The expensive, complicated struggle parents face when kids with disabilities need dental care | Ronnie Polaneczky

Photos – local – POLA07 Image 4
John and Patricia Torcasio with their son, Michael. The Torcasios struggled to find a dentist who would treat Michael, who who has autism, is non-verbal and rarely stops moving. Dental patients with special needs like Michael must be sedated to before receiving treatment, but the service is very expensive and not always covered by insurance.

The Mummers have gone home. The sideways snow has stopped. And it looks as if we’ll thaw out by midweek from the deep freeze that’s had us hunkered down since New Year’s.

It’s time to turn outward, people, so here’s a question: What will be your first act of generosity in 2018?

If you need a suggestion, I’ve got a good one.

Anesthesia.

Arthur Thurm, a New Jersey dentist with offices in Collingswood and Linwood, has started a GoFundMe campaign to raise $50,000 to pay for the sedation that many of his special-needs patients require before undergoing even the simplest procedures, like teeth cleaning.

“Sedation is not always covered by dental insurance,” explains Thurm, one of only a handful of dentists in general practice nationwide who offer sedation services for people unable to tolerate time in his chair, including those with intellectual and developmental disabilities (I/DD). He contacted me after reading “Falling Off the Cliff,” my four-part series about adults with I/DD and the aging parents who care for them.

Many of Thurm’s I/DD patients have cognitive, behavioral, and physical limitations that keep them from cooperating during dental visits. They thrash in the chair, or can’t hold their heads still, or grab at the instruments. But the cost of sedation can range from $500 to $2,500, depending on the severity of the patient’s disability, the procedure being done, and the amount of time needed to complete it.

That’s more than many families can afford, as John and Patricia Torcasio learned in June, when their son, Michael, 21, woke one day with a golf-ball sized lump on his jaw.

The Torcasios live in Ocean City, N.J., with Michael, who has autism, is nonverbal, and rarely stops moving. But that morning, he was subdued. Fearing he had an abscess, they went to the ER, where he received an antibiotic. Doctors recommended an evaluation by a dentist, but the only local practice that would accept Michael’s Medicaid coverage wouldn’t schedule him for an appointment.

“They didn’t say outright that they wouldn’t treat him,” say John Torcasio angrily. “They just kept ignoring our calls.”

Camera icon Gregg Kohl
“Without anesthesia, Michael would have thrown himself around. When he was smaller, my husband would have to get on him physically and pin his arms down. He’s too big for that now.”

Oh, the cruelty of it.

By the time the Torcasios found Thurm, Michael’s swelling had subsided but the Torcasios were worried about what had caused it. Thurm had to sedate Michael to examine him, take X-rays, fill a cavity, and give his teeth a good cleaning.

“Without anesthesia, Michael would have thrown himself around,” says Patricia Torcasio. “When he was smaller, my husband would have to get on him physically and pin his arms down. He’s too big for that now.”

Luckily, Thurm found no underlying dental disasters, and Michael recovered beautifully. But the Torcasios, who are retired and on a fixed income, are still recovering from the high cost of sedating Michael for treatment: $2,207.

“It was worth it,” says John Torcasio, “because now we have a clear mind.”

Thurm, though, has not been able to stop thinking about the Torcasios and other families who can’t cobble together the cost of sedation. He knows it will keep them from getting dental care for their loved ones with special needs. The money from his new GoFundMe campaign would pick up the tab.

“This population falls by the wayside,” says Thurm, who has been in practice for four decades. “It’s terrible.”

He’s right to fret, says Melissa DiSipio, director of Philadelphia Coordinated Health Care, which advocates for health-care access for people with intellectual and developmental disabilities. Research shows that people with I/DD are more likely to have poor oral hygiene, periodontal disease, and tooth decay than members of the general population. It’s not just that their impairments keep them from cooperating in the dental chair. They also tend to receive poor at-home mouth care, take medications that can affect oral health, and experience high rates of poverty.

“It’s a big problem,” says DiSipio. “Dental care is not like other medical conditions; it’s not usually a one-and-done deal. Follow-up visits are required, but it can take several visits for a person with ID to even feel comfortable in the office. We work with dentists to help them bridge the gaps for families when it comes to care and cost.”

This is critical, because poor oral health has been linked to poor general health, including heart disease and diabetes. So the need for quality care is about more than fixing a broken smile.

Speaking of smiles, here’s another local GoFundMe campaign that could use your generosity: It’s called Give Kids A Smile and was launched by Colleen McCauley, a registered nurse and the health-policy director at Public Citizens for Children and Youth (PCCY).

Foe the last 13 years, PCCY has sponsored a free dental clinic in Philadelphia and in Montgomery and Delaware Counties during spring break for low-income kids who have gone too long without care. Last year, almost 600 kids were served; this year, PCCY was aiming for a thousand. In the past, funders donated the one-time $25,000 cost of administering the clinic, whose volunteer dentists provide services gratis.

But this year, funding for Give Kids A Smile has unexpectedly dried up.

“Our funders wanted to go in another direction,” says McCauley. So three weeks ago, she launched her GoFundMe campaign.

“This is a hard time to ask for money,” says McCauley. “Everyone has finished with their end-of-year giving, and there’s always competition for dollars. But there are too many kids who need this care for us to not put our full effort into it.”

McCauley shared a startling statistic that will take your breath away: Research shows that dental pain—often due to untreated decay—accounts for almost two million missed days of school annually. 

That’s heartbreaking. And heartbreak is no way to start a new year.

Please give.

For help finding dental care for a loved one with an intellectual or developmental disability, visit https://www.pchc.org or call 215-546-0300.