Addressing the Oral Health of Florida’s Special Needs PopulationThe Surgeon General’s 2000 Report, Oral Health in America:...
Barnes, Amy            Head StartBrantley, Shelly       DCFBucciarelli, Rick      Florida Academy of PediatricsBurtner, Pa...
Seal, Charlene             Florida Developmental Disabilities                                     Council          Sloyer,...
One of the initial objectives of the workgroup was to define children with special healthcare needs (CSHCN) so that the wo...
•   May have genetic or systemic disorders that affect their oral health   •   May be undergoing medical treatments that c...
considered a disability. A ‘developmental disability’ is a mental or physical impairmentcaused by a disorder occurring dur...
Restricted physical dexterity may limit or prevent self homecare, present problems withdiet and nutrition, and limit mobil...
About two-thirds of general dentists identify patient behavior as the foremost       reason for their unwillingness to pro...
Maternal and Child Health ServicesThe Maternal and Child Health Services Block Grant (Title V) requires that states budget...
individuals with developmental disabilities; and training nurses, teachers, case managers,residential staff, and parents o...
assists dentists in treating patients with developmental and acquired disabilities, as wellas those long-standing patients...
ARC (PARC) is currently developing an onsite dental program with help from the FDA.(See
March 22-23, 2007  First Special Needs Workgroup Face to Face Working Meeting                   and State Oral Health Impr...
Administration                                                    $727Booth at Family Cafe June 8-10 (shared with Pinellas...
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  1. 1. Addressing the Oral Health of Florida’s Special Needs PopulationThe Surgeon General’s 2000 Report, Oral Health in America: A Report of the SurgeonGeneral (Report), concluded that “oral health is essential to the general health and well-being of all Americans and can be achieved by all Americans.”1 The Report stated thatthere is a “silent epidemic” of dental and oral disease that “restricts activities in school,work and home, and often significantly diminishes the quality of life.”1 The burden oforal disease tends to be borne heavily by individuals with low socioeconomic status; thevery young and the elderly; individuals living in isolated areas; and those individualswith special needs.1-3Access to oral health care for many of Florida’s citizens with disabilities, impairmentsand special needs is inadequate. The resulting lack of care places people with specialhealth care needs at risk for oral diseases, as well as systemic disorders. Consequently,many of Florida’s citizens with special health care needs, both children and adults,experience orofacial pain and discomfort. Oral conditions commonly observed in thisspecial population include: chronic toothaches from decayed teeth; missing and looseteeth; chipped and fractured teeth; loss of supporting bone structure; dental abscesses;malocclusion and misaligned teeth; and, compromised esthetics due to missing anteriorteeth. Parents report that when oral health care is not provided, these individuals sufferfrom seizures, malocclusions, tooth grinding and pain evidenced by grimacing. Oraldiseases may have a detrimental effect on an individual’s self-esteem, social interaction,education, career achievement, emotional state, and general systemic health. Clearly,poor oral health can and does have a significant negative impact on a person’s health andquality of life.SOHIP, ASTDD grant, Formation of Special Needs Workgroup and ParticipantsIn 2004, in response to the Surgeon General’s Report, his Call to Action and the HealthyPeople 2010 report, the Department of Health’s (DOH) Public Health Dental Programestablished a broad based coalition including participants from professionalorganizations, public organizations, government, academia, and the public to investigateoral health access issues and to develop a State Oral Health Improvement Plan (Plan). Akey recommendation of the plan was to form a Special Needs workgroup whose mandatewould be to determine the needs of Florida’s special needs population and develop anAction Plan to address these needs. In November and December of 2006, the DOHapplied for and received a $5000 grant from the Association of State and TerritorialDental Directors (ASTDD). The purpose of the grant was to develop an Action Plan andhold a forum on children with special healthcare needs (CSHCN). Invitations were sentout to various organizations and individuals asking for their willingness to participate onthe Individuals with Special Health Care Needs Workgroup (Special Needs Workgroup)and on February 21, 2007 the Special Needs workgroup convened the first of manymeetings via conference call. The following table represents the individuals andorganizations that currently serve or have served on the Special Needs workgroup. NAME ORGANIZATION 1
