Introduction
Family caregivers play a critical role in supporting children and youth with chronic illness, behavioral and special health care needs, and medical complexities. Without access to adequate services and supports, family caregivers are often relied upon to fill gaps in care. This may include providing complex, nursing-level medical care (e.g., tracheostomy care), technical medical equipment tasks (e.g., adjusting feeding tubes), treatment or therapeutic services for behavioral health needs, care coordination, and managing medical supply inventory.[1],[2] Given these significant responsibilities, these family caregivers report higher levels of physical and emotional stress and financial strain compared to other families.[3]
Respite is a critical service for families that provides temporary relief to caregivers. As part of a continuum of home- and community-based services (HCBS), respite can improve families’ quality of life[4],[5] and help improve outcomes, including promoting more stable living situations.[6],[7] Despite these positive impacts, caregivers of children with chronic and complex needs report that respite is not sufficiently available.[8] Because Medicaid and the Children’s Health Insurance Program (CHIP) cover 44 percent of this population,[9] states can play an important role in improving access to respite care for children with chronic and complex needs and their families by covering this service through HCBS authorities and Section 1115 Medicaid Demonstrations.
This report is informed by NASHP’s 50-state review of Medicaid coverage of respite services and interviews with state health policymakers from Illinois, Vermont, and West Virginia. Additional state examples from Colorado and Massachusetts were gleaned from NASHP’s Respite Summit, held in February 2024. This report reviews key findings about these states’ approaches and complements NASHP’s report on respite services for older adults and adults with physical disabilities.
State Strategies
Many states have implemented various strategies to support respite services for children and youth with chronic and complex needs through Medicaid. Through discussions with Illinois, Vermont, and West Virginia, NASHP identified the following strategies, which are examined in more detail below:
- Cross-Agency Collaboration: Because multiple state agencies can cover respite services for children and youth, state agencies collaborated to help ensure that policies are aligned and complementary.
- Family and Provider Engagement: States engaged families and providers in respite service design and implementation.
- Service Types and Standards: States designed respite service types and standards to meet the unique needs of children and youth, including requiring specific training and licensure for providers.
- Self-Directed Services: States offered self-directed respite services for children, youth, and families to expand the provider workforce and support child and family choice.
- Education and Training: States implemented outreach, education, and training strategies for families and respite providers to raise awareness, improve the quality of respite services, and expand the direct care workforce.
- Rates: States adjusted rates for respite services to incentivize providers and increase provider capacity.
Medicaid Authorities Covering Respite Services for Children and Youth
State Medicaid agencies can cover respite services through multiple authorities, including 1915(i) HCBS state plan amendments (SPA), Section 1115 Demonstrations, and 1915(c) HCBS waivers. Recognizing the importance of respite care for caregivers of children and youth with various physical and behavioral health conditions, states can use these authorities to ensure that children and youth with a wide range of conditions can access Medicaid-covered respite services. For example:
- Illinois uses four 1915(c) waivers to cover respite services for children, youth, and adults who are medically fragile or technology-dependent, those who have physical disabilities, those with a brain injury, and those with HIV/AIDS. In July 2022, Illinois also implemented a 1915(i) SPA that covers respite services specifically for children and youth with serious emotional disturbance. In March 2024, the state also submitted a second 1915(i) SPA for federal approval that would cover respite services for children with a life-threatening or life-limiting condition.
- Vermont uses a single Medicaid authority — its 1115 Global Commitment to Health Demonstration — to cover respite services for children, youth, and adults. This includes those with developmental disability or autism spectrum disorder, a qualifying mental health need, or traumatic brain injury, and children and youth with life-limiting conditions.
- West Virginia uses two 1915(c) waivers to cover respite services. One covers respite services for children and youth with serious emotional disorders, and the other covers respite for children, youth, and adults with intellectual/developmental disabilities.
For more information on these states’ coverage of respite services, see the fact sheets in the appendix.
