Inadequate Funding Impacts State DeafBlind Projects in the United States

Abstract

DeafBlindness is defined in the United States by the Individuals with Disabilities in Education Act (IDEA) Part B as “concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness” (see 34 CFR §300.8; 2004). (In this Comment, I use the unhyphenated “DeafBlind” following suit of DeafBlind-led organizations. I also use personand identity-first language to give respect to people who prefer either approach.) Approximately 1% of children who are DeafBlind have profound hearing loss and total blindness (National Center on Deaf-Blindness, 2022). Generalist special education professionals are not positioned to address the unique needs of children who are DeafBlind (Alsop et al., 2000, p. 12; Okungu et al., 2020), one of the lowest incidence populations of children with developmental disabilities with substantial diversity in etiology (National Center on Deaf-Blindness, 2022). Due to the shortage of professionals and the diversity in presentation of DeafBlindness, many states do not have the capacity to provide DeafBlind-focused educational professionals to students (Howley & Howley, 2021; Howley et al., 2017). Recognizing the effect of DeafBlindness on childhood development and primary and secondary education, the United States allocates funds for State DeafBlind Projects (“projects”) and the National Center on Deaf-Blindness, which is collectively known as the “DeafBlind TA Network.” The DeafBlind TA Network provides technical assistance and dissemination services, funded by the U.S. Department of Education’s Office of Special Education Programs, to meet the needs of families and educational providers with children and young adults (birth to age 21 years) who are DeafBlind. DeafBlind program funds are established by Section 682 of IDEA [20 USC §1482(d)(1)(A); 2004] requiring a minimum $12,832,000 to address “the educational, related services, transitional, and early intervention needs of children with [DeafBlindness].” This minimum was established in 1997. During grant cycles between 1997 and 2022, the total allocation to the DeafBlind TA Network did not change. In 2023, however, Congress approved an increase of $1,000,000 leading to an average 10% increase in statespecific project budgets for the first time in 25 years (U.S. Department of Education, 2023). Although the funding allocated to projects has only recently increased, the salaries of project staff members and the cost of goods have increased annually. For example, in 2014–2015, the majority of projects were based in university settings where cost of living adjustments occur.