ERIC ED468911: Reaching Rural Communities: Increasing Access to Disability Research Information.

22 Pages·2002·0.77 MB·English

by  ERIC

DOCUMENT RESUME
ED 468 911
RC 023 718
Reaching Rural Communities: Increasing Access to Disability
TITLE
Research Information.
INSTITUTION
Southwest Educational Development Lab, Austin, TX. National
Center for the Dissemination of Disability Research
SPONS AGENCY
National Inst. on Disability and Rehabilitation Research
(ED/OSERS), Washington, DC.
PUB DATE 2002-00-00
21p.; Published quarterly.
NOTE
H133A990008-A
CONTRACT
AVAILABLE FROM
Southwest Educational Development Lab, 211 East Seventh St.,
Suite 400, Austin, TX 78701-3281. For full text:
http://www.ncddr.org/du/researchexchange/ v07n02/.
PUB TYPE
Collected Works
Serials (022)
JOURNAL CIT
Research Exchange; v7 n2 2002
EDRS PRICE
EDRS Price MF01/PC01 Plus Postage.
*Access to Information; *Disabilities; *Information
DESCRIPTORS
Dissemination; Networks; *Outreach Programs; Rehabilitation;
Research Utilization; *Rural Areas
IDENTIFIERS
Access to Services
ABSTRACT
Nonmetropolitan areas have the highest percentage of people
with disabilities, including severe disabilities. However, rural people with
disabilities may represent a population that is underserved or difficult to
reach. Barriers to information dissemination in rural areas include limited
transportation and communications infrastructures, greater numbers of older
and less educated individuals, economic hardship, and lack of other services.
Consequently, rural residents' awareness of disability research and its
potential positive impact on the lives of rural people with disabilities is
limited. This publication describes strategies to increase rural access to
disability research information. Brief articles are "Shepherd Center's Web-
Based Learning Connections" (Roxanne Pickett Hauber); "Access to Disability
Research Information by Rural Consumers: Key Findings from the NCDDR 2001
Survey"; "Outreach Strategies of the RTC on Rural Rehabilitation
Services" (Tom Seekins); "Strategies for Building Communication and
Participation: Experiences from the Lower Mississippi Delta States" (Ari
Mwachofi); and "Home-Based Video-Counseling for Rural At-Risk Adolescents
with Epilepsy and Their Parents" (Robert L. Glueckauf). Summing up the
strategies in these articles, 12 recommendations are presented concerning
appropriate targeting and tailoring of information, using multiple formats
and media, spreading information through local organizations and social
networks, being aware of cultural diversity and age-related issues,
minimizing transportation needs, involving rural residents with disabilities
in participatory research, and asking for feedback. Related resources on
rural issues are listed.
(SV)
Reproductions supplied by EDRS are the best that can be made
from the original document.
Volume 7 ,Number 2 0 2002
U.S. DEPARTMENT OF EDUCATION
Office of Educational Research and Improvement
EDUCA rIONAL RESOURCES INFORMATION
CENTER (ERIC)
his document has been reproduced as
received from the person or organization
originating it.
Minor changes have been made to
improve reproduction quality.
Points of view or opinions stated in this
document do not necessarily represent
official OERI position or policy.
Reaching 'aural
Reaching Rural Communities:
Increasing Access to Disability
Research Information
1
Communities:
A Word From the Director:
Dissemination and Utilization
for Rural Populations
2
Increasing Access to Disability
What is Rural?
3
Shepherd Center's Web-Based
Research Information
Learning Connections
4
Access to Disability Research
Information by Rural
Consumers: Key Findings from
the NCDDR 2001 Survey
5
If all NIDRR grantees used only the World Wide Web for distributing information,
as much as 93 percent of people with disabilities living in rural areas would not be able
Outreach Strategies of the
to access the information, according to Dr. Tom Seekins, Director of the RTC on Rural
RTC on Rural Rehabilitation
Rehabilitation Services. In a recent NCDDR interview, Dr. Seekins pointed out the
6
Services
need for a variety of channels and formats to ensure that consumers with disabilities in
Strategies for Building
rural areas are able to receive information. Seekins and several other NIDRR grantees
Communication and
whose projects focus on rural populations
Participation: Experiences
were invited by the NCDDR to share
from the Lower Mississippi
information about their research and their
9
Delta States
outreach and dissemination experiences
Home-Based Video-Counseling
targeting rural audiences.
For some NIDRR
for Rural At-Risk Adolescents
The dissemination mission of the
with Epilepsy and
NIDRR community includes potential
grantees, people with
Their Parents
11
users of research outcomes from rural
America. For some NIDRR grantees,
Implications: Targeting
disabilities living in
people with disabilities living in rural areas
Dissemination and Utilization
may represent a population that is
to Rural Residents with
rural areas may
underserved and/or difficult to reach.
