2000 Conference Proceedings
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ASSESSING THE ASSISTIVE TECHNOLOGY NEEDS OF CALIFORNIANS WITH
DISABILITIES
Stuart P. Hanson
InfoUse
2650 Ninth Street, Suite 216
Berkeley, CA 94710
Tel: 510/549-6520
Fax: 510/549-6512
TTY: 510/549-6523
Mary Lester
Alliance for Technology Access,
2175 East Francisco Blvd, Suite L
San Rafael, CA 94901
415/455-4575
Fax: 415/455-0654
Introduction This paper presents the findings of statewide
assessments of the needs and uses of assistive technology among
Californians of all ages with disabilities. The study was
conducted during late 1998 and early 1999 with funds from the
California Endowment. The project team consisted of the Alliance
for Technology Access, InfoUse, and several consultants and
volunteers (see endnotes). The study grew out of an intense
concern that people with disabilities, especially underserved
populations, have very limited access to assistive technology. By
assistive technology, we mean any product or equipment, whether
acquired commercially off the shelf, modified, or customized, and
services and strategies that are used to increase, maintain, or
improve functional capabilities of individuals with disabilities
of all ages.
The needs assessment addressed the assistive technology needs of
all people with disabilities, reflecting geographic, racial, and
economic diversity of California. The project also focused on the
needs of people with disabilities of all ages, including infants,
children, youth, working age adults, and seniors who are also
members of other underrepresented groups in society. These groups
include racial and ethnic minorities, such as African-Americans,
Latino's, Native Americans, and Asian-Americans; people with low
education levels; people who are homeless or are economically
disadvantaged, and those living in rural areas, including migrant
and seasonal farmworkers.
Study Questions and Methodology
Research questions addressed in this paper include:
* What is the prevalence of disability and need and use of
assistive technology?
* What barriers impede access to assistive technology among
underserved groups according to consumers and service providers?
Related questions include:
* What organizational models, practices, resources, and linkages
have been successful in improving access to assistive technology
among underserved populations?
The project team combined quantitative and qualitative methods
and a variety of samples to gather and analyze information for
this study. To address prevalence questions, the project team
reviewed published data from national prevalence studies such as
the Census, Survey of Income and Program Participation, and the
National Health Interview Survey. The team also reviewed studies
that used non-national samples to identify need and use of
assistive technology in special populations.
To address questions related to barriers and resources, the
project team conducted a total of sixteen focus groups across the
state. Ten of these groups were comprised of consumers
representing a cross section of underserved populations in
California. Most groups reflected a range of physical, sensory,
and cognitive disabilities. Groups were conducted in Northern,
Central, and Southern California. The team also conducted focus
groups with six groups of front-line providers including
librarians, ATA center directors, public and private vocational
rehabilitation and regional center counselors, therapists, and
teachers.
To gather information from leaders in the provider and expert
communities, the team conducted 78 interviews with key leaders in
California and other states representing a cross section of key
organizations in the disability, technology, and underrepresented
communities. Interviewees included executive directors,
supervisory staff, front-line assistive technology specialists,
and current and former clients, including parents, of these
agencies and organizations.
The project team also conducted interviewed with more than
twenty-five "best practice" leaders across the United States.
Finally, the project team conducted literature and web
search.
Findings
In this section, we report the findings from the statistical,
focus groups, and expert interviews described above.
Prevalence of Disability, Use of Assistive Technology, and Need
for Assistive Technology in California
* 6.6. million Californians have a disability.
* Using a narrow definition, about 1.7 million Californians use
some kind of assistive technology.
* Mobility devices, including canes, walkers and wheelchairs,
are the most frequently utilized devices, estimated to be used by
more than 800,000 Californians.
* But special populations in California may increase the rate of
unmet need in the state. Specifically,
_ Poor people and those just above the poverty level have
disproportionately high rates of disability and greater unmet
need for assistive technology than do people with higher
incomes.
_ African-Americans and Native Americans clearly have higher
unmet need for assistive technology than non-minorities.
_ Latino or Hispanic-Americans and Asian-Americans, particularly
when English is not spoken in the home, may also have a higher
unmet need for assistive technology than non-minorities.
