Using Medicaid to Support Working Age Adults with Serious Mental Illnesses in the Community: A Handbook. Consumer-Directed Services


The principals of recovery are reshaping services for individuals with serious mental illnesses by emphasizing consumer choice and empowerment. State community mental health policies, including those that apply to Medicaid services, increasingly embody these principles. Peer support and peer-run services are becoming more commonplace, thereby affording adults with serious mental illnesses more opportunities to both take charge of their own recovery and support other individuals in their recovery.

More broadly, services for people with disabilities are in the initial stages of a major transformation toward a system that allows progressively greater numbers of individuals to take direct control of their services. For example, consumer-directed personal assistance services (CD-PAS) are designed so that people with disabilities can directly hire, train, supervise, and fire the workers who support them. Many states have incorporated CD-PAS into their Medicaid programs, either for Medicaid state plan personal care/assistance services or in their HCBS waiver programs. In the arena of developmental disabilities services, the principles of self-determination have prompted states to create new options for individuals and families to manage service dollars directly, including making decisions about what to buy and from whom.

Federal Medicaid policy is increasingly accommodating consumer-directed services. During the 1990s, CMS sponsored “cash and counseling” 1115 demonstration waiver projects that enabled states (AR, FL and NJ) to test allowing Medicaid beneficiaries to take control of their personal assistance dollars by becoming the direct employer of their support workers and/or using these dollars to purchase other goods and services needed to remain in the community.15 Due in part to the success of these projects, in 2002 CMS issued “Independence Plus” waiver templates to facilitate states obtaining necessary waivers so that individuals could have the option of directing and managing their own Medicaid-funded services.16

CMS released two templates: (a) a 1915(c) waiver template for states that want to implement consumer direction under the HCBS waiver authority, and (b) an 1115 demonstration waiver template for states that want to implement consumer direction for Medicaid state plan services and/or a combination of state plan and HCBS waiver services. The 1115 template is also designed to facilitate the implementation of consumer direction across multiple beneficiary target populations. Both waiver authorities permit states to assign Medicaid service dollars to “individual budgets” for beneficiaries to directly purchase services identified in a person-centered plan. States may support beneficiaries in managing the individual budget and their services by providing for (a) “financial management services” to position the beneficiary to be the direct, supervising employer of their support workers as well as handle the disbursement of funds to purchase other consumer-designated goods and services, and (b) “support brokerage” to aid the beneficiary (as necessary) to manage their services and access other supports.

Consumer-directed services are closely identified with long-term community services and supports for individuals with physical and developmental disabilities. State-operated CD-PAS programs provided the foundation for the adoption of consumer direction in Medicaid state plan personal assistance programs and HCBS waiver programs. To date, there has been less activity in translating consumer-directed models or approaches into mental health services for working age adults with serious mental illnesses; although there clearly is mounting interest among consumer/ survivor groups and others in exploring this new approach. Through the President’s New Freedom Initiative, CMS and SAMHSA are working with constituent representatives on how a consumer self-direction initiative can be configured for individuals with mental disorders.17 Consumer-directed models embody recovery’s choice and empowerment principals but go a step further by giving individuals the explicit authority to directly manage their own services and resources.

A few states have taken steps to introduce consumer-directed models into community mental health services. In 2003, the Michigan Department of Community Health promulgated a systemwide self-determination policy and practice guideline that encourages the use of consumer-directed arrangements throughout its community mental health system. The guideline spans services for individuals with mental ill-nesses and developmental disabilities (including Medicaid services funded through Michigan’s 1915b/c waiver program).18 In October 2002, Florida launched an innovative program to pilot self-directed care for persons with severe and persistent mental illness. This program (described below) is firmly anchored in recovery principles.

So far, no state has used the Independence Plus templates as a vehicle to implement consumer--directed mental health services that provides for direct consumer management of Medicaid service dollars. Because coverage of mental health services falls largely under the Medicaid state plan (as opposed to HCBS waiver programs), the implementation of consumer-directed mental health services (including use of an individual budget and the authority to move money from one service to another) would likely require an 1115 waiver, or provide for such services as an alternate service delivery mechanism under a 1915(b) waiver program (as Michigan has done).

Florida’s Adult Mental Health Self-Directed Care Program19
In October 2002, Florida implemented the Adult Mental Health Self-Directed Care Program on a pilot basis in the Jacksonville area. The impetus for launching this program came from consumers and NAMI affiliates interested in employing a “Money Follows the Client” service model. In 2001, a task force issued a report that described the program’s design and a business plan for a pilot self-directed care program for persons with severe and persistent mental illnesses. The design benefited from Florida’s experience with self-directed services for people with developmental disabilities. That same year, the legislature approved implementation of the pilot program. Under the pilot, 100 adults with severe and persistent mental illness can opt to self-direct their own services. The Florida Mental Health Institute is conducting an independent evaluation of the pilot. Depending on the results of the evaluation, the pilot program may be continued and/or expanded to other areas in Florida.

The program’s goal is to support individuals to take more personal control of their recovery by becoming more active in the treatment and recovery process. In order to participate in the program, individuals “must be able and willing to define their own personal recovery goals, choose appropriate services, select providers, and take responsibility for personal progress.” Individuals transfer from the “case management-based service delivery system” into the self-directed care program and may transfer back to the conventional system if self-directed care does not work out for them.

In lieu of case management, individuals may voluntarily elect to receive assistance in managing their services by a recovery or a recovering coach. Individuals are assigned a dollar budget and direct the purchase of services in accordance with their recovery plan. There are a variety of self-directed care services, including supported employment, supportive housing/living, chore services, psychosocial education, psychotherapy, respite, and transportation. In addition, project participants continue to have access through the mainstream service delivery system to crisis support, emergency, residential, and other services. When needed, these services are paid for with service system dollars not through the participant’s individual budget. Self-directed care services may be obtained from mental health system providers or others, as identified by the person, who meet basic qualifications. The program is also encouraging the use of “preferred providers”--client-owned and operated businesses or client-operated services affiliated with a service provider. An Administrative Services Organization (ASO) is responsible for tracking the person’s budget and paying for services included in the individual’s recovery plan.

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