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Rehabilitation assistive technology issues for infants and young children with disabilities: a preliminary examination.

A statewide survey of the technology needs of 206 children with disabilities aged 0-5 years was conducted in Arkansas as a component of P.L. 100-407 grant application processes. Unmet needs were reported for these children in all areas of life functioning, with the greatest need categories being use of computers, specialized vehicles, building accessibility, visual aids, and self-help aids. A large percentage of children reported not having had evaluations prior to receiving their assistive devices or the opportunity to purchase assistive devices on a credit plan. Lack of transportation services was reported by most parents, with a majority of parents indicating a need for additional information regarding technology and related services. implications and issues relevant to professionals planning to apply for P.L. 100-407 funding are discussed.

There has been an exponential increase in the utilization of assistive technology in our society, and these technologies have dramatically impacted upon the quality of life for all persons. Assistive technologies are not only the tools of the future, but they are increasingly important compensatory and instructional implements of today. For persons with disabilities, particularly infants and young children, the promise of technology holds exciting possibilities (Cain & Taber, 1987; Goldenberg, Russell, & Carter, 1984; Kinney & Blackhurst, 1987). Technology provides a range of options that enable even the most seriously impaired children maximum opportunities to participate fully in the mainstream of our society (Cavalier, 1988; Green & Long, 1980; Parette & VanBiervliet, 1990b).

The term assistive technology has been defined in various ways by professionals across the education and rehabilitation disciplines. For example, one recent definition offered by Reynolds and Mann (1987), suggested that assistive technology was applicable to a wide range of highly specialized mechanical, electronic, and computerized tools which are commonly used in both rehabilitation and special education settings. Generally, such technologies are designed to perform specific orthotic or prosthetic functions, though they are not prostheses or orthotics in the traditional sense. Such a definition, then, would include positioning and mobility devices, augmentative communication aids, computer applications, adaptive toys and games, electronic interfaces, and adaptive environments (Brady, 1988; Garner & Campbell, 1987; Hofmeister & Friedman, 1986).

More recently, the passage of P. L. 100-407, the TechnologyRelated Assistance for Individuals Act of 1988 defined assistive technology in a broad sense, encompassing virtually anything that can be used to enhance the lives of persons with disabilities. Assistive technology, as defined in P. L. 100-407 is:

... any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. [29 U.S.C. 2202, Sect. 3(l)]

Assistive technology has been demonstrated to enhance both the educational functioning and independence of persons having a wide range of disabilities such as visual and hearing impairments, communication and movement disorders (Bigge, 1982; Enders, 1984). When assistive technology is applied to a particular child, it is typically with two major purposes in mind: (a) to correct or remediate a specific impairment; and (b) to assist a child to learn specific material and/or to learn specific tasks (Gamer & Campbell, 1987).

For infants and young children who have disabilities, the availability of needed assistive technology can often enable the child to overcome obstacles that might otherwise be encountered during the child's interactions with the environment (Behrmann & Lahm, 1983; Fewell, 1983; Langley, 1983). Similarly, the acquisition of developmental skills, as well as the facilitation and automation of therapeutic activities have been shown to result from the use of assistive technology across a number of learning settings (Vanderheiden & Dolan, 1985).

Role of the Federal Government

The federal government has voiced its recognition of the importance of technology in the lives of infants and young children through the enactment of numerous pieces of legislation, each having important implications for service delivery to this population. Generally, the laws can be broken into the areas of health care, home and community-based services, and education. Each of these areas will be discussed in turn, with major legislation affecting technology service delivery to young children with disabilities being discussed briefly. Health Care

Two specific components of the Social Security Act, Budget Reconciliation Act of 1986 (P.L. 99-509) contain language which relates to the provision of assistive technology to young children with disabilities. These include Medicaid (Title XIX) and the Maternal and Child Health Services Block Grant (Title V). Other legislation which impacts upon health care and related assistive technology service provision includes the TechnologyRelated Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407).

Medicaid (Title XIX). This program is a federally matched, state-run medical assistance program for eligible low-income persons. The federal government establishes guidelines for the program and pays a portion of each state's medical assistance payments, ranging from a low of 50% to a high of 80% Wright, 1990). States are required to provide certain services including outpatient, inpatient, health screening services to children under age 21, and physician services; however, they can elect to provide other services as well.

