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A place to call home

Deamonte Driver, the 12-year-old Maryland boy who died in February from a bacterial brain infection that spread from an abscessed tooth, is a tragic example of a child who needed a place to call home.

Deamonte’s family was poor and living in a homeless shelter. He and his four brothers, though enrolled in the state’s Medicaid program, never had primary dental care providers and suffered from untreated dental disease. In trying to access dental care for her children, Deamonte’s single mother, Alyce, became hopelessly mired in the confusing bureaucracy of the Maryland Medicaid HealthChoice managed health program. Dental providers participating in the program were sparse, and the wait times for appointments, even for urgent care, were measured in months rather than days or weeks.

The Driver boys all had a primary care doctor — a medical home — a pediatrician who treated their childhood illnesses, gave them their immunizations, made sure they were healthy to play sports,” said Laurie J. Norris, an attorney for Maryland-based The Public Justice Center, during her testimony before the Congressional Domestic Policy Subcommittee, Oversight and Government Reform Committee’s May 2 hearing on Deamonte’s death.

“But the Driver boys never had a regular primary care dentist — a dental home,” she said. “An identified provider who could assess their risk for developing dental disease by age 1, check their mouths and new teeth every six months during toddlerhood, provide education to their parents about preventing dental disease, instruct the boys in how to properly brush and floss, recommend fluoride treatments and dental sealants as they grew older, clean their teeth every six months, and watch for developing cavities that could be nipped in the bud, preventing severe disease, pain, tooth loss, and in Deamonte’s case, death.”

Ironically, it was Deamonte’s younger brother, DaShawn, who seemed to be in the gravest need of dental care. His face was swollen with six abscessed teeth, and he was suffering from terrible pain. Deamonte never complained of dental pain, but began having excrutiating headaches, which were first diagnosed as sinusitis, then as a brain infection in mid-January. Deamonte died Feb. 25 after six weeks of hospitalization, two brain surgeries and one tooth extraction.

Following Deamonte’s death, the first of DaShawn’s abscessed teeth was extracted in March by an oral surgeon participating in Maryland’s Medicaid managed care program. But no antibiotics were prescribed, and the attending oral surgeon recommended pulling one tooth per month over the course of five months. A panicked Alyce transferred DaShawn’s care to the pediatric dental clinic at the University of Maryland, Baltimore College of Dental Surgery where the remaining five abscessed teeth were extracted at once.

A national shame

Although Deamonte’s death was an extreme outcome of preventable dental disease, his family’s story of dental neglect, disease, pain and seemingly insurmountable barriers to accessing dental care can be repeated for the families of millions of American children and special needs patients.

Despite provision of dental care through Medicaid, access to dental care for needy children remains dismal. Of the 28.8 million Medicaid-eligible children nationwide, only about 30 percent have ever received any dental care. The surgeon general’s 2000 report, Oral Health in America, estimated that 25 percent of the nation’s most vulnerable children carried 80 percent of the burden of untreated dental disease, and that poor children were twice as likely as their more affluent counterparts to suffer from untreated dental disease.

This trend is confirmed as continuing by the Centers for Disease Control and Prevention announcement in April that, despite across the board improvements in America’s oral health, tooth decay in children aged 2 to 5 years old increased by 15 percent during the period between 1999 and 2004. The CDC’s report, Trends in Oral Health Status—United States, 1988-1994 and 1999-2004, also stated that dental disease is untreated in 74 percent of the children experiencing it.

Clearly, society is failing these kids, despite federal and state programs in place to provide for them. The question is, WHY?

Florida Medicaid Dental Services

Medicaid was born of Title XIX of the Social Security Act of 1965. Through Medicaid, the federal government subsidizes state medical health for certain vulnerable, low-income populations through matching funds, but allows states broad discretion in establishing eligibility qualifications and service coverage.

Nonetheless, in order to receive federal matching funds, state Medicaid programs must meet certain federally mandated service requirements. This includes dental care for children, aged 0 to 20, through the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) program, which provides for preventive health services equal to the access to care received by privately insured children. The State Children’s Health Insurance Program (SCHIP), established under Title XXI of the Social Security Act in 1997, gives states funding with the option of broadening health care coverage, including dentistry, for uninsured, Medicaid-ineligible children from low-income families, although it does not specifically mandate dental services as a required benefit. Disabled adults also receive full dental services through Medicaid. For non-disabled adults, Medicaid covers only emergency services related to extraction of abscessed teeth, and, for a qualifying few, dentures and denture-related services.

According to state figures, Florida’s 2004 Medicaid expenditures provided health coverage for nearly 1.5 million low-income and foster children in the state. Only about 25 percent of these children ever received dental care, and of the state’s $12.8 billion Medicaid budget, less than 1 percent of expenditures on services went to dental care of any kind for children and adults combined. These figures almost exactly mirror national averages of Medicaid expenditures on dental care, wherein dental services represent only 1 percent of the $258 billion national Medicaid budget.

Why is it that such a tiny fraction of Medicaid is spent on dental services when dental disease in poor children is so widespread? Presumably, children have the opportunity to receive dental care through Medicaid, and Medicaid would fund the services if they were provided. Yet, in 2005, of Florida’s nearly 9,500 practicing dentists, less than 1 percent were active as Medicaid providers. That same year, 42 percent of the state’s 4,761,499 children were enrolled in Medicaid or HealthyKids (SCHIP) and eligible to receive dental treatment, but the ratio of covered children to Medicaid dental providers was a staggering 2,213 children for every provider dentist.

