is an issue of equity, he said, and is needed to “make families whole, given all the barriers that are faced.” A third action step is to provide adequate funding for services for children with disabilities. The Federal Medicaid Assistance Percentage is the amount that the federal government gives to states to provide some services; for children with disabilities, it is 50 percent. During the pandemic, this amount was increased for home- and community-based services; making this increase permanent would help states fulfill their obligation to serve children with disabilities. Finally, said Agrawal, the use of telehealth should be continued and expanded; telehealth is not simply a replacement for an office visit but has the potential to provide better and more innovative care to children with disabilities.
REGULATORY AND OTHER RESPONSES TO THE PANDEMIC
Helen DuPlessis (Health Management Associates) echoed Agrawal in saying that many of the temporary flexibilities afforded during the pandemic were beneficial for children with disabilities and their families, but there were also challenges and a lack of flexibility in some areas. Policies that expanded the use of telehealth were largely advantageous for children with disabilities, as were administrative flexibilities in the areas of prior authorization rules and expansion of pay to family caregivers. Other changes—such as relaxed scope-of-practice limitations and out-of-state licensure requirements—made care easier to access, but also introduced concerns about quality and oversight. One area in which there was a lack of flexibility was in behavioral health. School closures, isolation, and lack of respite put enormous strain on children with disabilities and their caregivers, and impacted their mental health. In addition, families were coping with issues such as unemployment, housing instability, and hunger, which further exacerbated the mental load. DuPlessis said that there was a lack of preparation or anticipation for this toll on behavioral health, and a dearth of options for families. The consequences of the pandemic-related mental
stresses were particularly impactful for low-socioeconomic families and those in minoritized communities.
Moving forward
DuPlessis offered a number of suggestions for changes that could be made to improve care for children with disabilities (Table 5-1); she highlighted and described a few of them for workshop participants. First, she said, stakeholders including federal agencies, managed care plans, and public and private entities should take advantage of the “tragic natural experiment” of the pandemic by conducting a cost-benefit analysis of the impact of the flexibilities that were put in place; this could result, she said, in the removal of some of the more burdensome administrative requirements. Second, Title V agencies should develop a registry of children at risk, and should use this registry to play a connector role in future emergencies. For example, the registry could be used to conduct risk surveillance or to connect patients with providers or other support. Third, federal and state agencies should clarify that care coordination is an EPSDT benefit. Confusion over this point, said DuPlessis, limits this vital support even as the concept of care coordination is expanding dramatically. In addition to clarification, it may be necessary to increase Medicaid reimbursement for care coordination, including reimbursement for paraprofessionals like community health workers or promotoras (the Latinx family equivalent of Parents Taking Action). Finally, said DuPlessis, there is a need to develop pediatric clinic guidelines on the appropriate use of telehealth services for children and youth with special health care needs and disabilities.
IMPACT OF PUBLIC HEALTH POLICY ON SCHOOLS
Schools provide vital educational, therapeutic, and supportive services for all children, especially for children with disabilities, said Dennis Kuo (University of Buffalo Jacobs School of Medicine and Biomedical Sciences). Around 15 percent of public school students receive special education services, and when all public Kindergarten–12 schools shut down in the spring of 2020, many of these services were disrupted. There was variable re-entry to in-person learning during 2020 and 2021, and there are still impacts in the form of teacher and staff shortages, families assessing risk of attendance, and playing catch up for missed services and education, he said.
Decisions about school closures, operations, and resources were largely made on the local and state level, said Kuo. While the CDC issued school operation guidance, it was generally advisory. The American Academy of Pediatrics (AAP) issued guidance that called for prioritizing in-person learning, and noted that policies and procedures should specifically support
TABLE 5-1 DuPlessis’ Promising Policies to Retain or Expand Pandemic Changes
| TELEHEALTH | ADMINISTRATIVE | BEHAVIORAL HEALTH | |
|---|---|---|---|
| Expand use of appropriate telephonic / audio-only services, other virtual communication, remote monitoring devices | Easing prior authorization rules and extending authorizations | Medicaid/CHIP screening for SDOH, referrals, and interventions should become standard practice and incentivized | |
| Expand synchronous and asynchronous TH to those in 1915(c) programs | Relaxing provider enrollment, eligibility, out of state licensure requirements when needed to maintain access to specialists | Mobilize leaders to incentivize routine behavioral health screening for all, especially CYSHCN | |
| Allow new patient visits via TH for FQHCs/RHCs in designated shortage areas | Extend expanded scope of practice for non-physicians, while maintaining or establishing new clinical and training standards | Increase training and confidence of primary care providers to deliver behavioral health services | |
| Continue payment parity for synchronous TH modalities, including audio-only (including for FQHCs/RHCs) | Leverage Title V “Registries” of CYSHCN to play a connector role in future emergencies (e.g., data surveillance, and provisions of info to local CCS agencies) | Encourage and allow incentives for routine behavioral health screening for all including CYSHCN | |
