As previously stated, 1915(b) waivers waive freedom of choice. This freedom is built into the early framework of Medicaid law where the intent is for beneficiaries to have sufficient choice among providers. Restricting this choice typically involves obtaining a waiver.

West Virginia has created a Specialized Plan for Children and Youth, called Mountain Health Promise where a single MCO coordinates services for children in foster care.

Michigan developed a Healthy Kids Dental program to improve access to dental services for all Medicaid enrolled children in the state, including CYSHCN. This program was originally limited to one contractor (hence the need for a 1915(b) waiver) but has now expanded to two.

Connecticut uses its 1915(b) waiver to target providers of Early Intervention Services (EIS) selectively contracted through the Office of Early Childhood (OEC). For infants and toddlers with developmental delays and disabilities, the program minimizes developmental delays and prevents institutionalization through home and community-based services, including evaluation, assessment, Individualized Family Service Plans (IFSPs), early intervention services, and service coordination. The OEC contracts with highly qualified EIS programs and determines the towns that each contractor will serve.  This assures choice for families and also limits the number of EIS programs in each town so that EIS programs can maintain high enough caseloads to be cost efficient and so that EIS providers will stay current with the many requirements of providing this federal entitlement.

Medicaid 1915(c) waivers, also known as Home and Community Based Services (HCBS) waivers, allow states to provide home- and community-based services to children who otherwise would be eligible for Medicaid only if they resided in an institution In addition to serving as a pathway to Medicaid coverage, HCBS waivers may cover benefits such as respite, home or vehicle modifications, habilitative services, or medical day care. These programs serve a variety of targeted populations groups, such as people with intellectual or developmental disabilities, physical disabilities, and/or mental illnesses. States can limit the number of waiver slots available, which often results in waiting lists.

Nevada’s Waiver for Individuals with Intellectual Disabilities and Related Conditions provides job and day training services, residential support services, nursing services, and nutrition counseling, among other services, to enrollees of all ages who have a documented intellectual disability or related condition, such as autism or Down Syndrome. The state’s Waiver for Persons with Physical Disabilities provides services including case management, homemaker services, respite, environmental accessibility adaptations, home delivered meals, and specialized medical equipment and supplies to people of all ages who have a physical disability.

The Maryland Family Supports Waiver provides various support services to children ages 0 to 21 and their families. Services covered under the waiver include assistive technology and related services, respite care, environmental assessment, environmental modifications, vehicle modifications, case management, family education and training, and many others. A coordinator works with families to assess needs and identify the most appropriate support services.

Illinois’ Support Waiver for Children and Young Adults with Developmental Disabilities provides training and counseling services for unpaid caregivers and other HCBS services for individuals ages 3 to 21 with autism, intellectual disabilities, or developmental disabilities. The state also has three other 1915(c) waivers that serve children and provide different packages of services depending on enrollee needs.

Where there is a desire to combine choice restrictions with home and community-based services, some states combine the elements of these two waivers. Frequently, the purpose is to enable a single, well established, specialized provider system to be the single entity delivering care coordination and other c-b support services.

Wisconsin’s 1915(b) waiver enables the state’s local county human services departments and tribal waiver agencies to be the sole providers of Support and Service Coordination as part of the state’s 1915(c) waiver that serves children from birth to 22 years of age. As part of Support and Service Coordination, county agencies develop Individual Service Plans in partnership with children and their families to identify and prior authorize appropriate waiver services. County agencies were selected to provide Support and Service Coordination due to their position within governmental infrastructure, knowledge and familiarity with local resources, and proximity to participants and providers to arrange and monitor approved services and supports.

Similar to Wisconsin, Minnesota uses a 1915(b) waiver to allow counties and federally recognized tribes who contract with the state’s Medicaid agency to be the sole providers of case management for individuals enrolled in 1915(c) Home and Community Based Services programs, including the Developmental Disabilities Waiver, Elderly Waiver, Community Access for Disability Inclusion Waiver, Brain Injury Waiver, and Community Alternative Care Waiver. While county and tribal entities serve as lead agencies for case management and administrative activities associated with the 1915(c) programs, these entities are permitted to contract with multiple case management providers, and must provide enrollees with a different case manager upon request.

Section 1115 waivers allow states to implement experimental, pilot, or demonstration projects in their Medicaid programs, subject to approval by the Secretary of Health and Human Services. These projects must align with the objectives of Medicaid and must be “budget neutral,” which means that they will not cost the Federal government more than if the waiver were not approved. These waivers are generally approved for an initial five-year period and can be extended for an additional three to five years.