Assistive devices may be considered for Medicaid payment if they fit the definition of a prosthetic device. A prosthetic device means replacement, corrective, or supportive devices prescribed by a physician or other licensed practitioner. It is also possible that assistive technology services/devices could qualify under "other diagnostic, screening, preventive and rehabilitation services." The states differ markedly in their interpretation of eligible Medicaid services. For example, some states may provide Medicaid payment for augmentative communication devices, while other states may disallow the payment because such devices are not deemed to be prosthetic in nature (Cohen, 1989).

Maternal and Child Health (MCH) Block Grant. This block grant program enables states to develop or enhance existing service delivery systems to assure that children with special medical needs have access to primary health care services. States are given wide latitude over the structure of programs provided under the block grant program, as well as target populations served and services provided. Monies may be used for a broad array of services including early identification and intervention services, diagnostic and evaluation services, family support services and for "medical, surgical, and corrective services". Some states currently use their MCH funding to purchase wheelchairs and other adaptive equipment or assistive devices for young children with disabilities.

States may elect to offer Medicaid services to children living at home without the consideration of family income by modifying the state's Medicaid plan in accordance with the Tax Equity and Fiscal Responsibility Act (TEFRA) passed in 1982 (Section 134 of P. L. 97-35). A wide range of assistive devices may be purchased via the TEFRA mechanism, dependent upon the definitions used by the various states for potential beneficiaries. As of 1988, only 22 states have amended their state Medicaid plan to add the TEFRA-134 coverage option.

Under current law (Omnibus Budget Reconciliation Act of 1990, P. L. 101-239), all states participating in the Medicaid program are required to offer Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program services to children under age 21. The states are required to inform all Medicaid-eligible children of the availability of EPSDT services, to provide (or arrange the provision of) screening services in all cases when they are requested, and to arrange for (directly or through referral to appropriate agencies or providers) corrective treatment for which the child health screening indicates a need. Nowhere in the legislation is assistive technology precluded for those children electing to receive EPSDT services. The legislation specifically dictates that states treat any physical or mental problem identified during the screening and assessment process. Such "treatment" is coverable under Federal Medicaid law even if these "treatments" are not contained in the State's Medicaid plan.

The Technology-Related Assistance for Individuals with Disabilities Act of 1988 (P.L. 100-407). The most important federal mandate which recognizes the importance of technology and technology-related assistance to children with disabilities is P.L. 100-407. This law expands the availability of assistive technology services and devices to persons with disabilities of all ages through the development of a discretionary grant program. The purpose of the law is two fold: 1) to establish a grant program that would assist states in developing and implementing a statewide program for the delivery of assistive technology; and 2) to involve the federal government in the delivery of assistive technology.

Under Title 1, the Secretary of Education will make awards to states through a competitive grants program to develop model consumer-responsive statewide systems of technology-related assistance for persons of all ages with disabilities. States may also use funds to fund assistive technology and services for young children with disabilities, an option which several states have already implemented under the legislation (RESNA, 1989). Home and Community-Based Services

Developmental Disabilities Assistance Act Amendments of 1987 (P. L 100-146). This law was enacted to provide assistance to states and public and private nonprofit agencies to plan and conduct activities for persons with developmental disabilities. Reauthorized in 1987, three new amendments were added to the Act in the area of rehabilitation technology services, including the addition of a definition of assistive technology services, delineation of the state plan option in the area of rehabilitation technology, and specification for the use of funds.

For purposes of the legislation, assistive technology services were defined as "the systematic application of technology, engineering methodologies, or scientific principles to meet the needs of, and address the barriers confronted by persons with developmental disabilities in areas including education, employment, supported employment, transportation, independent living, and other community living arrangements." In several of these areas, assistive technology services could be provided to infants and young children with disabilities.

The federal government requires each state to submit an annual state plan detailing their proposed activities. As part of this report, there must be an analysis of the types of assistive technology services which are needed, but currently unavailable to assist persons with developmental disabilities. Funds under P. L. 100-406 may be used for planning, advocacy, systems change and direct services, including rehabilitation technology services. Education

Two significant laws contain language enabling the provision of assistive technology and services to infants and young children with disabilities. These include the Individuals with Disabilities Education Amendments of 1990 (P. L. 101-236), and the Elementary and Secondary School Improvement Act of 1987 (P. L. 100-297).

