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Executive Summary
Healthy, Happy Smiles gives us a glimpse into the experiences of parents and caregivers in NorthCarolina as they access oral health care for their children and navigate and reflect on the obstacles in their way. This report includes stories from parents and caregivers across the state collected by members of the Parent Advisory Council, and interview results on the experiences of Medicaid members seeking oral health care for their children. This report allows us the opportunity to listen to parents and families’ visions of accessible, affordable oral health care in North Carolina. It is intended to be a reference for advocates, policymakers, clinicians, funders, and others interested in improving the systems of care that address oral health needs for children.
Themes Include:
- Parents and caregivers describe barriers to care, factors which limit accessibility of oral health care for children in the state.
- Those barriers, and the lack of access, have huge implications on the lives of families in North Carolina: physical, emotional, and financial impacts.
Methods: NC Child supported the Parent Advisory Council in collecting close to 150 stories from parents and caregivers with diverse experiences in seeking care in 2021 and 2022. Those stories were analyzed by subject and theme. About 17% of those stories touched oral health care in some way.
Why this matters
North Carolina, like many other states, is exploring alternative payment models under Medicaid to improve and sustain utilization rates, while controlling costs. More than 1/3 of all those enrolled in Medicaid in North Carolina are children, and changes to Medicaid policy will directly impact the lives of many children and their families (1). In 2021, NC Child and members of the Parent Advisory Council sought out the stories of parents and caregivers seeking care for their children throughout the state. Many of those story tellers rely on Medicaid for coverage for their families. About 150 stories were collected and analyzed to identify common themes, one of which included challenges in obtaining oral health care. There are currently many obstacles to finding affordable, consistent, accessible oral health coverage; as of January 2022, the U.S. Health Resource and Services Administration has partially or fully designated all 100 North Carolina counties as Dental Health Professional Shortage Areas (2). This means North Carolina residents living across the state struggle to find oral health care today. Lack of access is further compounded by social determinants of health such as income, racial bias, language inaccessibility, and availability of transportation.
During the 2022-2023 school year, 19.9% of kindergarteners had untreated tooth decay (3). In adulthood, individuals experiencing dental health issues are more likely to miss work and everyday events and more likely to develop mental and physical health conditions related to inadequate oral care. Lack of access to adequate dental care negatively impacts children and adults and has strong negative implications for our communities’ health, livelihood, and longevity.
North Carolina’s health officials have worked on improving the state of Oral Health Care under Medicaid for years: publishing and implementing plans focused on social determinants of health, evidence-based programs, collaborative practice models, and health literacy (4). However, pediatric tooth decay and caries remain the most common chronic diseases for our state’s children, with long term adverse effects: kids with dental problems and pain are more likely to have performance issues during the school day, nearly 3 times more likely to miss school, and less likely to complete homework assignments (5). Those with dental insurance coverage are more likely to experience good overall health, more likely to utilize habitual dental services, and less likely to need emergency dental care (6).
NC Child’s recent report on oral health access and utilization highlights data from DHHS illuminating the dismal landscape of oral health for children and pregnant persons on Medicaid. In 2020, 98% of North Carolina counties faced a shortage of dental health professionals, according to the U.S. Department of Health and Human Services (DHHS). Only 25% of children birth to 2, 56% of children 3-5, and a meager 7% of Medicaid-enrolled pregnant persons receive the dental care they need in North Carolina (7).
Inequities in access and quality are pervasive. Families in more rural counties have a harder time finding dental health providers compared to families who live in urban or suburban areas (8). In 2019, children enrolled in Medicaid were least likely to have received at least one oral health or dental service in eight eastern rural NC counties: Camden, Washington, Gates, Vance, Tyrell, Edgecombe, Chowan, Onslow (8). Cherokee and Swain counties in the mountains round out the bottom ten counties for children’s access to dental health care in North Carolina (8).
There are also significant differences in the use of oral health or dental service along the dimensions of race and ethnicity. As of 2019, Hispanic/Latino (74.1%), White (62.9%) and Asian (63.5%) children enrolled in Medicaid were more likely to receive at least one oral health or dental service compared to Black (55.6%), American Indian (53%) and Hawaiian or Pacific Islander (54.7%) children (5).
Methodology
Excerpts included in the report are derived from stories collected between 2019 and 2022 by the NC Child Parent Advisory Council. These stories describe the realities of seeking healthcare across North Carolina. Oral health care became a prevailing theme while analyzing these stories; for this report, we sought out stories from contributors with personal experiences seeking dental healthcare in a variety of North Carolina counties.