Regardless of the reasons at the core of these disparities, Florida is among a growing number of states forced to defend its Medicaid program in federal court. In a class action suit brought against the state’s Medicaid administering agencies — the Florida Agency for Health Care Administration, the Florida Department of Children and Family Services, and the Florida Department of Health — on behalf of the state’s 1.6 million Medicaid eligible children, claims are made that the allowable reimbursements do not cover costs of delivering medical and dental care and the reporting requirements to receive payment are burdensome. The plaintiffs in the suit, which was filed in November of 2005 in the U.S. District Court for the Southern District of Florida in Miami, include the Florida Chapter of the American Academy of Pediatrics, the Florida Academy of Pediatric Dentistry, and the families of six children enrolled in Medicaid who experienced significant hardship when attempting to obtain access to care through the program.

“Deamonte’s tragic and unnecessary death due to inability to receive proper care should be viewed as morally unacceptable in this country,” said Florida Academy of Pediatric Dentistry President Peter B. Claussen, D.D.S., a Panama City, Fla. pediatric dentist. “It is unconscionable to have children wasting away in one of the wealthiest nations in the world due to inadequate funding of health care programs such as Medicaid.”

Claussen said the Florida Academy of Pediatric Dentistry has repeatedly requested the Florida Legislature to adequately fund Medicaid and other health access programs for Florida’s children. But funding has actually decreased over the years due to legislative inaction, inflation, and the increase in the state’s Medicaid-eligible population.

“The Florida Academy of Pediatric Dentists felt obligated on behalf of Florida's children to seek judicial relief through the federal courts,” Claussen said. “We believe that the courts will follow what has been the ruling in other states and mandate adequate Medicaid funding in Florida, and we look forward to the day when every child in

Florida can have adequate access to dental care, notwithstanding their economic situation."

The class action suit alleges that the state has not been effective in complying with federal law in regards to its obligations to provide eligible children with “primary, preventive, acute and specialty care and services which are necessary to their good health and development” as required by the Title XIX Early and Periodic Screening, Diagnosis and Treatment Services program.

“The Florida Dental Association has committed $100,000 over a three-year period in support of this lawsuit,” said Florida Dental Association President Nolan W. Allen, D.D.S., a general dentist practicing in Clearwater, Fla. “We’re trying to get an increase in reimbursements to increase the number of providers willing to participate. Right now, the state ranks 49th in reimbursement rate and we’re at the 25th percentile of the usual and customary rate.”

Allen notes the FDA has lobbied for years for significant increases in the reimbursement rate, and says the state’s managed dental care program is further exacerbating the access to care problem for children receiving dental services through Medicaid.

“We’re going backwards at this point with the state’s managed dental care program. Fewer children are being screened and fewer children are being treated within the program,” Allen said. “That’s why the FDA is supporting this lawsuit, because it’s the right thing to do for our kids.”

The suit, which is now being heard after the state’s failed dismissal attempt earlier in the year, seeks a judgment forcing the state to provide reimbursement for services adequate to assure providers will participate in the program; to “bring” health care services to the children through education, cooperative partnerships with other agencies serving children to boost enrollment; and in providing scheduling, transportation and case management assistance to assure families are able to make and keep health appointments for their children. Finally, the suit petitions the court to require the state Medicaid program to assure that any health maintenance organizations that participate in Florida’s medical assistance program — like Atlantic Dental Inc., the state’s prepaid managed dental care plan pilot project in South Florida — have the ability to effectively deliver health care to all the children enrolled to receive it.
"As a pediatrician and secretary of the Agency for Health Care Administration, it is clear to me that ensuring access to dental care for Florida's children must continue to be a priority for the agency,” said Andrew C. Agwunobi, M.D., secretary for the Agency for Health Care Administration, the agency responsible for administering Medicaid and a co-defendant named in the suit.

The agency acknowledges access to dental care and other specialty areas is problematic for children nationwide and in the state, especially those living in rural areas, but points to recent agency efforts to address the issue here in Florida.

"The agency has already implemented pilot strategies to attempt to improve access to dental care and has placed improving access to specialty care, including dental care, as one of our top priorities for the next few years,” Agwunobi said. “However, we cannot solve this issue single‑handedly. Achieving this goal requires collaboration. The providers, the state and all other stakeholders, including beneficiaries themselves, must work together to improve access to specialty care."

Are we doing enough?

Many dentists provide pro bono services to needy patients, and private practitioners are credited by the state for providing 58 percent of all dental care to Florida residents at or below 200 percent of the Federal Poverty Level. Additionally, according to state figures, more than 1,400 dentists participating in Project Dentists Care, Inc. extended 19,000 volunteer hours to provide dental care to low-income Florida residents, which organized dentistry estimates to be more than $4 million in reduced fee and pro bono care.

While the profession has made strides in increasing volunteerism, an economic solution to balance the operating expenses of a typical practice with continuity of care for needy patients is still the ideal rather than a practical model. The need for low cost dental care far outstrips the availability offered by the profession and the questions remain, “Does my practice work hard enough in providing a dental home for vulnerable children like Deamonte Driver? Or, does the business plan of my practice turn a blind eye to their needs?”

Each dentist holds the answers to those difficult questions in his or her own heart.