Disabilities
13
Specific strategies to overcome existing
Related Resources on Rural
represent a population
barriers for people with disabilities who live
15
Issues
in rural settings are addressed in this issue
that is underserved
of The Research Exchange.
Who's in the News
16
NIDRR Grantee and Staff
and/or difficult to reach.
Disability in Rural Areas
Recognition
18
Studies of the demography of disability in
rural America show that non-metropolitan
This newsletter is
areas have the highest percentage of people
available in alternate
with disabilities, including people with severe disabilities. Data indicate:
formats upon request.
approximately 12.5 million of rural Americans have disabilities, and six million have
SOUTHWEST EDUCATIONAL
S E D
L
severe disabilities,
people with disabilities make up 23 percent of the non-metropolitan population,
DEVELOPMENT LABORATORY
compared to 18 percent in metropolitan areas, and
Building Knowledge to Support Learning
approximately 11 percent of the non-metropolitan population reports a severe
disability; slightly higher than the nine percent reported for metropolitan areas
L
pro,y,lfullded by tbe
en't
( Seekins, Innes, & Maxson, 1998).
bD blItypitayl 0, KAM,.
1.
:4::
continued on page 2
1.
',1,..
2
BLE
BEST COPY AVM
Li\
I
Volume 7, Number 2
The Research Exchange
2
Dissemination and Utilization for Rural Populations
people with disabilities who can use
researcher was sensitive to including this
many of America's past decades,
Unlike
them, even though they may live in
group within the research process.
more and more Americans are living in
geographically remote or rural areas.
urban/suburban environments. Farming
Research teams should also be aware of
and agricultural vocations are employing
the way in which rurally-residing people
However, an important question remains
fewer and fewer Americans. Although
regarding the extent to which research-
with disabilities are integrated into
conducive to narrowing gaps that may be
based information is applicable or
Participatory Action Research (PAR) and
caused by geographical dispersion,
targeted to people with disabilities living
project advisory activities. If research
Information Age technologies do not
designs and dissemination/utilization
in rural environments. Researchers may
appear to be fully utilized to integrate
activities are going to best fit the needs of
not consider characteristics of residency
rural populations. Most of the recent
when establishing a research sample. The rural Americans, their involvement in
attention on universal access, physical
extent to which rurally-based people such participatory and advisory functions
accessibility and service delivery has been
with disabilities are participants in a
would be invaluable.
focused on meeting the needs within
research design may go unmentioned,
urban/suburban-based target groups of
unless the research study is solely
This issue of The Research Exchange
persons with disabilities in America.
oriented to this target population. While
highlights some ways in which selected
NIDRR grantees have addressed some of
it is generally accepted that most research
While meeting the needs of
designs and sampling techniques should
these issues. These highlights may
urban/suburban Americans is essential,
.
provide insights kir other grantees dfat
randomly assign subjects according to
another significant group of Americans
may be useful in adopting or adapting
race, ethnicity, and gender for
with disabilities reside within rural
generalization to the widest population them within your research project and
environments and present many, perhaps
related dissemination and Utilization
base possible, much less clarity exists in
unique, challenges for service providers
regard to the characteristic.of where a
activities. Additional technical-assistance
and those facilitating the dissemination
is available from the NCDDR for
research subject may live. The ability of
and utilization of needed research-based
NIDRR grantees in planning and
rural residents with disabilities to utilize
information resources: Clearly,
implementing r
outreach efforts.
specific NIDRR research findings may
Ural
appropriate disability-related research
rest upon the degree to which the
outcomes need to find their way to
John D. Westbrook, Ph.D.
Director, NCDDR
is appropriate for dissemination. Rural
The infrastructure (such as public
Reaching Rural Communities
isolation can create communication barriers
transportation and physical access to
continued from page 1
when the sources of information are people
buildings) is less developed in rural areas
Possible reasons for the disproportionately
and may contribute to reported
perceived as "outsiders." Other factors
higher rate of disability in rural areas are
complicating dissemination may include
limitation/disability.
delineated by Enders and Seekins (1999):
limited health care facilities, few rehabilitation
Poverty is often associated with disability,
Many rural occupations are among the
services, and economic hardship. Overall,
and poverty rates in rural areas are
most physically dangerous and produce
there is limited awareness of disability
disproportionately high, equivalent to
high rates of injury that can lead to or
research and its potential positive impact
those found in U.S. central cities (p. 15).
result in disability.
generally on the lives of people with
The proportion of older Americans in
disabilities in rural areas.
Barriers in Rural Areas
rural areas is higher than in urban areas,
What are the barriers to dissemination of
and rates of disability increase with age.
NIDRR Grantee Experiences
information to rural people with disabilities?