The NC Child Parent Advisory Council is comprised of 15 parents from a broad range of socio-economic, racial, ethnic, and geographical backgrounds. More than half are parents of color, and more than 40% live in rural communities. Several of the PAC members are parents of children with special health care needs. They come from all regions of our state. The council’s membership is highly reflective of the NC Medicaid program, and that is also true of the community members whose stories were collected.
The stories collected from North Carolina’s parents are shaped by aspects of identity: language and cultures of origin, disability, education. Just as families’ lives and experiences are complex and diverse, the obstacles to care affect them in a variety and multitude of ways.
Themes
Accessibility-Barriers to Care
Dental homes can help ensure patients receive care in a safe, culturally sensitive, individualized, comprehensive, continuous, accessible, coordinated, compassionate, and patient- and family-centered way, but they require access to a provider that will take the family’s insurance within a reasonable distance from the family’s home. Many parents describe struggling to find an oral health provider for their children that would accept their insurance, like this parent from Buncombe County:
“To begin with, many of the dentists listed on the Medicaid website as accepting that insurance do not actually accept Medicaid. This results in valuable time wasted by the parent, having to call each dentist individually, especially because on the website they are not listed by practices as people commonly know them, and ask the doctor’s office just to be told no. And often with a snide dismissive tone by the office staff answering the question, which is highly embarrassing. In addition, these dental practices are often overcrowded. They’re staffed by people that seem they would rather work anywhere else. And it contributes to a general overall negative tone in the office. When you have a sensitive child, like we do, that matters. In our area, the last time I checked, there was a grand total of one dentist accepting Medicaid.”
Another parent describes traveling outside her county to find oral health care:
“We used to live in an area where dentists who took Medicaid were prominent. We could walk to our dentist. This was in Nash County. In Watauga it is impossible. We drive to Ashe County, which is over 30 minutes away. My kids, who are both special needs, get help through the school a lot of times.”
Accessibility is also limited by ability or need; parents of children with special needs have shared accounts of struggling to find quality care. Accessibility includes adequate accommodation for children and their needs.
After a bad experience with the sole provider who accepts Medicaid, one parent describes paying out of pocket for their special needs child’s oral health care:
“We have been paying out of pocket for her dental care since. Thankfully, that has just meant cleanings and some x-rays, but now it’s time for sealants, which our current dentist has quoted me at $93 a tooth. We cannot afford that. And I’m now in a position of trying to decide how to get my daughter the care that she needs.”
Impact of Barriers
The ramifications of inaccessibility in oral healthcare are acute and long term: without access to preventative and responsible dental care, it’s much more likely that patients develop painful and costly long-term oral health issues. Limited access or a complete lack of oral health care access will have physical, emotional, and financial consequences on children and their families. In fact, over 34 million school hours are lost each year because of unplanned urgent dental care, with children from high-income homes significantly less likely to lose school hours due to urgent dental care than those in low-income homes (8).
Physical
Lack of access to oral health care has several identifiable impacts on the North Carolina community. Early establishment of good dental hygiene is imperative, but ongoing lack of access to timely preventative and responsive dental care makes it difficult to keep up with dental appointments and treatment. Pain and discomfort due to dental issues resulting from inaccessibility to care can impact day-to-day activities and responsibilities, leaving people less able to participate in their work, family, and community life. Furthermore, inadequate access to oral health care can have a profound impact on whole-body health; prolonged dental issues and untreated oral disease can lead to an increased risk of infection, heart disease, and multiple types of cancers. The reality, however, is that Medicaid does not always provide children with the care they need, and many adults go without oral health care entirely.
A Wayne County mom recounts her experience trying to find care for her son:
“I have had trouble getting one of my sons the dental care that he needs. He has pain in his gums, pain while eating, jaw pain, tooth decay, severe headaches, trouble closing his mouth and difficulty speaking. My son was referred to an orthodontist by his dentist, and after the evaluation I was told that his teeth aren’t bad enough to be covered by Medicaid. Since then I have submitted a hearing. The hearing was also denied. I was told it was denied because [his condition did not appear severe enough to be covered]. After the hearing I was given a payment plan that I know I cannot afford. What about the pain? What about the tooth decay? What about the other ailments going on with my son that’s causing these issues?”
Another Wayne County parent echoes worries over physical consequences of the lack of preventative and responsive oral health care:
“Getting braces for my son [has been a challenge]. My concern is that my son is in pain and needs proper dental care.”
