NORTH CAROLINA'S ASSESSMENT OF ASSISTIVE TECHNOLOGY NEEDS FOR INFANTS, TODDLERS AND PRESCHOOLERS WITH DISABILITIES
Lawrence H. Trachtman, M.S.1 and Patsy L. Pierce, Ph.D.2 1North Carolina Assistive Technology Project, Raleigh, NC 2Division of Mental Health, Developmental Disabilities & Substance Abuse Services, Raleigh, NC
ABSTRACT
The Individuals with Disabilities Education Act now requires the provision of assistive technology devices and services to very young children. States often lack information needed to help them financially meet this mandate. A survey was conducted in November 1994 to assess assistive technology service and device needs of children ages birth to five enrolled in North Carolina's infant, toddler and preschool programs. Questionnaires were mailed to 539 agencies statewide. There were 160 responses (29.7%) providing detailed information on 2217 children currently receiving or needing assistive technology devices and services. Responses were received from a diverse sample based on sex, age, ethnicity, service setting and disability. Key findings are presented for costs of unmet equipment needs and current practices for assistive technology device and service provision. Recommendations are made for improved services to this population, including further study of observed trends based on ethnic differences.
BACKGROUND
In 1991, the provision of assistive technology devices and services was added to the Individuals with Disabilities Education Act (IDEA) in both Part H (Infant-Toddler) and Part B (Preschool) programs. According to IDEA, assistive technology devices include any piece of equipment or any supply or material that is purchased commercially, modified, customized or adapted which is used to increase, maintain or improve the functional capabilities of children. Assistive technology services assist in the selection and use of an assistive technology device and can include
¥ assessment of assistive technology needs and the functioning of a child in his natural setting;
¥ acquisition of assistive technology devices including purchase and leasing;
¥ choosing, adapting, repairing, maintaining and customizing assistive technology devices for children;
¥ coordination or use of services or therapies with assistive technology devices;
¥ provision of training and technical assistance for a child and his family; and
¥ provision of training and technical assistance for other service providers, professionals and other individuals who are significantly involved in the care and education of children with disabilities who need assistive technology devices.
Statewide needs assessment for assistive technology is a relatively new phenomenon. Most such assessments responded to passage of the Technology-Related Assistance Act of 1988, and have looked at assistive technology needs of all ages and populations (1, 2). Few studies have focused specifically on the technology needs of very young children across a state (3).
Since 1991, North Carolina has attempted to meet the requirements of IDEA including the provision of assistive technology devices and services. Federal and state Part H funds have been used to meet the assistive technology needs of children ages birth to five who are enrolled in the state's infant, toddler and preschool programs. This study's purpose was to assess assistive technology service and device needs of children, ages birth to five, with developmental delays, those experiencing atypical development and those at-risk for developmental disabilities. Information was also requested regarding monetary requirements for such devices and services to assist state officials in budgetary planning to meet those identified needs. Analysis of survey responses helps to indicate service/device delivery patterns and gaps for young children who have assistive technology needs.
METHOD
In November 1994, a survey was conducted to assess the provision of, and need for, assistive technology for children from birth to age 5 in North Carolina. Using feedback from professionals and families, a survey questionnaire was developed that asked a series of questions for each child a program was serving. A grid-like format was used so that responses for multiple children could be entered on one page. Mail lists were obtained from as many programs as possible serving infants, toddlers and preschoolers with disabilities. Questionnaires were mailed to 539 agencies statewide.
RESULTS
Respondent Demographics
There were 160 responses (29.7%) providing detailed information on 2217 children currently receiving or needing assistive technology devices and services. Survey responses represented 62% male (N=1375) and 38% female children (N=841). All ages from birth through age 5 were represented: 15% birth to 1 year old (N=327); 16% 1 to 2 years old (N=357); 20% 2 to 3 years old (N=436); 21% 3 to 4 years old (N=457); 21% 4 to 5 years old (N=463); and 7% over age 5 (N=136). Caucasian children represented the largest ethnic group at 50% (N=1102) followed by African-American children at 32% (N=717). Hispanic children were the only other significant group at 4% (N=87). The next closest group was Native American children at 0.8% (N=18). The ÒUnknownÓ response was 11% (N=244). Respondents were from Early Intervention/ Developmental Day Programs (31%), followed by Public Schools (27%), Health Departments (17%), Developmental Evaluation Centers (8%), Head Start Programs (4%), Hospitals (3%) and United Cerebral Palsy Centers (2%). Children with developmental delay represented the largest number of respondents (N=656), followed by children with cerebral palsy (N=373), those at risk (N=342) and ÒotherÓ (N=247). All 100 North Carolina counties had children represented. Key Findings
The total cost of needed assistive technology devices for 839 children with disabilities birth to age 5 reporting (41% of respondents in this age group) is $2.49 million based on the dollar amount of all equipment a child is expected to need through age 5, including equipment ordered, equipment needed but not ordered or equipment expected to need. The average annual projected cost of needed assistive technology per child is $508 for children under age 1, $732 for children between 1 and 2, $952 for children between 2 and 3, $1788 for children between 3 and 4, and $3000 for children between the ages of 4 and 5. (Average annual projected cost was calculated by taking the total reported dollar amount needed per child from a given age through age 5 and then dividing by the number of years between their current age through age 5. For example, the average total cost of needed assistive technology per child under age 1 was $2540. Over a five year period the average annual projected cost is $2540/5 or $508. This, however, may not take into account increasing assistive technology needs in subsequent years.)