Individuals who have attained higher
The following articles present information
Some of the factors that contribute to higher
levels of education tend to leave rural areas
from grantees describing their work within
for employment in cities. This migration
prevalence of disabilities in rural areas also
rural communities and strategies that may be
create barriers to disseminating information
pattern leaves a higher proportion of less
useful for NIDRR grantees to use in reaching
in those areas. The limited development of
educated people working at dangerous
consumers with disabilities who reside in
occupations, potentially contributing to the infrastructure of transportation and
rural communities. Many of the strategies
the higher injury rate.
communications systems impacts information
used and reported here by NIDRR grantees
Medical and other support services that
sharing. Greater numbers of older and less
were helpful in overcoming some rural
educated individuals hold implications for the
may help prevent disability are less
environment associated of the barriers. Other
format and content level of information that
available in rural areas.
BEST COPY AVAILABLE
Volume 7, Number 2
The Research Exchange
3
Ari Mwachofi, Ph.D., Principal
Investigator, Developing a
Rehabilitation Service Delivery Model
for Minority Farmers with Disabilities
at the University of Arkansas, talks about
how personal contact, the development of
trust, and collaboration with community
leadersall integral components to
successful research and dissemination
activities with rural audiencesfacilitated
their research project. Article on page 9.
In an interview with Tom Seekins, Ph.D.,
strategies proved useful to gather information
Robert L. Glueckauf, Ph.D., Principal
Director of the Research and Training
about the needs of rural people with
Investigator of Home-Based Video-
Center on Rural Rehabilitation Services
disabilities. Some of the research using
Counseling for Rural At-Risk
(RTC:Rural) at the University of Montana,
technology shows promise for ways to
Adolescents with Epilepsy and their
NCDDR staff learned of the dissemination
increase access to and ongoing
Parents at the University of Florida, shares
strategies used by the RTC:Rural in their
communication with rural populations.
some of their participant recruitment and
efforts to reach rural communities. Among
information dissemination experiences
other dissemination formats, Dr. Seekins
Roxanne Pickett Hauber, Ph. D., RN.,
from their project's research with
described the use of technology and the
Manager and Nurse Researcher of the
teenagers who reside in rural
associated social and economic barriers
Telerehabilitation to Support Assistive
communities across five Midwest
that preclude many rural residents from
Technology program at the Shepherd
and three Southeast states. Article
the equitable use of technology. Article
Center in Atlanta, talks about the use of
on page 11.
on page 6.
telerehabilitation applications to provide
follow-up support to recently-discharged
References:
patients, their families and their health
providers. Implications and benefits of
Enders, A., & Seekins, T (1999). Telecommunications access for rural Americans with disabilities.
telerehabilitation applications for
Rural Development Perspectives, 14(3), 14-21.
individuals from rural communities are
Seekins, T, Innes, & Maxson. (1998). An update on the demography of rural disability (RTC:
discussed. Article on page 4.
Rural Factsheet). Available: http://ruraliuristitute.tunt.edu/rtcrural/RuDis/RuDemography.htm
What is Rural?
defined urbanized area with a population of
Research Institute, 1999). The more
The concept of rural can have a number of
at least 100,000. In addition, those outlying
commonly used definitions are those of the
meanings, and there is no universally
counties that are economically and socially
accepted definition of the term. Rural and
Census Bureau and the OMB.
non-metropolitan areas are generally defined
connected to the county-based metropolitan
In 1990, the Census Bureau defined
by exclusion; that is, areas that are not
areas are considered a part of the
urban areas as places of 2,500 or more
classified as urban and metropolitan are
metropolitan area. Non-metropolitan areas
persons and comprising all territory,
rural and non-metropolitan, respectively.
or counties are considered rural counties
population, and housing units in urbanized
Several criteria are used to define urban and
(RUPRI, 1999).
areas (with some exceptions). Territories and
metropolitan areas.
places that are not urban are considered
The Census Bureau differentiates
For more information:
rural. The 2000 Census Bureau criteria uses
between rural and urban areas. The U.S.
"the territory designated as urban clusters,
Rural Policy Research Institute (RUPRI).
Office of Management and Budget (OMB)
rather than the entity of places that have a
(1999). Rural policy context.
uses the terms metropolitan and non-
specified population, to determine the total
http://www.rupri.org/policyres/
metropolitan areas. The Department of
urban population outside of urbanized
context/index.html
Agriculture's Economic Research Service
areas" (U.S. Census Bureau, 2000, p. 4).
employs various codes such as rural-urban
U. S. Census Bureau. (2000). Census 2000
The OMB uses a county-based definition
continuum codes, urban influence codes,
urban and rural Classification.
where metropolitan areas are those counties
county typology codes, and rural-urban
http://www.census.gov/geo/wvvw/
with one or more major cities of at least
commuting area codes (Rural Policy
ua/ua_2k.html
50,000 people or with a Census Bureau-
Volume 7, Number 2
The Research Exchange
4
Shepherd Center's Web-Based
Learning Connections
Roxanne Pickett Hauber, Ph. D., R.N.,
Manager and Nurse Researcher of the
Telerehabilitation to Support Assistive Technology program at the Shepherd Center in Atlanta, talks about the
use
of telerehabilitation applications to provide follow-up support to recently-discharged patients, their families and
their health providers. Implications and benefits of telerehabilitation applications for individuals from rural
communities are discussed.