  2. 2. Barnes, Amy Head StartBrantley, Shelly DCFBucciarelli, Rick Florida Academy of PediatricsBurtner, Paul UFCDCarr, Natalie Florida Academy of Pediatric DentistryCerasoli, Mary AHCA - MedicaidChilders, David American Academy of PediatricsCorbin, Judith Jefferson CHDCoulter, Melinda Agency for Persons with DisabilitiesCrary, Julie PARC (Pinellas County ARC)Dowds, Debra Florida Developmental Disabilities CouncilFisher , Tad Florida Academy of Family PhysiciansGarvey, Timothy UFCDHakes, AnitaIsley, Amber Florida Academy of Family PhysiciansKhatri, Nilofer Florida Academy of Pediatric DentistryLakin, Arlene Florida Voice for the Mentally RetardedLarkin, Patricia ARC of VolusiaLatourelle, Jolie Agency for Persons with DisabilitiesLedbetter, Michelle Agency for Persons with DisabilitiesLinder, Elise Miami VoicesLyons, Mary Florida Dental AssociationMacDonald, Bob Florida Dental AssociationManning, Douglas DOH - Public Health Dental ProgramMazzoccoli, Ouida AHCA - MedicaidMcghee, Katherine PARC (Pinellas County ARC)Meyer, Don Children’s Medical ServicesMohs, Lucy Agency for Persons with DisabilitiesOcanto, Romer Nova Southeastern College of Dental MedicineOrgaz, Dee FDHAPadilla, Oscar Volusia CHDPatterson, Bunny FDHAPerez, Leda Miami VoicesPollock, Dawn Florida Pediatric SocietyPurvis, Angela Sacred Heart Pediatric CenterRichards, Debbie Florida Developmental Disabilities CouncilSampson, Jean Alachua County DOHSantana, Victor-Jose Miami VoicesSawyer, Nancy Special OlympicsShehadeh, Eyad Nova Southeastern College of Dental Medicine 2
  3. 3. Seal, Charlene Florida Developmental Disabilities Council Sloyer, Phyllis Children’s Medical Services Stevenson, Richard FDA Tabak, John Nova Southeastern College of Dental Medicine Thomas, Don Tacachale Community Thompson, Kimberley Sunrise Community, Inc. Vitale, Debra FDHAWhy do patients need special care?Performing routine oral hygiene home care, accessing professional dental care, andgiving informed consent concerning health care treatment are significant issues amongthe special needs population. Some patients need routine oral health care, but havemedical conditions or limitations that require delivery of care beyond the routine. Thedental team, for example, may need to learn to transfer a patient with cerebral palsy fromthe wheelchair to the dental chair, to use some sign language to communicate with deafpatients, or to adapt oral hygiene devices so a patient can use them.Moreover, the lack of appropriate daily preventive care, including education about oralhygiene and disease control, creates a continuing health problem for this specialpopulation. Individuals with severe developmental, physical, and/or mental disabilitieswho cannot communicate their oral discomfort are at greater risk that their dental diseasemay go undetected for long periods of time. Thus, they may suffer needlessly from severedental pain. Additionally, severely disabled individuals, especially children, may beuncooperative or difficult to treat. Many dental health care professionals are poorlyeducated in treating individuals with disabilities. Consequently, many dental offices areunwilling to treat individuals with disabilities.In addition, many systemic diseases and certain medical treatments have oral healthimplications. Dental professionals may need to develop a treatment strategy for a patientwho has received an organ transplant, determine the best anesthetic alternative for apatient who has heart disease, or develop an oral health plan for a patient who mustundergo treatment for cancer.Some patients have medical and oral conditions that call for extraordinary care andrequire oral health professionals to have specialized knowledge. Surgical treatment oforal cancer or genetic craniofacial defects, such as cleft lip and palate, often requireextensive reconstruction that involves many health specialists. Further, disorders such asectodermal dysplasia and osteogenesis imperfecta directly affect tooth and facialdevelopment and demand specialized treatment.As evidenced above there are a wide variety of special needs patients and conditionsresulting in an assortment of oral and systemic healthcare problems and needs. 3
  4. 4. One of the initial objectives of the workgroup was to define children with special healthcare needs (CSHCN) so that the workgroup could assess the need throughout the State.However, the workgroup soon found this task overwhelming to the point of paralyzing itsprogress.Many public and private healthcare organizations, academic healthcare institutions, andgovernmental agencies use the terms disability, impairment or CSHCN to describechildren who have or are at an increased risk of having a variety of physical,developmental, behavioral or emotional conditions and who require special healthcareservices. The range of conditions that may cause a child to require special healthcareservices is vast. This variety in defining disability, impairment, and special