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Oral Health Care For Californians With Special Health Care Needs: A Chronic Problem in Need of a Solution
from CDA Journal-JUNE 2022: Oral Health Care for People With Special Health Care Needs: A Call to Action
Ray E. Stewart, DMD, MS, is a professor and chair of pediatric dentistry at the University of California, San Francisco. He has spent his career providing oral health services to children who are medically compromised or have other special health care needs. Dr. Stewart is currently leading an effort to expand the availability of preventive and early interventional services to special needs patients of all ages throughout Northern California. Conflict of Interest Disclosure: None reported.
Ben Meisel, MD, or “Dr. Ben,” is a pediatrician focused on improving the lives of children with special health care needs (SHCN). He is the medical director of California Children’s Services, San Francisco, a professor of pediatrics at the University of California, San Francisco and the former medical director of the medical camp The Painted Turtle. Dr. Ben is also an award-winning children’s recording artist and the founder of Dr. Ben & Company “Building Play Into Health,” a platform for development of childhoodempowering music, educational gaming and kids’ health entertainment for children with SHCN. Conflict of Interest Disclosure: None reported.
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ABSTRACT
This manuscript sets the stage for the other articles in this issue pertaining to the current status of dental care for persons with special health care needs in California and addressing the chronic problem of reduced access to care faced by this population. The lack of access to oral health care experienced by the 7 million special health care needs (SHCN) patients in California serves as a proxy for the rest of the nation where there are too few providers who are adequately trained for and/or comfortable in accepting SHCN patients in their practices. This issue of the Journal explores the root causes of these disparities and offers potential solutions moving forward.
Keywords: Special needs dentistry
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It has long been recognized that the chronic lack of access to oral health care for persons with special health care needs (SHCN) is a nationwide problem. While the reasons for this inequity are multiple and vary from state to state, in California the primary causes of the disparities that confront this population can be attributed to three primary deficiencies:
■ Inadequate number of adequately trained general dentists equipped to treat adult SHCN patients.
■ Lack of appreciation of the size of the SHCN population and the magnitude of the disparities in health care status that arise from the systematic exclusion and barriers that exist for access to oral health care services by the public, policymakers and legislators.
■ Inadequate resources dedicated to overcoming the barriers to care (financial, physical and geographic) that confront SHCN patients, their families and/or caregivers.
The purpose of this paper is to explore the origins of these deficiencies and to offer possible solutions and resolutions to a situation that has existed for decades and has resulted in significant and chronic disparities in access to care for the SHCN population.
A person with SHCN is defined by the American Academy of Pediatric Dentistry (AAPD) as one who has “any physical, developmental, sensory, behavioral, cognitive or emotional impairment or limiting condition that requires medical management, health care intervention and/or use of specialized services or programs.”
The Maternal Child Health Bureau defines a child with SHCN as those “who have or are at risk for a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
These definitions include a wide range of developmental or acquired disabilities with varying degrees of severity. A single individual with SHCN may manifest one or several health-related issues. The majority (78.4%) of patients with SHCN manifest one or more conditions described in the FIGURE. [1]
An estimate of the number of patients who qualify as having SHCN in any geographic location is difficult to determine because census data or other populationbased studies have not focused specifically on this population. On a national level, an approximation of the number of children (below age 21) who have SHCN is 18.5% (13.6 million), and 1 in 4 households (24.8%) have one or more children with SHCN. 2 There are no similar statistics for the populations over age 21; however, with the growing number of medical problems that occur with age and with the onset of dementia and need for assisted living, the estimate will significantly increase.
In the 2001 National Survey of Children with Special Health Care Needs, dental care was among the largest of unmet needs, [3] a finding that has remained consistent for nearly two decades. [3–5] The specific category of dental care for children with SHCN has been reviewed and compared with healthy children. [5,6] Parents of children with SHCN are more likely to report unmet dental care needs in their children compared with unaffected children. [7-9]
In California, there has been little success in tracking dental health status in persons with SHCN. Previous attempts to do so have failed due to the lack of comprehensive claims data or populationbased assessments. The Lucile Packard Foundation for Children’s Health at Stanford University attempted to track dental health data on children with special health needs but reported “we have not found reliable data to report on dental care for children and youth with special health care needs.” To address this problem in the future, we will need to identify a way to accurately measure and track the oral health needs of the SHCN population.
