More than 13.5 million children under the age of 18 in the United States have special health care needs, according to the U.S. Department of Health and Human Services. That translates into nearly one in every five households with at least one child requiring costly specialized education, medical care and related services.
These children’s needs may range from such chronic medical illnesses as diabetes or cerebral palsy, to such emotional or behavioral health problems as autism, Attention Deficit Hyperactivity Disorder (ADHD), sensory impairments, or learning disabilities.
The ratio of special-needs children in Jewish households is likely no higher than the national average. However, the financial stakes and personal sacrifices can be far greater for parents wrestling with ways to provide their children with a suitable educational and social environment within a Jewish communal framework.
In effect, Jewish parents of special-needs children often face a trifecta of battles: with school districts, health insurance companies, and their own ability to pay yeshivah or day school tuitions.
|Alisa Salamon, a speech and language pathologist, bakes ladder cookies with students as a creative language lesson that ties into the students’ study of a biblical text (Jacob’s dream of a ladder to heaven). Courtesy Sinai Schools|
“The financial sacrifices can be staggering,” says Marcy Glicksman, director of the SINAI School at the Rosenbaum Yeshiva of North Jersey, a self-contained Jewish day school for children with learning and developmental disabilities. Sinai serves 100 Jewish special needs students spread across two elementary schools, three high schools, and an adult group home for men. Tuition runs $45,000 a year – more than double customary yeshivah or day-school fees in Bergen County, where Glicksman’s program is located. “Parents feel a cultural, social, or religious imperative to stretch their limits to pay for a special needs program within a Jewish school system; but sometimes it’s hard to recommend our program knowing the financial toll it could take,” she says.
“Our costs average about $50,000 per child – that’s what it costs us to provide a 1:2 professional-to-staff ratio, a tailor-made program for each student, and many therapies,” says Sinai’s managing director, Sam Fishman. “Our full tuition, at $45,000 per student, is intended to cover most of our costs.”
He adds, however, that “very few of our families can afford our full tuition, and large scholarships are the norm. Eighty percent of our families receive significant scholarships, averaging more than $16,000 per student. About $1.7 million in total scholarships were awarded this school year.”
Scholarships, Fishman says, represent about 35 percent of Sinai’s budget, and are paid for entirely through fundraising.
Emotionally draining decisions
Interviews with families, special educators, and Jewish educational institutions reveal that parents routinely contend with staggering out-of-pocket costs, grueling time commitments, and emotionally draining decisions surrounding the education and care of their special-needs children. Along with paying hefty premiums for specialized “school-within-a-school” programs, or inclusion classes at area yeshivot and day schools, they typically shell out steep hourly payments for services not covered by health insurance plans, including trained shadows, tutors, and additional therapies.
One such parent is Abigail Hepner-Gross, whose son Judah now attends a Sinai School. An articulate 10-year-old with a passion for mythology, Judah was diagnosed with Asperger Syndrome, a high-functioning type of autism defined by deficiencies in social and communication skills.
“The previous yeshivah day school he attended recognized his challenges early on and worked hard with us to get him the best set-up possible,” Hepner-Gross says. “But there came a point when it was clear his needs were greater than what could be handled within the context of a mainstream classroom.”
With the help of a private educational consultant, she and her husband chose Sinai, a costly Jewish educational alternative to the secular special-needs schools they considered.
“Another choice would have saved us significantly, but we felt strongly that a Jewish education would serve our son the best,” she says. “It’s difficult to be different, even in a special education environment. But to have our son possibly be the only Jewish kid who keeps kosher and can’t do Saturday afternoon activities – that could be traumatic.”
At Sinai, class size is capped at between six and eight students, with two full-time teachers, and an assistant. Speech therapy, occupational therapy, counseling, and social skills instruction are provided on site as part of the tuition. “We try to meet all their needs in the same classroom, that’s why it’s so expensive to deliver extremely differentiated instruction,” Glicksman explains.
Sinai’s tuition does not include the amount Hepner-Gross and her husband still pay for other additional services or therapies Judah needs. It also does not reflect the tuitions they pay for their other children to attend a local Jewish school.
