Partnering with Public Health: Funding and Advocacy Opportunities for
CILs and SILCs
2000
by Laura Rauscher
Access to quality health care has always been at the forefront of the
independent living (IL) and disability rights movements’ advocacy
agenda. Maintaining health and well-being is recognized as important to
achieving the goals of independent living. It is all too common that untreated
secondary health conditions--such as pressure sores, infections, and respiratory
conditions, as well as problems such as substance abuse, eating disorders,
and poor personal care--can be the undoing of a person’s hard won
independence. Without access to adequate health care and treatment programs,
IL consumers working toward independence can find themselves nearing the
end of a long road, only to have to begin again.
Advocates have worked tirelessly to improve the quality of medical care
and continue to fight for insurance coverage that allows people with disabilities
to get the primary and specialty care they need. Access to a high quality,
responsive, accessible, affordable health care system is a critical piece
of the health puzzle, but there is more. With advocacy efforts focused
on access to traditional health care, the importance of access to the
myriad of prevention and health promotion programs for people with disabilities
has not received sufficient attention. While preventive care is a component
of good individual health care, many prevention and health promotion programs
are offered outside the health care system. These programs are often funded
or run by state or county public health departments.
Public health departments of the past historically focused almost entirely
on tracking and preventing the spread of communicable diseases. Today’s
public health mission has been greatly expanded. Public health departments
have emerged as an important source of leadership and funding to address
a wide range of social, environmental and behavioral factors that can
compromise health. While emphasis varies from state to state, today’s
public health departments strive to address a broad range of health needs
among at-risk populations and employ a wide variety of strategies to keep
all citizens safe and healthy.
Traditional health care systems focus on individual health problems,
while public health looks at the health problems of whole communities
and specific at-risk populations. By taking this perspective, public health
can collect data and conduct research that leads to a better understanding
of health patterns and common problems among people with disabilities.
This approach leads to the understanding that people with disabilities
have the same health needs as everyone else, but that we are also a unique
population with unique health needs. Public health can then help to identify
and implement prevention and health promotion strategies that can reach
communities and at-risk populations such as the population of people with
disabilities within a state. The disability community needs to look more
closely at the role public health can and should play in addressing the
health concerns of people with disabilities. It is important that we learn
how to harness and direct the extensive resources the public health field
has to offer.
Over the past 10 years, promoting the health and well being of people
with disabilities has become an increasingly important and explicit goal
of the national Public Health Service. Specific funding, through the Public
Health Act, supports the Centers for Disease Control and Prevention’s
Office on Disability and Health. The Office on Disability and Health heads
a national program to improve the health and well-being of people with
disabilities by improving state and national data collection efforts,
supporting essential research on secondary health conditions, and funding
cooperative agreements with 14 state health departments for state-based
capacity building projects.
Funding from the Centers for Disease Control’s (CDC) Disability
and Health Program has given states the opportunity to create a point
of leadership within state government to begin specifically addressing
the health needs of people with disabilities. People with disabilities
are members of the “public,” and public health departments
are designed to serve all members of the public. As people with disabilities
move out of isolation and segregated service systems and become more visible
and active citizens in their communities, new demands are placed on health
departments to consider and address their emerging needs. Policy changes,
disability relevant research and the development of new community-based
strategies for promoting the health of people with disabilities have begun
to find their place on national and state public health agendas.
Much of this activity has been driven by the input of advisory committees
created by each state that receives CDC Office on Disability and Health
funding. These committees have included people with disabilities, community
leaders, medical professionals, CIL and SILC staff, representatives of
state agencies and others interested in working together for the health
of people with disabilities. People with disabilities have also been hired
in many states by the health departments as staff and consultants to provide
direction and implement the CDC funded programs. Some states have forged
alliances with individual centers for independent living and state independent
living councils to develop a useful conceptual framework for understanding
health and disability, advocate for appropriate state polices and programs
and implement strategies at the local level to promote health and prevent
secondary conditions. Some of the projects that resulted from alliances
that included CIL participation exemplify the possibilities for other
states:
- In Massachusetts, for example, five independent living centers received
between $15,000 and $50,000 in CDC funding through the Massachusetts
Department of Health’s Office on Health and Disability to conduct
“Access to Health” programs. The projects utilized the IL
model of peer counseling, information and referral, skill building and
individual and systems advocacy to specifically promote health among
people with disabilities. Massachusetts CILs also participated in a
health survey of 800 IL consumers conducted in collaboration with Boston
University. The survey focused on secondary health conditions and contributing
factors among people with disabilities. The CDC funding to the state
also provided the basis for leveraging additional state dollars from
tobacco, breast cancer and substance abuse funding to develop programs
for people with disabilities. Significant funding has also been committed
to conduct a state-wide comprehensive ADA compliance project for the
public health department’s 600-700 community vendors. CILs received
funding under this program to provide local ADA technical assistance.
- In Montana, Tom Seekins, Ph.D, at the University of Montana worked
with CILs there to develop a wellness curriculum for persons with physical
disabilities. The curriculum, “Living Well with a Disability,”
was delivered by community-based, consumer-controlled independent living
centers in Montana. Adults with spinal cord injuries participating in
the program experienced a 37 percent reduction in disability due to
secondary conditions and reduced physicians visits by 45 percent over
six months.
