Golisano Foundation and Eastman Institute Partner to Help People with Developmental Disabilities

The B. Thomas Golisano Foundation and Eastman Institute for Oral Health at the University of Rochester Medical Center today announced a partnership to address the unmet oral health needs of people with developmental disabilities in the Rochester area.

Dr. Wayne Lipschitz of the Eastman Institute for Oral Health treats patients with severe developmental disabilities in the operating room every week.

While it is widely known that there is a critical lack of trained and experienced dental providers to work with people with developmental disabilities, no concrete data exists related to the extent and type of unmet need for the estimated 135,000 New Yorkers affected.

A newly formed community taskforce of experts will, for the first time ever, engage the community and help in the process of gathering reliable data in Monroe, Livingston, Ontario, Orleans and Wayne counties to determine the areas of significant need, clarify available resources, identify gaps and barriers for meeting needs, and develop realistic and practical recommendations to improve this complex situation.

The taskforce is led by Cyril Meyerowitz, D.D.S., M.S., director of Eastman Institute for Oral Health, which treats hundreds of patients with developmental disabilities and is the safety net provider for underserved populations. Other members include Project Coordinator Larry Belle, Ph.D., representatives from EIOH and the UR Medical Center, Rochester General Hospital, Finger Lakes Developmental Disabilities Services Office, CP Rochester, community service providers, parent advocates, dentists and dental hygienists. The taskforce will call upon national experts including Paul Glassman, D.D.S., director of Community Oral Health at the University of the Pacific School of Dentistry in California, and Steve Perlman, D.D.S., senior global clinical advisor and founder, Special Olympics Special Smiles and professor of Pediatric Dentistry at Boston University School of Dental Medicine.

“Dental care is frequently cited as one of the leading unmet healthcare need among individuals with neurodevelopmental disabilities,” said Ann Costello, director of the Golisano Foundation, which is funding the study. “This project is a critical first step toward improving oral health care for these individuals in our region. We know anecdotally that this is a longstanding problem so we are rolling up our sleeves to expedite this process. We have the right people around the table who can help us determine how best to proceed to improve access and availability of care. We’ll look forward to seeing the results of the task force and how we can address their recommendations.”

Several factors contribute to the poor oral health and hygiene of people with developmental disabilities, including physical limitations, complex medical conditions, behavioral issues, and increased incidence of early decay.  Other challenges arise due to access, transportation, insurance, and the small number of available dentists who can accommodate the unique needs of this population.

A project website– www.urmc.rochester.edu/dentistry/developmental-disabilities/— has been established so that family members, caregivers, group home staff, medical and dental providers can provide input and join the discussion about how to break down barriers and find ways to improve oral health care for people with developmental disabilities in our area.

“It’s estimated that 80 percent of adults with developmental disabilities now live in group homes, and the issues around measuring and tracking how patients receive care have  become very complex and multi-layered,” said Meyerowitz. EIOH treats hundreds of patients with developmental disabilities and is the safety net provider for underserved populations “The website will serve as a central portal for stakeholders to provide critical information, as well as find resources and share ideas.”

By summertime, the task force will have formed recommendations that will be used to seek support from state and federal agencies and foundations for launching a program designed to significantly improve the oral health services available to all people with developmental disabilities.

The B. Thomas Golisano Foundation is one of the largest private foundations in the nation devoted exclusively to supporting programs for people with developmental disabilities so that they may achieve their maximum potentials by integrating independence, self-determination, and productivity into all facets of their lives.

Eastman Institute for Oral Health is a world leader in research and post-doctoral education in general and pediatric dentistry, orthodontics, periodontics, prosthodontics and oral surgery. Patients are seen at many sites throughout the Rochester community.

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12 Responses to Golisano Foundation and Eastman Institute Partner to Help People with Developmental Disabilities

  1. Karen W. says:

    I have a six year old daughter with severe cognitive and physical impairments. We have tried bringing her to a pediatric dentist who I was told had years of experience treating kids with developmental disabilities. It was a nightmare that I NEVER want to repeat again. Two hygenists held her down, and asked me to keep her head still. She was thrashing, kicking and screaming while they tried to force instruments into her mouth. She went into total self-preservation mode. I picked her up, held her close and her heart was beating a mile a minute. She was treated like an animal. She had no idea what was happening to her, and being nonverbal, had no way to express her fear other than to react the way she did. The visit was unsuccessful and the dentist told me that next time they will have to restrain her. There won’t be a next time for this dentist.

    Knowing my daughter, I have always known that she needs more than standard dental care. More than a year ago, I tried to make an appointment with Dr. Lipschitz. That office told me to call his hygenist, who told me to call Eastman, who said I need to see a regular dentist and have that dentist refer my daughter. I’m extremely confused at this point as to how to obtain the care my daughter needs.

