Children with physical disabilities have no access to sports

With her shoulders, arms and hands straining, Mia Emory powered her bright blue racer around the track at the top of Bayonne’s Korpi ice rink.

Mia circled in a long, low wheelchair using both arms, then using only her left arm to try and build muscle to match her dominant right side. I threw off the pink jacket I had been wearing to keep out the cold, and was now leaning against the wall doing sit-ups.

Her 12-year-old middle sister, Sophia, was practicing throws at the far end of the track. The youngest sibling, her 11-year-old Eaman, lounged on the pole vault landing pad with his iPad and his iPhone a day before her, wearing dark sunglasses like her Hollywood starlet. . She had surgery earlier in the week and had to skip her first indoor practice for the New Jersey Navigators.

Holly and Pete Emory all adopted a girl with a physical disability. The Sayrevilles decided long ago that physical disabilities did not prevent girls from participating in sports.

But that is easier said than done.

Mia has spina bifida, a birth defect in which a part of her spinal column fails to develop properly. Her legs are paralyzed and she has endured multiple surgeries since she and her brother arrived from China about five years ago. Sophia has arthrogryposis, which causes stiffness in her joints. With her brace on, she walks with her legs steady and cannot raise her arms above her chest level. Unlike her sisters, Yiman has what she calls an “invisible disability.” Eaman was born with her KBG syndrome, a rare genetic disorder that causes muscle weakness. She also has problems with her hearing and vision.

According to a 2021 report from the American College of Sports Medicine, children with disabilities are a quarter as physically active as children without disabilities. But with Navigator Adaptive on her track team, Emoris is able to fit in and be an athlete.

Participation often requires specialized equipment such as manual wheelchairs or stabilizers, as well as activity-specific prostheses. Such expensive aids cannot be found at local sporting goods stores and are not covered by insurance.

Nonprofits are typically stepping up to fill the void by providing grants to fund the acquisition of running blades, arms that can be used for weightlifting, and other adaptive gear. Teams such as the Navigators, Children’s Lightning Wheels, and Philadelphia-based Katie’s Komets basketball have shared chairs during practice sessions and games.

Both Mia’s racer and manual cycle (which cost thousands of dollars each) are owned by the navigator, but she is allowed to take them home.

“Being an athlete costs a lot of money,” she said. “Being a para-athlete is expensive because you need a lot of different equipment. It requires a lot of investment.

Many employer-sponsored affordable care act plans include “medically necessary” prosthetics in their essential health benefits, but that coverage is not universally available. Few insurers, including prostheses and equipment, specialize in helping people with disabilities, from children wanting to be part of a team to adults seeking health, to easily obtain what they need to lead an active life. cannot be put into

“Insurers deny access to basic health care,” said Nicole Ver Kuilen, public engagement manager for the American Orthotic and Prosthetic Association, who had a below-the-knee amputation since age 10.

“This is about access to physical activity, and we know that physical activity is synonymous with good health. The research on the benefits of physical activity is enormous, and the disability community has long forgotten that it is relevant to this necessary part of health care. It has been taken.”

Dave McGill, vice president of prosthesis maker Ossür, noted that most amputees are adults, often elderly. Reimbursement codes reflect their communities and are more likely to be covered by Medicare.Children who have lost their limbs still continue to run, injuring their prosthetic legs in the process and replacing them as they grow. We are facing an additional challenge.

“For pediatrics, there is no language for this, and very few codes covering pediatrics,” McGill said. “Where are most children covered? Most of them are covered by Medicaid, and Medicaid programs are usually not filled with cash to spend on secondary care items. You pay for what you need to live, and you pay very little for anything else.”

All states have insurance programs for children up to the age of 18.

However, only one state legislature (Maine) has added activity-specific prosthetics to its insurance coverage. The new law provides people under the age of 18 with devices designed to “maximize the locomotion, running, biking and swimming ability of the registrant, and to maximize upper extremity function.” I’m here.

If New Jersey passed a similar law, it would be a game changer for kids like Mia, Sophia, and Iman, as well as many of Navigator’s teammates.