Eye care takes the forefront for students with visual impairments

Feature
Article

From schools for blind individuals to early intervention services, families have options to help prepare their children with visual impairments for adulthood.

Girl with visual impairments reading Braille Image credit: AdobeStock/wavebreak3

Image credit: AdobeStock/wavebreak3

The expanse of land that the Ohio State School for the Blind (OSSB) in Columbus lies on is teeming with life, bringing serenity and peace of mind to its students. With both OSSB moving and the Ohio School for the Deaf (OSD) expanding to its location on Morse Road in 1953, the schools reside less than 2 miles apart from each other, with Bill Moose Run splitting the middle of the land as a protected nature preserve.1,2

Gregory Hopkins, OD, MS, FAAO, extern coordinator at OSSB and clinical associate professor of practice for The Ohio State University College of Optometry in Columbus, said he finds that the nature surrounding the school and the students have more in common than they have differences. “When I’m up there, there’s always wildlife around, and you can hear the birds chirping. They have a sensory garden out in the front,” he said. “It’s interesting to be out there because it’s very immersive. I think of each of these kids being like a rare bird.”

It is the broad diversity of OSSB students’ eye conditions that makes each patient who Hopkins serves unique, he said. Every Wednesday, he leads optometry students in eye examinations of no more than 6 patients a day to ensure that each of the approximately 100 OSSB students receives routine eye examinations or complete workups when necessary. He estimates that of these students, approximately a quarter have conditions caused by early birth, such as retinopathy of prematurity, and another quarter have some form of optic nerve atrophy.

“That leads half of them to [have] a complete and total grab bag of different conditions, and some of them have very important systemic implications,” Hopkins said. Some of these rare conditions and diseases include choroideremia, syndromic retinitis pigmentosa, albinism, and Leber congenital amaurosis.

Although each student’s visual acuity and eye condition may be different, Hopkins said it is nearly impossible to assume what each student’s visual acuity may be from a glance. “The difficulty with vision impairment, just like other conditions, is [that] it’s a spectrum,” he said. “The irony is that their visual acuity is invisible to onlookers. I can look at 2 kids’ class photos from OSSB in the yearbook and not know which of them can see better than the other just from that, so this requires very individualized care.”

The nature of care

In order to keep medical records fresh for quality patient care and help secure federal quota funding, Hopkins said each student at the school has a comprehensive eye examination at least every 3 years. These examinations are done to the level of the patients’ visual ability (eg, if a patient has had an eye removed, infections and allergies can still be checked for). For new students who transfer in, Hopkins said these examinations are usually longer, running from 1.5 to 2 hours. He estimates that the average visual acuity of OSSB students is 20/200.

Hopkins said a part of the routine care that he provides to his patients also includes conversations about their conditions for the sake of transparency and planning for the future. “Some of the work I do there is talking to the kids about what the odds are that they may get some genetic therapy or cures in their life. Or sometimes there’s a kid who was mainstreamed and [had] some kind of trauma or tragic loss of vision, and now they’re just trying to completely retool,” Hopkins said.

Examinations for nonspeaking and blind or deaf students can prove to be a challenge but are made easier by the proximity of OSD, according to Hopkins. “Being so close to [OSD] and having developed a reputation for doing decent work, I get more patients coming over from there, and to do an examination through an American Sign Language interpreter [for] a kid who has impaired vision is probably one of the hardest styles of examinations that you can attempt to do,” he said.

Additionally, because students either live on campus or take the bus to school every day, Hopkins said providing comprehensive care without the parents present is also challenging, despite efforts to connect via Zoom. “Imagine if I sent one of my kids into the doctor’s office and they had to rely on them for everything. It’s tough, so I try to get around that by getting access to the medical records at children’s hospitals,” he said.

Ultimately, Hopkins said that these efforts to provide individualized care contribute to OSSB’s ability to put its students at ease and help them feel welcome. “For each kid, the determination is made that this would be the least restrictive learning environment for them, and a lot of them are super happy to be there because they don’t have to explain themselves to other people 10 times a day,” he said. “Everyone there just gets it.”