In 2018, Illinois’ Behavioral Health Transformation Demonstration 1115 Waiver was approved. In addition to services for adults, this waiver authorizes Intensive In-Home Clinical and Support services to support and stabilize children and youth with behavioral health conditions in their homes or home-like settings. This strengths-based, individualized therapeutic service focuses on symptom reduction and provides support for the client and their family members.

In October 2022, the Centers for Medicare & Medicaid services approved an 1115 Demonstration Waiver for the state of Oregon. Under this waiver, The Oregon Health Authority will provide continuous eligibility for children up to age six, and two-year continuous eligibility for all people over age six. Continuous eligibility can assist in avoiding lapses in health insurance coverage, which, for CYSHCN, can result in forgone medical care, unmet health needs, and family financial hardship.

In January 2022, California began implementing its California Advancing and Innovating Medi-Cal (CalAIM) 1115 waiver. This update to a previous 1115 waiver includes the addition of enhanced case management for enrollees with complex health needs and benefits for community supports. These community supports, also referred to as “in-lieu-of services,” address social determinants of health, and include housing supports, respite care, and medically supportive foods. Medicaid managed care plans are encouraged, but not required, to provide as many of the approved community supports as possible.

Massachusetts’ MassHealth Section 1115 Waiver, approved in September 2022, aims to expand value-based payment systems and address enrollees’ health related social needs. Under this waiver, Accountable Care Organizations (ACOs) and ACO-participating hospitals are required to collect data on and address health inequities. The existing Flexible Services and Community Supports Programs will be expanded to address nutrition and housing needs.

Parent to Parent of Georgia, Georgia’s Family-to-Family Health Information Center, engages families of transition-age youth during “Waiver Bees” held by school districts. During the waiver bee, Parent to Parent representatives educate family members about Home and Community Based Services waivers that their children may be eligible for upon graduating high school and provide tips for applying. Prior to the waiver bee, the school prepares necessary documents for attendees, and the family members can fill out waiver applications at the event with the assistance of an intake coordinator.

In 2020, Hawaii’s Family Voices affiliate, Hilopa’a Family to Family, began holding Welcome to the Waiver sessions for families newly enrolled in HCBS waivers. During these sessions, Hilopa’a staff orient families to the waiver program and familiarize them with terminology used in the program.

Family Voices of Tennessee maintains three Facebook groups for families with children and youth enrolled in HCBS waivers. The groups are tailored for different geographic regions in the state, as each region has different Managed Care Organizations and cultures.

Waiver administrators in North Dakota developed “cheat sheets” for each of the waivers that include eligibility criteria, services available through the waiver program, and the point of contact for the waiver program. These cheat sheets assist Title V care coordinators in referring families to waiver programs and assisting them with applications.

In Vermont, HCBS waivers are administered by the Department on Aging and Independent Living (DAIL), which Title V partners closely with. When DAIL is determining waiver eligibility for a child who receives Medicaid-funded personal care or high-tech nursing services that are administered through Title V, waiver program staff meet with Title V staff to explore waiver options and assess the benefit of waiver enrollment for the family.

In addition to accessing Medicaid coverage through 1915(c) waivers, children who require an institutional level of care can become eligible for Medicaid through the TEFRA state plan option (named for The Tax Equity and Fiscal Responsibility Act of 1982 that created this option).

These two options are similar in some ways, but also have substantial differences. See a comparison of the TEFRA state plan option and 1915 Home- and Community-Based Services Waivers in the chart below.

¹ Semansky, R. M., & Koyanagi, C. (2004). The TEFRA Medicaid Eligibility Option for Children With Severe Disabilities: A National Study. The Journal of Behavioral Health Services & Research, 31(3), 334–342.

² Smith, G., O’Keefe, J., Carpenter, L., Doty, P., Gavin, K., Burwell, B., & Williams, L. (2000). Understanding Medicaid home and community services: A primer. https://aspe.hhs.gov/reports/understanding-medicaid-home-community-services-primer-0#noteC1-25

³ Mahan, D. (2012). State plan amendments and waivers: How states can change their Medicaid programs. https://www.sfdph.org/dph/files/CBHSdocs/QM2017/4Families-USA-IssueBrief2012StatePlanAmendmentsWaivers.pdf

⁴ Ghandour, R. M., Comeau, M., Tobias, C., Dworetzky, B., Hamershock, R., Honberg, L., Mann, M. Y., & Bachman, S. S. (In press). Assuring adequate health insurance for children with special health care needs: Progress from 2001 to 2009- 2010. Academic Pediatrics, 1-10. https://pubmed.ncbi.nlm.nih.gov/25864809/