Collaborating across agencies to design and implement aligned and complementary respite policies
Multiple child- and family-serving systems offer respite services, making cross-agency collaboration critical to align strategies, maximize resources, and streamline access to respite for families. State agencies engaging in these collaboration efforts include state behavioral health, child welfare, public health, disability, and other agencies, each of which may provide respite through different funding streams. These agencies also often administer one or more HCBS waivers or 1915(i) state plan amendments (SPA) under the oversight of the state Medicaid agency.
States described collaborating across various state agencies and other partners to design and implement Medicaid-financed respite services.
Illinois and West Virginia officials collaborated across state agencies, including Medicaid, child welfare, behavioral health, and education, in the design of their 1915(i) SPA and 1915(c) Children with Serious Emotional Disorders (CSED) waiver, respectively. Officials from both states raised the importance of child welfare collaboration to ensure respite services covered by Medicaid are complementary to respite and other services offered by the child welfare system and that children involved in different systems are able to access the same services.
State health officials shared that the Medicaid requirement that children meet an institutional level of care need to receive HCBS is a barrier for families to access respite and other needed services as an early intervention. To address this barrier, officials in Vermont described coordinating to leverage other funding streams, such as Mental Health Block Grant funds, to cover respite for families before they meet an institutional level of care need.
Additionally, Vermont has worked across the state Medicaid, aging and disability, and public health agencies to streamline respite care for families. The state’s Family Managed Respite program, administered by the state’s aging and disability agency, provides respite for Medicaid-enrolled children with mental health needs or developmental disabilities. In designing this program, the state worked to align language about family-managed respite with information from the state’s Title V Children and Youth with Special Health Care Needs program, administered by the state’s public health agency, to provide consistency for families.
Assessing Respite Service Capacity: Massachusetts’ Landscape Analysis
Because multiple state agencies are involved in providing respite to children and youth, states can consider opportunities to strengthen their understanding of how these services are provided across the system. For example, Massachusetts’ state Medicaid agency, MassHealth, worked collaboratively within and across agencies in the state to conduct a landscape analysis to assess gaps and needs related to respite for children and youth and their caregivers. Agencies and divisions involved in the analysis included:
- MassHealth
- Department of Public Health
- Department of Children and Families
- Department of Mental Health
- Department of Developmental Services
To conduct the analysis, MassHealth met with respite experts from these agencies and teams to understand what respite services are currently available, strengths and limitations of these services, and opportunities for improvement. State health officials from Massachusetts noted that this analysis provided a holistic understanding of how the current system provides respite services, gaps in this system, and how MassHealth may be able to work with partners to close these gaps.
Engaging family and providers in service design and implementation
Families and providers are key partners in the design and implementation of respite services for children with chronic and complex needs. This strategy aligns with the 2022 National Strategy to Support Family Caregivers, which highlights advancing partnership and engagement with family caregivers as one of five national goals. States described several key family and provider engagement strategies to raise awareness and increase the availability and uptake of respite services. State health officials noted that respite is one of the main services that families say they need but face challenges in accessing. One way that West Virginia engages families is through the state’s Kids Thrive Collaborative. This partnership initiative hosts quarterly meetings with families, state Department of Health and Human Resources leaders, and other West Virginia partners[MP4] to discuss the state’s system of care for children and youth with behavioral health needs, including the state’s 1915(c) CSED waiver and respite services. Through this partnership, families help guide the design and implementation of respite for children and youth, among other services and supports.
State officials from West Virginia also noted that family and provider feedback led to an impactful policy change: allowing providers to deliver respite services covered through the 1915(c) CSED waiver in the community. Before this policy change, respite providers were required to stay with a child in one location, whether in their home or out-of-home setting. However, families and providers reported that children and youth are often more responsive to respite services while engaging in community activities, such as walking in the park or volunteering. Based on this input, the state updated the 1915(c) CSED waiver to allow respite to be provided in the community as long as the service begins and ends in the child’s home or out-of-home setting. The state also added non-medical transportation as a waiver service so respite providers can bill Medicaid for the time spent traveling with children between locations.
