American Action Fund for Blind Children and Adults
Future Reflections
       Summer 2021     FEATURE

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A Mother in Wonderland: Securing Services for My Blind Child

by Carla Keirns

Reprinted from Braille Monitor, Volume 63, Number 10, November 2020

From the Editor: Carla Keirns is an assistant professor of medical ethics and palliative medicine at the University of Kansas Medical Center in Kansas City, Kansas. She serves on the Blind Task Force of the Missouri Department of Elementary and Secondary Education and on the board of the National Organization of Parents of Blind Children. A slightly different version of this article first appeared in Health Affairs 2020, Vol. 39, No. 10, pp. 1832-1836. The published article is archived and available online at www.healthaffairs.org/. Reused with permission from Project HOPE/Health Affairs.

It was my son's first Halloween. It turns out that 3 p.m. on October 31 is an excellent time to get in to see a high-demand pediatric specialist. My son was fourteen weeks old to the day.

We didn't have any reason to think there was anything wrong with my son's eyes except family history. I wore glasses as a little baby, cute silver-wired ones with frames that wrapped around my ears. So did my sisters. My husband did, too, though his had heavy black plastic frames, a strong contrast with his blond hair. Both of my sisters had surgery for crossed eyes before they were a year old. I knew the reason to do that for a newborn was so that the eyes and the visual processing areas of the brain had a chance to develop in concert.

So there we were, my baby boy with blue eyes and snow-white hair in a gray footed one-piece, mesmerized by the doctor's collection of light-up toys for watching babies fix, track, and move their eyes. The doctor came and looked at him and then said he would be back after my son's eyes were dilated.

After thirty minutes we were ushered back into another exam room. My son sat on my husband's lap while the doctor examined him.

"He's blind," the doctor said.

What?

I remember the rest of the conversation as a competition between the doctor's words and my racing thoughts. It was like being on the cartoon Peanuts with the adult's voice saying, "Wah, wah, wah." He told us he would refer us to the New York State Commission for the Blind.

"Will he read? Will he drive? What will happen to him?" I had a million questions, but mostly I was perplexed by the word blind. He was only three months old. He didn't pay much attention to things around him, but he could clearly see.

In the next couple of days, I started reading. By the end of the week, my sister threatened to take away my internet privileges.

I learned what blind meant. The Snellen chart, developed by Dutch ophthalmologist Herman Snellen in 1862, has a large letter E at the top, which is the 20/200 line. The next line is 20/100. If you can see the E but not the rest, you are legally blind.

But was my baby blind? There was no way to know for sure; it would be years before he could tell us what he could see.

Our Little Family

My son is the only child of two academics. I am a physician and health policy scholar. My husband is a geographer and specialist in disability policy and universal design. Despite our professional training, the lines between what services are provided through health insurance versus educational mandates versus private charity were very confusing. We just wanted to know how to help our baby.

In those first months, neither our eye doctor nor our pediatrician mentioned "early intervention," a term for the services and supports that are available to babies and young children with developmental delays and disabilities and to their families. My husband was teaching a class on the history of disability that semester, and a pediatrician taking his course told us to sign our son up right away. These services are funded under the Individuals with Disabilities Education Act (IDEA), which in 1975 guaranteed access to a free appropriate public education (FAPE) for all children with disabilities. I knew a little about that history, because in 1972 my older sister was denied access to kindergarten in our local public school. She has what is now called high-functioning autism. My mother remembers being told, "We have no programs for a child like yours."

Jam Every Other Day

Is disability policy health policy? Is it education policy? Is it labor-force policy? Or is it social welfare? From the perspective of a family, these distinctions make little sense. I have subsequently found they are similarly confusing to congressional staffers. For children with disabilities, disability policy is education policy, and we were clueless. I was like Alice in Wonderland, lost in a place where I understood the words people spoke, but they made no sense to me.

