Change law/regulations to support a series of pilot projects based on self-determination principles: (1) freedom to decide what services and supports make sense; (2) individual (or small group) budgets; (3) management of resources by the individual or family, sometimes with the help of others (e.g., circle of friends, agent or broker, personal advocate); with (4) business assistance and support, as needed, in areas such as payroll, bookkeeping, and insurance.

*There are my personal views. For additional information, the reader may contact me at Allen, Shea & Associates, 1780 Third Street, Napa, CA 94559. Ph: (707) 258-1326. Fax: (707) 258-8354. Email: <asa@napanet.net>.

Background

Around the country, there is growing interest in self-determination. Rather than funders purchasing services from established, typically full-service programs and negotiating details with the service provider, (1) a budget is established for each individual, based on general level of need (or existing outlays); (2) the individual and/or family is given authority and responsibility for deciding how the budget will be used to meet the person's needs; (3) some of the budget may be used to hire an agent or service broker/coordinator, if needed and wanted; and (4) certain supportive business and related services (e.g., information, payroll, insurance, bookkeeping, back-up personal assistance, etc.) are available, as needed.

There are several reasons for focusing on self-determination: (1) growing interest in person- and family-centered planning and responsive services; (2) breaking down barriers to inclusion and community participation; (3) the high cost of professional services; (4) the need (and desire) for greater self-reliance; (5) inflexibility and slowness within the present system; (6) role confusion among case managers who serve as both gate-keepers and helpers; (7) the shift in thinking from a medical model (cure, treatment) to a support paradigm (e.g., personal assistance); and (8) a shift in public policy toward managed care.

It is likely that capitated payment schemes (with service access managed by professionals) will increasingly displace fee-for-service arrangements under managed care, unless a third option is pursued. The third option is participant-driven managed supports (1), using family allowances, individual budgets, vouchers, debit cards, or similar devices within the context of key decisions being made by the family of a disabled child or by the adult with a disability, sometimes with the help of the person's personal advocate or circle-of-friends.

Pursuit of this third option is by no means new. Over twenty States have family allowance plans (2). Service brokerage with individual budgets has been pioneered by the Community Living Society in Canada (3). The values of interdependence, inclusion, empowerment, and choice have come to the fore. The Robert Wood Johnson Foundation is sponsoring self-determination, systems change projects around the country. In the United Kingdom, The Community Care Act of 1966 authorizes Direct Payments as an option to arranging services for the person, if the person's assessed needs can be met as well or better in this way (4).

In California, parent vendorization (especially for respite) is a reality, along with the option of consumer/family vendorization for supported living services. In-Home Supportive Services (IHSS) is handled principally through the independent provider mode, with the person with a disability (sometimes with the assistance of others) responsible for recruiting, hiring, and directing his or her own personal services.

The Opportunity

There are additional opportunities for greater self-determination in the management of services and supports. Here are a few:

Roles and Payment Arrangements

Extension of parent vendorization to encompass a broad array of services and supports (e.g., respite; behavior management; camp; supplies; after-school care; speech and other therapies).

Use of a Direct Payment option, where needs identified in a team-designed Individual Program Plan (IPP) can be met as effectively and as efficiently in this way as by a traditional Purchase Authorization between the regional center and a service provider.

Individual (or small group) control over individual budgets based on assessed needs (and/or existing resource use), with individuals and families -- with or without the aid of others -- determining how the money will be used (i.e., what supports and services, from whom). Checking accounts, cash, vouchers, and debit cards are possible tools.

Roles and Organizational Arrangements

Use of alternatives to traditional case management, such as employment of an agent, service broker, or support coordinator -- a case manager-type person who assists the person or family in getting their needs met effectively and efficiently, after an individual budget has been determined by someone else in the gate-keeping role.

The adult with a disability, with or without the help of a personal advocate or circle of support, managing his or her personal budget; recruiting, hiring, and directing services; and otherwise managing his or her supports.

Parents of disabled children, or adults, arranging for needed business services (e.g., payroll, bookkeeping, insurance, benefit packages, sometimes back-up personal assistance) through (1) a service brokerage; (2) a Family Resource Center; (3) an existing provider (e.g., UCPA or ARC unit); or (4) some other entity, such as a business services firm.

Recommendation

California is a very large, diverse State. Hence, it would be wise to have several self-determination pilots to explore creative ways of improving the lives of families of children who have developmental special needs, and the lives of adults with such needs, by building partnerships (e.g., with natural supports) and emphasizing efficient use of public resources. A variety of pilots should be encouraged.

Priority should be given to proposals that evidence practices consistent with principles of (1) individual and family authority in decision-making; (2) honest use of techniques of person-centered, and group action planning (where appropriate); (3) full information, informed choice, and attention to wise use of public funds (e.g., skills in recruitment, direction, and evaluation of personal assistance); (4) responsibility of the service user (e.g., seeking valued roles; accountability for performance and use of funds); (5) practices that encourage some self-help (5); and (6) better outcomes at equal or lesser public cost.

FOOTNOTES

1. Human Services Research Institute, Participant-Driven Managed Supports: A Handbook on Applying Managed Care Strategies to Developmental Disability Services (Cambridge, MA: HSRI, April 1997), and John Agosta and Madeleine Kimmich, Managing Our Own Supports: A Primer on Participant-Driven Managed Supports (Alexandria VA: National Association of State Directors of Developmental Disabilities Services, March 1997).

2. John Agosta and K. Melda, Results of a National Survey of Family Support Programs for People with Disabilities and Their Families (Salem, OR: HSRI, 1995).

3. See The G. Allan Roeher Institute, The Power to Choose: An Examination of Service Brokerage and Individualized Funding as Implemented by the Community Living Society (North York, Ontario: The Institute, 1990).

4. Andrew Holman & Jean Collins, Funding Freedom: A Guide to Direct Payments for People with Learning Disabilities (London: Values into Action, 1997).

5. Possibilities include but are by no means limited to child-care and incidental transportation by coop members; parent/consumer peer counseling; job sharing in supported or competitive employment; and other self-help activities.