needs andthus, the population creates two problems. First, it is difficult to determine an accuratedemographic assessment of a special needs population and consequently, the extent oftheir needs. Second, it creates a problem with inclusion and exclusion. Some definitionsare very broad - to the point that almost anyone could argue that they have a special need,and some are very narrow - to the point of excluding persons who obviously have specialneeds.In addition to a specific definition there are an assortment of agencies, institutions, andorganizations which concentrate on a specific special needs populations (such as inFlorida: the Florida Developmental Disabilities Council, the United Cerebral Palsy ofFlorida, the Autism Society of Florida, the National Alliance on Mental Illness (NAMI)Florida, the Brain Injury Association of Florida (BIAF) the Association of RetardedPersons (ARC) Florida, and so on). Each of these organizations has created their owncriteria for inclusion or exclusion in their programs. Consequently, there is no onedefinition of disability, impairment, and CSHCN and thus, no simple formula todetermine who needs special healthcare services.Examples of this confusion are shown in the following excerpts from variousorganizations’, states’, or agencies’ attempts at defining disability, impairment, and/orspecial needs.The Health Resources and Services Administration (HRSA) and the Maternal and ChildHealth Bureau (MCHB) has defined CSHCN as those “who have or are at increased riskfor a chronic physical, developmental, behavioral, or emotional condition and whorequire health and related services of a type or amount beyond that required by childrengenerally.”In contrast, the National Institute of Dental and Craniofacial Research (NIDCR) definewhat special care is rather than attempting to define the population. The NIDCR statesthat special needs are “an approach to oral health management tailored to the individualneeds of people with a variety of medical conditions or limitations that require more thanroutine delivery of oral care. Special care encompasses preventive, diagnostic, andtreatment services. These individuals usually require more than routine oral care to keeptheir mouth healthy due to their condition or treatment for their condition. People whorequire special care: 4
  5. 5. • May have genetic or systemic disorders that affect their oral health • May be undergoing medical treatments that cause oral problems • May have mental or physical disabilities that complicate oral hygiene or treatmentWhile some patients require more specialized care, most can be treated successfully ingeneral dental practices. Special care encompasses preventive, diagnostic, and treatmentservices.”The Americans with Disabilities Act (ADA) defines disability rather than special need. Itdefines a disability as “a mental or physical impairment that substantially limits one ormore major life activities such as walking, hearing, seeing, learning, or caring for one’sself. A variety of diseases, disorders, defects, and conditions can cause any number ofimpairments and render a person disabled or in need of special health care needs. Theexact needs of the individual will vary by the severity of the disability. Irrespective of thecause, individuals with disabilities often lack legal, political, social, physical, and mentalpower. Socially, society stigmatizes the disabled. Physically the disabled may not be ableto take care of their personal needs, and mentally and legally the disabled may not havethe capacity to make decisions on their own.” The American Academy of Pediatric Dentistry (AAPD) has defined CSHCN as thosewho “have a physical, developmental, mental, sensory, behavioral, cognitive, oremotional impairment or limiting condition that requires medical management, healthcare intervention, and/or use of specialized services or programs. The condition may bedevelopmental or acquired and may cause limitations in performing daily self-maintenance activities or substantial limitations in a major life activity. Health care forspecial needs patients is beyond that considered routine and requires specializedknowledge, increased awareness and attention, and accommodation.”Florida Children’s Medical Services (CMS), whose mandate is to provide care to childrenwith special needs, defines CSHCN as “those children under age 21 whose serious orchronic physical, developmental, behavioral or emotional conditions require extensivepreventive and maintenance care beyond that required by typically healthy children.”The Florida Developmental Disabilities Council’s white paper entitled Access to OralHealth Care for Floridas Citizens with Developmental Disabilities best summarizes thisdefinitional confusion. “According to Florida Statutes, ‘…developmental disabilitymeans a disorder or syndrome that is attributable to retardation, cerebral palsy, autism,spina bifida, or Prader-Willi syndrome and that constitutes a substantial handicap that canreasonably be expected to continue indefinitely.’ As a definition, the statute is somewhatinaccurate. More precisely, a disability is defined in terms of limited ability to function.Therefore, a disability is a mental or physical impairment that substantially limits one ormore major life activities such as walking, hearing, seeing, learning, or caring for oneself.Impairments may be caused by a variety of disorders such as mental retardation, cerebralpalsy, sensory disorders, or paralysis. A disorder is not a disability. A disorder can causean impairment that, depending on the degree of functional limitation, may or may not be 5
