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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