Services for disabled children are more fragmented and confusing than anything I had ever run into in health care. Your health insurance covers some things, typically those things that prevent and treat the disease that causes your disability. The things you need in order to work, go to school, or function in your daily life as a consequence of your disability generally are not covered by health insurance. Instead, you are in a whole new world. If you are between birth and age twenty-one (or older, in some states) and need services and technology to go to school, they might be covered as part of special education under IDEA. If you are age eighteen to sixty-five and need them to be able to work, they might be covered by your state vocational rehabilitation agency. If you are over sixty-five, your state or local agency for the aging might pay for something that is needed to maintain your independence so you can stay out of a nursing home. If medical insurance, educational programs, vocational rehabilitation, social services, or aging agencies won't pay for what you need, maybe you can pay for it yourself, get a grant, or try crowdfunding.

My now seven-year-old son needs a magnifier to do his homework—and, in the face of the coronavirus disease 2019 (COVID-19) pandemic, he needs it for virtual school all day long. I don't mean one of those handheld magnifiers you can find for $1.99 or a paperweight "dome" magnifier that you can get for twenty or thirty dollars. He needs a full-page, electronic digital magnifier so he can see and complete his worksheets for school. They run from three thousand to six thousand dollars. In the past few years I have been to Washington, DC, to lobby for a tax credit for the purchase of "access technology" such as Braille displays and digital magnifiers. After I show the cute picture of my first grader and a flyer for the five thousand-dollar device he needs, the first question I always get from congressional staffers is, "Doesn't health insurance cover that?" It doesn't. Even though it's prescribed by a doctor, it's not considered a medical device because it doesn't treat his disease.

The Pool of Tears

Early intervention for children with disabilities is a program of the federal Department of Education, administered by the states. Six weeks after we saw the eye doctor, two women came to our house and played with our five-month-old son for about four hours. One was a special education teacher, and the other was a teacher of students with visual impairments. Two weeks later we received a thick envelope with a twenty-two-page report that pronounced that his cognitive development was in the second percentile for his age, two standard deviations below the mean.

Our son needed support from a teacher of students with visual impairments and a certified orientation and mobility specialist. These are education professionals, not health-care providers, and, for children, their services are provided through schools and education agencies.

Through early intervention, a teacher of the visually impaired came to our house twice a week. She explained that if we could optimize what our son could see with glasses, surgery, and therapy, he might avoid developmental delays that are the predictable result of not being able to see and interact with one's environment.

Who Dreamed It?

At age three, children move from early intervention programs to school-age programs covering children ages three to twenty-one, and they must be evaluated again by their school district to see whether they qualify for special education and related services. While early intervention has a dedicated funding stream from federal, state, and local agencies, special education for school-age children is only partly federally funded, and it competes for resources with all of the other programs public schools need and want to provide. When IDEA mandated school districts to cover the specialized instruction and services required for a child to receive a free, appropriate public education, including speech therapy, physical therapy, occupational therapy, and assistive technology, the law included a promise to states and school districts that the federal government would cover 40 percent of the "excess" costs of educating disabled children above and beyond what the school spends for students without disabilities. At the time it was estimated that it would cost twice as much per student to educate disabled children, so the funding formula was tied to average per pupil expenditures for all students. Congress has never appropriated funds to cover more than 21 percent of that average expenditure amount for each student with disabilities, according to the Congressional Research Service. The National Education Association has calculated that in fiscal year 2019 IDEA funded 13.8 percent of average per pupil expenditure for each child covered by IDEA.

A Caucus Race

My son's birthday is in July, and it takes about three to six months from the time of a request to evaluate a child for special education and start providing services (summer months don't count, in our experience). So to continue to receive supports for his visual impairment after his third birthday, we had to contact our school district in January.