  6. 6. considered a disability. A ‘developmental disability’ is a mental or physical impairmentcaused by a disorder occurring during the years of development, birth to age 18. Forexample, if an 8-year-old child became a paraplegic as a result of trauma, the child wouldgenerally be considered to have a developmental disability. However, according toFlorida Statutes, such a child would not be considered to have a developmental disabilityunless the trauma also resulted in mental retardation.”Defining special needs is difficult due to the variety of possible conditions, thesubjectivity involved in the determination proces and the fact that there are no clearly-defined parameters. The Supreme Court may have summed it up best in how they definethe threshold of obscenity “I know it when I see it.”Therefore, the Special Needs Workgroup decided that a broad definition for CSHCN asrelated to oral health was the most appropriate definition. The Workgroup decided it wasbetter to be over inclusive than under inclusive. The Workgroup defines CSHCN inrelation to oral health as: “an individual with a physical, developmental, mental, sensory,behavioral, cognitive, or emotional impairment or limiting condition that requires morethan routine oral health care to keep their mouth healthy due to their condition ortreatment for their condition.Florida DemographicsAs stated above, accounting for an accurate number of the disabled, impaired or specialneeds persons in Florida (and anywhere in the United States for that matter) is nearimpossible. However, some trends and statistics are available. Disability rates increasewith age. In Florida, 8.7 percent of 5-15 year olds, 21.9 percent of 21-64 year olds, and39.5 percent of the 65 and older civilian non-institutionalized population are disabled.Specifically, an estimated 533,500 Florida residents have mental retardation, cerebralpalsy, autism, spina bifida, or Prader-Willi syndrome. Only 32,500 of Florida’sestimated 533,500 residents with mental retardation, cerebral palsy, autism, spina bifida,or Prader-Willi syndrome received services from Florida’s Department of Children andFamilies during 2000. Data regarding individuals receiving services from DCF is readilyobtainable; however, there is a paucity of information about the estimated 500,000 peoplewho are not receiving services. This lack of information results in a rather large “hiddenpopulation.” The vast majority of this population is dependent upon the community-based private health care system for primary and preventive medical and dental care.This data does not include the many frail elderly or persons, both children and adults withcommon compromising medical conditions such as diabetes or heart disease.Barriers to Oral HealthcarePotentially all children face barriers to accessing oral health care. However, not allchildren are at equal risk for poor oral health and lack of access to needed care. CSHCN(due to physical, mental, and emotional disabilities) are particularly vulnerable to poororal health. For CSHCN, every endeavor is more complex and demanding. 6
  7. 7. Restricted physical dexterity may limit or prevent self homecare, present problems withdiet and nutrition, and limit mobility causing transportation problems. Diminishedmental capacity may cause a lack of understanding about the importance of oral health,compliance, and proper homecare. Moreover, physical and mental disabilities contributeto limited numbers of available oral health care providers willing or able to treat suchpersons. Most general dentists have limited training regarding children let aloneCSHCN. Consequently, many general dentists may be unwilling or fearful of treatingCSHCN. Moreover, many CSHCN require general anesthesia in a hospital or otherspecial healthcare setting. In many cases, dental insurance does not cover anesthesia,further restricting access to dental care for CSHCN. Additionally, due to the complexityof CSHCN’s health, integration between the systems that deliver medical and dental careis necessary to provide optimal oral health. However, these two systems remainessentially separate.The following list summarizes some of the major issues and concerns regarding potentialbarriers to oral health care delivery and financing: • Children with special health care needs are almost twice as likely to have unmet oral health care