Without specific data and information that would be derived from a well-planned and executed needs assessment, we are left with “best estimates” based on prevalence of developmental disabilities per 1,000 population as tallied by the National Survey of Children’s Health (NSCH) Data Resource Center, which estimates the SHCN population at 18.5% of the total population.
The 32 counties in Northern California have a total population of 14,389,000. [10] Using the 19% population estimate would mean that approximately 2,734,000 persons in Northern California have SHCN. In the San Francisco Bay Area alone, with a population of 7,235,000, a 19% SHCN population means that there are 1,374,650 people with SHCN, most of whom depend on the Medicaid system to provide health care services. It quickly becomes obvious that the volume and unmet demand for care far exceeds the current health care system’s ability to provide even basic oral health care services for the SHCN population. With fewer than 40% of practicing dentists in California participating in the Medi-Cal Dental Program, there is not a reasonable expectation that the current workforce is capable of meeting the needs of this population.
Access To Care: Barriers Faced by the SHCN Population
Patients with SHCN face significant disparities in general health care status that may arise from unconscious bias, discrimination, lack of access to care or systematic exclusion from health care services in general. [9–12] More specifically, they also face significant barriers to oral health care. These barriers may be either environmental/system-centered or nonenvironmental. [13] Environmental barriers to obtaining oral health care include difficulties finding a dental office close to home that accepts the patient’s dental insurance and is able to accommodate the patient’s unique needs. [11] Nonenvironmental factors are those that concern the patient and may include those with developmental disabilities, complex health care issues, behavioral issues, dental phobias, patient anxiety or oral defensiveness, all of which may make it difficult for an SHCN patient to tolerate dental treatment in a traditional office setting. [13]
In spite of these many limitations, it is important to realize that many SHCN patients can be treated in the traditional clinical setting with modest alterations that allow proper access without the increased medical risk or additional cost of general anesthesia. However, the provision of this care will invariably require additional time and involve the use of properly trained providers and auxiliary personnel or the use of advanced behavior management techniques to complete an examination or procedure. [15]
A principal reason that a disparity exists in access to care for SHCN patients seeking dental services is that too few providers are properly trained and willing to serve this population of patients, especially adults. In general, most general dentists lack adequate training and do not feel comfortable accepting SHCN patients into their practices. Even fewer are equipped or willing to provide services at settings such as schools, day care, special education centers, residential facilities and longer-term care facilities. Many providers who might otherwise be willing to see SHCN patients decide not to due to the extra time and effort required to collect and evaluate a complex medical/social history, acquire necessary consents (when complex legal relationships exist around guardianship and decision making) and accurately determine whether their practice is, or is not, a good match for an SHCN patient. Those few providers and practices that do elect to provide care for the SHCN population and do participate in the Medi- Cal Dental Program are so overwhelmed by the demand for their services that a two to three year wait for appointments is not unusual. Such delays in care often result in serious complications. Routine, nonacute oral health issues often progress to become acute emergencies requiring emergency department visits or, worse yet, hospitalization for treatment under general anesthesia. Oral health needs that could have been addressed preventively now escalate to the need for much higher risk and more costly care. Not infrequently, patients with SHCN suffer from multiple associated medical conditions that become intensified and complicated by the coexistence of untreated dental disease. This failure to recognize the direct relationship between poor oral health and poor general health propagates a downward spiral, frequently resulting in the utilization of emergency services or hospitalization to treat a resulting acute medical condition.