The staff was professional and outlined a plan. Review of records. Classroom observations. Evaluations. Then, if he qualified, an Individualized Education Program (IEP). It seemed to unfold in slow motion. Months went by. We submitted records from his doctors and his preschool. He came to the district's preschool and matched plastic bears to cups of the same color. A teacher of students with visual impairments came to daycare to observe him. The daycare director told me she stayed twenty minutes.

In April we met to review his evaluations. Yes, he had a disability that impacted his education. He qualified. Next step was to write an IEP.

But something about that meeting bothered me. I can't say quite what, but it might have been the turtle. The teacher had brought a picture from her classroom observation of a coloring book page of a turtle on which my son had scribbled with a green crayon. There was no evidence of even an attempt to color in the lines or if he saw them at all. She said, "All the other kids' pictures looked the same." He had been evaluated in August, nine months prior, by the early intervention team, and this teacher appeared to have done no other formal testing besides the brief observation. The only data she brought was a two-year-old's scribbles. It seemed to me that the school staff were underestimating his needs.

The year he turned two, my son had considerable variation in his visual acuity measurements from examiner to examiner, day to day, and by time of day. He'd been seen by an ophthalmology team at the National Eye Institute as part of a research study and by a handful of other ophthalmologists and optometrists. There are different tools for testing the visual acuity of babies, such as a version of the eye chart with pictures instead of letters, a hand, a bird, a birthday cake, a phone. A rotary dial telephone. I asked the examiner how many kids have ever seen a rotary dial phone. She laughed and said, "I give credit for any consistent answer." Kids usually thought it was a spaceship.

Another test, using a series of cards with parallel black and white lines in progressively narrower configurations, suggested a visual acuity of 20/80. None of my son's tests using an eye chart were better than 20/100; most were 20/200 or worse, from 20/500 to 20/1000. The exam done by an ophthalmologist during the IEP evaluation process found him to be 20/200 by use of the picture eye chart. The school staff didn't perform their own test.

A Mad Tea Party

It was a beautiful Thursday in May. The special-needs parent blogs all said to bring snacks, so I did. I met the school's teacher of students with visual impairments in the school office. I brought a drawing of a rainbow to go with the turtle. A few weeks before, my son’s occupational therapist had used markers to outline a rainbow and had given him bingo dotters to fill in between the lines. He did so enthusiastically—on the right two-thirds of the page, indicating classic neglect of his left visual field. If we're going by the preschool art, both showed he has vision loss affecting his performance.

One by one, the rest of the team arrived—several staff from our new school district, several staff from the preschool for blind kids that my son was attending, and me. My husband was at work, and I didn't bring anyone else.

The school team handed out the nineteen-page draft IEP. Near the bottom of page four it reported the visual acuity of 20/80 from the National Eye Institute study the previous year. There was no mention of the most recent eye chart assessment of 20/200. On page seventeen was a special form for children classified as blind and visually impaired, which requires the team to document whether the child needs Braille use and instruction. The team checked "No." The section below that where they were supposed to explain why was blank.

We were offered a spot in the school district's preschool based on my son's visual impairment, but we were denied specialist services such as a teacher of students with visual impairments, instruction in Braille, an occupational therapist, or a certified orientation and mobility specialist. I was perplexed. How do you qualify a child for special education due to his visual impairment but then deny him all of the specialized services that are designed to accommodate his vision loss?

When I questioned the plan, I was told that it was the last day of school, and if I didn't agree, we could meet again in August. But if he didn't have an IEP in place on his birthday in July, he would lose his final few weeks of early intervention services.

The Queen's Croquet Ground

I knew the school's clinical assessment was wrong, but no one would listen. I didn't know what to do, but I knew why it mattered. My younger sister did not read at grade level until she was twelve. We didn't understand why she wasn't reading until she failed the first grade—twice. It was probably a milder form of what my son has. It took her four years to catch up. I was determined not to watch that happen again.

I talked to the staff of my son's preschool, and they were almost as shocked as I was. We were referred to our state vocational rehabilitation agency for the blind. Everyone said to call a new IEP meeting in August, but none had a good answer for summer services before then.