needs as their peers without special health care needs across all income levels. • Provision of oral health care for some children with special health care needs requires specialized knowledge, increased awareness and attention, and accommodation. • There appears to be an adequate number of licensed dentists in Florida to meet the present level of demand for dental services; however, there are not enough practitioners willing or adequately trained to provide care to people with special needs. • Many oral health professionals lack adequate educational preparation and clinical experience to successfully manage care for some children with special health care needs. The results of a national survey of U.S. and Canadian dental schools in the late 1990s show that about half of the dental schools in the United States provided students with less than 5 hours of classroom instruction and less than 5 percent of clinical time devoted to providing care for children with special health care needs. At the 2005 American Dental Education Association (ADEA) Annual Session, ADEA passed a resolution to work with the American Dental Association’s Commission on Dental Accreditation to adopt or strengthen accreditation standards ensuring that dental education programs include both didactic instruction and clinical experiences involving the management and treatment of individuals with a variety of cognitive, medical, or physical disabilities, and that these experiences are appropriate for the type of educational program in which the student is enrolled. • Fewer than 1 in 10 general dentists regularly provide care for children with cerebral palsy or cognitive disabilities or those who are medically compromised. 7
  8. 8. About two-thirds of general dentists identify patient behavior as the foremost reason for their unwillingness to provide care for children with special health care needs. • Dental Insurance Plans are often inadequate for the needs of the developmentally disabled and too costly for the working disabled. • Insurance coverage for oral health care, even when available, does not ensure access to care. Inadequate reimbursement rates may make it financially difficult for dentists to provide care for children with special health care needs. • More than 20 percent of children with special health care needs have conditions that create financial problems for their families. Parents report multiple barriers to locating appropriate and affordable oral health care for their children with special health care needs. Complex oral health procedures (e.g., crowns, bridges) or those requiring general anesthesia are often not covered by insurance plans and must be paid for out-of-pocket by families. • Behavior management issues many times require sedation or behavior modification techniques. Successful treatment of developmentally disabled patients can involve immobilization, sedation and anesthesia techniques that many dentists have not learned and special equipment they do not have. Additionally access to facilities that provide anesthesiology or to anesthesiologists is difficult, expensive or just plain lacking. • The perception in the dental profession is that treating patients with special needs can be cost prohibitive. Medicaid reimbursement fees are inadequate. Moreover, the Americans with Disabilities Act makes it illegal to charge more than one’s usual fee to a special needs patient, even though more procedures are required for treatment. • Many disabilities last for a lifetime. However, Medicaid and many other health plans and programs for the disabled have age limitations. Thus, children who receive services may age out of the system when they become adults, leaving them with no access to care. • Informed consent and guardianship issues are a constant stumbling block in the practices of those who are willing and able to provide care. • Homes or facilities for the individual who is severely and profoundly disabled often do not maintain dental services on site. Thus, dental services must be found and provided outside of the facility in a private office environment. • Transporting some individuals with special needs may not be possible due to disability, location, or many other factors. Transportation services for individuals with special needs can be non-existent, inadequate, or when available costly. • While there are many organizations, programs and services that focus on special needs patients throughout the State, efforts are scattered and fragmented. There is a need for a centralized plan.National Oral Health Programs, Advocates and Opportunities for CSHCNListed below are some of the primary organizations and programs that provide servicesfor or affect individuals with special healthcare needs nationally. 8
