PAOH President’s Letter: Advocating for Optimal Health
Dr. Steve Perlman
By Steven Perlman, DDS, MScD, DHL (hon), PAOH President
For this month’s President’s Message, I am sharing with you the frustrations and roadblocks that are faced when you are trying to solve a problem for people with disabilities that you know “is just not right.” I apologize for the lengthiness of this message, but I am hopeful HELEN Journal readers appreciate our efforts.
As President of People Advocating for Optimal Health (PAOH), I have been tasked with identifying barriers to healthcare for people with disabilities, to raise awareness of these barriers, and to collaborate with others to find a solution for the problems.
Oral health and the ability to access and receive competent oral healthcare is the number one health problem people with disabilities face on a regular basis throughout their lifespan. It has been well documented for the over-fifty years that I have been practicing and teaching. It has been ignored by Public Health dentists, the organization of dental professionals that you would think would be a voice and champion for this most medically and dentally underserved minority population. An example of their indifference is their willingness to sit on the sidelines and not become a fierce advocate for people with Intellectual and Developmental Disabilities (IDD) to be designated as a “Medically Underserved Population” (MUP).
Historically, pediatric dentists provided dental care for people with disabilities throughout their lives, usually from birth till death. They provided care for patients the profession neglected; they had to, because no one wanted them, and transition to adult and general practitioners did not exist. Over the past decade, pediatric dental residency programs have eliminated all adult care for patients with disabilities.
“An example of their indifference is an unwillingness to sit on the sidelines and not become a fierce advocate for people with Intellectual and Developmental Disabilities (IDD) to be designated as a ‘Medically Underserved Population’ (MUP). ”
Currently, many programs are limiting the age of patients they treat to under fourteen years. “When pediatric dentistry became an age defined specialty, it has had a severe and negative impact on the health delivery system.”
What does “age defined” even mean? We were told by the American Academy of Pediatric Dentistry (AAPD) that the specialty designation was created by the National Commission of Recognition and Certifying Boards (NCRDSCB), but indeed it was not. It is the AAPD that adopted these guidelines in May of 2018.
We know as well, as all our colleagues, the impact of this decision. We do not need publications, studies, or research to acknowledge how it has changed the landscape of care for individuals with disabilities. The past several years have demonstrated how a bad situation has become a catastrophe.
Our goal is not to require, mandate or place demands on pediatric dentists to treat adolescents, young adults or even geriatric patients with disabilities, but to protect the “trench warriors” who wish to continue caring for someone who no one else will care for.
The American Academy of Pediatrics (AAP) is not an age-defined specialty and in fact, understands and addresses this issue with evidence-based intelligence, empathy, and compassion because it is the right thing to do. According to their guidelines: “The establishment of arbitrary age limits on pediatric care by healthcare providers should be discouraged. Healthcare insurers and other payers should not place limits that affect a patients’ choice of care providers solely on the basis of age. An extension of the guidelines, such as those put forth in BRIGHT FUTURES, to cover recommended health care services for patients in their 20’s should be developed.”
The decision to continue care with a pediatrician, medical or surgical subspecialist, should be made solely by the patient (and family when appropriate), the physician must take the physical and psychosocial needs of the patient and the ability of the pediatric provider to meet these needs.
Other important language in their guideline include: “Recent research has begun to shed more light on the progression of mental and emotional development as children progress through the adolescent years into young adulthood. It is increasingly clear that the age of 21 years is an arbitrary demarcation line for adolescence because there is increasing evidence that brain development has not reliably reached adult levels of functioning until well into the third decade of life. Students remain in college until their early 20’s, and many continue to reside with their parents after graduation for financial as well as developmental reasons. In addition, because the number of children with special healthcare needs surviving into adulthood continues to grow, these patients are faced with limited access to healthcare services once the availability of specialized, supportive services terminates at age 21. Young adults with disabilities often have limited access to physicians who are trained to care for adults and also have the required knowledge of these problems originating in childhood.”
Pediatric subspecialities explicitly are not age defined, and in fact encourage their membership to treat children or adults with disabilities until a safe transition could be made, no matter what age the patient is.