I called the federal Department of Education's Office of Civil Rights and was advised that they could not help until he turned five. They referred me to my state Department of Education's Special Education department, and their compliance staff advised me to request an independent educational evaluation. I called our school district again and was told to call back in three months.

What was I supposed to do then? Hire a lawyer for my three-year-old and sue our school district? Privately pay for the preschool for blind kids, for assistive technology, for therapies?

I decided that if I fought the district and won, what I would get was the services of the teacher for students with visual impairments who didn't think my son needed any help. And it would take a year, or two, or ten. It would cost more than paying myself to enroll him in our local nonprofit preschool for blind kids, where I could trust that he would get what he needed. So we stayed at that preschool for three more years.

Down the Rabbit Hole

When the time was approaching for kindergarten, we were advised to move to another school district. Several other districts in our city have better reputations for special education than ours. Ours is considered kind of middle-of-the-pack—good for some diagnoses, but it's a smaller district and less familiar with "low incidence disabilities."

This time I knew it would take six months to put together a plan with the school, so a year ahead, I started planning. I began going to special education workshops run by my state Parent Training and Information Center and by a company called Wrightslaw. I started reading and going to conferences, and I joined Facebook groups for parents like me. In one group, I wound up messaging with a teacher of students with visual impairments who now works as an advocate. After reviewing our old IEP and my son's evaluations, she had ideas for new assessments and a strategy for asking more of the school.

I was still terrified.

One day my little boy overheard me talking to a family member about whether I needed to hire him a lawyer.

"Mommy, why do you need a lawyer?" he asked.

"I don't need a lawyer," I said. "You need a lawyer."

"Mommy, why do I need a lawyer?"

I explained how a lawyer advocates for you to help ensure that your rights are protected. I explained that he would need help to learn to read because of his eyes. He said, "Mommy, I want my lawyer to help me get everything I need." I paid the retainer the next day.

This time when we went to the school district to ask for an IEP, I was not alone. I brought the advocate, who knew what to ask for. I brought the attorney, who knew how to get it. When my son entered kindergarten, we had a plan that included all of the services he had been denied three years before.

Schools don't see many blind kids. That often means that they don't know what they don't know. Blindness and visual impairment severe enough to require special education are estimated to be found in less than 0.4 percent of the more than six million school-age children receiving special education in the US, according to the 2019 Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act.

When I asked one of my son's teachers of blind students what usually happens to children like my son, she said, "I don't want to tell you." She didn't have to. We know what happens. Kids like my son, legally blind but with substantial usable vision, are often okay through kindergarten—like my sister. Some make it through first grade and even second. In third grade the reading demands increase, the font sizes get smaller, and they can't keep up. Staff or families realize at eight, nine, or ten years old that the child needs more help. But by then they are years behind. Their friends are going on to reading Harry Potter, and they have to go back and learn their ABCs, now in Braille.

Through the Looking Glass

The core problem goes back to that decision by Congress in the 1970s to place much of the responsibility for providing disability services to school-age children on schools. It makes a certain amount of sense. Not all kids have health insurance. Children spend the majority of their waking hours in school. Public schools can provide universal access. They might not have all of the expertise one would need to assess and manage all children with all kinds of disabilities, but they can receive federal and state funding to support specialized instruction, related services, and assistive technology.

But not all schools are created equal. According to the US census, in fiscal year 2016 New York spent $22,366 per pupil and Utah spent $6,953. Where we live, at the border of Kansas and Missouri, the states spent $9,960 and $10,313, respectively. Schools face funding shortfalls along with challenges finding experts for less common disabilities. And Congress has never met its promise to fund the educational mandate of special education at 40 percent of the "excess" costs of educating special education children. In March 2019 Rep. Jared Huffman (D-CA) introduced the IDEA Full Funding Act in the House, but there has been no further action since then.