Lack of insurance coverage, low Medicaid reimbursement, high out-ofpocket expense and high deductibles are frequently cited as common financial barriers that disproportionately burden families of patients with SHCN when seeking medically necessary oral health care. [13,16–20] Additional environmental- and system-centered barriers to care are related to the financial aspects of reimbursement by third-party payers and particularly their willingness to compensate for the additional time required to provide dental care for individuals with SHCN. [14] Patients with significant medical complexity require longer face-to-face appointments to review a thorough history as well as additional nonfaceto-face time for medical consultations, documentation and care coordination. [21–23]
Possible solutions to these problems exist in the form of potential payment reforms including the implementation of and reimbursement of codes such as CDT code 992017 discussed elsewhere in this issue that would allow dental providers to follow an important trend similar to those of their medical colleagues who currently utilize reimbursable “prolonged service codes” (CPT codes 99354 and 99356). [24]
Similarly, the recognition of the value of care coordination activities for patients with SHCN could reform the current system that responds to episodic needs of patients to being one that is more systematically proactive and comprehensive, [25] thereby reducing the incidence of hospitalizations and avoiding costly emergency department visits. [26]
Dental Care for Pediatric SHCN Patients
Federal regulations (Section 1905 of the Social Security Act and Title 42 Code of Federal Regulations (CFR) Section 441.50) guarantee access to oral health care services for all children aged 0 to 21 through the Early and Periodic Screening, Diagnostic and Treatment (ESPDT) program. This mandate would seem to assure that all children and adolescents, including those with SHCN, have access to comprehensive oral health services. Unfortunately, the reality is that the SHCN population is one that primarily relies upon the Medicaid dental benefits for basic oral health care services and the low patient-provider ratio virtually guarantees a lack of access to basic oral health care services for many of those with SHCN. Fortunately, in California, there is a robust safety-net system of federally qualified health centers (FQHCs) and community health centers through which California SHCN patients aged 0 to 21 are able to obtain basic preventive, restorative and surgical services. Additionally, California’s existing five pediatric dentistry, 16 general practice and seven advanced education in general dentistry residency training programs located at dental schools and university hospitals throughout the state are available to provide care to the SHCN population. Access to basic services through these school and safetynet sites varies greatly and is especially sparse in rural communities. At best, nonemergency, new patient appointments for SHCN patients covered by Medicaid often require wait times of several weeks to several months. For older pediatric SHCN patients (aged 16 to 21) requiring nonemergency restorative or surgical care under general anesthesia, the wait time can be as great as 12 to 36 months.
Children aged 0 to 16 with SHCN have traditionally received their oral health care from the pediatric dentistry community. Pediatric dentistry training programs incorporate significant portions of their didactic curriculum and clinical experience to the care and treatment of SHCN patients. Although most pediatric dentists in private practice do not accept Medi-Cal Dental as reimbursement for their services, the majority do see children and adolescents with SHCN whose parents have private insurance. In addition, there are many safety-net programs in California including the FQHC networks and university-based pediatric dentistry training programs that see large numbers of child and adolescent SHCN patients for routine preventive oral health care. Some of these safetynet programs, especially the university programs, provide comprehensive restorative and surgical services to this population up to approximately age 16 to 17. It is an entirely different world for older patients with SHCN who face a situation where there are very few general dentists who have been properly trained or are willing to assume the oral health care of the adult SHCN population. [27–29,32] The relatively small number and distribution of pediatric dentists means that broader involvement by general dentists is necessary to address access to care issues, especially transition of patients with SHCN. [29]
Dental Care for Adults With SHCN
It is widely recognized and published that adults with SHCN face numerous, sometimes onerous, obstacles in obtaining basic health care services as compared to the general population. [27] Access to oral health care services is foremost among the specific unmet health care services for the population with SHCN upon reaching adulthood when their oral health care needs may go beyond the scope of the pediatric dentist’s expertise. At this point, it may no longer be in the young adult’s best interest to be treated solely in a pediatric facility. [28,29] Only 10% of surveyed general dentists reported that they treat patients with SHCN often or very often, while 70% reported that they rarely or never treat patients with SHCN. [34] A survey revealed that most pediatric dentists help patients with SHCN transition into adult care, but the principal barrier is the availability of general dentists and specialists willing to accept these patients. [35]
A 2005 survey of senior dental students noted that the provision of oral health care to patients with special needs was among the top four topics in which they were least prepared. [30] This self-perceived lack of preparation of future dentists bodes poorly for effective transitioning of adult patients with SHCN. Improving training at the predoctoral and postdoctoral levels is needed to increase the general practitioners’ skills and comfort for treating patients with SHCN. [33–38]
The AAPD recognizes the importance of transitioning patients with SHCN to an adult dental home as they reach the age of majority. Finding a dental home to address their special circumstances while providing all aspects of oral care in a comprehensive, continuously accessible, coordinated and family-centered manner has proven to be a formidable challenge in California and elsewhere. [39]
Recognizing the problems associated with the transition from pediatric to adult care are formidable, and in an attempt to improve health care transition for adolescents with SHCN and young adults with chronic conditions, a policy statement was established by several medical organizations. [38] The policy statement articulated six critical steps to ensuring the successful transition to adult-oriented care. These policies, although made for medical providers, can also apply to dental providers and oral health delivery systems as well. They are:
■ To ensure that all young people with special health care needs have a health care provider who takes specific responsibility for transition in the broader context of care coordination and health care planning.
