The Impact of the U.S. Department of Education in the Lives of People Who Are Blind, Low Vision, or Deafblind
Editors’ Note: In the current atmosphere of uncertainty and threat, it is essential for us to understand what our field and those we serve would lose if the U.S. Department of Education is dismantled or reorganized in ways that diminish its services to students who are blind, low vision, or deafblind. In this issue of TNR, we provide a guest editorial by Dr. Amy Parker in which she illustrates the impact the U.S. Department of Education has had on the education of students we serve. Through its wide array of resources, services, and materials and the interconnectivity of its divisions with local programs, the department has enriched and expanded learning opportunities for students with disabilities. It is our hope that this guest editorial will stir an awareness of the essential role that the Department plays in developing and maintaining resources and programs that our students require to become independent, contributing citizens. While the final outcome may be in the hands of the court, we encourage our readers to contact their senators and representatives to make known the need to preserve the services our students need and deserve. The next issue of TNR will include a follow-up article that details the history and evolution of the U.S. Department of Education as it relates to services for students with disabilities.
Guest Editorial
The Individuals with Disabilities Education Act (IDEA) is one of the strongest civil rights laws for children with disabilities in the world. To implement this law, the U.S. Department of Education (ED), through its Office of Special Education Programs (OSEP), creates regulations, administers congressionally appropriated funds to states, and supports technical assistance projects through multiple organizations for all students with disabilities. Whereas the recent efforts to defund and destroy the ED are harmful to all American students, those with low-incidence disabilities, particularly those who are blind or deafblind, are at increasingly serious risk for harm by the potential loss of the leadership that OSEP provides to state partners.
The national support that ED provides to states and districts takes place in many forms. These include but are not limited to grant making to universities to prepare qualified personnel, technical assistance and dissemination of information, structures to enable the identification of children who qualify for special educational services (Child Find), protection of the students’ civil rights, and support for innovative technologies and demonstration projects. Without the agencies housed within and coordinated by the ED and its vast array of effective programs and supports, integrated services to individuals who are blind, low vision, or deafblind would not be available and would likely be impossible to achieve.
Children and youth who are blind, have low vision, or are deafblind are often served by state and local school systems that may rarely encounter students with such intense needs. Because of this, local systems are not likely to have available expertise for addressing the students’ needs necessary to receive free and appropriate public education (Howley et al., 2017). ED and its national predecessors have addressed some of these critical gaps in knowledge and support for educators, families, and school systems through iterations of dialogue that inform funding priorities.
Illustrating the Interconnectedness of ED and Local Entities
Perhaps the story of one young student is the most helpful way to illustrate the powerful role of the ED and the interconnection of its various agencies with local education systems.
Imagine that a deafblind child with CHARGE syndrome is born in Savoonga, Alaska. At birth, the newborn hearing screening helps the visiting doctor detect the child’s hearing loss. The child’s health care needs lead the family to a neonatal intensive care unit in Nome for the first few months of his life.
Within the child’s home village, local health care and educational providers are unaware of the needs of individuals with CHARGE syndrome. Through the connection in Nome, the family and the child’s early intervention team find out about the Alaska DeafBlind Project housed at the Special Education Services Agency (SESA), a federally funded technical assistance project. From this connection, the director of the Deafblind Project in Alaska, who had been prepared as a teacher of students with visual impairments (TSVI) and orientation and mobility (O&M) specialist through two different universities that received personnel preparation funds to financially support scholars, begins outreach to the family, the early intervention team, and the health care providers. Through culturally responsive consultation, which was a curricular component of an ED-funded preparation grant to support personnel serving rural and remote students, the director establishes a long-term relationship with a local team. He makes strategic in-person visits to the island community via plane and regularly connects with the educational team via Zoom. He incorporates a child-, family-, and community-centered approach infusing best practices for educating deafblind students within the Yupik culture. The child’s family and educational team members not only receive technical assistance and resources, but they also become connected to state and national resources on CHARGE syndrome. Through the Deafblind Project, the family learns that they are not alone, that there are other students with similar needs in remote areas in Alaska, and that their families are also finding ways to support and educate their children.