Emotional
A lack of access to dental care can result in physical discomfort and pain, but we do not always consider the mental toll this lack of access can also cause. This was a reoccurring theme in the story collection. Self-consciousness due to appearance and not wanting to smile due to a lack of care, lacking sufficient funds to cover the cost of care, and missing out on everyday life due to pain or conditions caused by dental issues are all factors that can cause a serious blow to the mental health of patients. One North Carolina mom details the impact on her child’s mental health by saying the following:
“My son’s mental health is affected. He feels uncomfortable smiling. This affects his self-esteem. Teeth are very important. We literally eat with them. We talk with them. We smile and we are judged on the appearance of our teeth, as well.”
Adequate access to oral health care improves quality of life and decreases the long-term risk of developing ailments related to insufficient dental care. Access prevents the decrease in work capability and community participation mentioned previously, increases whole-family dental health, and improves overall wellness (6).
Financial
Although dental services are part of a comprehensive set of benefits provided through the Early and Periodic Screening, Diagnosis, and Treatment Program to child beneficiaries of Medicaid, cost continues to be a barrier for families seeking oral health care for children. Regardless of age, income, or type of insurance, more people report financial barriers to dental care than to any other type of health care (11). Without access to a dental home children are much more likely to require costly emergency oral health care, as was the case described by a North Carolinian mom:
“My son had an accident, he has autism…and lost his two front teeth. We went to the emergency room and they tried to glue his two teeth back together, which was not possible… The next day the emergency doctor told me to go immediately to the dentist and I couldn’t take the time to go through Medicaid. I called about four providers and they were not part of Medicaid either. So we had to go to a private dentist and pay for it ourselves. The treatment [was] extremely expensive and having Medicaid and not being able to use it, obviously greatly affects our family. [My son] was affected psychologically, he was very afraid to go back to school without his teeth…we were left with 12,000 dollars in debt because it was his two front teeth and that obviously had an impact on our family’s finances…the impact that an emergency like this has on the life of a person with a disability is very big.”
Family Voice is Important.
All children need oral health care to some degree or another, and these stories from parents and caregivers highlight obstacles, impacts, and expectations for oral health care for their children. Family voice gives us insight into how policy affects peoples’ lives. We hope advocates, policymakers, clinicians, funders and others will use these stories and themes to support transformational systems change in oral health care.
Endnotes
1. N.C. Department of Health and Human Services, NC Medicaid. (2022). North Carolina Medicaid and NC Health Choice Annual Report for State Fiscal Year 2022. https://medicaid.ncdhhs.gov/ncmedicaid-annual-report-sfy2022/download?attachment#:~:text=Child%20%26%20Family%20Well%2DBeing.,health%20of%20children%20and%20families.
2. Hutchinson, L. “The State of North Carolina Oral Health in 2023,” NC Oral Health Collaborative. July 31 2023.
3. N.C. Department of Health and Human Services, Division of Public Health, Oral Health Section. “Kindergarten Oral Health Status 2022 – 2023 Regional Race/Ethnicity Summary.” July 2023.
4. North Carolina Department of Health and Human Services. (2021 May 17). NCDHHS Releases NC Oral Health Improvement Plan to Remove Barriers to Dental Services and Reduce Oral Health Disease for North Carolinians [Press release]. https://www.ncdhhs.gov/news/press-releases/ncdhhs-releases-nc-oral-health-improvement-plan-remove-barriers-dental-services
5. Foundation for Health Leadership and Innovation. (2019). Portrait of Oral Health in North Carolina. https://oralhealthnc.org/primary_resources/portrait-of-oral-health-in-north-carolina/
6. Ghoneim, A., D’Souza, V., Ebnahmady, A., Kaura Parbhakar, K., He, H., Gerbig, M., Laporte, A., Hancock Howard, R., Gomaa, N., Quiñonez, C., & Singhal, S. (2023). The Impact of Dental Care Programs on Individuals and Their Families: A Scoping Review. Dentistry journal, 11(2), 33. https://doi.org/10.3390/dj11020033
7. NC Child. (2021). Tooth Dismay. https://ncchild.org/publications/tooth-dismay/
8. North Carolina Department of Health and Human Services, Division of Public Health, Oral Health Section. (2021). 2020-2025 N.C. Oral Health Improvement. https://www.dph.ncdhhs.gov/oral-health/nc-oral-health-improvement-plan/open
9. Naavaal, S., & Kelekar, U. (2018). School hours lost due to acute/unplanned dental care. Health Behavior and Policy Review, 5(2), 66-73.
10. Poor dental hygiene can lead to serious health problems. UF Health. (2016, March 4). https://ufhealth.org/stories/2016/poor-dental-hygiene-can-lead-to-serious-health-problems
11. Vujicic, M., Buchmueller, T., & Klein, R. (2016). Dental care presents the highest level of financial barriers, compared to other types of health care services. Health affairs, 35(12), 2176-2182.
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