Individuals with Disabilities Education Amendments of 1990 (P. L 101-236). Public Law 101-236 amended the Education of the Handicapped Act while reauthorizing its discretionary programs for five years. This new legislation defines assistive technology devices for the first time, using a broad interpretation consistent with previous legislation (P.L. 100-407). As defined in P.L. 101-236, an assistive technology device is any equipment used to increase, maintain, or improve the capabilities of disabled individuals.

Assistive technology services are also now defined in the new legislation. They include: (a) evaluating persons with disabilities; (b) acquiring assistive technology services; (c) selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices; (d) using therapies with assistive technology devices; and (e) training for individuals who provide services for persons with disabilities.

Whereas technology could at one time be provided as a related service under P.L. 94-142, it can now be specifically provided as a defined service. Similarly, the Early Education for Children component of P.L. 101-236 authorizes new priority areas, which includes the promotion of the use of assistive technology. Hence, individualized family service plans (IFSP) must now include the provision of technologies appropriate to meet the needs of young children and families.

Elementary and Secondary School Improvement Act of 1987 (P.L 100-297). This Act consolidates numerous elementary and secondary education efforts into one reauthorization Act. It includes such programs as Chapter I and 2 (Programs for Disadvantaged Children), Head Start, Bilingual Education, Magnet Schools Program, and Programs for Handicapped Children (P.L. 89-313).

In Part D, Subpart 2, entitled Programs for Handicapped Children, there is authority for funding assistive technology programs and the acquisition of equipment to supplement special education and related services (such as occupational therapy, physical therapy, speech and language services). The acquisition of equipment and instructional materials and training in the use and provision of assistive devices and other specialized equipment are listed as possible services to be included in this program. implications for State Technology Planning

As states begin to examine how their systems of technology service provision for infants and young children with disabilities can be enhanced (RESNA, 1989), greater involvement in the processes of P.L. 100-407 may be anticipated. It is specified that one of the activities which states may use funds for under this act is to carry out a statewide needs assessment to obtain information on the scope and types of services to be provided. Under this needs assessment, states are also required to examine existing funding sources available for the payment of assistive technology. Response from the State of Arkansas

Prior to the enactment of P.L. 100-407, a group of persons representing six public and private agencies in Arkansas developed a grant proposal focusing on the technology needs of persons with disabilities. The resulting project, Technology Access for Arkansans (TAARK), was designed to: (a) identify the need and quality of technology provisions in Arkansas; b) to disseminate information about the appropriate technology and funding; (c) to educate Arkansans about technology and funding; (d) to educate Arkansans about technology and advocacy; (e) to develop a coordinated state plan; and (f) to provide technical assistance to the Governor's Developmental Disabilities Planning Council (DDPC). The project was funded in part through the DDPC and in part through the University of Arkansas-University Affiliated Program (VanBiervliet, 1988). Soon after this project was funded at the state level, the federal technology legislation was enacted in August of 1988 providing the impetus to develop a broad state plan addressing the technology needs of persons with disabilities, as well as to develop an application for federal funding under P.L. 100-407.

An important concern of many persons involved in the state technology planning activities coordinated by the TAARK project was the needs of young children with disabilities. It was suspected from the outset that some funding mechanisms for technology were used with less frequency than others. Similarly, the fragmented nature of the service delivery system in the state suggested that other technology service delivery options were inadequate to meet the needs of young children with disabilities. Additionally, there were many concerns which related to the design of a comprehensive system of technology-related assistance for young children with disabilities, as well as other age groups.