NIDRR has provided leadership in redefining
Georgia, in general, is a rural state with a few
Prior to beginning this endeavor, a three-
disability as "the product of an interaction
major areas of urban concentration. Primary
year retrospective survey of Shepherd patients
between characteristics of the individual and
care clinicians cover the state reasonably well,
was conducted to find out what percentage of
characteristics of the natural, built, cultural
but rehabilitation expertise for people with
our clients has access to computers and the
and social environments" (Seelman, 2000).
brain and spinal cord injury is limited to the
Internet. Findings indicated that 73% of
Within this new paradigm of disability one
major urban areas (Stachura, 2001).
individuals surveyed had access to and used
must consider:
Therefore, mechanisms that can empower
computers and 68% had access to the
individuals with related disabilities and their
Internet (Hauber et al., in press). The survey
What is in an environment?
families living in rural
also asked participants what
Is it accessible and available to everyone?
areas are crucial to
types of health-related
And if not, how can it be modified so that
optimize long-term
information they had found
it will be universally user-friendly?
outcomes.
on the Internet that was
"...cyber-
Part of this project
useful, and what kinds of
The new cyber-environment lends itself to
included the development
things they had not been able
environments have
being modified, even customized to the user
of a server database that
to find, but would like to have
so that resources and services are readily
included disability-specific
access to on the Internet. In
tremendous potential
accessible. For that reason, cyber-
health and wellness
addition, a consumer group
environments have tremendous potential for
information addressing
made up of former Shepherd
for changing the world
changing the world for people with
patients' specialized care
patients was initially brought
disabilities (Vesmarovich, Hauber and Jones,
needs. This information is
together to discuss the kinds
for people with
2000). The use of these advances in
used to deliver, over the
of information, resources, etc.
telecommunications technology to inform
network, "just-in-time"
they would find useful.
disabilities."
and educate has resulted in the emerging field
interactive, multi-media
Guidelines from the Science
of interactive health communication (IHC)
instruction and support to
Panel on Interactive
(Hauber, Vesmarovich and Testani-Dufour, in
patients and caregivers.
Communication and Health
press).
The materials provide easy
(1999) were used as the
In 1999, Shepherd Center in conjunction
access to essential
materials were developed.
with Georgia Institute of Technology and
information about specific health care
All patients who receive rehabilitation
corporate partners, Bell South, Cyber-care,
routines, community resources, and topics
services at Shepherd and their families are
and Siemens, Inc. were awarded a matching
related to moving beyond disability such as
instructed on how to access and use the
funds grant from the U. S. Department of
travel, healthy life styles, recreation, and
materials while they are in in-patient
Commerce National Telecommunications
return to work and school. These
rehabilitation. To access this material go to
and Information Administration to develop a
instructional and resource materials can be
Shepherd's website http://www.shepherd.org/
Next Generation Internet (NGI) network in
accessed in the home, at work, at public
; Select My Vital Connections, choose Patient
the metro-Atlanta area linking patients'
libraries, in small clinics and anywhere people
Pages, and then click on Preview Page.
homes and rehabilitation service providers.
have access to the Internet.
The Research Exchange
Volume 7, Number 2
5
Access to Disa ility Research
Author Notes:
Information by Rural Consumers:
Roxanne Pickett Hauber,
Ph.D., RN, CNRN
Manager and Nurse Researcher
Telerehabilitation to Support
Key Findings from the NCDDR 2001 Survey
Assistive Technology
Shepherd Center
2020 Peachtree Road NW
The NCDDR engages in an annual
Atlanta, Georgia 30309-1402
survey activity to help increase the
Telephone: [phone]
knowledge base in the NIDRR
Email:
community regarding the dissemination
[email protected]
and utilization (D & U) of disability
research findings. The survey focuses on
Telerehabilitation Program:
obtaining information across major
http://www.shepherd.org/
MIMMM
groups invested in disability research. A
shepherdhomepagc.nsf/
Isom
key component of the survey activity is to
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21Bil0 SONSI3
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gain knowledge about what areas of
Highvt, ol Findings
April 2002
07672a8
disability-related research are important to
consumers, how consumers prefer to
receive disability research information, and
how the use of computers and the
Internet/Web are helping consumers'
Disability RReesseeaarrcchh Interests
search for information. The knowledge
gained helps to inform researchers from the
References:
NIDRR community about ways
Rural consumers were most interested in
consumers with disabilities and their
research on independent living and
Hauber, R P, Vesmarovich, S., & Testani-
families obtain and use disability research
community integration, followed by
Dufour, L. (in press). The use of computers
information.
interest in research on legal/policy issues,
and the Internet as a source of health
Survey participants included individuals
research on assistive technology, and
information for people with disabilities.
with disabilities, representatives from
research on employment.