Designing respite service types and standards to meet the needs of children and youth
To meet the range of needs of children and families, Illinois, Vermont, and West Virginia all cover both in-home and out-of-home respite for children and youth. These states have also implemented provisions to support quality respite services for children, including provider training and licensure recommendations and requirements. While there are various approaches to providing out-of-home respite, states may implement different licensure requirements for out-of-home respite compared to in-home respite. State health officials noted that provider capacity is especially limited for out-of-home respite and that they are strategizing with providers to expand this service capacity.
Similar to NASHP’s findings on respite services for adults, Vermont differentiates between “respite” and “skilled respite” based on the complexity of the care required. Vermont offers “skilled respite” for children enrolled in the Pediatric Palliative Care program, which provides respite services for children and youth with life-threatening or life-limiting conditions. Differentiating between “respite” and “skilled respite” accounts for the higher complexity of care for this population. For standard respite services, Vermont sets provider qualifications but does not require a specific license or certification. In contrast, skilled respite services must be provided by registered nurses (RNs), licensed practical nurses (LPNs), or licensed nursing assistants and are reimbursed at a higher rate than other respite services. The state recommends that skilled respite providers complete the End-of-Life Nursing Education Consortium Pediatric Palliative Care curriculum to ensure that these providers have the necessary expertise to meet the needs of children and youth in the program.
Illinois developed the Children’s Community-Based Health Care Center (CCBHCC) model as a demonstration program under the state’s Alternative Health Care Delivery Act to provide tailored out-of-home respite services to children and youth with medical complexity. CCBHCCs are the only providers eligible to deliver Medicaid-covered out-of-home respite for children and youth enrolled in Illinois’ 1915(c) Medically Fragile, Technology Dependent (MFTD) waiver. Through the CCBHCC model, specially licensed sites provide short-term respite for up to 14 days and transitional care for up to 120 days for children with medical complexity, including those who are medically fragile, technology dependent, or require nursing care. The model includes specific provisions to ensure that facilities meet the needs of children, such as requiring facilities to employ registered nurses certified in pediatric advanced life support and other training specific to children.
In West Virginia, out-of-home respite care is provided to children and youth enrolled in the state’s 1915(c) CSED waiver by therapeutic foster care homes that are licensed through the state’s child welfare agency, the Bureau for Children and Families. This requires strong coordination across agencies and providers to ensure that children in foster care who are enrolled in the CSED waiver do not receive Medicaid-covered out-of-home respite, as this service is already covered through the Title IV-E foster care payment rate. State officials noted that because therapeutic foster care homes are already limited they are exploring other opportunities to engage providers in out-of-home respite. For example, residential service providers have expressed interest in beginning to provide HCBS, and the state is encouraging them to prioritize respite.
Respite for Siblings of Children with Chronic and Complex Needs: Colorado’s New Adventures Program
State health officials shared that a common challenge for families is that respite services often are not covered for siblings of children with chronic and complex needs. For example, a child enrolled in a 1915(c) HCBS waiver may be eligible for respite, but if their sibling is not, their caregiver may face barriers to using the service. To address this barrier, Colorado is piloting a community-based respite program for children and youth, New Adventures, through Easterseals Colorado and the Colorado Respite Coalition, in rural Southern Colorado, initially supported by American Rescue Plan Act funding. This program braids funding to support families with multiple children needing respite care services. Medicaid covers respite care for children enrolled in several waivers. For children in the same household who do not qualify for a Medicaid waiver, New Adventures accesses other funding sources, such as Colorado’s Administration for Community Living-funded Lifespan Respite grant. This cohesive approach allows for all siblings to participate in community-based respite activities offered through the program, regardless of whether they qualify for a Medicaid waiver, which helps address service gaps in rural areas.