  9. 9. Maternal and Child Health ServicesThe Maternal and Child Health Services Block Grant (Title V) requires that states budgetat least 30 percent of their federal allocation to services for children with special healthcare needs. Title V funds may be used to provide case-management services to familiesas a means to improve access to oral health care and to support collaboration betweenspecial health care needs programs and oral health programs. (See StartHead Start programs allocate a minimum of 10 percent of their enrollment to childrenwith disabilities. In addition, Head Start programs work with local agencies to helpfamilies enroll in public assistance programs or to obtain other sources of funding for oralhealth care. Head Start Program Performance Standards specify that programs shouldwork with dentists to ensure that children receive an oral examination, that a treatmentplan is developed, and that necessary treatment is completed for all children enrolled inthe program. (See children enrolled in Medicaid, including those with special health care needs, areentitled to comprehensive oral health services through the Early and Periodic Screening,Diagnostic and Treatment (EPSDT) Program. Ages for the provision of services vary bystate.Grottoes of North America’s Humanitarian FoundationThe Grottoes of North America’s Humanitarian Foundation partners with dentists tobring community-based oral health services to children with special health care needs.Parents select the dentist of their choice, and the program works directly with the dentaloffice to process the claim and issue payment. The Grottoes Web site providesinformation on the foundation’s Dental Care for Children with Special Needs Program.(See Care Dentistry AssociationThe Special Care Dentistry Association is the only national organization where oralhealth and other professionals meet, communicate, exchange ideas, and work together toimprove oral health for people with special needs. The Association To act as a centralfocus for diverse individuals and groups with a common interest in oral health for peoplewith special needs and direct its resources accordingly. (See Foundation of Dentistry for the HandicappedThe National Foundation of Dentistry for the Handicapped (NFDH), an affiliate of theAmerican Dental Association, works to improve the oral health of individuals withphysical, medical, and cognitive disabilities through voluntary programs, includinglinking individuals with dentists in their communities to receive free comprehensive oralhealth treatment; transporting mobile dental equipment in a van to facilities serving 9
  10. 10. individuals with developmental disabilities; and training nurses, teachers, case managers,residential staff, and parents of children with developmental disabilities to help improveoral hygiene and to follow up with routine oral health care. NFDH’s Web site provideslinks to information on the voluntary programs. (See Oral Health Programs, Advocates and Opportunities for CSHCNListed below are a few of the many organizations and programs that advocate or provideservices for individuals with special healthcare needs in the State of Florida.Florida Developmental Disabilities Council (FDDC)The FDDC engages in advocacy, capacity building, and systemic change activities thatcontribute to a coordinated, consumer and family-centered, consumer and familydirected, comprehensive system of community services and individualized supports. (See’s Medical Services Network (CMS)The Children’s Medical Services Network, a division of the Florida Department ofHealth, provides comprehensive health care to children with special health care needs.Services are provided in 22 area offices around the statewide as well as in the communityin hospitals, university medical centers and private provider settings. Medicaidreimbursement rates are used for all our patients regardless of their funding source.Medicaid patients account for 65% of our caseload, followed by Florida KidCare TXXIat 20%, and Safety Net at 15%.Dental services are provided through community providers. CMS Network CareCoordinators help our patients link with the available dental providers. ProviderRelations staff are responsible for dental provider recruitment. The CMS Networkutilizes Medicaid dental policy for all dental services including orthodontia. Familieswill soon be provided with basic oral health tips via the Bright Futures program FamilyTip Sheets for ages 0 –11 months, 1 – 4 years, 5 – 10 years, and 11 – 21 years. (See of Florida College of Dentistry Community Outreach ProgramsThe Tacachale Dental clinic in Gainesville provides care to adults with DD who reside inthe community, but are unable to obtain care. The College of Dentistry has a contractwith APD to provide dental care to DD individuals who reside at Tacachale on a space-available basis. The Naples Children & Education Foundation recently gifted $5.5million to the University of Florida College of Dentistry that will fund the constructionand operation of a state-of-the-art pediatric dental facility in Collier County. (See and Southeastern College of Dental MedicineNova’s Institute for Special Needs Dentistry provides primary and tertiary oral healthcare services to the young mentally retarded/developmentally disabled MR/DDpopulation, the frail elderly, and patients with acquired disabilities. The Institute also 10