    She has never had a real cleaning. It is hard for us to brush her teeth effectively at home. I am very concerned about her oral health. She has enough challenges in her life. I don’t want to someday have to watch her teeth rot out of her mouth, when it can be entirely preventable. If anyone can offer advice I would greatly appreciate it.

  2. Jenny Stanberry-Beall says:

    Our family has been incredibly fortunate. Early on, we found Lynne Halik and Tyger Foster, pediatric dentists. Their practice is a stunning example of success. They work with all types of children, and have a huge following among families with kids who have special needs. All four of our children happily go in for visits, including the two who have ASD. Obtaining routine and even emergency care has been easier than I could ever have imagined, with absolutely no trauma. We also have had the great fortune to work with Joe Quevedo, endodontist, who performed a root canal on my daughter. She was so happy and comfortable that she didn’t want to leave the office. Finally, we are just at the beginning of our journey into the world of orthodontia. We are working with Scott Stein, and he and his office have immediately and graciously accommodated *all* of the complications and extra office visits that we have already required.
    My biggest wish is that more viable options like these professionals existed, both to provide choices for families, and to meet the needs of all. Also, I wonder about how our children’s dental health experiences will evolve as they age out of pediatric dentistry.

  3. Kevin Judge says:

    We have been taking my son Leland to Cheryl Kelley, a pediatric dentist, for his dental needs since he was old enough to see the dentist(he is now 21). Leland has Down Syndrom, and has never really minded seeing the dentist, but due to an accident when he was very young, which involved the extraction of some teeth, his mature teeth came in quite compact and a bit crooked. Because we knew he would not be at all compliant, we opted not to have him go through the rigors of having braces. Therefore, we really need to be very diligent with assisting Leland with his daily flossing and brushing. Dr. Kelley was noticing that the plaque build up on Leland’s teeth was getting pretty bad in his early teens, and his gums were beginning to show signs of gingivitus, due to the fact that we were not able to adequately brush his teeth. Dr. Kelley was ready to refer Leland to a Periodontist at this point.
    What Dr. Kelley found is that in the standing position Leland’s mouth and oral cavity was very tight, and he was very resistant to allowing us to brush his teeth properly. What she suggested was no less than genius. At bed time, with Leland in the lying position, we began flossing and brushing Leland’s teeth, and then having him rinse his teeth just prior to going to sleep at night. Within a few months Dr. Kelley was reporting that she was finding almost no plaque whatsoever on his teeth, and his gums were almost 100% better. I couldn’t believe how relaxed Leland was while I was flossing and brushing his teeth. This approach, to have Leland lie down while I was flossing and brushing his teeth had an unbelievable impact on Leland’s oral health, and probably saved the health care system an unknown amount of money, since we were able to avoid having to go the route of the periodontist. A simple solution to a very frustrating dilemna that I’m sure many parent in our shoes face every day, which probably leads to many, many unnecessay visits to the dentist, periodontist, or oral surgeon.

  4. Samantha Preston says:

    My 8yr old autistic son refuses dental care. The first time we took him to our family dentist, he would not leave the waiting to go into the exam room. The end of last summer we notice visible decay in a couple back teeth and after hearing about Eastman Dental Center from the Kirch Center we made an appt with them for the end of September. We live in Ithaca, NY so it’s a 2 ½ hour drive for us but we were desperate to find a place that had experience with children on the autism spectrum and that offers general anesthesia procedures.

    We showed up about 20 min early to our appt but they immediately showed us to a private exam room. Luckily, my son had no time to think about refusing before we were sitting comfortable in the room. The dentist and nurse came in within 5-10 minutes. They were experienced with how my son was reacting and within 15-20min the exam was over and we were heading home. The dentist was able to visibly see that my son had at least 5 – 6 cavities, and after discussing the option with us, we chose to proceed with general anesthesia.

    Now this process is a very long wait. I believe there is a committee at Eastman that approves these procedures, then they get approval from your insurance, and then it gets sent to a case worker at Eastman that schedules the procedure. This process can take up to 6 months. This I think needs improvement, however, when my son started having tooth pain in the middle of December, Eastman was able to get us scheduled for surgery on Jan 11. It probably would have been sooner if it wasn’t for the holidays and the pre-op physical. This I was very thankful for!

    The dental surgery was performed at Sawgrass Surgical Center. The nurses that contacted us prior to surgery were very knowledgeable and helpful. And, the entire staff that looked after my son the day of his surgery were amazing. They were very thoughtful and caring. They made us feel comfortable and safe. My son has never been better at a doctor’s visit!

    The whole experience from start to finish was great, and I highly recommend Eastman Dental to anyone who has a child who is difficult with dental care and a disability. We will continue to use them until my son can successfully and comfortably visit our family dentist.