| Allow payment parity for synchronous audio-only PLUS e-visits and eConsults including for some FQHCs/RHCs (or test APMs for clinics) | Federal government to coordinate with states and private health sector a thorough analysis of impact of the temporary flexibilities | Allow reimbursement to pediatric providers to screen caregivers of CYSHCN | |
| Make permanent the removal of site limitations on FQHCs/RHCs | Clarify and support coverage for care coordination services (define care coordination, and develop /adopt standards | Continue reimbursement for behavioral health services via TH including audio-only | |
| TELEHEALTH | ADMINISTRATIVE | BEHAVIORAL HEALTH | |
|---|---|---|---|
| Allow synchronous telephonic / audio-only and other virtual communication for certain new patients under prescribed circumstances (access limitations) | CMS and State Medicaid Agencies should clarify or interpret that care coordination is an EPSDT benefit (beyond the explicitly delineated case management benefit) | ||
| States could identify and expand reimbursement for school-based physical and behavioral health services appropriate for TH delivery | Relax or issue flexible guidance on CMS rule related to reimbursement of legally responsible relatives | ||
| Funding must be targeted to reduce disparities in access to telehealth, telehealth equipment and training for families, providers, and schools; expanding broadband coverage, especially in low-income and rural areas; and interpretation services during telehealth visits. | Extend the enhanced FMAP and continue /expand continuous enrollment efforts that balance need for redetermination | ||
| Pediatric clinical guidelines should be developed to identify the appropriate use of telehealth services for specific conditions among CYSHCN. | |||
| Federal/CMS | |||
| States and Medicaid Plans | |||
| Federal and State | |||
| Other | |||
SOURCE: DuPlessis presentation (2022), slides 6 and 7.
children with disabilities and special health care needs. The AAP urged schools to use layered protection measures, to provide educational support including IEP requirements, and to use shared decision-making approaches. School policies took into account these guidances, as well as local transmission rates, individual risks, hospital capacity, state policies, and other factors. State and local policies dictated whether or not students would attend class in-person, whether masks were required, whether changes to facilities were necessary, and how students with differing needs would be accommodated. These policies in turn influenced the behavior and choices of individuals and families, he said.
As Agrawal mentioned earlier, said Kuo, children with disabilities are protected under laws including the ADA, the Rehabilitation Act, and IDEA, and they have the right to access schools without taking on a far greater risk to their health than other students face. Some children with disabilities are at higher risk for hospitalization and death from COVID-19, making the in-person learning environment risky. At the same time, he said, remote learning may not be an appropriate approach for some students with disabilities. Early federal guidance suggested that students at higher risk should be given the option for virtual learning, while later guidance urged schools to lead with equity and inclusion to ensure that all students have access to in-person learning alongside their peers. As state emergency declarations and mask mandates begin to end, said Kuo, it becomes more difficult for schools to enforce requirements.
Moving Forward
Kuo shared three broad recommendations for improving the experience of children with disabilities in schools. First, he said, leading with equity for children with disabilities means designing inclusion from the very beginning. Families will need different types of accommodations, and some school districts may need more resources to create safe and inclusive environments. Leading with equity and including the voices of all will help make decisions that work for all. Second, there is a need to give more guidance to decision makers about when and why policies can or should change. For example, he said, mask mandates were implemented when community transmission rates were high, but the “off-ramp” from these policies was unclear to school districts or local authorities. Finally, said Kuo, there is a need to empower local health authorities so that they can make the most appropriate decisions for their communities and students. Kuo relayed that he saw superintendents “basically beg” for the authority to mandate masks in schools in order to create a safe environment for all; politics and misaligned policies meant that some local authorities’ hands were tied.
TECHNOLOGY TRANSFORMATION DURING COVID
“Without technology that promotes access, connectivity and community participation, people with ID [intellectual disabilities] may not access services in the community like people without disability. This could lead to loneliness, and dependence on care provided in devolved institutions.”
Periods of turbulence have historically inspired reinvention to overcome constraints, discord, or assumptions, and to achieve new imperatives, said Shea Tanis (Kansas University Center on Developmental Disabilities; Schiefelbusch Life Span Institute; University of Kansas). The COVID-19 pandemic was no different, with technology advancements and disruptions that changed the experience of healthcare, commerce, education, and employment. These technologies included telehealth appointments, remote work and school platforms, virtual companion care, and home monitors and sensors. Tanis and her colleagues conducted a survey of 180 healthcare providers and asked which technologies they thought should be maintained in the long-term. While telehealth was in the lead, Tanis said that there was considerable support for maintaining each of the technological advancements (Figure 5-1).