The average cost of needed assistive technology per African-American child ($2349, N=319) is one-third less than the average cost per Caucasian child ($3570, N=532). This may be due to differences in the prevalence of primary disorders reported for the various ethnic groups among survey respondents. In addition, significantly larger proportions of Caucasian children were reported to need seating and positioning equipment and computers, which can be high-cost items, whereas a larger proportion of African-American children were indicated to need no equipment. The assistive technology devices reported as most frequently recommended and provided for infants and toddlers are adapted toys, seating and positioning systems, learning aids and computers/computer access aids. The assistive technology devices reported as least frequently provided are aids for daily living and augmentative communication devices. The assistive technology devices reported as most needed by children birth through age 2 are learning aids, adapted toys and augmentative communication devices. For children ages 3 through 5, the most needed devices are augmentative communication devices, learning aids and computers/computer access aids. The assistive technology devices reported as most needed by children with developmental delay are learning aids, augmentative communication devices and adapted toys. For children with cerebral palsy, the most needed devices are augmentative communication devices, seating and positioning systems and adapted toys.
For all children reported, approximately half (47%) of needed devices have been provided (55% for children birth through age 2; 42% for children ages 3 to 5). If an assistive technology device was not provided, the reasons most frequently reported are lack of funding (12%), that the device was ordered but not received (8%) and that there were no trained providers (8%). Other reasons included family decision, unclear recommendations, no follow through services and a large other response.
Medicaid was reported as the most frequently used funding source for assistive technology services. (Medicaid does not pay for most assistive technology devices for children in this age group. Medicaid does pay for many technology-related services, such as physical, occupational and speech therapies. It is likely that respondents interpreted this question to mean funding for assistive technology services, thus accounting for Medicaid's high proportion of responses.) The least frequently used funding sources are financial loans, civic/charity groups and nonprofits.
The most frequently provided assistive technology services are evaluation/assessment, child/family training and device selection. The least frequently provided services are device replacement, repair/maintenance, help with funding and customizing equipment. Children of this age group receive most assistive technology services in hospital/clinic settings (18%), Developmental Evaluation Centers (15%) and developmental day programs (14%). Most assistive technology services for infants and toddlers are provided by physical therapists, speech-language-pathologists, child services coordinators, special educators, physicians and occupational therapists.
DISCUSSION
A great deal of data were gathered as result of this effort. The results presented above represent a preliminary assessment of current practices and projected needs. Additional insight can be gained from more detailed review and analysis of the survey results. For example, further study is needed to understand differences in assistive technology needs of various ethnic groups. Based on these results, a larger proportion of African-American children were reported to be Developmentally Delayed than were Caucasian children, whereas significantly larger proportions of Caucasian children were reported to have Cerebral Palsyor to have Orthopedic Impairments.It is critical to determine if identified trends in cost of needed technology are related to differences in disability prevalence (and thus different equipment needs) among these groups, or if they reflect differences in professional understanding and service delivery practices for children from various ethnic or cultural backgrounds. These differences in disabilities and types of equipment needed, if any, may account for the reported differences in average cost of needed devices among Caucasian and African-American children.
In addition, funding, as always, will remain a critical issue. The North Carolina Legislature currently appropriates approximately $1 million annually to meet the assistive technology needs of children with disabilities birth to age 5. Based on this survey's findings, an additional $1.5 million may be needed, with 28% of total equipment funds earmarked for children birth to age 3 and 72% of funding needed for 3 and 4 year olds. There will continue to be a need for providing training opportunities for public and private service providers, especially to increase the availability of follow-along services for families receiving equipment. We can also do a better job at increasing awareness of existing State funding for assistive technology devices and services for children birth to age 5. There is a need to expand funding options for children ages 3 to 5, and especially funding to purchase augmentative communication devices, learning aids and computers/computer access aids. And finally, a tracking system should be established for children identified in this survey to follow through on unmet needs.
It is our hope that future efforts to provide assistive technology devices and services to infants, toddlers and preschoolers with disabilities in North Carolina will both learn from and build upon the results of this needs assessment.
REFERENCES
1. Parette, H.P. Jr. and VanBiervliet, A. Physical Disability and Technology Needs, American Rehabilitation, Spring 1990.
2. Pierce, P. et. al. Technology-Related Needs Assessment Project Final Report, Prepared for the N.C. Council on Developmental Disabilities, April 1991.
3. Parette, H.P. Jr. and VanBiervliet, A. (1991). Rehabilitation Assistive Technology Issues for Infants and Young Children with Disabilities: A Preliminary Examination. Journal of Rehabilitation, 57(3): 27-36.
ACKNOWLEDGEMENT
This survey was conducted by the N.C. Assistive Technology Project, Division of Vocational Rehabilitation Services. Support for this work was provided by the Division of Mental Health, Developmental Disabilities and Substance Abuse Services, N.C. Department of Human Resources through the Division of Maternal and Child Health, N.C. Department of Environment, Health and Natural Resources. Sue McLaurin and Duncan Munn provided guidance to the project.
Larry Trachtman North Carolina Assistive Technology Project 1110 Navaho Drive, Suite 101 Raleigh, NC 27609