In my role as a special-needs mom, everyone told me that my job was to advocate for my child. Of course I would advocate for my child. Who wouldn't? The better question is, who cannot?

Navigating the fragmentation of services, the complexity of eligibility rules, and the sometimes adversarial processes of determining appropriateness of services is more manageable for those with time, money, education, and expertise. This means that the likelihood that a child will receive the medical, educational, and rehabilitative services and equipment they need to improve their functioning and start their education on a level playing field can depend on their parents' situation and supports. This is, of course, true of our medical and educational systems as a whole, but for disabled kids and their parents, the stakes are even higher.

The COVID-19 pandemic has added a new wrinkle to our story, only underlining the degree to which we rely on schools for services for children with disabilities. When schools closed in the spring because of COVID-19, my son's school provided remote occupational therapy and remote Braille instruction until the end of the school year. We worked by phone, by video, and in person over the summer with Braille teachers we paid out of pocket, and we used our health insurance for virtual occupational therapy.

Despite our best efforts, we could not duplicate the educational benefits of the services he was getting during the year. My son has lost most of his kindergarten year's gains in Braille, and there is no way he will be able to read Braille at a first-grade level this fall. And with school at home for the foreseeable future, he still needs that expensive digital magnifier, among other supplies, so he can do his schoolwork at home.

So what can parents do? They can educate themselves. Seek out support groups of other parents. Take advantage of Parent Training and Information Centers in their states, as well as Family Voices/Family to Family agencies that support children with disabilities and their families. But it's critical to recognize that in an unequal society, putting the burden on parents to advocate for their kids further worsens inequalities.

What can policymakers do? They can fully fund IDEA. Reconsider where the boundaries are being drawn between therapy and education and between devices that are paid for by health insurance and those paid for by schools, assistive technology programs, vocational rehabilitation agencies, and private charities or family resources. Why is Medicare classifying digital magnifiers and other high-technology visual aids in the same category as eyeglasses? The reason disability-related assistive technology is so difficult to get, prices are so high, and the market is so small is that there is no reliable funding stream for this technology to create a sustainable market.

I study health disparities, and I think that educational disparities are equally if not more likely to lead to premature disability and death. It's not my son I'm worried about. I've met a lot of mothers who have become full-time advocates for their kids. I've met a lot of adults with disabilities who didn't get the help they needed to learn to read or do math or have a fair chance at independent living. I've met attorneys and advocates who are fighting systems designed not to give kids what they need to meet the goal of the Individuals with Disabilities Education Act: "to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living." It should not take a mom who is a doctor, or a lawyer, or tens of thousands in disposable income to be able to get a free appropriate public education and the supports a disabled child needs for basic access to education, employment, housing, and an open future.

Policy Checklist

The issue: Much of the responsibility for providing disability services to school-age children rests on schools, and parents of children with disabilities must navigate complex rules about which services are provided by schools or covered by health insurance and which must be paid for another way.

Related Reading

Applegate, J. Countdown: School Districts That Spend the Most Per Pupil and States Ranked by School Funding, Columbus Business First, 2018 May 24, https://www.bizjournals.com/columbus/news/2018/05/24/countdown-school-districts-that-spend-the-most-per.html  

Corn, Ann L., Spungin S. J., Free and Appropriate Public Education and the Personnel Crisis for Students with Visual Impairments and Blindness. (2003.) University of Florida, Apr. http://copsse.education.ufl.edu/copsse/docs/IB-10/1/IB-10.pdf   

National Education Association. IDEA Funding Gap by State, FY 2019, (2019.). Mar 22. http://www.nea.org/assets/docs/IDEA-Funding-Gap-by-State-FY-2019.pdf  

US Department of Education, 41st Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2019, (2020.) Feb., https://www2.ed.gov/about/reports/annual/osep/2019/parts-b-c/41st-arc-for-idea.pdf

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