Offering self-directed respite services for children and families
Self-direction programs allow individuals or their representatives to become employers who hire their service provider, who can be a family member or friend. Self-direction is an important strategy to pay family caregivers of children and youth for the services they provide,[10] and families may be more comfortable receiving respite care from a relative. As with respite services for adults, self-direction provides opportunities to expand the respite provider workforce that serves children and youth. As of June 2022, over half of all Medicaid authorities covering respite for children and youth allowed self-direction.[11]
A key consideration for states designing self-direction programs is determining which family members are eligible providers. These family members may include relatives, legal guardians, and/or legally responsible persons. When self-direction is used for respite services, legally responsible persons, who are often primary caregivers, are typically ineligible providers because the purpose of respite is to provide relief to primary caregivers. As of June 2022, roughly two-thirds of the Medicaid authorities covering respite for children and youth allowed relatives to be paid providers.[12] For legal guardians and legally responsible persons, this percentage was 30 percent and 6 percent, respectively.[13] These percentages have likely increased since 2022 as more states have made temporary flexibilities during the public health emergency (PHE) allowing family members to be paid providers permanently.[14],[15]
Both Illinois and Vermont allow self-directed respite services for children and youth. In Illinois, relatives are eligible to provide respite services for children and youth enrolled in all 1915(c) waivers. For those enrolled in the 1915(c) MFTD waiver, legal guardians and legally responsible relatives may also provide respite services if they do not live in the same household as the child and are an RN or LPN. This policy previously only applied to individuals over age 21. To increase access to respite services, Illinois expanded this policy to children and youth during the PHE and then made the change permanent.
To tailor self-directed respite services to children and youth, Vermont has implemented family-managed respite. These services are available to Medicaid-enrolled children and youth who receive mental health and/or developmental services from the state but do not meet HCBS eligibility criteria or who want a relative to provide respite services. Based on the intake and assessment process, families may be allocated up to $6,000 per year for family-managed respite services. Respite services may be provided by family members as long as they are not a primary caregiver, which includes parents, stepparents, adoptive parents, legal guardians, and parents’ domestic partners.
Providing education and training to families and providers about respite services
As other states noted regarding respite services for older adults and adults with physical disabilities, state health officials recognized the importance of increasing families’ and providers’ awareness of respite services to improve access to them. States described outreach and training strategies for families and respite providers, not only to increase awareness, but also to improve the quality of respite services and expand the direct care workforce.
West Virginia partnered with West Virginia University to conduct outreach to families and provide education about the state’s 1915(c) CSED waiver, including services available through the waiver and how to enroll. This effort resulted in an increase of nearly 200 additional families applying for the waiver per month. The state has also conducted targeted outreach to all eligible providers of services in the waiver, including respite, and holds regular office hours for providers to ask questions about delivering respite and other services. State health officials noted that one of their priorities is to continue exploring opportunities to improve outreach and communication to families and providers.
To ensure providers are well-equipped to provide high-quality care to children and youth with chronic and complex needs, West Virginia partners with Marshall University to offer training for providers to better understand how to support families of children with complex behavioral health needs, including through respite services. The state also offers trauma-informed care training for the direct care workforce, and training in High-Fidelity Wraparound across the state.[16]
In addition to conducting outreach to existing providers, West Virginia has employed training and education strategies to engage new providers. Given their experience, family caregivers are often well-positioned to become respite providers for others. Recognizing this, West Virginia offers training to families whose children have received services through the state’s 1915(c) CSED waiver program to become respite providers. The state has also provided training to local high school and college students to engage them in the direct care workforce.
In Vermont, the state’s mental health agency and the aging and disability agency each contract with regional designated agencies and specialized services agencies, which are responsible for local planning and service coordination to ensure that needed services are available for people with developmental disabilities and behavioral health needs. These agencies contract directly with providers in the region to support service capacity and work with the state to identify promising practices for engaging providers to increase the availability of respite services. The state fosters connections across the designated agencies and specialized services agencies to share successful strategies and lessons learned in engaging providers.
