SAN FRANCISCO - As a dental assistant, Niki Henson, RDA, was confident that she would be able to schedule a dental appointment for her two sons who both have special needs.
But she was shocked at the responses she got.
"I was turned away from dental offices where I knew the dentist," Henson, president of Cornerstone Academy in Cypress Texas and a member of the American Dental Assistants Association (ADAA) who has served on the ADAA's Council on Education, said during a presentation August 17 at the California Dental Association's (CDA) fall meeting.
Her son Dustyn, 17, has been diagnosed with spastic triplegic cerebral palsy and has an intellectual disability as well, Henson explained. Caleb, 12, has had chronic ear infections in the form of a recurring and invasive cholesteatoma that has come within 1 mm of entering his brain's membrane multiple times. He has had 20 surgeries to date with at least one more planned when the infection is controlled enough to allow it, she noted.
Hurt and confused by the responses she received from so many dental practices, Henson reached out to two parents' networks, the Parent to Parent Alliance and Family 2 Family. She wanted to see if other parents had similar difficulty in scheduling dentist appointments.
"I thought I'd get a few responses," Henson said. "I got over 5,000 within a couple of weeks. The need is so great and the workers are so few."
During her CDA presentation, Henson discussed how hygienists, assistants, and dentists can work with children with special needs and their parents in ways that are sensitive to their situation and cost-effective. Her approach was distinctively personal as she showed the audience pictures of her two kids.
"Understand that parents of special needs kids have a lot going on, and oral care can go by the wayside," Henson explained.
While there are a plethora of different special needs -- the definition of the phrase is broadly inclusive -- most individuals in this category have teeth, she noted.
"They all need dental care as much as anyone," she said. "What do parents want? They're looking for anyone that will take the time to know the kid well enough to accommodate their needs."
That begins with how they are received at the practice. "If you're the person answering the phone or seeing them in the office as they walk in, you can make a huge difference," Henson said.
Next, treating patients with special needs effectively involves knowing how to interact with them and addressing them properly. Use "people first" language, which helps avoid dehumanization when discussing people with disabilities, she emphasized.
He or she is "not a blind child, but a child with impaired vision; a person with a disability, not a disabled person," Henson explained. "Say it as a human, and then what they have, and you'll always get it right."
When meeting a patient with special needs, practitioners should remember there is a special significance associated with a surgical mask. "It's important not to have a mask on when you meet them," Henson said. "They see doctors with masks all the time, and that can create fear."
Getting off on the right foot in establishing a relationship with a new patient with special needs can be simple. "The best thing to do, since they may have a visible or invisible disability, is ask, 'How can I help you?' " Henson said.
Put yourself in their shoes
Henson offered several other suggestions for addressing patients with specials needs:
- Sometimes it is better to listen than to speak.
- Don't be afraid to ask specific questions that can help educate yourself.
- If the child is present, don't speak as though the child isn't there.
- Remember the difference between compassion and pity.
Explaining what is happening can ease tension and fear in these patients, she noted.
"[The practitioner] needs to say, 'Now I am putting this mask on. We are going to push a button and the chair will go back. You are safe,' etc.," Henson explained. "When we found a dentist office that would just take the time and do these little things, it was like night and day."
Many people with special needs prefer not to be helped. So ask before offering assistance. Henson's son, for example, uses a wheelchair, but he insists on opening the door for himself.
"He gets mad if people try to help him," she said. "People only see the struggle, but every time he overcomes it, it's a victory for him. So it's awesome for him to open the door for someone else -- it's a gift to them."
Sometimes there are situations in which all the attentiveness in the world makes little difference. "Caregivers of individuals with newly diagnosed special needs are very, very sensitive," Henson said. "It doesn't matter how old they are. They can explode and give you a psychological debriefing that you did not expect. But don't walk on eggshells. You can't live life worrying about someone else's issues. Just understand that it can happen."
Henson also described what not to say to patients with special needs. Above all, she emphasized, avoid clichés. Parents in her position hear several phrases frequently:
- "I don't know how you do it."
- "Give me your kid for a week and I'll whip him into shape."
- "You poor thing."
- "I'm so lucky, my kids are healthy."
- "If that were my kid, he'd be different."
"No," Henson said. "If that were your kid, you would be different. You'd see things through very different eyes."
Henson also shared excerpts from some of the 5,000 letters she received from other parents. One mother of a child with cerebral palsy wrote that the dentist said to her that they planned to "papoose [her son] down."
"Look at the language there," Henson said. "She is already afraid. That tells me that [the staff] didn't explain that the papoose board was there to prevent the child from hurting himself, etc. A better explanation may have helped."
Another letter from a mother in a single-income family described a situation in which she asked if a $700 procedure that the dentist recommended was urgent. After the dentist responded that it was not he refused to see the patient again when the parent opted not to have the procedure performed.
"Think about it from the mother's point of view," Henson said. "She has massive medical bills on a regular basis. Unless it's urgent, she may not be able to cover it."