I’ve lived in three different countries: the US, Australia and the Netherlands. In two of those countries, the Netherlands and Australia, all children have access to no-cost dental care for basic dental services. In Australia, a dentist office was located near B.’s school. All I was ever asked was what school he attended and about his dental history. I don’t even think that they knew my name. In the Netherlands, all routine dental care is covered for any child under age 18 as part of the parent’s basic health insurance coverage, at no additional cost.
As a single parent in Oregon with limited income due to a lack of childcare for B. (the subject of a future post), my two children qualified for the Oregon Health Plan, the state’s Medicaid program. B. developed two identical dark spots in his teeth on opposite sides of his mouth. I took him to the only option for OHP dental care in our area. After an examination, I was told that his two cavities would need to be filled by their difficult case “specialist”. Upon arriving at the office of the specialist, I joined a waiting room filled with anxious mothers, some pacing the floor. B. was taken to an examination room. I was told that I could not accompany him. When an assistant returned with B., I was told that he would need to have the two cavities filled. When I asked how they would accomplish this considering his disabilities, I was told that B. would need to be put in physical restraints, and I would not be allowed to be present. I asked to see the device they would be using, and upon my insistence they begrudgingly complied. When I saw the papoose board, I was horrified. Papoose boards are banned in many countries, but are still allowed in the US. They remain controversial, and many children have suffered physical and emotional injuries from their use. I knew my son, and I knew that he would fight and resist until his last breath. I also knew that he wouldn’t understand why he was being restrained. I still recall feeling panic, helplessness and anger that my choice was to leave my non-verbal, disabled child tied up in restraints with a dentist whom I hadn’t even met and wouldn’t allow me to be present, or leaving his two cavities untreated. What possible reason could there be for not having a parent present, other than the expectation that the parent would object to the treatment? The message was clear: people who use medical social safety nets have no options and no rights, not even to protect their own children. When K. needed several cavities filled, I protested firmly and vigorously that I wanted to be present for the procedure. I was finally allowed to stand in the corner of the treatment room, but I was not allowed to have a chair to sit on, even though there were plenty of available chairs in the dental office. It was their policy, they said. You are poor; therefore, you deserve no humanity.
An article by Mary Otto in the Guardian this week, How can a child die of toothache in the US?, brought back many frustrating and painful memories. In the article, the child who died, twelve-year-old Deamonte Driver, contracted meningitis from an abscessed molar. His mother had been overwhelmed by cascading problems resulting from a lack of dental care for two of her children. Their situation proved too difficult even for the professionals who tried to assist them. Many years ago before I was a parent, I recall questioning the parent of a juvenile who was on trial for a very serious crime. I asked him whether his 16-year-old son had ever seen a dentist. His answer was “no”. I now know why that was even possible.
I often communicate on social media sites with other parents of children with disabilities in the US. Several times I’ve had discussions with parents of newly diagnosed children who are upset at their inability to manage the financial difficulties of a child with special needs. Often they will comment that they have been doing everything that they are supposed to do within the system, and they are not coping well. They are exhausted. They want to stop struggling and take advantage of “all the help that is out there” for parents of children with disabilities. I have to break it to them that there is no such thing. If you have less than $2000 in assets and your child is considered 100% disabled, you can look forward to around $700 per month in SSI assistance. This doesn’t even begin to cover the cost of childcare (if you can find it), much less medical deductibles or lost income due to your child’s condition. It doesn’t cover respite care or the countless therapies that you’ll try because they just might help your child. The minute your bank account or assets reach $2000, you are ineligible for the funds. Any income can decrease this benefit, and when your income reaches the princely sum of around $1,500 per month (for a single person) the benefit disappears entirely. The only people I know who have managed to survive the onslaught of financial ruin are parents whose own parents can assist with either housing or cash payments in order to keep the family afloat. Often it takes the entire efforts of one family member just to manage the needs of the child with the disability.
I have confidence, legal training, and a job history that includes difficult and high-responsibility jobs. I have also been overwhelmed, drawn into poverty and have felt hopeless while living in the US with a child with a disability. What good is a so-called safety net if it is so inadequate that it doesn’t even meet the needs of the most vulnerable of our children? I fear what will happen with even more planned cuts to Medicaid and Social Security. The poor, the disabled and those who love them already suffer. When will the US begin to prioritize the needs of its most vulnerable citizens?