Improving Access to Dental Services for Children and Youth with Special Health Care Needs

A Parent Educator from Parents' Place of Maryland used her own experiences to advocate for increased access to services for children and youth with special health care needs in rural Western Maryland.

Here is her story:

"As a parent of a child with a disability, with the added privilege of living in a rural area, I have become accustomed to traveling far and wide for quality care for my son, Charlie. Charlie was born in 1995 with Down syndrome. At the time I lived on the Eastern Shore of Maryland in Worcester County. I now reside in Allegany County in Western Maryland.

Charlie, this past year at age eight (8), required dental surgery. He had retained all of his baby teeth it was recommended that now was the time to have them removed. I made an appointment with Cumberland's only oral surgeon. This surgeon had removed, with sedation, in his office, four of my older son's teeth in preparation for Orthodontic work. When our turn arrived to be seen by him, he did not actually look into Charlie's mouth or even put him in the chair. He said that we "needed to align ourselves with the people in Baltimore who deal with these special children all the time." I asked if he could simply sedate Charlie, like he had my older son. The surgeon said he would be uncomfortable doing it in his office and that it should be done in a hospital. So I asked him if he could do it in our hospital then. He said, "You really need to align yourself with the people in Baltimore who have experience with those kind of kids. Now, if this were an emergency, like an abscess, I'm there for you?"

His secretary called me a few days later to inform me that the place in Baltimore was not taking appointments, as it was closed for renovations. She had however, made me an appointment for Charlie to see a Dentist at the University of West Virginia in Morgantown.

The day of this appointment arrived and I drove Charlie to Morgantown, in a blizzard, at 35 miles per hour, behind a tractor-trailer in the one lane opened so far by the snowplow. When we arrived and parked and mashed through the horrible weather (no underground or covered parking), I couldn't help but notice all the other parents carrying and trying to shelter their small children from the horrible weather. This shows you though how desperate we are for any kind of care that we would put ourselves, and our children through such an ordeal. There was even a lady there, with her daughter, who had actually had an accident on one of the bridges, but she continued here for her appointment because she said she had waited over four months for it!

When we finally got in to see the dentist, he never spoke to Charlie and curtly ordered me to get him into the chair. I pulled him up onto the chair on top of me so I could help calm him. At first he was laying on me face down. The dentist said, "You have to turn him over!" But he made no attempt to help me or to calm Charlie. His nurse snapped back at him, "She's trying to!" Then this "expert" that all children with special needs are referred to, pried Charlie's mouth open while I held him down with my arms and legs, left the room once to go get the orthodontist, and the two of them proceeded to once again pry open and examine Charlie's mouth with out one kind word to Charlie. He didn't even tell us when he was finished so that I could release Charlie. It was the most hideous day of our lives. After a three hour drive home on terrible snowy roads I swore that I would not let that man operate on my child and that I would find a way for our children to be seen? by a compassionate and gentle dentist right here in our area.

That is what prompted the calling of all the dentists in Allegany County until I found one, and only one, who was willing to see our special children, that need sedation or a hospital setting to accomplish their dental care. He was also the only dentist that would accept the medical assistance card from the children who have one."

Working with the dentist and the local hospital, our Parent Educator was able to arrange for the dentist to get privileges at the hospital and to arrange for an anesthesiologist to provide support when necessary. Now other families will not have to face long rides and difficult circumstances to get dental care for their children with special health care needs and covered by Medicaid.