The bottom line is that pediatric dentists simply do not want adolescents or adult patients with disabilities in their practices, and most often they are asked to leave without a plan to find them a new dental home.
The transition to general practice and a safe harbor is an impossible barrier for many families and leaves them with few alternatives.
It is clear that by inserting the words “age defined” the AAPD has created a mine field in the profession with a hint of “presumptive discrimination.”
PAOH has reached out to the AAPD on several occasions to simply remove the two words “age defined” or even “age guided” versus an age-defined specialty.
Words matter, and in this case, a simple change will impact the lives of countless patients, their families, caregivers, and everyone’s lives they touch.
Following are the letters sent to the AAPD, with one from PAOH, and a letter from the American Association on Health and Disability (AAHD) delivered to the AAPD headquarters on August 25th, 2024.
Sadly, we are still waiting for a response from them.
My very best wishes to you for a Happy and Healthy Holiday Season and New Year!
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LETTER 1:
American Academy of Pediatric Dentistry
211 East Chicago Avenue, Suite 1600
Chicago, IL 60611-2637
Dear Members of the American Academy of Pediatric Dentistry,
I urge the American Academy of Pediatric Dentistry (AAPD) to immediately reconsider its recent decision to adopt an age-defined specialty, which will jeopardize access to essential dental care for many patients with disabilities.
Historically, the AAPD's guidelines have allowed clinicians to exercise their professional discretion in determining the best course of treatment for each patient. This flexibility has been critical for patients with disabilities who cannot transition to adult general dentistry practices. The previous guidelines empowered clinicians to make reasonable accommodations, ensuring these vulnerable patients continued to receive the care they need.
The new age-defined policy, however, threatens to strip away this essential discretion. By implementing this policy, the AAPD would effectively disregard the needs of individuals with disabilities, a stance that would demonstrate deliberate indifference to their rights. These patients, already facing substantial barriers to accessing dental care, could be left without viable options.
I strongly urge the AAPD to reconsider this policy change. A flexible, inclusive approach is necessary to meet the patient community's diverse needs and uphold the core principles of compassionate care in pediatric dentistry.
I urge you to reconsider this policy change and ensure that the needs of all patients, particularly those with disabilities, are adequately met. Thank you for your attention to this critical matter. I look forward to your prompt response.
Sincerely,
Rick Rader, MD, FAAIDD, FAADM, DHL (hon)
President
American Association on Health and Disability
110 N. Washington ST, STE 407
Rockville, MD 20850
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LETTER 2:
Dr. John Rutkauskas
211 East Chicago Avenue, Suite 1600
Chicago, IL 60611-2637
Dear John,
The Role of the Pediatric Dentist in Advocating for Continuity of Care
In AD10, Celsus the ancient physician wrote, “Children require to be treated entirely…differently from adults,” which ushered in the specialty of pediatric medicine. Hippocrates, the Father of Medicine, noted the variations of disease manifestations with age. Dentistry was slow on the uptake in recognizing that children were not “little adults.”
In 1909, Minnie Evangeline Jordon established the first dental practice in the United States devoted only to pediatric patients. While she was in dental school, she ran an oral health clinic at an orphanage in San Francisco; thus, realizing and appreciating that children required and deserved special knowledge and skills from a dentist. Her dedication to this nascent specialty culminated in her writing the first textbook in 1925 on pediatric dentistry titled “Operative Dentistry for Children.”
The specialty of pediatric dentistry become galvanized by the establishment of the Forsyth Dental Infirmary for Children in 1914, as the first institution of its kind in the world in providing dental treatment for children. The specialty led to the American Society of Dentistry for Children which merged with the American Academy of Pediatric Dentistry in 2002.
The medical side of healthcare for children, The American Academy of Pediatrics was founded in June 1930 by 35 pediatricians who met in Detroit in response to the need for an independent pediatric forum to address children's needs. When the AAP was established, the idea that children have special developmental and health needs was a new one. Preventive health practices now associated with childcare-such as immunizations and regular health exams were only just beginning to change the custom of treating children as "miniature adults." (AAP).
Pediatricians often see “adult” patients. Patients with cystic fibrosis, congenital heart defects, intellectual and developmental disabilities and other complex conditions continue to be treated by the physicians who saw them from their earliest onset.