This study focuses on a survey of the technology needs and related services of a sample of infants and young children with disabilities in the State of Arkansas. The survey was conducted as part of the P.L. 100-407 grant application process. The results were used to clarify questions which could be addressed in state technology planning processes. The study identified areas of technology-related service provision that might potentially be of concern to policy-makers in Arkansas and other states. The data which are described were an important component of a federal grant application which resulted in Arkansas being one of the first nine states to receive funding under P.L. 100-407. Implications which are drawn from this exploratory investigation may serve as a framework for the development of planning strategies used by other states. Method

After state funds were awarded to TAARK in January of 1989, a Coordinated Planning Committee of 17 individuals representing a cadre of state, private, and consumer organizations in Arkansas met and discussed the implications of Public Law 100-407. Since little information existed relating to the technology needs of persons with disabilities in Arkansas and other states around the country, a decision was made to conduct a survey of persons with disabilities in the state to gain information to be used for planning a comprehensive service delivery system. A Consumer Needs Study Group was organized to draft a survey instrument which would assess the technology-related needs of persons with disabilities across a variety of areas of functioning as well as to explore targeted areas for planning. The resulting instrument was subjected to a series of reviews and modifications by the entire Coordinated Planning Committee which, by May of 1989, had grown to 48 individuals including persons with disabilities, family members, vendors of technology, and representatives of 25 different public and private organizations.

Consumer survey. Each of the participating members of the Coordinated Planning Committee was requested to provide a mailing list of persons with disabilities and/or consumers. Consumers were defined in a broad sense, given the fact that all persons in our society use and benefit from technology in various forms (Parette & VanBiervliet, 1990a; Office of Technology Assessment, 1982). Approximately 12,000 mailing labels were submitted for use in the consumer survey, constituting a sample of consumers with a wide range of disabilities. Return envelopes were included in the mailout of 12,000 survey instruments. Surveys were mailed during the first week of April 1989.

Inter-data entry reliability. Data from returns were entered into a computer system by four project staff personnel. All records were entered on a PANORAMA (ProVUE Development Corporation, 1988) database in which a simulated survey instrument was visible to data entry personnel. Data entry reliability was determined by examining a random sample of 10% of the returned consumer survey forms and comparing data entered in the computer to the survey forms. Since data were entered in a visible screen section, or window, relating to the actual survey instrument, a data entry error rate ranging from only 0 to 5% for various items occurred. Most errors occurred on items requiring the data entry staff to interpret open-ended or fill-in-the-blank responses, e.g., name and address. Survey Results of Infants and Young Children with Disabilities

Demographics. A total of 2201 consumer survey forms were received, reflecting a return rate of approximately 20%. Examination of the survey responses indicated a representation of all counties in the state, and that the return rates from these counties typically mirrored population densities of these counties as reported by available Census data. Also, all age groups were represented among the survey respondents. Of the total respondent class, children ages 0-5 years represented approximately 9.5% (n = 206). For this subsample, reports of disability category provided by the parents, guardians, or primary caregivers reflected a wide range of disabilities: speech problems (75%); learning problems (60%); mental retardation (39%); physical handicap (51%); visual problems (30%); auditory problems (25%); heart problems (10%); breathing problems (16%); emotional problems (8%); head injury (7%); and other (40%). These disability categories are obviously not mutually exclusive, but the design of the survey instrument was simplistic and oriented towards persons having marginal reading levels.

The mean age for the participants in the survey was 3 years with a range of 1-5 years (note: children's ages less than 1 year were rounded to accommodate data entry). The number of participants from each age group and percentage of the total early childhood respondent class were as follows: I year or less (n = 15; 7%); 2 years (n = 30; 15%); 3 years (n = 56; 27%); 4 years (n =53; 26%); 5 years (n = 52; 25%).

Levels of satisfaction. Respondents were asked to report whether or not they used assistive devices/services in 15 areas as reflected in Table 1. They were also asked to indicate whether or not they had an unmet need for assistive devices/services in these respective areas. It should be noted that the areas are not mutually exclusive, and respondents might have had difficulty determining which devices might fall into particular categories. Also, some respondents might have perceived a need that was not legitimate, e.g., responding that a need for computers existed simply because the person had heard of them.

Technology usage was reported in all areas of life functioning. As noted in Table 1, the areas in which technology was most often used as reported by the respondents were recreation (35%), followed by self-help (34%), getting around (32%), and school training (25%). Unmet needs were also reported in all areas of life functioning. In some of these unmet needs categories (taking care of the home; talking with others; reading, writing, and typing; things that help you see; building accessibility; and specialized cars, vans, and buses) consumers reported umuet needs more often than usage. In two categories, using a computer and using a telephone, there was a substantial discrepancy between the percentage of respondents using technology in these areas and those having unmet needs. The number of children having unmet needs in using a computer was almost 8 times that of those actually using computer technology. The number of children having unmet needs in using a telephone was more than 5 times that of those who use telephone technology.