Facilitating Connections between Family Caregivers: Massachusetts’ Caregiver-to-Caregiver Respite Network
Family caregivers of children and youth with chronic and complex needs can benefit from support and social connection with other caregivers. These caregivers may also be able to draw on their experience to provide high-quality respite for other families. At the same time, despite states’ efforts, gaps remain in the availability of respite services. To address this need and support a sustainable respite workforce, the Massachusetts Executive Office of Health and Human Services supported funding for the Caregiver to Caregiver Respite Network, which was launched in February 2024. To participate, caregivers of children with chronic and complex needs apply to join this statewide network. Caregivers are matched with one another as respite providers based on their living location, child’s support needs, and language and cultural identity considerations. Caregivers involved in the network also have access to training; support from bilingual and bicultural network staff in English, Spanish, Portuguese, Korean, Chinese, and Haitian-Creole; discussion forums; and multiple compensation options, including bartering.
Adjusting rates for respite service providers
As with other types of direct care, respite can be challenging for families to access given the significant workforce shortages. Increasing reimbursement rates can incentivize providers to deliver respite services, which can help expand and sustain respite service availability. Illinois and West Virginia increased their reimbursement rates to expand access to respite services for children and youth.
Illinois increased its reimbursement rates specifically to expand access to respite for people enrolled in the 1915(c) MFTD waiver in January 2024. This includes an increase of 20 percent for respite nursing provided by RNs and LPNs and respite services provided by certified nursing assistants (CNAs). This resulted in an increase from:
- $45 to $54 per hour for RNs
- $37.50 to $45 per hour for LPNs
- $25 to $30 per hour for CNAs
Illinois also increased rates for out-of-home respite services provided through the state’s CCBHCC Model by 20 percent, from $45 to $54 per hour.
During the COVID-19 PHE, many states used increased HCBS funding from the American Rescue Plan Act to support children and youth, including by increasing provider reimbursement rates.[17] In West Virginia, the state Medicaid agency required 85 percent of the American Rescue Plan-funded HCBS increases to be passed on to direct care workers through wages, bonuses, and other incentives. The state made these rate increases permanent following the end of the PHE. The state has also implemented a 50 percent rate increase for in-home respite services for some sites and for families experiencing a crisis.
Summary
State approaches to designing and implementing Medicaid-covered respite for children and youth vary across states, and many states are interested in opportunities to improve access to respite services. This brief highlights key insights on strategies a few states are using to cover and deliver respite care for children and youth with chronic and complex needs through Medicaid. States looking to improve access to respite for children and youth and their caregivers can consider adopting strategies described in this brief. These strategies include those designed to enhance coverage of respite services for children and youth, expand the respite provider workforce, and collaboratively design and implement respite services for children and youth. As states continue to consider improvements to HCBS for children and youth, expanding access and quality of respite is a key focus area.
Acknowledgments
Several NASHP staff contributed to this brief through input, guidance, or draft review, including Karen VanLandeghem, Heather Smith, Zack Gould, Wendy Fox-Grage, Kimberly Hodges, Neva Kaye, and Hemi Tewarson. NASHP wishes to thank the state officials and the ARCH National Respite Network and Resource Center for their review of this brief.
This project is supported by Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $942,520, with 75 percent funded by ACL/HHS and $312,845 and 25 percent funded by non-government source(s). The contents are those of the authors and do not necessarily represent the official views of, nor are an endorsement, by ACL/HHS or the U.S. government.
NASHP would also like to thank The John A. Hartford Foundation for providing the non-government matching funds for this project.
Appendix
This appendix serves as a fact sheet on each state’s Medicaid respite services.