Pressure on parents
“We know that if we want to help Judah continue making steps forward, we may have to add another $10,000 a year in out-of-pocket expenses for each new therapy we get for him,” says Hepner-Gross. “That doesn’t address whether we as parents can handle the non-financial pressure of shuttling him to appointments, or whether he can handle all that extra work. It’s exhausting for him and for us.”
Right now, they have put off worrying about how they will pay for high school and college, to focus on Judah’s marked progress.
“Recognizing there’s a problem was hard; making the decision to put him in a special-needs environment was even harder,” says Hepner-Gross. “But now, seeing the benefits of a program that suits him, we know we are helping our child.”
Toby Glick, a Bergen County-based school psychologist and educational consultant, helps identify schools and programs that will meet the needs of a special-needs child. She says the decision to remove a child from a Jewish educational environment can be gut-wrenching.
“Some parents will do anything to keep their children in a Jewish school setting; sometimes it works and sometimes it doesn’t,” Glick says. “They feel they’re not only removing their child, but removing themselves from the expectations of their own social and religious milieu. It’s like giving up a dream for their child.”
That dream formed the basis of Gesher Yehuda, an inclusion program established in 1995 within the Moriah Hebrew Day School in Englewood, for children with learning, emotional, and behavioral issues, says Alana Green, director of student support services.
Currently, there are 38 students enrolled in the program; a trained special educator is responsible for a group of six or fewer students within a mainstream classroom for whom personalized modifications and accommodations are made. Parents pay a premium for the program on top of their regular tuition, Green explains.
Seeking to inspire
Gesher Yehuda students meet weekly with a dedicated psychologist for a social skills class to help build self-esteem, social communication, and social development.
“Our goal is to enable children to function in a yeshivah day school, and be part of a typical day school classroom with support, and to become engaged, inspired learners,” Green says. “To accomplish that, it takes hours and manpower to create material that will complement a mainstream curriculum.”
It also takes money – a lot of it.
When Dalia, a mother of four (it is not her real name), noticed that her preschool-age son’s language skills seemed delayed, she had him evaluated by her public school district. “He tested in the first percentile for expressive language,” she says. Although he was accepted and enrolled into the district’s early intervention program, he had shown little improvement by the school year’s end.
After spending thousands of dollars on educational, psychological, and speech evaluations to secure additional services from the district, Dalia ended up moving her son to the private therapeutic nursery school program at the Kaplen JCC on the Palisades in Tenafly for children with developmental delays.
At the time, tuition was more than $30,000 a year, she says. “I’ve spent so much money, I’ve lost count,” she says. “But I’ve learned to be an advocate and trust my own instincts.”
Now in middle school, her son is still receiving speech and occupational therapy outside the classroom of his Jewish day school. “I work my day around getting him to speech therapy,” she says. “My mother keeps saying, why not send him to public school and get the services for free? But I want him exposed to Jewish kids, Jewish values, and Hebrew literacy. Despite the financial compromise, I want to keep him in a Jewish environment.”
For other parents, such as Shira and Yaacov Gitstein, that compromise was one they decided they could no longer make. Their 10-year-old twin daughters both have medical and learning disabilities. Rivka has Down syndrome, a chromosomal disorder associated with impaired cognitive ability and physical growth. She also is hearing impaired. Rachel has a language-based learning disability.
“Our hearts were with keeping the girls in Jewish schools; our priorities are to have their needs met,” Yaacov Gitstein says.
Initially, they placed Rachel in a Jewish school in Monsey, until they say they discovered that she was not receiving the occupational therapy or speech she needed. “For all of our money spent, what we received was expensive babysitting,” he says.
Rachel is now in a self-contained program for learning-disabled children in their home public school district. Rivka attends a school in Ho-Ho-Kus that serves some 600 special-needs children and adults throughout Central and Northern New Jersey.
“The bulk of our money goes into therapies, medical expenses, and equipment,” Shira Gitstein says. “We cannot sacrifice ourselves financially. The question is at what point do you break yourselves?”
The Gitsteins also pay for a Jewish educator to teach their daughters after school and are involved with communal organizations such as Friendship Circle and Yachad, for children with disabilities. The girls also attend the Jewish Education for Special Children (JESC), a Sunday school program for Jewish children with special needs.
“We didn’t make the choice to take them out of Jewish schools,” Shira Gitstein says. “The choice was made for us.”