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. Given these significant responsibilities, these family caregivers report higher levels of physical and emotional stress and financial strain compared to other families.
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 and help improve outcomes, including promoting more stable living situations. Despite these positive impacts, caregivers of children with chronic and complex needs report that respite is not sufficiently available. Because Medicaid and the Children’s Health Insurance Program (CHIP) cover 44 percent of this population, 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.
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.
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.