Rehabilitation Nursing.
organizations that focus on more direct
Ninety-three percent of rural consumers
consumer contact, and NIDRR-funded
agreed that disability research is useful,
Science Panel on Interactive Communication
grantees). The consumer group consisted of
but fewer agreed (48%) they could easily
and Health. (1999). Wired for health and well-
people with disabilities and their families
find disability research.
being-the emergence of interactive health
who participate in Independent Living
communication. Washington D.C.: U.S.
Centers (ILCs) across the country. Following
Accessing Disability Research Information
Department of Health and Human Services,
are some key findings from the NCDDR
Rural consumers reported they contacted
Office of Public Health and Science.
2001 Survey concerning consumers with
a community service provider/disability
disabilities from rural areas and their
advocate most often (70%) when
Seelman, K. D. (2000). Science and technology:
information needs.
obtaining disability research information.
Is disability a missing factor? Colin McLaurin
Other approaches used to obtain
Distinguished Lecture sponsored by Sunrise
Demographics
information included calling a disability-
Medical, RESNA, Orland, FL. July 1, 2000.
Thirty percent of the respondents
related organization (64%); looking in
reported they were from rural areas.
brochures, fact sheets, or newsletters
Stachura, M. E. (2001). The Georgia state-wide
The majority of rural respondents were
(56%); looking on the Internet (52%);
telemedicine network: some lessons learned.
female, aged 30-49 years, White, and had
and looking in research journals (25%).
Journal of Telemedicine and Telecare. 7(suppl.2)
a physical/orthopedic disability.
The majority of rural consumers (87%)
62.
Thirty-one percent reported being
preferred receiving disability research
employed full-time, while 23 percent
information via printed materials. Other
Vesmarovich, S. H., Hauber, R. P., & Jones, M.
reported they were unemployed and not
preferred formats for receiving
L. (2000). Using telecommunication
seeking employment.
information included telephone/toll-free
technologies to change the world for people
Receiving information in English was
information line (78%); Internet/Web or
with disabilities related to catastrophic
preferred by the majority of rural
e-mail (73%); pictures (62%); videotape
neurological impairment. Cyberpsychology and
consumers.
(59%); and audiotape (54%).
Behavior. 3(6) 925.
continued on page 20
Volume 7, Number 2
The Research Exchange
6
Out
of the RTC
on
t tion Services
Ph.
Seekin.99
In an interview with 71071§
Director of the Research and Training Center on Rural
Rehabilitation Services (RTCRural) at the University of Montana, NCDDR staff learned of the dissemination
strategies used by the RTC :Rural in their efforts to reach rural communities. Among other dissemination formats,
Dr. Seekins described the use of technology and the associated social and economic barriers that preclude
many
rural residents from the equitable use of technology.
information that we gather, the findings, and
How does your project
information on these Web sites including
NCDDR:
disseminate disability research
the products that are developed from that
further links to other resources.
information to consumers in
research to what might be called
rural/remote areas?
intermediaries, that is service providers,
It's important to say that we recognize that
support systems or networks. While the
access to and use of the Internet in rural areas
Seekins: As a national research center, we
information that we develop from our
is much lower than in urban areas. So, in
don't typically provide a lot of direct services.
research and other sources is available to
addition to the electronic system, we still
We are often in direct and intimate
individuals and we do provide information to
maintain an actual mailing list used to send
connection with consumers, people with
some individuals, we believe our greatest
out the same information in hard copy as
disabilities, when we are working together on
impact comes from our research changing the
well. We don't feel that this is redundant. In
research projects designed to develop
way programs and service providers operate.
fact, we look at it as using two different
innovative practices. So, for example, one of
Our perspective is that those networks are in
channels of communication for each of our
our programs is a health
place and their role is to
messages.
promotion program called
reach the broad population.