The university programs that helped prepare the director are staffed by faculty members who were supported by leadership grants funded by OSEP so that they could receive their doctorates in special education with an emphasis in visual impairment and O&M. The director is a part of a national deafblind network of technical assistance projects and is also a state administrator for federal quota funds through the American Printing House for the Blind (APH). Despite the distance, the local team collaborates with SESA to order educational resources at no charge for the child as he begins attending his community school. Far from being poor quality, his materials are produced from high-quality national instructional materials accessibility standard files which his state education agency requires textbook publishers to submit to the National Instructional Materials Access Center for use by accessible materials producers, including Bookshare, another OSEP-funded grant.
Eventually, the student participates in school with his local teachers and paraprofessionals supporting his use of a cane during the colder and darker times of the year. He learns to use technology that has been created and refined from research projects supported by OSEP. In the summer, he attends inclusive sport camps and connects with other youth who are blind or deafblind from across the region. His TSVI and O&M specialist consult with the family and local team on ways that he can use adapted techniques to accommodate his vision impairment to participate in activities such as ice fishing and hunting. Through vocational rehabilitation in Alaska, he and his family begin to explore what is available to him after he completes his schooling. When he turns 16, the team decides to support a summer experience for him at the Helen Keller National Center (HKNC) summer youth program as a way for him to deepen his O&M skills.
At each step of this child’s journey, the ED through OSEP has played an essential role in ensuring this student’s access to free and appropriate public education. These resources, channeled through a state entity in Alaska, support him and his family in their local community. The agencies, programs, and staff who made this child’s education possible are all the result of the ongoing work of the ED. These vast resources and similar programs, developed and implemented by the department are available to every child with a disability in the United States.
Impact of the ED
The leadership and roles of the ED have been vital in addressing the struggles of parents and professionals in their efforts to raise awareness about the unique barriers faced in accessing instruction, materials, technologies, and environments at the local level. In its national role over the years, the ED has provided states and their systems with critical support, messaging, funding, and knowledge networks that support all children who are blind, have low vision, or are deafblind.
The state Deafblind Technical Assistance Project, early intervention program, materials from APH, university personnel preparation programs, vocational rehabilitation, and HKNC have all received congressionally appointed funds administered by the ED through its Office of Special Education and Rehabilitative Services and OSEP units to fulfill IDEA law. Despite the child living in a remote area of the United States, his access to resources and instruction are intact. Such investment and focus on the needs of children with low-incidence disabilities are not functions the state of Alaska could have accomplished on its own without the support and programs provided through the ED.
Throughout its history and its shifts under a variety of presidential leaders, ED’s position and the expertise of its staff have afforded it a unique national perspective on the educational needs of students who are blind, have low vision, or are deafblind. Our country and its population and geography are vast and diverse. The history and needs of the fields of blindness and deafblindness developed within a context of American education with the voices of parents, educators, schools for the blind, schools for the deaf, consumer leaders, and administrators. These voices were instrumental in creating and supporting national legislation and in articulating the need for an ED with expertise in translating the legislation into regulations and practice.
The relationship between the ED and our field has been dynamic and evolving. Its funding priorities, initiatives within technical assistance projects, and efforts to implement evidence-based educational practices have been informed by ongoing conversation with OSEP staff that have direct experience as educators of people with disabilities and as educators with disabilities. Technical assistance, personnel preparation, and accessible educational materials are all means for reaching students who are blind, have low vision, or are deafblind regardless of their location. National attention to the existence of these students and what may be done to teach them supports states, informs educational districts, guides educational teams, empowers families and ultimately benefits the students themselves.
Commitment to Low-Incidence Learners
On a personal and professional level, I have experienced the long-standing commitment of the ED in addressing the needs of students and families. It is profoundly interwoven with the history of our field. Larry Wexler, the former director of OSEP, used to say: “Low incidence does not mean low priority.” What is moving about this statement is that it was and has remained evident in all aspects of the department’s work. As our earlier story illustrates, even a single student in rural Alaska is not a low priority.
The ongoing partnership between our field and the ED is a bold claim that a child who is blind, has low vision, or is deafblind is a full member of society with the right to be educated and to participate fully in the world. Advocacy to support the existence and ongoing health of the ED is advocacy for all people who are blind, have low vision, or are deafblind.
Low incidence does not mean low priority.
—Larry Wexler, former director of the Office of Special Education and Rehabilitative Services, U.S. Department of Education