Prevalence and challenges

OSSB is the oldest school for blind individuals in the nation and is just one of the more than 50 schools and agencies in the US registered as members of the Council of Schools and Services for the Blind that serve children with visual impairment. According to a 2023 annual report from the American Printing House, almost 55,000 students with blindness or low vision were registered under the annual Federal Quota Census, with 4539 (8%) registered through schools for the blind.3 This percentage has remained steady since 2016.4

As far as employment rate after completing school, findings from one study in 2019 estimated that approximately 44% of the population with a visual impairment are employed and that 10% of people with a visual impairment who are in the labor force are unemployed.5 Hopkins said that although OSSB provides a postsecondary program to help with the transition into the workplace with internships and vocational classes, it can still prove difficult for alumni to find their footing. He added that having OSSB on their transcript may even work as a detriment to finding adequate, full-time work. “Most of them are unfortunately not being offered full employment at the level that they would hope, so that’s why we try and have these safety nets,” Hopkins said.

Set up for success at Cleveland Sight Center

With a small portion of students with visual impairments enrolled in schools for blind individuals, the large majority experience a different learning environment through the public school system. More than 43,000 students with visual impairments were registered through public schools in 2023.3 As many as 90% of high school students with blindness or low vision attend their neighborhood’s public school, according to Mobility International USA.6

For young children entering the public school system, the transition can prove difficult for both them and their family. To help ease this transition, Cleveland Sight Center (CSC) in Ohio is one of the country’s nonprofit organizations that provides early intervention services for children from birth to the age of 3 years. According to Laurie Zebrasky, MSW, manager of early childhood services at CSC, the organization has 5 staff members who provide direct services at home for approximately 250 families across 7 counties every year.

Because CSC is involved in these children’s lives during some of their most formative years, Zebrasky said their care plans are constantly changing to best fit their needs. “[Early intervention specialists are] giving that parent information, the knowledge, the tools, the skills that they need to be an advocate for their own child, to help them understand their own child’s diagnosis better,” Zebrasky said. “All that preparation that we’re doing over those couple of years, if we have them that long in early intervention, is also helping to shape them and prepare them for what we call that transition to preschool.”

Zebrasky added that this also includes a timeline for how long resources and support are provided to a given family through CSC. “If the child turns 3 [years] in May, they’re not going to get special education preschool services until September, and they’re a child [with] very high need[s], we can still go out and make a couple of visits over the summer,” Zebrasky said.

Optimizing the child’s living space depends on many different factors, including reducing visual clutter and determining the physical location for light sources, according to Barbara Williams, MEd, CSC’s early intervention specialist and team lead. Improving a child’s ability to navigate their living space also requires an assessment for the child, which includes functional vision assessments and evaluating orientation and mobility. “When we’re assessing, we really tease out, how does the child respond to things like color and complexity, and do they respond more on one side than the other?... It’s a matter of observing the child, interacting with the child, and getting information from the parent or caregiver, because they’re the ones who know the child the best,” Williams said. To better understand a child’s visual acuity, Williams said CSC also works with an optometrist to walk the team through eye reports and specific visual conditions.

In terms of referrals, Zebrasky said the organization is working to improve their relationships with local eye care providers to help streamline the process. She emphasized that children do not need to have no light perception or have legal blindness to benefit from early intervention services. “Doctors generally only make referrals for the most severe cases,” Zebrasky said. “I would love to be able to grow the communication.”

References:
  1. History. Ohio School for the Deaf. Accessed August 15, 2024. https://osd.ohio.gov/about/history
  2. About us. Ohio State School for the Blind. Accessed August 15, 2024. https://ossb.ohio.gov/about
  3. Innovate 2023 Annual Report. American Printing House. Accessed August 15, 2024. https://www.aph.org/app/uploads/2024/02/APH-Annual-Report_FY2023-accessible-UA.pdf
  4. The Year of Braille: Annual Report, Fiscal Year 2016. American Printing House. Accessed August 15, 2024. https://www.aph.org/app/uploads/2018/09/APH-Annual-Report-FY16-1.pdf
  5. McDonnall MC, Sui Z. Employment and unemployment rates of people who are blind or visually impaired: estimates from multiple sources. J Vis Impair Blind. 2019;113(6):481-492. doi:10.1177/0145482X19887620
  6. High school placements for blind and low vision students. Mobility International USA. Accessed August 16, 2024. https://www.miusa.org/resource/tip-sheets/highschoolplacements/
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