Living Well With a Disability
If they view our information
In terms of a specific audience, what we
that we've done around the
and products as valuable,
"...we
have designed is a system that permits us to
believe our
country, working through
they will integrate them into
be very targeted in what we do disseminate
rural centers for independent
their programs.
and to whom we disseminate the
greatest i
i pact comes
living. Well over 300 people
information. We don't disseminate all the
with disabilities have
We disseminate
information we have to everybody on the
from our research
participated in that and
information directly to the
mailing list. Depending on the content of the
received services. So, in the
intermediaries in a couple of
fact sheet or other information piece, we
changing the way
sense that individuals with
different ways. One is an
target our mailing to the constituent and
disabilities are participating
electronic email distribution
intermediary groups that are really going to
programs and service
in a research project that is
system that sends out, about
be interested in that particular topic.
designing or developing a
once a month, research
providers operate."
new service model or new
progress reports, rural
One of the other important things that we
service program, we're in
practice guidelines and a
have tried to do is use the media. A study on
direct contact with
series of brief fact sheets that
media and disability conducted by Cyndi
consumers and providing
summarize a finding or some
Jones of the Disability and Rehabilitation
them information and
important policy change or
Research Project to Disseminate Independent
something that's going on that has
services.
Living Research Information Through the
implications for rural areas. A single
Mass Media to Persons with Disabilities
Once the research is completed, our goal
paragraph abstract describing these
http: / /wwwaccessiblesociety.org/ in San
becomes broad dissemination of the findings
information pieces goes out electronically
Diego found that most people with
and, when appropriate, broad adoption of the
with a Web site link for each, so that if the
disabilities get most of their information
innovation. We use several strategies to
intermediaries read the electronic abstract and
about disability from mainstream media. And
accomplish that goal but the one that comes
are interested in it, they can click on the
so, we took that to heart and tried to address
closest to reaching consumers involves
specific Web site link and read more about
the question, what media is most used in
targeting our dissemination of the
the topic. We also have much more detailed
rural communities? There are rwo media
7
The Research Exchange
Volume 7, Number 2
7
How does your project include
How successful are your
formats that we're trying to target. One is the
NCDDR:
NCDDR:
consumers from rural/remote
dissemination strategies?
use of small town and rural county
areas as participants in a
newspapers. We have developed a mailing list
Seekins: One of the things we've tried to do
research study?
of those around the country and we send
in a couple of different cases is some
them all of the information that we develop.
Seekins: We believe we have a strong
systematic evaluation of satisfaction with the
We are also going to try to target the rural
program of Participatory Action Research.
information that is provided. And we've run
radio as well. For a lot of rural areas, radio is
Involvement varies pretty significantly
into a couple of problems with that. One is
an important source of information.
depending on the topic or the issue we're
that when we have generic questions about
Unfortunately, we have not had the time or
trying to address. We tend to look at our
satisfaction with materials that are distributed,
resources to evaluate the impact of this effort
constituents or the potential users of our
they're not very meaningful questions because
yet.
research as not just people with disabilities,
the information is too general. And so, the
but also people who are those intermediaries,
data we get back when we've asked generic
both from Centers for Independent Living,
questions have not been very useful. When
Who are some of these
NCDDR:
from rehabilitation programs, from Section
we try to be more specific, the questions get
intermediaries that your project
21 programs, or whoever they may happen to
so specific that we don't get very many
networks and collaborates with
be. So, when we start off looking at a research
responses. So, the combination of those two
to help move disability research
project, we actually look at topics. We try to
factors has led us to rely primarily on what we
information to consumers in
identify ahead of time research topics that are
call spontaneous feedback.
rural/remote areas?
going to lead to programs that will have
systems change effects. That
What will happen, for
Seekins: We have a list of about 36 different
is, changing the way that
example, is that we'll
national service, advocacy, and support
systems operate and are
electronically send out a fact
networks that do significant or substantial
"...we
organized to be more
sheet on rural mental health
work in rural areas. So, for example, the
can point to a
conducive to promoting
issues and within the first
Association of Programs for Rural
quality living for rural
week that it has been
Independent Living (APRIL) is a national
broad range of
residents.
disseminated, we will have
association of Independent Living Centers
received a half a dozen
that work in rural areas. The APRIL group is
impacts associated
So, in the transportation
responses electronically from
one network out of 36. There are 178
program, for example, we
some relatively well-known
members of that group and probably about
with the
worked very closely with staff
program directors and
120 of those are actually Centers for
and consumers of Centers
policy makers. Their
Independent Living. Our research shows that
dissemination
for Independent Living and
feedback basically says
those programs serve over 25,000 individuals
other kinds of community-
thanks, this information is
with disabilities living in rural areas annually.
of our research."
based service programs,
wonderful, send us some
So, by targeting those 120 CILs, we hope to
including developmental
more, and how can we find
reach 25,000 people indirectly.
disability service programs to
out some more about this
design and craft the
topic. That's one way we
The 36 networks consist of major
program. When we went out to do the
determine the utility of the information. We
categories such as the Administration on
research, we worked with people representing
look at the number of comments we receive,
Developmental Disabilities, American Indian
those kinds of service networks. We worked
the quality and content of the comments, and
Programs, the National Association of
with them to design and implement the
try to use that information to really shape
Protection and Advocacy Systems, and the
model and facilitate the research and
what we disseminate in the future. It would
National Rural Health Association, to name a
evaluation of the model. We collaborated on
be really nice to have more detailed
few. These are further divided into different
making modifications and designing
evaluations of our dissemination activities,
targeted groups.
