-Types of eye care and dental providers detailed
-Thanks to all who completed the survey
A new survey by the Illinois Spina Bifida Association (ISBA) of Illinois families living with spina bifida has found only 54 percent have private insurance and not quite two-thirds receive some form of government assistance.
Spina bifida affects more than 1,000 Illinoisans. It is a lifelong neurological condition that affects the spine and is usually apparent at birth. Spina bifida can cause physical and developmental disabilities that range from mild to severe and, for many, requires specialized medical care and daily attention to health and wellness.
Key findings of the survey include:
64% receive Medicare or Medicaid benefits,
59% receive Supplemental Security Income or Social Security Disability Insurance benefits,
54% are covered by private health insurance, compared to 67% of the U.S. population,
24% have insurance for eyewear, 24% for dental care, 24% for orthotics and 23% for physical therapy services.
In comparison, 67% of the U.S. population has private health insurance, 50% have insurance for eyewear and 88% have insurance for physical therapy, according to insurance industry data.
The estimated lifetime cost of care for a person with spina bifida is $791,900, including caregiving cost, according to the Centers for Disease Control and Prevention. It reports that about 1,427 infants are born with spina bifida each year in the U.S.
“Families living with spina bifida have to deal with financial issues in addition to clinical ones from cradle to grave,” said Jeremy Meinhardt, Bartlett, IL, chair of the ISBA board of directors. “For many, financial burdens would be greatly addressed by expanded government health care, an issue for which ISBA advocates while providing support services to Illinois families.”
The ISBA survey also found 78% of people with spina bifida wear eyeglasses or contact lenses. That’s slightly higher than the U.S. average of 75% of all ages, according to Dwight H. Akerman, O.D., M.B.A., editor of Review of Myopia Management and vice-chair of the board of trustees of the Illinois College of Optometry, in Chicago.
The prevalence of refractive error in the spina bifida population below age 18 is considerably higher than the norm. The ISBA survey found 54% in that age group wore corrective lenses. That compares with 42% among the general population, said Dr. Akerman.
The survey found that 38% of the more than 100 respondents receive their eye care from retailers, such as Walmart, Costco and LensCrafters. That compares to 29% from private doctors’ offices. Nine percent reported receiving eye care from a clinic, six percent online and 18% unsure from where they received their eyeglasses or contact lenses.
Sixty-four percent receive their dental care from a private office; 19% from a clinic and 18% reported not having a dentist. The survey also found 22% of all respondents wear or have worn braces on their teeth. Of those under age 18, 11% are wearing braces.
“Those percentages are higher than for the general population,” said Alvaro Figueroa, D.D.S., M.S., with orthodontic offices in Naperville and Winnetka, and former co-director of the Craniofacial Center at Rush University Medical Center in Chicago. He attributes that to children with spina bifida having multiple medical issues that cause families to be extremely aware of the importance of comprehensive medical care, including dentistry.
“Commonly children with spina bifida may have increased intracranial pressure that may affect the size and shape of the head. The face secondarily might be affected. Some children may have asymmetries of the cranial base, which in turn might involve the upper and lower jaws as the cranial base supports the face. The lower jaw joint hinges on the cranial base and an asymmetric cranial base might impact the form and size of the jaw. If the upper and lower jaw are asymmetric and of different size, the upper and lower teeth will not fit properly. In some instances the children also have serious orthopedic issues affecting the back, hips, ankle and foot deformities. Overall muscle function and balance is not symmetrical. Abnormal head position as a result of orthopedic and balance issues can cause the muscles supporting the head to function unevenly leading to asymmetries of the facial bones. For these reasons orthodontic treatment is provided frequently to improve a developing bad bite or malocclusion.”
As a result of COVID-19, the ISBA survey found that 59% of those with spina bifida are connecting with each other via ISBA’s videoconferencing groups and presence on Facebook and Twitter. “That’s up dramatically, as in-person events and get-togethers have been cancelled” said Meinhardt.