Illinois
In Illinois, four 1915(c) home- and community-based services (HCBS) waivers and one 1915(i) state plan amendment (SPA) cover respite services for children and youth. The state also has a second pending 1915(i) SPA that covers respite services for children and youth that was submitted to the Centers for Medicare and Medicaid Services in March 2024. Illinois has employed several strategies to support respite services for children and youth with chronic and complex needs, including:
- Covering children and youth with various chronic and complex conditions
- Offering multiple types of respite, including respite nursing for children and youth enrolled in the 1915(c) Medically Fragile, Technology Dependent (MFTD) waiver, who require a higher level of care
- Implementing the Children’s Community-Based Health Care Center (CCBHCC) model to provide out-of-home respite services specifically for children and youth with chronic and complex conditions
- Offering self-directed respite services for children and youth
- Allowing relatives to provide respite services children and youth enrolled in 1915(c) waivers, including legal guardians and legally responsible relatives for those enrolled in the 1915(c) MFTD waiver if they are registered nurses (RNs) or licensed practical nurse (LPNs)
- Implementing reimbursement rate increases to expand access to respite for individuals enrolled in the 1915(c) MFTD waiver, including out-of-home respite provided through CCBHCCs.
Vermont
Vermont covers respite services for children and youth through its 1115 Demonstration Waiver. Vermont has employed several strategies to support respite services for children and youth with chronic and complex needs, including:
- Aligning language for its Family Managed Respite Program, administered by the state aging and disability agency, with the state’s Title V Children and Youth with Special Health Care Needs program, administered by the state public health agency
- Covering children and youth with various chronic and complex conditions
- Offering multiple types of respite, including “skilled respite” for children and youth in the Pediatric Palliative Care Program (PPCP), who require a higher level of care
- Implementing a child- and family-centered self-directed respite program, family-managed respite
- Sharing promising practices for engaging respite providers across local contracted agencies that are responsible for local planning and service coordination to ensure that needed services are available
West Virginia
West Virginia covers respite services through two 1915(c) HCBS waivers. West Virginia has employed several strategies to support respite services for children and youth with chronic and complex needs, including:
- Engaging families and providers through the state’s Kids Thrive Collaborative to design and implement the 1915(c) Children with Serious Emotional Disorders (CSED) Waiver, including respite services
- Including non-medical transportation as a 1915(c) CSED waiver service, which can enhance the provision of respite
- Supporting out-of-home respite through therapeutic foster care homes
- Conducting strategic outreach in partnership with West Virginia University to provide education to families about the state’s 1915(c) CSED waiver, including services available and how to enroll
- Providing training to family caregivers of children who were enrolled in the 1915(c) CSED waiver program to become respite providers
- Increasing rates for in-home respite by 50 percent
Notes
[1] National Academy for State Health Policy. “National Care Coordination Standards for Children and Youth with Special Health Care Needs.” Washington, DC, National Academy for State Health Policy, October 2020. https://nashp.org/national-care-coordination-standards-for-children-and-youth-with-special-health-care-needs/
[2] Romley JA, et al. “Family-Provided Health Care for Children with Special Health Care Needs,” Pediatrics, 2017. DOI: 10.1542/peds.2016-1287
[3] Auerbach, E, Perry, H, & Chafouleas, SM. “Stress: Family caregivers of children with disabilities.” Storrs, CT: UConn Collaboratory on School and Child Health, November 2019. https://csch.uconn.edu/wp-content/uploads/sites/2206/2019/11/CSCH-Brief-Caregiver-Stress-November-2019.pdf