■ To identify the core competencies required by health care providers to render developmentally appropriate health care and health care transition and ensure that the skills are taught to primary care providers and are an integral component of their certification requirements.
■ To develop a portable, accessible, electronic medical record to facilitate the smooth collaboration and transfer of care among and between health care professionals.
■ To develop an up-to-date detailed written transition plan, in collaboration with the patient and their family.
■ To ensure that the same standards for primary and preventive health care are applied to young SHCN people with chronic conditions as to their peers.
■ To ensure that affordable, comprehensive, continuous health insurance is available to young people with chronic health conditions throughout adolescence and into adulthood.
When patients with SHCN reach late adolescence and early adulthood, they begin to develop dental and medical problems specific to adulthood and are beyond the scope of pediatric practice. At this age, they also begin to encounter significant difficulty accessing oral health care. Beginning at age 16 to 17, few pediatric dentists continue to treat the SHCN population, and the vast majority of general dentists, regardless of practice setting, do not have the requisite training or experience. [39-41] An additional barrier occurs at age 26 when SHCN patients are no longer covered by their parent’s or guardian’s private insurance. Most must then rely upon various publicly subsidized programs, further intensifying the oral health care access problem.
A survey revealed that most pediatric dentists help patients with SHCN transition into adult care, but the principal barrier is the availability of general dentists and specialists willing to accept these patients. Improving training at the predoctoral and postdoctoral levels is needed to increase the general practitioner’s skills and comfort for treating patients with SHCN. [31–33]
Addressing the manpower issue is of utmost importance. Training and instruction for health care providers can be obtained through postdoctoral educational courses. In the U.S., programs such as general practice residencies and advanced education in general dentistry provide opportunity for additional medical, behavior guidance and restorative training needed to treat patients with SHCN. The Special Care Dentistry Association fellowship and diplomate programs and the Academy of General Dentistry’s mastership program also may provide opportunities to increase workforce competency. [33–35]
One notable example of an attempt to address the issue of lack of access to oral health care for adult patients with SHCN is San Francisco’s University of the Pacific, Arthur A. Dugoni School of Dentistry (UOP). Dr. Paul Subar and Dr. Allen Wong have created a special care clinic offering services to adults and adolescents with significant behavioral/ developmental needs. Due to overwhelming demand, there is still a long waiting list for routine dental appointments. They also offer dental care under general anesthesia in conjunction with California Pacific Medical Center OR. Though this attempt is admirable, due to limited OR availability for dentists, wait times for nonurgent treatment under general anesthesia can be as much as three years. It is abundantly clear that additional facilities as well as alternative methods for delivering care to SHCN patients, ideally located in remote and underserved communities, are necessary if we are to meet the enormous needs of this population.
The majority of adult patients with SHCN throughout California are beneficiaries of the Medi-Cal Dental Program and depend on this system for their oral health care needs. California is unique in this regard, as it is one of the few states that provide a dental benefit to adults enrolled in Medicaid. However, only 20% of California dentists in private practice accept Medi-Cal Dental patients. Thus, most patients with SHCN older than age 17 are forced to rely on the safety-net system of community health/ FQHC health center network to receive essential oral health care services. Most of the providers within this safety-net system do not have the training or experience required to treat patients with SHCN. These providers subsequently refer patients with SHCN to tertiary care medical centers and advanced education training facilities for routine and emergency services. Tertiary medical centers and advanced education training facilities are overwhelmed with the demand; thus, leading to 24- to 36-month waiting lists for services.
USCF Special Needs Dentistry Symposium
On Feb. 12, 2020, University of California, San Francisco, School of Dentistry Dean Michael Reddy hosted a national symposium addressing access to care problems faced by the SHCN community in California. Attendees represented various stakeholder groups and experts in the field of SHCN dentistry from California and across the nation who recognize that there is a significant segment of our population, those with SHCN, who have been neglected with respect to having access to basic oral health care services. These stakeholders reached a consensus that, under the direction of the Department of Health Services and state universities collaborating with the entire California oral health community, now is the time to correct this inequity and to develop and implement a strategy to eliminate this unconscionable injustice.
