A POSITION STATEMENT ON MANAGED CARE
AND LONG-TERM SUPPORTS
IN DEVELOPMENTAL DISABILITIES
Developed by the Center on Human Policy at Syracuse University
In the past decade, the field of developmental disabilities has witnessed
the emergence of innovative and responsive approaches to supporting people
in the community. Family support, supported living, person-directed support services, supported work, and
home ownership have become realities for an increasing number of people
and their families. Yet public policies and
funding mechanisms have often limited the development of these effective
forms of assistance. Major sources of funding for developmental disability
services have discouraged the
development of flexible services and have only recently been used by some
states to fund more responsive supports. New health care policies--most
notably, the concept of "managed care"--will
present new challenges and opportunities.
Managed care refers to administrative controls over the use and costs
of services. Managed care approaches are increasingly used to coordinate
the delivery of health-related services and
short-term medical care. In medicine and health care policy, opinions about
managed care remain divided. Some observers believe that managed care holds
promise for resolving quality and
access problems and controlling the spiralling costs of medical and related
services. Others have expressed concerns that managed care shifts decision-making
from the local level to
remote and impersonal organizations, creates significant access problems
for persons with complex and significant needs, and contains inadequate
Since many states are moving rapidly to enroll people with developmental
disabilities in managed care plans for long-term services and since this
approach is largely untested in this
area, it is imperative to define the principles and values that must underlie
managed care in developmental disabilities.
Families of children with developmental disabilities should receive the
services necessary to maintain their sons and daughters at home.
Families of children with developmental disabilities should have maximum
choice over the nature and types of home and community-based services provided
People with developmental disabilities should be able to exercise the same
degree of choice about where and with whom to live as nondisabled persons
in American society.
Adults with developmental disabilities--with the support of guardians, in
exceptional circumstances--should be able to select the agencies or individuals
from whom they will receive support.
Adults with developmental disabilities should receive supports and services
based on their individual preferences and choices.
People with developmental disabilities should have the same opportunities
as other American citizens to have homes of their own, meaningful work,
and fulfilling personal life styles.
People with developmental disabilities, family members, and advocates must
be centrally involved in decision-making and planning regarding the administration
Decisions regarding services and support for specific adults and children
with developmental disabilities, or their families, should be made as close
as possible to the people being served
and, specifically, in the communities in which they live.
Unmet needs for services for people with developmental disabilities and
their families exist in virtually every state and community.
Neither public bureaucracies nor large private corporations have demonstrated
widespread success in administering local services responsive to individual
Operators of congregate settings and agency facilities have not produced
evidence to demonstrate their cost-effectiveness or superiority in the quality
and responsiveness of their services.
People with developmental disabilities and their families are not commodities,
and organizations must not be permitted to realize unreasonable benefits
from addressing their needs.
The effectiveness of managed care or health care organizations in administering
long-term supports and services for people with developmental disabilities
and their families has not been demonstrated.
THEREFORE, WE, as representatives of associations or as individuals, endorse
the following principles if and when managed care is implemented:
Managed care must not be used to limit the supports and services people
with developmental disabilities need to live successfully in the community.
Managed care should discourage placement in congregate facilities and encourage
services that support people with developmental disabilities to live in
their own homes and to participate in the everyday life of their communities
as citizens, workers, and students.
Managed care must be administered in a manner that permits decisions regarding
allowable services to be made in local communities and by people knowledgeable
about and chosen by the specific individuals to be served.
Among the options available through managed care must be subsidies and individual
financing options that enable people with developmental disabilities or
their families to purchase services from either certified agencies, generic
service providers, or private individuals.
People with developmental disabilities and their families must have access
to due process protections and responsive consumer safeguards to challenge
decisions regarding allowable services.
Funding for services under managed care must be sufficient to support people
with the most intensive needs to live in the community.
Cost savings realized through the more efficient administration of services
must be committed, first, to addressing unmet needs for long-term support
of people with developmental disabilities and their families.
Managed care organizations must be evaluated by their interest in and commitment
to the communities they serve and their sensitivity to the racial and cultural
heritage of members of those communities.
People with developmental disabilities, their family members, and advocates
must be involved in all planning and decision-making regarding the implementation
of managed care.
Proponents of managed care must demonstrate the benefits of this approach
in terms of accessibility, quality, and responsiveness of services and the
achievement of cost-containment goals.
Developed by the Center on Human Policy at Syracuse University, Putting
People First, a national project funded by the Robert Wood Johnson Foundation
and the Institute on Disability at the
University of New Hampshire, and Responsive Systems Associates, 1996.
Please feel free to reproduce this statement. This statement is available
in Braille, large type, audio cassette, or
computer disk upon request.
* * * * * * * * * * * *
Individuals and associations are invited to endorse this position statement
on managed care and developmental disabilities. Please send your endorsement
to Steve Taylor, Director, Center on Human Policy, Syracuse University,
805 South Crouse Avenue, Syracuse, NY 13244-2280. Copies of the statement
and a list of supporters are available from the Center on Human Policy.
Rachael A. Zubal email@example.com
Information Coordinator firstname.lastname@example.org
Center on Human Policy 315-443-2761
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