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Families play a pivotal role in helping children and youth with disabilities find and use technology. Parents often take the lead in advocating for technology to be available and usable by their children when they enter school, and in finding technology solutions for pre-schoolers and youth in transition to jobs and post-high-school education. An extensive infrastructure of local, state, and national organizations and programs help parents in the many steps of bringing technology into the lives of their children. But these organizations encounter many obstacles in helping families link with technology supports, such as coping with barriers of geographic distance, limited resources to deliver needed assistance, and a fragmented service delivery system that frustrates and discourages families.
This paper reports on the findings of a national study on the information and support that families need about technology that can benefit their children with disabilities, the organizational resources that are in place to assist them, and where these resources fall short of meeting families' needs. The study was conducted by the Family Center on Technology and Disability, which was set up under contract with the Office of Special Education Programs to help programs and organizations better provide technology-related information and support to these families. When OSEP issued its RFP for a family-oriented resource center on technology assistance, it specified a needs assessment as one of the center's initial activities.
The Family Center is a project of United Cerebral Palsy Associations, in collaboration with the Academy for Educational Development (AED), the National Information Center for Children and Youth with Disabilities (NICHCY), the PACER Center, the Alliance for Technology Access, and InfoUse. InfoUse designed and conducted the study, with substantial input from all of the Center's partners.
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This needs assessment addressed four major research questions:
To answer these questions, the study team hel a series of in-depth interviews with representatives of 38 organizations and programs that link families and children with disabilities with technology resources. These included Alliance for Technology Access Centers, state Tech Act Programs, rehabilitation facilities, and special education units. These key informants addressed the capacities of their own programs, what types of information and support families seek, and the difficulties they have encountered in providing technology-related assistance. The study team also reviewed statistical reports addressing disability prevalence and assistive technology use among children, and descriptive reports on program impact of organizations that link children and families with technology.
This study, then, looked at the needs of parents and families who turn to organizations and programs, including schools, for technology information and support. As such, it does not address technology needs for families who are unaware of technology or are reluctant to approach organizations for help. However, many respondents discussed the outreach efforts they had made to bring technology resources to these families.
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Parent/family information and service needs related to technology for children and youth with disabilities
Parents and families have differing levels of expressed technology-related needs for information and support. One in four respondents said that parents most often contact them with no clear idea that technology might help their children in school or at home. Even programs that primarily provide technology related assistance, such as ATA Centers and Tech Act programs, said that parents tend to ask more general questions about helping their child cope with a disability. Those parents who call with questions or concerns specific to technology usually have very general questions, the key ones being:
Less often, parents seek out a specific technology device or have fairly sophisticated questions about comparable products. When parents contact organizations with technology-related questions, they most frequently ask about acquiring equipment through vendors or by loan. Most often, they look for information about communication alternatives or cognitive and learning aids, including computers and instructional software in the classroom or for homework. Much less frequently, parents want to know about other types of instructional technologies such as using the Internet, video materials, or distance learning.
We asked organizations what trends they perceived among the families and communities they served that might impact the way that technology-related assistance is provided. One fourth of respondents believed that families are becoming more technologically literate and gaining on-line access, which leads them to have increased expectations of technology's benefits for their children. Even parents who are not especially computer literate themselves are interested learning whether computers might help their children improve their academic skills and sense of mastery. However, respondents were concerned about an increasing "digital divide" between middle class families with access to up-to date computers and the Internet, and families who are poor, ethnic minorities, or residing in rural areas without ready access. These concerns are consistent with the findings of the most recent federal Commerce Department study on the technology gap between low-income and upper income households, a gap that has widened in the last five years (U.S. Department of Commerce, 1999). In our study, interviewees were concerned that low-income parents who own computers tend to have older models that lack the capacity to handle increasingly complex and large Web documents, and that these families will fall behind in their ability to use the Internet as a resource for finding and using technology information.
Respondents also said they had started to receive increasing numbers of technology-related inquiries from families with children diagnosed with learning disabilities. They believed that this was due to increased parental awareness of possible technology solutions for learning-disabled students. However, one of the greatest concerns expressed by organizations was the unavailability of specialists who can conduct competent assessments for assistive technology. Respondent organizations were concerned that assistive technology training is not sufficiently addressed in professional training curricula for speech and language pathologists, occupational therapists, and other specialists, and that recently-developed programs offering certificates or degrees in assistive technology are not producing capable practitioners.
