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,
*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:
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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.
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
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
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.
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.
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.