Expenditures for assistive technology. Consumers were asked to report their expenditures for devices, services, and/or maintenance of technology in 1988. As noted in Figure 1, 30% of the respondents reported spending less than $100 for technology devices and services. Expenditures of between $100 and $500 were reported for 10% of the respondents. Larger expenditures for technology in the range of $501-$1000 were reported for 14% of the respondents, and for 17% personal costs of $1001-$5000 were reported. Expenditures for technology exceeding $5,000 in 1988 were reported for only 4% of the participants. One quarter of the survey respondents reported they did not know how much they spent on assistive technology.

Only 20% of the respondents reported that they had an opportunity to purchase assistive devices on a "buy-on-time" or credit plan (see Table 2),while 63% of the participants reported that such a plan would be helpful to assist them in purchasing needed devices.

Travel practices. Regarding travel practices pertaining to assistive technology and services, participants were asked: How far did you have to travel to get the assistive devices/services that you receive? The design of the survey instrument did not enable a differentiation of travel in those cases where children may have used a variety of devices or services. Also, no delineation was allowed for participants to report whether or not travel was required to initially receive technology services, or travel for the maintenance/service of their technology. The question also did not enable the differentiation between regular school bus transportation to and from school services, special transportation for evaluations, for ongoing training, or to pick up assistive technology.

Eleven percent of the respondents reported that no travel was involved in order to receive assistive devices/services (see Figure 2). Over one third of the respondents (36%) reported traveling only 1-50 miles to receive their assistive devices/services. A large number of respondents (22%) indicated having to travel over 50 miles to receive assistive devices/services, and 31% reported travelling over 100 miles in order to receive needed assistive devices/services.

Transportation services. Participants were asked the question, Are transportation services being provided to you?" It was reported for the majority of the infants and young children (70%) that no services were currently being provided.

Funding sources. A wide range of funding sources for assistive devices/services were used by survey respondents. The three most frequently reported mechanisms for funding assistive devices/services were Medicaid (44%), the consumer and/or their family (36%), and private insurance companies (28%). Interestingly, only 2% of the respondents reported that assistive technology was provided through the public school systems.

Levels of satisfaction. Although survey forms were completed for 206 respondents, many of the forms were incomplete in which persons failed to answer questions regarding levels of satisfaction with technology and related services. Table 2 reflects levels of satisfaction reported for respondents in a number of issue areas. A majority of respondents (83%) reported that they participated in an assessment or evaluation prior to obtaining their assistive devices/services. A comparable percentage of respondents (83%) reported that they were satisfied with the services they received for their assistive devices. However, 69% of the respondents, reported that more information was needed regarding assistive devices/services. This need for information was supported by the high number of unmet needs reported in all categories of assistive devices/services (see Table 1).

Over one third of the respondents (37%) reported that they did not receive adequate training in the use of their devices. An even larger percentage of respondents (62%) reported that they did not have an opportunity to try out devices before being required to pay for them. Forty percent of respondents expressed dissatisfaction with the length of time required for the servicing or repair of their devices.


Generalization of the Arkansas data pertaining to infants and young children with disabilities is limited. Even though a 20% response rate was obtained from consumers in the overall survey, only a small sample of the total population of persons with disabilities was surveyed from across the state. Given that approximately 45,000 children with handicapping conditions under the age of 18 have been reported in Arkansas (U.S. Department of Education, 1989), perhaps it would have been more appropriate to have sampled children through the public schools and/or through the State Department of Education. The persons with disabilities surveyed in this project represent the clientele of a limited cross section of agencies known to be involved in service provision to persons with disabilities. It is unclear how well the survey respondents represented the total population of persons with disabilities in Arkansas or elsewhere.

Other states responding to P.L. 100-407 grant competition initiatives may have greater flexibility to design more rigorous sampling procedures, which would provide a more representative data base having implications for other parts of the country. It was also recognized that there were substantial limitations inherent in the design of a survey instrument that (a) involved large committee participation in the processes of instrument design, (b) had to be developed relatively quickly using group processes, and (c) was relatively easy to understand by persons having marginal reading levels. These factors operated to impose certain constraints upon the design of the survey instrument, and such factors must be considered by other states wishing to optimize consumer and parent usage in the design of such instrumentation.

