by Evan Spivak, DDS, clinical associate professor, Department of Pediatric Dentistry, Special Care Treatment Center, UMDNJ-New Jersey Dental School as told to Mary Ann Littell.
ost people take going to the dentist for granted. If your teeth need cleaning or you have a toothache, you make an appointment and go. But imagine if you couldn’t find a dentist to take care of you or a family member. Parents of children with disabilities face this reality every day. There are very few dentists who treat this population: children with developmental disabilities, mental retardation, autism, Down syndrome, cerebral palsy, and a host of other genetic disorders.
At the Special Care Treatment Center at New Jersey Dental School (NJDS), our practice is devoted to providing comprehensive dental services for those who are physically or mentally challenged. We treat both ends of the spectrum: mostly children and young adults, but also some geriatric patients — primarily those in nursing homes with conditions such as Alzheimer’s, dementia, severe arthritis, and other complex health problems. The wheelchair-bound, those with Lou Gehrig’s disease, brain injuries or MS — they all come to us. The center, which I direct, is part of the Department of Pediatric Dentistry at NJDS.
You could say that our patients have an even greater need for professional dental care than the general population. Many disabled people are unable to take care of their teeth. Without dental care, their oral health deteriorates quickly, and their general health can soon follow. As a dentist providing basic services, we can often make dramatic — and even life-saving — changes in their lives.
Our patients may spend weeks, months or even years seeking a dentist. They’ve been referred all over the place: typically from a general dentist to a pediatric dentist to an oral surgeon. Many parents come here prepared for yet another rejection, wondering, “Where are you going to send us now?” They’re often surprised when we tell them we can take care of them.
This work is both rewarding and challenging. Recently, I overheard one of our dentists inquire of a patient’s mother: “How often does your daughter turn blue?” It’s not a question most dentists have to ask. I’ve had patients who are prone to seizures, including one who had, on average, 40 of them a day. He might not have any seizures in the dental chair…but then again, he might have three or four. Providing this care takes a certain mindset, as well as a depth of knowledge.
Our center has five dentists on staff: two full-time and three part-time. Last year, we had more than 3,700 patient visits and 400 operating room (OR) visits. We’re so busy because we’re doing things nobody else does. We’re the only dental center in New Jersey specifically caring for the disabled. So patients come to us from all over the state and as far away as Delaware and Pennsylvania.
Our treatment area is specially designed to accommodate wheelchairs and stretchers. While many of our patients are treated right here, others can’t tolerate sitting in a dentist’s chair, either because of physical or behavioral limitations. Some share the feelings of the general population: they see a dentist and want to run! Others, particularly some autistic children, can’t stay still for treatment and won’t allow anyone to touch them. Certain medically complex patients present with other concerns. For example, those with cerebral palsy may develop serious problems if they aspirate water.
These patients are treated in the OR under general anesthesia. Most procedures are performed in the Doctors Office Center in Newark, but our most fragile patients go next door to University Hospital. In one OR visit, we can do an exam, x-rays, fillings, extractions, root canal, periodontal work — whatever is needed. Working with caring and knowledgeable nursing and anesthesiology staff, we treat our patients in an environment where they are comfortable and safe.
While there are techniques and instruments that make special care dentistry easier, the most critical elements are the dentist’s attitude and patience. To get a medical history, we may need to speak to several different caregivers and doctors. A routine procedure can take two or three times as long. It’s so important to make the patients feel comfortable — the same as any frightened patient. Only we might be dealing with a 35 year old with the mind of a 5 year old.
I didn’t set out to be a special care dentist: I sort of fell into it. My childhood dentist was always cheerful and smiling. Whenever I saw him, I thought, “He’s so happy. Dentistry must be a great way to make a living!” He was one of the first to inspire me. I wanted a career in medicine, and dentistry seemed an ideal fit: a private practice setting with all the flexibility I could want and no worries over life and death issues. My eventual path couldn’t have been further from this vision.
In dental school, I had my first exposure to special care, but the experience was not a good one. Special care patients were presented as very difficult, and I was left with little optimism about being able to provide good care or help a needy population.
In my general practice residency at St. Barnabas Health Center (Bronx, NY), the special care program was excellent. I decided I wanted to continue training in this area, so I completed a fellowship in special care dentistry at Helen Hayes Hospital, a rehabilitation facility in West Haverstraw, NY. After a year of intense training, I was hooked. I haven’t regretted it.
The overwhelming majority of our patients have Medicaid coverage for their dental needs, but unfortunately, reimbursement for these services is very low. (New Jersey ranks near the bottom of the list nationally.) It’s probably the primary reason why more dentists don’t go into this field.
Reimbursement issues are not the only factor limiting access to care for disabled patients. In our society, the disabled are often kept hidden. They’re not a part of our everyday experience. So when some people encounter disabilities, they’re uncomfortable. A dentist in private practice may have an upscale office and comfortable chairs, with soothing music piped in. Then the special needs patient comes in, exhibiting behaviors that are not easily managed in a waiting room. Perhaps they’re making noises, or they drool. People who aren’t used to these behaviors are put off by them.
In general, dental schools have not focused on teaching special care dentistry. Only half of all dental schools in this country have such programs. It’s not nearly enough to meet this tremendous need. At NJDS, we want our students to have exposure to this population. The dental students all rotate through the center and their reaction is overwhelmingly positive. While most of them won’t go into specialty care, it’s our goal that as they graduate, these dentists will be able to see mildly disabled patients. They’ll be able to treat an Alzheimer’s patient or a Down syndrome patient rather than referring them to someone else.
I’m particularly proud of our residency program in special care dentistry, which I believe is the first such program in the U.S. to achieve accreditation. It covers all aspects of general dentistry for the special needs patient. We also work with dental assistant and hygiene students at UMDNJ’s School for Health-Related Professions. Although those in other schools typically do not get this experience, the SHRP students benefit from exposure to special care patients both in the center and the OR. Here, too, their response is warm and enthusiastic.
Our own staff of dental assistants, hygienists and front desk personnel is exceptionally caring and compassionate. Our rate of turnover is low, and in fact, staff from other areas of the dental school frequently express an interest in working with us. What we do is important and meaningful, and people are attracted by that.
To some, this area of dentistry may seem depressing. We take care of a difficult and emotionally wrenching population, people with terrible and often life-threatening disabilities. Seen from this perspective, then yes, it is depressing. But approached from the other direction, there’s a very rewarding aspect to our work.
We’re treating people who really need this care and can’t get it anywhere else, people with often excruciating pain. It is immensely satisfying to be able to alleviate this pain, and at the end of the day, it is this outlook that makes our work worth all the physical and emotional effort. The greatest reward comes from the reactions of the families and the patients themselves. Although many of our patients are nonverbal, most are not so severely challenged that they can’t express appreciation for what we do.
We’re able to make a huge difference in someone’s life. And our perspective on our patients’ lives makes us appreciate our own circumstances that much more. That’s a gift you can’t buy.
For further information on the services of the Special Care Treatment Center, please call 973-972-7040.