something that would fit within the context
but the expense associated with evaluating it
of those service programs. Then, once we got
in terms of the funds we're able to allocate
Then we have the mailing addresses for all
it to a point where the research and
across all of our projects is more than we can
the regional and local vocational
evaluation showed that it was an effective
afford at this point.
rehabilitation offices. It took us quite a while
model, we looked for ways of replicating it for
to develop this national listing of 1,235
wider use. In this case, APRIL secured a grant
What I can say, however, is that we can
vocational rehabilitation offices. We wanted
from the Rehabilitation Services
point to a broad range of impactschanges
to make sure that the contact persons
Administration to demonstrate the utility of
programs have made in the way they go
receiving our information were vocational
the program in ten states. The goal of this
about their workassociated with the
rehabilitation counselors who provide services
step is to demonstrate a program that can be
dissemination of our research. While that's
directly to consumers. So, our information is
sustained locally. In this way, the services
the bottom line, we think we can do better
reaching at least one contact person from
eventually get to individuals with disabilities
and evaluation would help. It's just that we've
1,235 vocational rehabilitation programs that
thus increasing their access to independent
chosen to invest our evaluation resources in
are working in rural areas. And so, that
living, employment, and education
the development of the research.
becomes an intermediary.
page R
rntitirmod nn,
Volume 7, Number 2
The Research Exchange
8
the Internet. That means that about 93
Outreach Strategies of the RTC
means that Internet access is extremely slow.
continued from page 7
percent of people with disabilities who live in
The slow Internet access just means the cost
rural areas do not use the Internet at this
will be even higher, since she's paying a
opportunities, areas to which they may not
time. This has obvious implications for
long distance charge to access the Internet in
have had access earlier because of the lack of
electronic dissemination practices.
the first place. So, despite the availability
transportation.
of the computer and Internet on her end,
Also, when you look at the demographics
access to such telecommunications is a
of income levels, poverty rates in rural areas
barrier due to the inadequate cable
What are some issues related
NCDDR:
are very, very similar to those in central cities,
infrastructure.
to rural communities and
overall. A lot of people don't have that
access to
perception and understanding. They tend to
There are a lot of national and state efforts
telecommunications?
look at rural areas as these bucolic areas of
to improve the infrastructure in rural areas for
rolling farmlands and big families and happy
telecommunications. I think a sort of historic
A study Alexandra Enders did in
Seekins:
times. There are a lot of myths that are
parallel to that might be like the rural
collaboration with Dr. Stephen Kaye of the
invested in these kinds of concepts of rural
electrification process during the early parts of
Disability Statistics Center at the University
living. But the reality is that rural areas are
the last century when there was a concerted
of California in San Francisco looked at the
often very poor areas with disability
federal effort to try to extend electricity
distribution of individuals with and without a
prevalence rates that are higher than in urban
services out into the rural areas of the country
disability who own a computer and use the
areas.
and later, on the heels of that, phone services.
Internet in metropolitan, suburban, central
Cities and metropolitan areas all have the
city and rural areas. The study found that
Issues with access to telecommunications
infrastructure much earlier than the rural
people with disabilities who live in rural areas
also include significant infrastructure
areas and very similar kinds of processes are
were less likely to own computers when
problems that exist in rural areas. A couple of
happening with the Internet and other types
compared to people with disabilities who live
years ago, and you still see this from time"to
of telecommunications. But for the
in metropolitan, suburban, and central city
time, ads appeared in
foreseeable future direct access to the Internet
areas. This is a pretty
major metropolitan
for information, services, and training for
consistent finding and
newspapers that said
people with disabilities in rural areas is pretty
similar to findings that
"...the percent of
"sign up with blank
limited.
disaggregate
Internet service, free
metropolitan areas into
individuals who own
access." If you read to the
We are presently conducting a study of
central city and
bottom of the
Internet access and use for various service
suburban areas and then
a computer with no
advertisement, you'd see
activities by rural centers for independent
look at non-
further information in
living. The surveys are literally out in the field
metropolitan or rural
disability in central
small print "except in
and we're just starting to receive the data. In
areas. Non-metropolitan
outlying areas that are
the past, we have been able to estimate that
areas and central cities
cities is about 47.4
difficult to access."
most centers for independent living serving
have much more in
Basically what those ads
rural areas do have computers and most do
common with each
percent. In rural
were saying is that if you
have access to the Internet.
other than either has
live in a city, you can
with suburban areas in
areas it's 44.5
access the server free, but
However, there are a whole series of questions
the nation.
if you live in a rural area,
that have not been adequately answered.