However, one of the many strengths of the Arkansas approach to state technology planning indicated by the field reviewers was the consumer survey, which was unique among the first 9 state applications to receive funding under P.L. 100-407. As such, the approach has value that should be given consideration by other states participating in state technology planning (Note: A copy of the survey instrument is available from the senior author on request).

Perhaps the greatest benefit of the study was the identification of unmet needs. The frequency of unmet technology needs in varying areas of life functioning suggests that there may be significant numbers of young children with disabilities who are being inadequately served. Similar needs have been reported by other states receiving initial funding under P.L. 100-407 (RESNA, 1989). Coupled with reports of unmet needs, data obtained about technology issues from this preliminary investigation suggests several areas that should be examined more closely.

Computer technology. Given the fact that states have only been recently mandated to provide educational services to infants and preschoolers through the public school systems, it would be expected that computer technology would not be widely used with this population as yet. A recent national survey of special education teacher preparation programs (Blackhurst & MacArthur, 1986) indicated that most institutions of higher education report a need for technology training. Technology needs data from a survey of a large sample of professionals in Arkansas (VanBiervliet & Parette, 1989) have indicated that professionals generally express deficits in their college preparatory training. It is reasonable to assume that if colleges and universities are currently reporting needs in this area, that teachers and other rehabilitation professionals in the field have inadequate skills and are themselves failing to apply existing technologies to this new service population. The low incidence of technology funding via the public schools and other state agencies as reported for the survey respondents in the Arkansas sample of infants and young children seems to support this observation.

Information Systems. This exploratory study lends support for the need expressed by many states for organized information systems (Governor's Task Force on Technology and Disabilities, 1987; Hofmann, 1990; Issue Team on Technology and Persons with Disabilities, 1986; RESNA, 1989). Currently there are many systems, e.g., databases, networks, bulletin boards, that contain information relevant to persons with disabilities. However, parents of young children with disabilities, as well as many professionals involved in service delivery to this population, are unfamiliar with these sources for information and often do not know where to begin to look for needed services or assistance (Governor's Task Force on Technology and Disabilities, 1987; RESNA, 1989). In the Arkansas survey, a needs for more information in all areas of assistive technology was identified. Other states have voiced similar needs for information availability on the increasing volume of assistive devices and products (RESNA, 1989).

It has been suggested that information systems must have certain characteristics to make them fully accessible to parents and professionals involved in service delivery to infants and young children with disabilities (Governor's Task Force on Technology and Disabilities, 1987; RESNA, 1989). For a younger population, important components would include: * The system must provide information relating to young children with a wide range of disability types and their families. This will enable relevant information regarding this population and their technology needs to be obtained by as wide an audience as possible. * The system should be accessible to all persons, regardless of their level of technological expertise, degree of disability, or availability of equipment. The system should also allow for multiple levels of entry as well as a variety of entry points into the information system. * The system should facilitate interactive communication among users, with information flowing both from the periphery to the center, and from the center outward. Parents, professionals and others involved in service delivery to younger children with disabilities would be able to exchange information, such as experiences in using specific types of technology with children having specific technology needs. * State-of-the-art technology must be employed in the design and operation of the system database. This includes the use of a comprehensive and dynamic database that will entail ongoing maintenance, support, and enhancement. Such a database would include information regarding where services for infants and young children and their families can be obtained, what technologies are available, and what funding resources are available for assistive technology. * The system must have some accountability or quality control component, enabling parents or service providers to input information regarding satisfaction with services received for infants and young children having disabilities. It should also track usage of the system, and allow for suggestions to be made regarding improvements in the system. * The system must have the commitment of an organized management structure responsible for design, development, implementation, and on-going maintenance and support. Whatever agency is charged with the role of managing the information system should have the requisite software, hardware, and management expertise to support a complex system. In addition, the entity must have the required resources to engage in public awareness activities. * The system must have the capacity to connect existing databases of information relating to infants and young children with disabilities. This will prevent those involved with maintaining the system, as well as those accessing it, from having to recompile existing information and maximize the utilization of available resources. This might entail the sharing of common information bases across a multitude of state and private agencies. * The system should enable children, their families, and professionals multiple levels of access. This assumes that geographic boundaries would not hinder access and that many levels of complexity would characterize the information base. * The system should be designed with a security component, facilitating access by only those who wish to use it for legitimate purposes.

