Consumer/Family Directed Care Models
Acute and behavioral health care, as a general rule, is provided by licensed clinicians. In the area of long-term care and support, however, programs have begun to offer much broader latitude for family choice and control.
Most long-term care services for CYSHCN are funded through Medicaid waivers, although some states cover services, such as personal care assistance, through their state Medicaid plans or through EPSDT. A few states have implemented programs that allow families wide-ranging choice in the selection and direction of long-term support services for their CYSHCN.
Florida was one of the first states to implement a Cash and Counseling Demonstration waiver, and is the only one to extend the benefits of consumer-direction (as it is known in the adult world) to families of children with developmental disabilities.
Alabama Medicaid’s “Personal Choices” program allows individuals from select counties, including children, who are enrolled in home and community based waiver programs, to receive a monthly allowance from which they determine what services they need. They may choose to hire someone to help with their care, or they may save money for equipment purchases. Financial counselors are available to guide them through the process, which includes developing a budget to help manage the funds designated for their care.
Virginia operates a consumer-directed care waiver, primarily for adults with disabilities, but which also includes some children with disabilities.
Massachusetts covers consumer-directed personal assistance as a state plan service and makes these services available for children with disabilities.
