Seeing the need: ISU trains providers for young children with blindness
Parents of children who were visually impaired used to be on their own until the child was ready for preschool.
There were no resources, and parents didn’t know what questions to ask, or where to look for answers. Mindy Ely remembers going into the home of a 3-year-old boy who had learned to walk sideways because he had spent the first few years of his life in a playpen. His parents restricted him, feeling he would be safer. They didn’t know how to introduce him to a world he couldn’t see.
The federal Individuals with Disabilities Education Act was supposed to fill this gap by ensuring intervention services were provided to infants and toddlers with low vision, blindness, or deaf-blindness. However, these children remain among the most vulnerable and underserved populations because of a lack of providers. Over the next three years, more than 1,500 Illinois children from birth to age 3 will be eligible for services, but less than 20 percent will receive them or even be identified as having a vision problem.
Illinois State University College of Education Professors Maribeth Lartz, Olaya Landa-Vialard, and Ely ’93 are working to change that through the Early Learning Visual Impairment Services, Training, and Advancement (EL VISTA) program started in 2015. With a five-year, $1.23 million grant from the U.S. Department of Education, the University is training and certifying providers in early intervention. The program is one of the few of its kind in the nation.
EL VISTA scholars are teachers of the visually impaired and orientation and mobility specialists who complete a 13-month program, earning Illinois State’s early intervention vision specialist certificate. EL VISTA is designed so scholars who are professionals with full-time careers can do their course work over two summers at Illinois State or a Northern Illinois site.
Successful completion of the program allows the scholars to apply for the state’s early intervention credential. The 10-person cohorts are selected from a highly competitive pool in geographically diverse areas. The program expects to certify 40 specialists by the end of the grant, more than doubling the current number of providers.
“That’s exciting because we have so many families just waiting for a provider,” Lartz said. “It’s a federal law to serve birth to 3, but if there are no people, there are no people.”
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Lartz is the grant’s principal investigator, and a professor of deaf and hard of hearing. The EL VISTA model is based on her 2012 AIM to Be Ahead grant from the U.S. Department of Education, which provides training and certification for those working with infants and toddlers who are deaf or hard of hearing.
“It’s the same grant for a different population. When we figured out the model that worked for AIM, I knew we needed to do this for vision,” Lartz said. “People were begging for it. Children were not being served. Can you imagine having a child who is blind and having no provider who knows blindness? Here you are thinking you’re doing everything perfectly and you don’t have services until they’re 2 and they’re not walking. It’s really scary for families.”
Without early intervention, these children begin preschool at a developmental disadvantage and sometimes have a difficult time catching up to their peers, said Landa-Vialard. She is EL VISTA’s co-principal investigator, an assistant professor, and coordinator of Illinois State’s low vision and blindness program. “The earlier children with sensory disabilities receive services, the better they will do in school and in life.”
An infant’s vision difficulties can easily go undetected. Babies with a visual impairment may lie quietly and appear content, but that’s because they need to hear what is going on in their environment.
“Without any intervention, a good parent will miss these things,” Lartz said.
Early intervention provides parents with the education, resources, and support they need to be their child’s advocate and teacher, a role that can be overwhelming, said Ely, the EL VISTA grant coordinator and a course instructor. “When parents are involved in a hands-on way, the potential for their child is increased exponentially. With kids who are totally blind, we have to build an understanding of literacy. You can’t teach letters if a child has no understanding of reading. And if you’re a sighted parent and you have no background in that, how do you do it?”
The heart of EL VISTA is a yearlong professional practice, where scholars follow providers already credentialed in early intervention into the homes of families needing the services. Scholars observe a variety of specialists, including occupational, speech, and physical therapists, which helps build scholars’ network of providers once they are in the field.
“That’s a very unique piece,” Lartz said. “If we had to get rid of everything and only have that, we would still be able to pull off an amazing program. It’s being with the families, sitting on their floor, doing home-based delivery.”
EL Vista Scholar Jennifer Duncan, a vision teacher and orientation and mobility specialist for ages 3 to 21, has been paired with Mary Ellen Drobnik, a developmental therapist-vision (DT-V).Duncan learned about EL VISTA at a state vision conference, and when she saw a map of Illinois comparing the amount of providers to the number of children needing services, she knew that was what she wanted to do. “I originally wanted to explore the possibility of going into early intervention so I could be a better 3- to 21-year-old teacher and know how to bridge the gap and transition of the birth to 3 children into school. As I got to know more about early intervention and the need in Illinois, the more I wanted to pursue the EL VISTA program and become credentialed.”
Earlier this year, Drobnik and Duncan visited Rose Spratt Nwakamma and her daughter, Heavenly, in their home in Willowbrook, a Chicago suburb. The child’s mother didn’t know her daughter had trouble seeing until she started to walk and dropped to the floor when she ran out of surfaces to hang onto. A doctor discovered Heavenly had cataracts, and performed surgery to remove her lenses. While multiple surgeries and glasses have improved her vision, it’s still so poor she can run right past her mother while looking for her.
“This program has been a godsend,” Nwakamma said. “As a mom, you’re too close and you don’t see the delays. I’ve interacted with kids pretty much all my life, but when it’s your own, it’s different.”
Therapists begin by asking parents what their goals are for their child. “That’s really an important piece,” Ely said. “It’s all about coming alongside the family and asking where they’re struggling. We listen to parents to learn their dreams and hopes for their child, and then we join them in finding avenues to reach those dreams. The primary goal is to build confidence in parents and a relationship between the parent and child because that’s going to blossom into everything they need in later years.”
The ultimate goal of the program is to have enough providers so the child’s transition to a school-age program is seamless. “The transition into the school system is scary for families,” Ely said. “But for families to get to know their birth-to-3 provider well and then transition to that same provider as their school-aged teacher for the visually impaired eases their fears. That works beautifully.”
An important part of the grant is dissemination of information to early intervention vision impairment professionals around the country. Ely, a former DT-V provider, speaks at state and national conferences and developed a website, Eiviprofessionals.com.
Ely and two students from the first EL VISTA cohort recently published an article promoting evidence-based practices in the Journal of Visual Impairment and Blindness. Ely and Lartz outlined EL VISTA as a model in an article in Visual Impairment and Deablind Quarterly in 2016. Landa-Vialard, Ely and Lartz have submitted an article on EL VISTA to the Journal of Visual Impairment and Blindness.
EL VISTA is attracting widespread attention and has the potential of becoming a national model. Universities across the country have reached out to the leaders, asking for advice on extending the program, Ely said.
“As one of the out-of-state inquirers said, ‘The world is watching,’” Ely said. “That is a huge responsibility, but also an exciting mountain to climb.”
Kate Arthur can be reached at kaarthu@IllinoisState.edu. Tommy Navickas contributed information to this story.