percent..."
you probably have to pay,
Questions like how many computers do they
For example, the
not only a long distance
have? How many accounts do they have?
percent of individuals
call charge, but you may
How many staff has access to the Internet?
who own a computer
have to pay some other
How easy is it for them to get access to it?
with no disability in central cities is about
access fees. This presents an economic barrier
What's the capacity of their staff to locally use
47.4 percent. In rural areas it's 44.5 percent,
to many rural residents.
the potential capacity of electronic-based
so, you can see some similarity. In suburban
systems of computers and Internet, and even
areas, computer ownership is 58 percent. The
In terms of the infrastructure, one of our
e-mail, for service delivery?
percentage of individuals with a disability
staff, Alexandra Enders lives north of
who own a computer in suburban areas is
Missoula on a reservation, and she actually
I think it's fair to say that the promises and
almost 30 percent compared to approximately
does a lot of work in telecommunications for
declarations that are often made concerning
20 percent in central cities and rural areas.
our center. Although she owns a computer
how the use of the Internet or other
with access to the Internet, she has to drive in
telecommunications will be a boon for
Then, if you look at the percent of
to the office to access the Internet. If she were
people with disabilities who live in rural
individuals who use the Internet in urban and
to try to connect to the Internet from her
areas,- are not yet true by any stretch of the
rural areas and you look solely at people with
home, it's a long distance telephone call to the
imagination. Right now, it's a vision for the
disabilities, only 6.8 percent of the people in
server. And not only that, the quality of the
future. If those visions come true, there will
rural areas who report a disability use the
cable infrastructure in her area and in a lot of
be some substantial benefits. But right now
Internet. So, it's somewhere around a third of
rural areas is poor, still copper wire, which
it's just not the reality.
the people who have a computer are accessing
4
0 The Research Exchange
Volume 7, Number 2
9
What general
NCDDR:
Strategies f
recommendations can you
make to assist in guiding
other NIORR grantees in
n n
their efforts to disseminate
Communicati
information to rural
audiences?
Seekins: We recommend working with
systems or intermediary organizations. Given
Participation:
that we work in disability and rehabilitation
under the Rehabilitation Act, we tend to view
our "core constituency" as those systems in
the Act. There are other systems that directly
Experiences from the Lower
reach people with disabilities or that support
those who do. If you have research that is
valuable to them or their consumers, they
Mississippi Delta. States
provide a fantastic channel for dissemination.
Better yet, if you have interest in research
relevant to rural areas, use PAR approaches to
work with those systems to design and
Ari Mwachofi, Ph.D., Principal Investigator, Developing a
conduct the research. That increases the
likelihood that the results will address
Rehabilitation Service Delivery Model for Minority Farmers with
important issues, do so in appropriate ways,
Disabilities at the University of Arkansas, talks about how personal
and produce significant outcomes. If your
research meets those criteria, there's a good
collaboration with community.
contact, the development of trust, and
chance it will be adopted.
leadersall integral components to successful research and dissemination
activities with rural audiencesfacilitated their research project.
I
with farmers. The following are descriptions
Background
of strategies used to disseminate information
The observations and suggestions presented
about the project, recruit participants, and
here come from the experiences of a
gather data for the research study.
participatory action research (PAR) project,
Developing a Rehabilitation Service Delivery
Use of local media
Model fir Minority Farmers with Disabilities.
Small locally-oriented newspapers were
The purpose of the project is to build a
targeted to promote awareness about the
dynamic and effective model of service
project. These newspapers were more
delivery to minority farmers who have
receptive and willing to publish articles than
traditionally been underserved. The study
were the larger newspapers. Residents of small
involves farmers (rural residents) from the
rural communities responded to these articles
Lower Mississippi Delta (LMD)
by requesting more information about the
statesArkansas, Louisiana, and Mississippi.
project. Articles were also published in rural
newsletters such as Farm Sense and other
Dissemination strategies used to
farmers' cooperatives newsletters. These were
inform and recruit participants
especially effective because they targeted a
I
The project began with a great deal of
particular audience of rural farmers. On
publicity informing farmers about the
occasion, the larger newspapers picked up the
project's objectives so they would be prepared
story about the project after it was published
I
to meet with the project staff for interviews.
I,
I
by the local newspapers. For instance, on
,
I
Combinations of strategies were used to
IS
12/21/2001, USA Today published an article
effectively disseminate the information.
about the project after it had appeared in the
Strategies included use of the media, selection
local Pine Bluff Commercial newspaper. This
of key project staff, creating farmer-to-farmer
provided the project with national publicity
referrals building farmer teams, contacting
.1
I
I
thus increasing awareness and willingness on
rural churches, collaborating with farmer
6'1
the farmers' part to participate in the project.
organizations and agencies that work directly
111
continued on page 10
10