A solution to this problem in California will require the broad support of legislators and policymakers in state government, informed by patients, families, caregivers and providers. Patient and family advocacy programs like Family Voices of California must educate lawmakers and push for change. The UCSF Special Needs Dentistry Summit was a first step toward outlining a pathway forward to providing basic preventive and early intervention oral health services to California’s most vulnerable and dependent citizens. The proceedings of the symposium with specific outcomes and recommendations were published in a white paper currently available on the UCSF website. [42] A summary of specific symposium outcomes and recommendations follow.
Specific Summit Outcomes and Recommendations
■ Identify resources and fund a Special Needs Population Survey and Needs Assessment Pilot Project in Northern California (if not the entire state). Survey methodology could be shared and replicated throughout California. This survey and needs assessment would likely best be undertaken by the office of the California State Dental Director in collaboration with the various county health departments, with the assistance of the divisions of public health dentistry at UCSF and UCLA as well as the California Dental Association. The data derived from this survey and needs assessment is necessary as a baseline against which to measure any changes in access to care and the provision of increased levels of oral health care services (e.g., preventive and restorative services) to this population over time.
■ UCSF in collaboration with other partner institutions and universities with schools of dentistry and public health programs should continue to lead this initiative and identify resources necessary to support the project. A logical first step would be the formation of an interdisciplinary advisory group consisting of local and regional stakeholders to develop evidence-based policies/ protocols for serving the population with SHCN in California.
■ Proactively plan and pursue a legislative agenda designed to provide more state and federal funding for programs dedicated to improving access to oral health care for the population with SHCN.
■ Undertake a feasibility study to develop a network of dedicated special needs dental centers (similar to the studies recently established in New York, Pennsylvania and Arizona.)
■ Promote the formation of a joint UCSF/UOP/UCLA taskforce hosted by CDA to brainstorm best practices and to mount a unified statewide approach to supporting the adoption of legislation and policy development described previously.
■ Develop an interinstitutional curriculum, as required by the Council on Dental Accreditation (CODA), to provide all California predoctoral dental students sufficient training and experience working with patients with SHCN. This effort might best be achieved by utilizing the existing curriculum developed by the UOP faculty. A new CODA guideline (Standard 2-25) specifically addresses the necessity of training predoctoral dental students to provide care to the population with SHCN under the “Clinical Sciences Specific Standard Relating to Special Needs,” which states: Standard 2-25: Graduates must be competent in assessing and managing the treatment of patients with special needs.
Intent: An appropriate patient pool should be available to provide experiences that may include patients whose medical, physical, psychological or social situations make it necessary to consider a wide range of assessment and care options. As defined by the school, these individuals may include, but are not limited to, people with developmental disabilities, cognitive impairment, complex medical problems, significant physical limitations and the vulnerable elderly. Clinical instruction and experience with the patients with special needs should include instruction in proper communication techniques including the use of respectful nomenclature, assessing the treatment needs compatible with the special need and providing services or referral as appropriate.
■ Explore the possibility of creating or expanding existing GPR/AEGD programs at California’s existing dental training programs. Encourage predoctoral elective opportunities with primary care advanced training programs that emphasize SHCN care (GPR, AEGD, pediatric dentistry).
■ Form an interagency council between DHCS, DDS and CDPH to advocate for the expansion of the Medi-Cal Dental case management services. Case management is a valuable asset to assist practices, to facilitate completion of paperwork, gather necessary consents and properly match patients with an appropriate dental provider. This interagency dental council could also partner with CDA to fund a special needs dentistry professorship at each advanced training program in the state. This network of experts would provide a credible network of advocates for consistent standards, educational and clinical guidelines and the development of oral health care policy for the population with SHCN.
■ Support the design and development of a robust virtual dental home/ telehealth system. University-based faculty providers could virtually supervise and support ancillary personnel (RDH, RDA, RDA/EF) giving care to patients where they live. This would effectively reduce the need and demand for secondary and tertiary care under general anesthesia for the population with SHCN. n
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THE CORRESPONDING AUTHOR, Ray E. Stewart DMD, MS, can be reached at Ray.Stewart@ucsf.edu.