While these innovative solutions improved care and accessibility for many people, said Tanis, they also highlighted tangible and devastating inequities in technology and information access. Some individuals, including those who were disabled and/or elderly, faced barriers to using telehealth, shifting to remote employment, accessing information, and remaining
SOURCE: Tanis presentation (2022), slide 6.
engaged in their communities. The specific barriers varied by individual, but included lack of access to hardware and software, difficulty understanding or using technologies, and lack of accessible support, said Tanis.
Beginning in 2017, some state development disabilities and health and human services agencies began shifting to “Technology First” policies and practices. Technology First is a “framework for systems change where technology is considered first in the discussion of support options available to individuals and families through person-centered approaches to promote meaningful participation, social inclusion, self-determination and quality of life” (Tanis, 2020). This approach, said Tanis, solves the most pressing challenges in the support and care of people with disabilities. Technology First promotes autonomy, self-direction, and community engagement; addresses the direct care workforce shortages; and drives more efficient and effective practices. States that had adopted elements of this approach, she said, were able to hit the ground running when the pandemic began because they had already laid the foundation for using technology to provide services and supports to individuals and families. Technology First initiatives that had already been pursued by states included efforts such as capacity building, engaging with advocacy organizations, implementation teams, data-driven decision-making, and allocation of resources. The American Rescue Plan Act (ARPA) furthered the interest and investment in technology solutions by providing funds to enhance, expand, or strengthen home- and community-based services. Nearly all states plan to or have used ARPA funds to invest in technologies in the areas of telehealth, devices, remote support, case management, virtual services, and data management, said Tanis.
Moving Forward
Innovations and investments in technology are moving at a rapid pace, said Tanis, and it is imperative that there is a plan in place for monitoring and evaluating the impact on individuals with disabilities and their families. For example, there are initiatives to improve access to broadband in certain communities; these initiatives should be accompanied by accountability for procuring and developing accessible products and services, and funding at the state level to advance technological literacy, agility, and resilience. Tanis also encouraged states to move forward with advancing Technology First legislation, which will help harmonize and modernize policies for flexible and agile practices, facilitate cross-agency collaborations to improve access to and use of technologies, and promote user engagement and user-driven training.
DISCUSSION
What are some specific examples of administrative roadblocks, and how can we work to dismantle them?
Agrawal said there are a number of roadblocks, including prior authorization requirements for expensive medication or medical equipment. For example, a task as simple as getting a wheelchair repaired may have layers of processes that families have to go through. For children with mental and behavioral health issues, getting access to services, such as crisis intervention, can be particularly hard, she said. Many of these families spend much of their time working with insurance companies trying to get services covered. Agrawal said that the process of dismantling these roadblocks begins with families knowing their rights, and encouraging families to stand up for themselves and be self-advocates. Connecting families to one another can be helpful, as people who have already navigated roadblocks may be able to help others figure out who to call and what to ask. Providers can assist families in getting needed services by writing strong letters of medical necessity that make references to EPSDT and other legal rights. For some situations, it may be necessary to partner with lawyers and advocacy organizations, said Agrawal, noting that “sometimes it seems as if kids need a legal home just as much as they need a medical home with our current system.” DuPlessis added that in order to make things work better for children with disabilities, it is critical to have the voices of these families at the table at the beginning stages of planning programs or policies.
How can agencies with different charges collaborate for a common objective?
Title V agencies have the potential to provide essential leadership by convening stakeholders to talk about the issues facing children with disabilities and their families, said Agrawal. DuPlessis agreed, saying that Title V agencies know these populations better than anyone. She noted that these agencies tend to be “rather timid” about using their voice and being demonstrative about what is needed, but that if they are willing to do so, it would be very powerful. Tanis added that Title V programs can also serve as a model for others; for example, demonstrating what technological accessibility can look like.
DuPlessis said that in order to move forward and take action, it will be necessary for stakeholders to come together around shared goals and principles, to build an action plan, and to identify a primary leader who will be accountable for progress.
Where can providers get training and support when working with children with disabilities?
DuPlessis agreed that there is a need for this type of training in medical schools, nursing school, and other health professional programs. Providers may not feel comfortable writing letters of medical necessity when they are not well-versed on the subject, and may not have the time to learn the ins and outs of prior authorizations. DuPlessis encouraged people to “call up your friendly local medical director” and explain exactly what is needed (e.g., an authorization request with specific language). She said that once providers get experience with the basic process, it is fairly simple. Kuo shared a message that he received early in his career as a physician: “You don’t need to be perfect, you just need to care and you’ll learn it.” This message, he said, was confidence-inspiring, and he has taken it to heart in his career.
What last message would you like to share with the audience?
- Tanis: Don’t be afraid of innovation and of trying new things. Evidence may be insufficient in the beginning, but it will build as innovations are put in place.
- DuPlessis: Base your work around the “north star” of taking care of children and families.
- Agrawal: The pandemic has shown that things can change, but we need to collaborate, build coalitions, and advocate. If we “keep our feet on the gas pedal,” change is possible.
This page intentionally left blank.