An innovative approach to the design of a comprehensive information system has been described by VanBiervliet (1990). This system incorporates state-of-the art hypermedia concepts and methodologies. Hypermedia is an information storage and usage design that enables text, graphics, animation, and sound to be combined and outputted to suit individual needs. Any piece of information can be connected and outputted with any other piece of information enabling an operator to find out as much or as little about a topic as is needed. Use of these technologies will enable the information system to evolve with needs and to maintain more flexible output and input for future developments. Appropriate use of the hypermedia approach will enable the system to output information to meet the needs of a broad range of consumer needs through a wide range of form, such as print, Braille, audio, and visual. This system will also consist of links to the Hyper-ABLEDATA program (Smith, Vanderheiden, Berliss, & Angelo, 1989) which contains text, pictures and audio information about 17,000 assistive devices, as well as other database information. Any information in the system could be provided over the phone and immediately printed (in large print or Braille if necessary) or electronically stored on disk and mailed to a caller accessing the system. The information could also be read onto audio tape and mailed.

Problems inherent in such sophisticated systems have yet to be fully understood. However, a great body of data will be compiled in the years ahead relating to information systems as experiences with and evaluations of statewide systems increase. As this database expands, qualitative improvements in information services will occur.

Decentralization of services. It has been suggested that, in light of service delivery system resource constraints (Barnett, 1988; Smith & Strain, 1988), there is a trend toward more centralized support programs to provide needed information, expertise, and resources accessible to young children with disabilities (Elting, 1987). However, the language of P.L. 100-407 very clearly emphasizes the creation of "consumer-driven" systems of technology-related assistance, placing emphasis upon the needs of individuals as opposed to agencies and bureaucracies which have historically functioned to perpetuate themselves. The focus on the child and family in P.L. 99-457 also suggests a need for less centralized service delivery systems that can adequately meet the needs of all young children with disabilities. It is difficult to imagine how centralized services can adequately meet the needs of children and their families, especially in rural areas where services are generally fragmented or nonexistent. Support for decentralization of services can be seen in the Arkansas study data wherein the majority of respondents reported travel exceeding 50-100 miles to receive assistive technology and services (see Figure 2). Other states have also reported a need for less centralized patterns of technology service delivery (RESNA, 1989).

Expanding the use of funding options. While technology can contribute to the independence and ability of infants and young children to interact with the environment (Brinker & Lewis, 1982; Finnie, 1974), families and service providers frequently face significant financial barriers in attempting to obtain needed technology. Increased flexibility under several existing state programs can facilitate the availability of devices and services, without forcing children into programs that are inappropriate to meet their needs.

In the initial examination of the Arkansas study data, there appeared to be an inadequate number of providers of technology services. Medicaid was the most frequently employed funding source for assistive technology, though the criteria of "medical necessity" to receive technology services under Medicaid is very limited, particularly in Arkansas (Markowicz & Reeb, 1989). Typically, only limited technologies in the areas of ambulatory aids, mobility aids, bedroom aids, and sensory and communication aids can be purchased through the Medicaid system, though considerable variations exist across the country.

Examination of the first nine state proposals funded under P.L. 100-407 (RESNA, 1989) indicates that these states express a need for Medicaid buy-in insurance options for persons with disabilities who have no or limited health insurance coverage. This would allow families of young children with disabilities to purchase Medicaid coverage regardless of whether they are Medicare eligible and/or Medicaid eligible. Fees under such a framework would be on a sliding scale according to family income (Hofmann, 1990; RESNA, 1989).

There is also an expressed need for Medicaid to provide optional services across the states through the expansion of its definition of durable medical equipment. However, the Medicaid system must also help the states differentiate between what a "medical necessity" and a convenience is-important concepts in decisions made regarding funding for assistive devices under Medicaid regulations.

