By Carol Costello
My daughter has a genetic diagnosis of tri-translocation of the 8th and 10th chromosome. Colleen is very aware of her world but is verbally limited, and has further medical issues along with her primary diagnosis: a hole in her heart, diminished walking after years of surgeries on her hips and legs, many allergies, asthma. The biggest challenge with any kind of procedure, however, is her breathing issues around surgery: It is very hard to wake her up from anesthesia.
Colleen is very lucky to have a wonderful dentist in our own neighborhood. Travel is a big hindrance for many individuals and families with disabilities. She has gone to the same dental practice her entire life—he is a kind doctor, and very sensitive to Colleen’s feelings and her comfort level while in his office.
Colleen, like many individuals with disabilities, has big difficulties with changes to established routines, and they are very aware of that issue and work with us to keep her experiences predictable from visit to visit.
We count ourselves lucky to have found and developed a relationship with such a sympathetic and caring practice, as finding such care for people with special needs is so acutely difficult for families in our community. My daughter has challenges in medical settings that are familiar to many: She is very aware of everyone around her and she is not comfortable with someone being behind her that she cannot see.
The staff must be in front of her or beside her while caring for her. The noise of the instrument’s scares her, so she can’t have fillings done while she is awake.
Not many dentists are willing to accept risky patients like Colleen. The other very big roadblock for individuals like her, people that cannot be cared for at a limited surgical center but instead need to go to the hospital for care, is that it is hard to find a hospital that will accept individuals with her needs and sensitivities. It is even harder yet to find an anesthesiologist that will take people like her on.
Many insurance companies also will not cover an overnight stay for a dental procedure, even if it is required for some individuals’ care. Many need that extra time to come out of anesthesia and wake up safely, and to make sure that their breathing is healthy.
Further, insurance companies and Medicaid will not pay for corrective or cosmetic surgery or care. It is cheaper to pull a tooth than try and save a tooth for Medicaid patients. As a result, many individuals with disabilities who have dental issues will eventually end up with no teeth, leading to issues with digestion and creating dangerous conditions like an increased risk for choking on food. Inadequate coverage options can have a big, dangerous impact on the livelihoods of people with disabilities in our care.
Individuals with disabilities have the right to quality, safe dental care like anyone else. It’s important to train dentists and hospitals to anticipate and accommodate such need. With that extra care, training, and sensitivity, we can hope to see a world where dentists like my daughter’s are the norm, not the exception.