    Thank you,
    Samantha Preston
    Mother of a child with Autism

  5. Karen Peck says:

    I am the parent of a 13 year old boy who has Aspergers. We started coming to Eastman Dental 2 years ago when we lost our Dental Insurance. Since my son had Medicaid insurance, due to his developmental disability, I was told by other families that this was a great place to go for my son’s Dental health. Due to some other health issues, my son has always been orally defensive and has experienced great anxiety at any medical appointment. We have had wonderful care and I’m sorry we didn’t find you sooner! All the Doctors we have had for check ups/cleaning, pulling stubborn baby teeth and educating my son have been fabulous. Over the years the biggest obstacle has been his oral hygiene. With each doctor and their explanation of how important it is and their little stories that make a lasting impression, my son has made progress in this area. I would say that the most important things a Dentist can do for a child who is nervous is to be patient, take their time, explain as simply as possible, listen to the parents- they know their child and what works best. Social Stories work for some kids, that might be something to place in the waiting area for kids/parents to read.
    Thank you!
    Karen Peck

  6. Norann Shiner says:

    I commend all of you for this huge undertaking. I work with families who are looking for help in this area in one form or another. I am also the parent of a young man who has significant developmental, physical and medical issues. In the past we have had to wait many months before a dentist or dental surgeon was available. Last year Adam had to have all of his teeth removed due to continued infections. By the time the surgeon was able to see my son he had lost a significant amount of weight due to the amount of pain he was in everyday. The weight loss was such that he was considered anorexia.
    Adam asks to have his teeth back every day. His ability to eat the foods he used to eat has changed. The insurance will not pay for any type of implants so my son is left with no teeth. Due to his medical issues and his diabetes we have to balance what he can eat what he has to eat to stay healthy.
    So in short some of challenges have been:
    !.)The availability of a dentist/ surgeon in a timely manner.
    2.)The insurance and what they will or will not cover.
    3.) Pain management for someone who is not able to express pain.
    Norann Shiner
    Advocacy Center

  7. Karen Pappas says:

    We have a 19 year-old son with Pervasive Developmental disorder. He also has issues with speech and fine motor skills. We started taking him to a pediatric dentist when he was two years old. He dislikes going to the dentist for many reasons – he hates people being so close, he dislikes being touched by strangers, he doesn’t like keeping his mouth open, and he doesn’t like the different tastes of toothpastes and fluoride treatments. He has also been a challenge for the dental staff because he clenches his jaw tightly (in an open position) during a cleaning and exam making it difficult for the hygienist to reach his back teeth.

    Luckily, this dentist also offers movies, video games and other distractions which interest him that help make the visit a bit more pleasant.

    My son has poor oral hygiene. We (and the staff at the office) have showed him how to brush is teeth properly. We have tried an egg timer, an electric toothbrush, different toothpastes with various tastes and consistencies, reminders and rewards. Nothing has helped and we have run out of ideas. We still need to remind him every morning and evening to brush his teeth. When he does, he is not able to do a good job. He will not let us brush them for him. Due to his poor oral hygiene habits, the dentist has asked that he come more often. When he was 17, the dentist put sealant a few of his molars (because of his poor brushing habits). Insurance covers neither the extra visits or the sealants for older children.

    I would be nice if dental insurance plans might make special exemptions for the extra procedures needed by persons with disabilities.

    I will continue to take our son to the pediatric dentist as long as they will have him. He does not like change and our family dentist office is not equipped with the distractions of the pediatric dentist’s office. Knowing of dentists who is familiar with young adults on the autism spectrum would be helpful to us when he is asked to leave his current dentist!

  8. Ann Cole says:

    Two factors are making us find alternative dental help. 1.) Will the dental facility accept the Medicaid associated with the child due to the developmental disability, and 2) the current facility has resorted to versed in order to complete a routine cleaning. Patient exhibits negative behaviors and emotions when coming off the versed which are difficult to handle. Patient has already left the dental office when most of this takes place. There must be a better way!

  9. Doug Fisler, Parent Advocate says:

    I have a son that gets dental treatment from The Eastman Institute For Oral Health. The service is excellent. Unfortunately there are many people with developmental disabilities that can not access this service due to long distant commute (services like this are not common throughout the state), or because they are not enrolled in a program sponsored by a major service provider.
    These programs have long waiting lists for entry. Unfortunately, a significant percent of the people receiving dental care require general anesthesia in a hospital setting for all but first level assessment and cleaning. Operating room availability for people with developmental disabilities seeking dental repair is less than the need for those already enrolled in one of the programs. There is a large population with unmet needs that are outside the main stream.

    Doug Fisler, Parent Advocate

  10. Larry says:

    I have not had any direct experience with obtaining dental service for a family member with developmental disabilities, but I think that an emphasis on prevention would be key component, as it is with the population at large, in maintaining and improving the oral health and, indeed, overall health and well being.

  11. Dr. Cyril Meyerowitz says:

    What has been your experience with oral health care for people with developmental disabilities?
    Cyril Meyerowitz, D.D.S.

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