[4] Edelstein, H., Schippke, J., Sheffe, S., Kingsnorth, S. “Children with medical complexity: a scoping review of interventions to support caregiver stress,” Child Care, Health and Development, 43(3): 323-333, 2017, https://archrespite.org/bibliography/children-with-medical-complexity-a-scoping-review-of-interventions-to-support-caregiver-stress/
[5] Suzuki, S., Kamibeppu, K. “Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation,” Journal of Pediatric Nursing, Nov-Dec 2022. DOI: 10.1016/j.pedn.2022.07.009
[6] Centers for Medicare & Medicaid Services. “Alternatives to Psychiatric Residential Treatment Facilities,” Accessed May 2024. www.medicaid.gov/medicaid/long-term-services-supports/alternatives-psychiatric-residential-treatment-facilities
[7] English, K., Lieman, R.B., Fields, S., Schober, M. “Services in Support of Community Living for Youths with Serious Behavioral Health Challenges: Respite Care.” The TA Network, 2017. www.pacarepartnership.org/uploads/TA_Network_RespiteBrief-2017-v2.pdf
[8] Hirt, E., et al. “Fitting the Pieces Together: The Experiences of Caregivers of Children with Medical Complexity,” Hospital Pediatrics 13(12): 1056-1066, 2023. https://doi.org/10.1542/hpeds.2022-007112
[9] Williams, E, Musumeci, M. “Children with Special Health Care Needs: Coverage, Affordability, and HCBS Access.” San Francisco, CA, Kaiser Family Foundation, October 4, 2021. www.kff.org/medicaid/issue-brief/children-with-special-health-care-needs-coverage-affordability-and-hcbs-access/
[10] Randi, O, Girmash, E, Honsberger, K. “State Approaches to Reimbursing Caregivers of Children and Youth with Special Health Care Needs through Medicaid.” Washington, DC, National Academy for State Health Policy, January 2021, https://nashp.org/state-approaches-to-reimbursing-family-caregivers-of-children-and-youth-with-special-health-care-needs-through-medicaid/
[11] “50-State Scan of Medicaid Reimbursement of Respite Services for Children.” Washington, DC, National Academy for State Health Policy, June 2022. https://eadn-wc03-8290287.nxedge.io/wp-content/uploads/2022/12/CYSHCN-Respite-Scan-Final.pdf
[12]
“50-State Scan of Medicaid Reimbursement of Respite Services for Children.” Washington, DC, National Academy for State Health Policy, June 2022. https://eadn-wc03-8290287.nxedge.io/wp-content/uploads/2022/12/CYSHCN-Respite-Scan-Final.pdf
Ibid.
“50-State Scan of Medicaid Reimbursement of Respite Services for Children.” Washington, DC, National Academy for State Health Policy, June 2022. https://eadn-wc03-8290287.nxedge.io/wp-content/uploads/2022/12/CYSHCN-Respite-Scan-Final.pdf
[14] Centers for Medicare and Medicaid Services. “Unwinding Home and Community-Based Services (HCBS) Public Health Emergency (PHE) Flexibilities.” February 8, 2023. https://www.medicaid.gov/home-community-based-services/downloads/unwind-hcbs-phe-flexbles-feb2023.pdf
[15] Burns, A., Mohamed, M., Watts, M.O. “Pandemic-Era Changes to Medicaid Home- and Community-Based Services (HCBS): A Closer Look at Family Caregiver Policies.” San Francisco, CA, Kaiser Family Foundation, September 19, 2023. https://www.kff.org/report-section/pandemic-era-changes-to-medicaid-home-and-community-based-services-hcbs-a-closer-look-at-family-caregiver-policies-appendix-tables/
[16] For more information on intensive care coordination using High-Fidelity Wraparound, see the Administration for Children and Families’ Title IV-E Prevention Services Clearinghouse at https://preventionservices.acf.hhs.gov/programs/660/show, and the Substance Abuse and Mental Health Services Administration’s state and community profiles at https://www.samhsa.gov/resource/ebp/intensive-care-coordination-children-youth-complex-mental-substance-use-disorders.
[17] Gould, Z., Honsberger, K. “Expanded Federal Investment in Home and Community-Based Services: State Approaches to Serve Children and Youth.” Washington, DC, National Academy for State Health Policy, July 22, 2022. https://nashp.org/expanded-federal-investment-in-home-and-community-based-services-state-approaches-to-serve-children-and-youth/