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Relevant programs and organizations that can address parent/family information and service needs
Responding organizations refer parents most frequently to local affiliates of well-known national organizations such as Easter Seals and United Cerebral Palsy for help with assessments, equipment demonstrations and purchases, and assistance in obtaining funding. They also frequently refer parents to their state Protection and Advocacy Systems, local rehabilitation centers, and parent organizations, including Parent Training and Information Centers.
To build their own capacity in technology expertise, organizations most frequently obtain assistance for their own informational resources and staff development from annual conferences such as Closing the Gap and CSUN's Technology and Persons with Disabilities, as well as professional conferences for specialists. They also rely on local chapters of national organizations, state Protection and Advocacy organizations, rehabilitation centers, and parent advocacy groups to provide services that complement their own.
We asked programs who they collaborate with in bringing technology information to parents in their communities. They reported that they often collaborate with organizations that are not in the business of providing technology-related assistance, such as the 4-H Club, the Urban League, or the United Way. Although these organizations are national in scope, these technology-focused collaborations evolved at the local level. These collaborations have been a significant means of bringing technology awareness and information to families who would not seek help from technology-oriented programs or who distrust social service organizations. By holding technology demonstrations at a community health fair or 4-H club meeting, for example, programs bring assistive technology awareness into the mainstream of community life.
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What programs and organizations do to meet families' needs, when theycannot meet those needs, and what they hope to do about it
Organizations surveyed provide information on a wide range of services, including assessment and recommendations, advice on obtaining funding, training family members and children/youth in using devices, and coordinating technology with other educational or rehabilitative services. Although organizations provide information on all types of technology devices, they most frequently offer resources on cognitive and learning aids and communication devices. These are the technologies that families most often want to learn about, and organizations see themselves as responding to these expressed needs.
When we asked organizations what types of families had difficulty getting access to technology assistance, they identified several communities as underserved. Rural families, especially those without transportation or phones, have particular difficulties reaching vendors, assessment specialists, or training sites. Ethnic, cultural, and language minorities often face barriers specific to their groups. These barriers include cultural beliefs about disability, lack of informational materials in their native languages, and low literacy levels in their native languages. For example, one in five respondents note that Latino families, particularly undocumented workers in their areas, face substantial barriers. These obstacles stem in part from the scarcity of Spanish-language materials about technology, as well as a fear of coming to the attention of the INS if they turn to agencies for help or ask schools to provide assistive technology for their children.
One fourth of respondents observed that poor families have particular problems getting technology information because they do not know where to go or what questions to ask, tend to lack basic information about technology, and have difficulty communicating their interests to school systems and service providers. Functionally illiterate parents cannot read brochures or booklets and thus are not effectively reached by outreach efforts that rely on printed or on-line materials.
Organizations are aware of the communities in their areas that are underserved and have employed various approaches to overcome these obstacles. They have provided information in other languages, conducted off-site outreach (including technology demonstrations) at remote locations, and helped local communities develop their own peer information networks. These approaches are often used in combination, and are often done as part of building coalitions with organizations that have local credibility with underserved families and are culturally sensitive to their needs.
Despite these efforts to reach underserved families, organizations and programs still contend with the barriers of families' inexperience and distrust of technology, as well as families' overwhelming pressures of poverty and unemployment. Organizational barriers include lack of resources to travel to distant sites; systemic obstacles include difficulties finding specialists to conduct assessments, and school districts that are reluctant to provide needed technology supports. But by far the most frustrating systemic barrier is the lack of options for purchasing devices for families who do not qualify for Medicaid and lack private insurance coverage, or whose insurance does not cover purchase of needed items.
Organizations plan to address these barriers through several approaches. These include setting up satellite centers and sending mobile vans to distant areas for "hands-on" presentations, increasing the use of on-line resources for parents and educators, hiring more specialized staff, and developing audience-specific materials. Many programs are working to develop innovative strategies to bring technology devices into the hands of families who otherwise could not obtain them.
Project Analyst, INFOUSE
Phone: 510 / 549-6520
FAX: 510 / 549-6512
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