_ Other groups with a greater unmet need for assistive
technology include rural Californians, people with low education
levels, those with cognitive impairment, young children, elders,
and parents with disabilities.
* People with certain disabilities, notably cognitive
impairments, have less access to assistive technology than others
and may need much more instruction and support to use it.
Assistive Technology Funding
The high cost of having a disability is especially hard on low
and middle-income families and working people who are not
eligible for any assistance. Participants agreed that lack of
funding options to help people purchase assistive technology are
exacerbated by:
_ A fragmented, overly bureaucratized, and underfunded system of
public funding sources,
_ Inaccessible private sources,
_ Poorly trained staff in both public and private service
organizations, and
_ High interest rates, rigid eligibility criteria, and harsh
repayment schedules in the few available funding programs.
_ A variety of alternative loan programs should be explored to
address these concerns.
Services
Participants reported that:
_ While many assistive technology services are available to
Californians with disabilities, they are uncoordinated and
fragmented, participants in our focus groups were confused about
how and where to begin a search for assistive technology.
_ Californians with disabilities need reliable sources of
information regarding what kinds of technology are available, and
where to go for assistance in selecting, acquiring and learning
how to use the products.
_ Organizations and technology service providers are often
unaware of other assistive technology resources available in
their communities.
_ Consumers need to explore a wide range of products covering a
full range of technology without traveling excessive
distances.
_ "One-stop shops" are needed for their community in order to
test different products, and to borrow and receive training and
support in using them.
_ Information and services need to be culturally sensitive and
available in multiple languages.
_ A regional approach is needed to organize assistive technology
services so that all communities, especially underserved groups,
have access to assistive technology resources.
Training
Consumers, providers, experts and community leaders reported
that:
_ The demand for trained assistive technology service providers
far outstrips the supply.
_ Consumers want educators, health, and rehabilitation
professionals that are better training.
_ Not enough training opportunities are available for educators,
community-based assistive technology specialists, health
professionals, and others.
_ While some assistive technology training programs, including
certifications, are emerging, there is no comprehensive approach
to the wide array of training needs in California. An effective
and comprehensive assistive technology training model is
needed.
Public Information and Marketing
Consumers, professionals, and experts in the field reported
that:
_ Many people with disabilities in underserved communities do
not know that assistive technology can have a beneficial impact
in their everyday lives. People in these communities also do not
know that assistive technology is available; nor do they
understand where it can be found or how to get it.
_ A broad-based and coordinated public information and marketing
campaign is needed to increase awareness of assistive technology
in underserved communities in California
Systems Change
Participants in the needs assessment study observed that: _
Built-in inefficiencies, disincentives, lengthy time delays,
restrictive eligibility requirements with respect to disability,
age, and income, as well as inadequate funding plague state
agencies and other public entities that are mandated to serve
people with disabilities in the area of assistive
technology.
_ Public and private health insurance plans have overly
restrictive and antiquated definitions of assistive technology
based on medical necessity criteria that do not embrace
maintaining and improving independence, maximizing functional
capability, and improving quality of life.
_ A statewide, cross-disability task force is needed to bring
together stakeholders and focus energy on setting a systems
change agenda and move it forward. Priority items might include
MediCal, Medicare, and private insurance coverage for assistive
technology, legal compliance, funding programs, purchasing
policies, and changes in professional practice.
Conclusions
Access to technology is the gateway into the twenty-first century
for jobs, education, and information. We have to ensure that
people with disabilities can pass through that gateway. The
findings and recommendations of this study have the potential to
open the world of opportunity for Californians with disabilities
- in their communities, in their languages, and on their
terms.
Endnote: The Alliance for Technology Access gratefully
acknowledges the efforts of the following people in this project:
Betsy Bayha, Jacquelyn Brand, Libbie Butler, Roxanne Cortright,
Mary Ann Glicksman, Stuart Hanson, Kirsten Haugen, Paul Hendrix,
Russ Holland, Lita Jans, June Kailes, Jennifer Keith, Mary
Lester, Caren Normandin, Angela Patterson, Erica Sheidt, Debi
Schulze, Joseph Valentine, Lisa Wahl, and the hundreds of people
that participated in the focus groups and the key informant and
best practice interviews.
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