In the Arkansas study it was found that the families of infants and young children with disabilities were the second most frequent source of funding for technology reported. This supports the reports of other states (RESNA, 1989) that there is an additional need for statewide training programs for individuals and families on how to access the Medicaid system. Examination of the Arkansas survey results relating to purchasing practices for assistive devices/services indicated that over half of the families of infants and young children with disabilities did not have access to some type of credit or time payment program. This need has been reported in other states around the country (Mendelsohn, 1989; Office of Technology Assessment, 1982). In the past five years, several strategies have been developed for credit-based or loan systems. Examples include the direct loan model established under the New York State Equipment Loan Fund for the Disabled and California's Handicapped Transportation and Supported Employment Loan Guarantee Programs (Mendelsohn, 1989). In the private sector loan programs are being developed through banks and other agencies with the rationale that with planning, persons with disabilities are good risks for loans and credit purchases. From a human potential perspective, it makes good sense to invest in technologies for any child early in life, particularly when they would optimize later functioning and diminish resource allocations necessary for the person in adulthood (Barnett, 1988).

Hands-on experiences prior to payment. Forty percent of the Arkansas survey respondents were unable to try out their technology before paying for it. This contrasts sharply with the public's ability to have hands-on experience with other goods that they wish to purchase. As a result, they must rely on the judgments of the professionals involved in selecting the technologies for them. The opportunity for infants and young children to try out a particular technology before they, or funding agencies, make a financial investment in it is considerably important in view of the current practice of requiring full payment before an assistive device is ordered Pfrommer, 1984).

Many times, technologies are selected primarily because they are familiar to the professional, or because competing interests are existent, e.g., the professional is a consultant for a company/vendor of the technology. In other instances, technologies may be selected solely due to fiscal considerations. In either instance, inappropriate technologies may be acquired for the child with a disability (Cavalier, 1989; Office of Technology Assessment, 1982; Pfrommer, 1984).

Given the relatively recent recognition by the federal government of the importance of early childhood programming, as well as the impetus for providing a wide range of rehabilitation services to all persons with disabilities, a significant number of professionals will be ill-prepared to make informed decisions about what constitutes appropriate technology. This presents an added challenge to institutions of higher education who are charged with the responsibilities of training professionals who will be providing future services to this population. Similarly, there is a need for more comprehensive in-service training for professionals who provide services to infants and young children with disabilities.

Transportation. Transportation is a crucial service for persons with disabilities, particularly in rural states such as Arkansas where there is a tendency to centralize resources in the larger metropolitan areas. Without transportation to centralized services, consumers may be systematically denied needed technology and related services that can enhance the quality of their lives (Governor's Task Force on Technology and Disabilities, 1987; RESNA, 1989).

In the process of compiling information for the Arkansas grant application, a cooperative agreement was initiated with the Arkansas Highway and Transportation Department (AHTD). This state agency was preparing to develop its own 5-year transportation plan and subcontracted data collection methodologies with the Technology Access for Arkansans (TAARK) project. Several questions were included in the TAARK survey instrument which would assist AHTD in compiling needed information relating to the transportation needs of persons with disabilities of all ages in the state. AHTD, in turn, subsidized a significant portion of the statewide needs survey and data analysis used for the P.L. 100-407 grant application. A formal report was then compiled and made available for public dissemination (VanBiervliet & Parette, 1990). This reflected a unique collaborative relationship that could serve as a model for other states wishing to maximize the use of existing resources through the coordination of planning with other state agencies.


As we prepare to enter the 21st century, it must be remembered that infants and young children with disabilities, such as those reported in this preliminary study, are the adults of tomorrow. In order for them to maximize their potentials, they must be prepared to live in a new kind of world, one which involves access, manipulation, and control of information and the environment. This presents a tremendous challenge to professionals to expand their understanding of the needs of this population as well as to remain informed users of advancing technology. Hopefully, the issues discussed herein will provide a better framework for designing and managing technology service delivery systems for young children with disabilities in the future.


Project TAARK is funded in part by Grant No. 89-554 from the Arkansas Governor's Developmental Disabilities Planning Council, funded in part by the University of Arkansas at Little Rock, and funded in part by the University of Arkansas-University Affiliated Programs on Developmental Disabilities.

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Author:VanBiervliet, Alan
Publication:The Journal of Rehabilitation
Date:Jul 1, 1991
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