According to Dr. Karen McCoy, chief of pulmonary medicine at Nationwide Children’s Hospital in Columbus, Ohio, some so-called “overage” patients require special care in being transitioned to adult care; often they are best suited to remain under the tutelage of the pediatric team that knows them best.
Good medicine is not based on chronological categories and the American Academy of Pediatrics allows, encourages, and promotes the ongoing care of adult patients by pediatricians. Pediatric medicine is not age restricted, age defined, or age limited; it is “patient centered.” Many pediatric patients with special healthcare needs (for example genetic disorders) had limited lifespans and thus the need for them to transition to adult physicians (family practice or internal medicine) was never a necessity. At the same time, the adult physicians did not have the skills, experience, confidence, or support to see these patients as their lifespan increased and they entered adulthood. The community physicians appreciated seeing the pediatricians stepping up to the plate to continue their oversight and treatment.
According to The American Academy of Pediatric Dentistry, “As advocates for children’s oral health, the AAPD promotes evidence-based policies, best practices, and clinical guidelines; educates and informs policymakers, parents and guardians, and other health care professionals; fosters research; and provides continuing professional education for pediatric dentists and general dentists who treat children.” Thus, the AAPD recognizes that general dentists should also be treating children when the circumstances, conditions and outcomes are justified. It seems reasonable that if general dentists can see children, then pediatric dentists should (again when appropriate) be seeing and treating adults (due to special circumstances).
The AAPD endorses the sensibility of pediatric dentists seeing adult patients with this posting, “The AAPD is a professional membership association representing the specialty of pediatric dentistry. Its 11,000 members provide primary care and comprehensive dental specialty treatments for infants, children, adolescents, and individuals with special health care needs.” It is noteworthy that “individuals with special healthcare needs” is not defined by any chronological guidelines, limits, or exclusions.
It is recommended that the American Academy of Pediatric Dentistry clarify its mission, guidelines, scope of practice, and recognition of best practices.
It is simply an announcement of what it has always stood for; and clearing the way for those pediatric dentists who are dedicated and committed to continue to see those patients who they have formed a collaborative relationship with; including their families. This clarification serves to echo the words of former Surgeon General C. Everett Koop, “You’re not healthy without good oral health.” …to which we would add, “across the lifespan.”
It is noteworthy that the AAPD, The American Academy of Pediatric Dentistry shares its acronym, the AAPD with another respected national organization, The American Association of People with Disabilities...how fitting.
Steven Perlman, DDS, MScD, DHL (hon)
Rick Rader, MD, FAAIDD, FAADM, DHL (hon)
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LETTER 3:
American Academy of Pediatric Dentistry
211 East Chicago Avenue, Suite 1600
Chicago, IL 60611-2637
Dear Members of the American Academy of Pediatric Dentistry,
We, Patient Advocates for Optimal Health (PAOH), respectfully urge the
American Academy of Pediatric Dentistry (AAPD) to reconsider its decision to
adopt an “age-defined specialty”. This move has significantly resulted in
denying many patients with disabilities access to essential dental care.
It is important to note that the AAPD’s previous guidelines, which allowed
clinicians to exercise their professional discretion, have been a lifeline for
patients with disabilities. By supporting clinicians’ freedom to make
reasonable accommodations, these guidelines ensured these vulnerable
patients continued receiving the necessary care.
The new “age-defined” policy, however, poses a substantial risk to this
patient population. The implementation of this policy has not only limited
clinicians; ability to provide necessary care but also demonstrates deliberate
indifference to the rights of individuals with disabilities. These patients, who
already face significant barriers in accessing dental care, have found
themselves entirely without options, as the policy has been implemented as
currently defined.
We respectfully request that the AAPD consider the potential consequences
of this policy change and reconsider its decision to ensure that the needs of
all patients, particularly those with disabilities, are adequately met. A policy
that supports flexibility and inclusivity is not just a choice but a necessity to
better serve the diverse needs of the patient community and uphold the
principles of compassionate care central to pediatric dentistry.
Thank you for your attention to this critical matter. Your thoughtful
consideration is greatly appreciated.
Sincerely yours,
Steven Perlman, DDS, MScD, DHL (hon)