- In Ohio, money was used to develop a health education program by and
for women with disabilities that includes production and distribution
of a monthly consumer health newsletter.
- New Jersey held a statewide conference on secondary health conditions
and health promotion in cooperation with the CILs there.
- North Carolina has developed an access guide for health care facilities
in cooperation with the Center for Universal Design.
- Michigan used CDC conference grant money to hold a major national
conference on preventing secondary conditions and promoting health among
persons with disabilities.
Centers for independent living and statewide independent living councils
have an important stake in the future direction of this national effort
and should seriously consider getting involved in the activities within
their state health departments. In the spring of 2001, CDC will re-compete
the funding for the state-based programs. With many states already planning
for this next grant competition, it is timely for CILs and SILCs to get
informed, involved and excited about forging new alliances with their
health departments. Centers and SILCs can play an important role in shaping
the direction of these state-based projects. By getting involved now,
centers and SILCs can tap into an important source of funding to conduct
programs that promote the health of consumers. Center related projects
may be small at first, but over time CILs can influence the use of federal
and state public health resources in their communities.
Public health programs must assure that they are accessible to persons
with disabilities. They should also engage in planning, policy and program
development, conduct research and develop effective strategies to address
the unique health needs of the population of people with disabilities.
With CIL and SILC involvement in the upcoming grant application planning
process, these dollars can be better directed to strategies that address
the critical needs of consumers. This grant competition offers CILs and
SILCs another important and far reaching way to influence systems change
on behalf of disabled consumers.
People with disabilities have a right to achieve and maintain their maximum
level of health and well being and to live in safe, healthy and accessible
communities. Once again, CILs and SILCs have a chance to shape the future
by leading the way !
CILs and SILCs interested in getting involved in state and national efforts
related to health and disability, should contact their state health department
directly or go to the following helpful links:
Office of Disability
and Health Disability and Health Branch at CDC
Office of Disability and Health - State-based Cooperative Agreements www.cdc.gov/nceh/cddh/dh/scstates.htm
Office of Disability
and Health - Research Grants www.cdc.gov/nceh/cddh/dh/scres.htm
These sites contain a description of the national program, a list of the
14 currently funded states with individual project descriptions, a list
and description of the 11 currently funded university-based research projects,
and relevant state contact information.
CILs and SILCs can also contact the CDC directly at the following address,
phone, or fax:
Office of Disability and Health
Disability and Health Branch
Division of Birth Defects, Child Development, and Disability and Health
National Center for Environmental Health
Centers for Disease Control and Prevention
4770 Buford Highway MS F-35
Atlanta, Georgia 30341
Phone: 770.488.7080
FAX: 770.488.7075
The American Public Health Association
www.apha.org/
Homepage for APHA with information on mission, public health issues, annual
meeting and membership. APHA has a special interest group called the Disability
Forum, which sponsors many sessions on disability and health at the national
convention each year.
Healthy People 2010
www.health.gov/healthypeople
Healthy
People 2010 Section on Secondary Conditions in People with Disabilities
www.health.gov/healthypeople/Document/ HTML/Volume1/06Disability.htm
Healthy People 2010 is a national health promotion and disease prevention
initiative that brings together national, state and local government agencies;
nonprofit, voluntary and professional organizations; businesses; communities
and individuals to improve the health of all Americans, eliminate disparities
in health, and improve years and quality of healthy life. Healthy People
2010 establishes a ten year health agenda for the nation. For the first
time, Healthy People 2010 includes a section outlining specific objectives
for preventing secondary conditions and promoting the health of people
with disabilities.
Contact Information
Laura Rauscher
Disability Services Director
Smith College
College Hall Room - 3
Northampton, Massachusetts 01063
(413) 585-2071 (Voice)
(413) 585-2072 (TTY/TDD)
(413) 585-4498 (FAX)
About the Author
Laura Rauscher has been personally and professionally
involved in the disability rights and independent living field for over
20 years. Ms. Rauscher holds a bachelor’s degree in community services
and a master’s in social justice education/organizational development
from the University of Massachusetts, Amherst. Ms. Rauscher’s professional
experience at the state and national levels includes administration and
fiscal management; policy development and analysis; program design, planning,
implementation and evaluation; design and supervision of research studies;
and ADA/504 compliance monitoring in both the public and private sector.
Additionally, she has done individual and group counseling, led a variety
of community organizing, legislative, and advocacy efforts, and provided
training and consultation to businesses and organizations regarding issues
of disability, race, gender, and sexual orientation. Her work in disability
related curriculum and training design is published in the book “Teaching
for Diversity and Social Justice,” Rutledge, 1997.
Early in her professional career Ms. Rauscher worked in both urban and
rural CILs in Massachusetts, California, and Hawaii, where she held positions
in direct services, community advocacy, and program development related
to transportation, attendant care, housing, accessibility, special education
and mental health issues. She was the recipient of a year long National
Policy Fellowship with the National Council on Disability in 1985. Ms.
Rauscher was director of the Office of Health and Disability at the Massachusetts
Department of Public Health, funded by the Centers for Disease Control’s
Office on Disability and Health for nine years. She is currently Director
of Disability Services and ADA/504 Compliance Coordinator at Smith College.
She remains an active member of several community and state level committees
and boards, including the Massachusetts State Independent Living Council.
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