  11. 11. assists dentists in treating patients with developmental and acquired disabilities, as wellas those long-standing patients who have become too frail or ill to continue their dentalcare in the community. Moreover, Nova is affiliated with the Pediatric Dental program atMiami Childrens Hospital Toothtown where pediatric dental services are designed tomeet the unique needs of healthy infants, children and adolescents and to address thespecial needs of patients whose medical and dental problems are more complex. (See CommunitySunrise Community is a not-for-profit organization dedicated to providing the supportand assistance necessary so that people with developmental disabilities can take theirrightful place in the community. One of their programs is to provide continuingeducation programs related to the oral healthcare needs of the developmentally disabled.(See Dental Association (FDA) and Florida Dental Hygiene Association (FDHA)The FDA ( and the FDHA( seek to improve dental outcomes for Floridians on many levels,one of which is special needs. Programs that the FDA and FDHA support or sponsor are:Special Olympics Special Smiles; the FDAs Public Outreach Campaign: designed toeducate the public, including people with special needs and their caregivers; Project:Dentists Care ( whose mainobjective is to build networks of volunteer dentists throughout Florida to increase access-to-care for disadvantaged persons in Florida, such as Donated Dental Services; and theCouncil on Dental Care and Health (CDCH) SOHIP task group that will touch on areasof special needs populations.Special Olympics, Healthy Athletes, Special SmilesSpecial Olympics, Healthy Athletes, Special Smiles works to increase public awarenessof the oral health issues facing children, adolescents, and adults with special health careneeds, increase their access to care, and train professionals to care for them. The primaryobjective of Special Smiles is to increase the number of dental professionals who willserve people with intellectual disabilities in their practices and clinics through their Trainthe Trainer workshops. The Special Smiles program, while also training volunteer dentalproviders in the care of special needs patients, has the added benefit of providing SpecialOlympics athletes with oral health screening, education, and referrals to dentists in theircommunity for routine oral health care and treatment. The Special Olympics’ Web siteincludes links to the program’s publications and events. (See for national information for Florida-specific information)ARC of FloridaWorking with local, state, and national partners, the ARC of Florida advocates for localchapters, public policies, and high quality supports for people with developmental andother disabilities to be fully included in all aspects of their community. The Pinellas 11
  12. 12. ARC (PARC) is currently developing an onsite dental program with help from the FDA.(See Schedule: Meetings and ForumsThe SOHIP general assembly decided to form a special needs workgroup in September of2006. SOHIP appointed Dr. Douglas Manning chair of the workgroup. Dr. Manningidentified potential individual and organizational participants and sent out invitations tojoin the workgroup on October 17, 2006. Upon formation, the Workgroup decided tohold monthly meetings via one hour conference calls and half day face to face meetingsin conjunction with scheduled SOHIP general assembly meetings in order to assess theexisting infrastructure and needs in Florida, propose and recommend strategies, anddevelop a Special Needs Action Plan.Additionally, the Workgroup discussed participation at various statewide forums held foror focused upon the healthcare of special needs persons. The Workgroup exploredparticipation at the Family Café Annual Conference(, the ARC of FloridaConvention (, and One Goal Summer Conference( Ultimately the Workgroup decided toparticipate in the Family Café and ARC of Florida conventions due to the fact that theaudience would be made up of consumers and mostly non-dental healthcare providers.These forums provided the Workgroup the opportunity to educate stakeholders –individuals with Special Health Care Needs, their parents and caregivers, and non-dentalhealth care providers - and enlist their input and participation in the development of theSpecial Needs Action Plan. At both forums, the Workgroup staffed an exhibition boothwhere the Workgroup provided educational brochures on the oral health care of CSHCN,provided information on SOHIP and the Special Needs Workgroup, and distributed asurvey (see addendum #1) that assessed individual experiences concerning access to oralhealth care services. The results of the survey were used to develop strategies for theAction Plan. The Workgroup also sponsored speakers - Dr Timothy Garvey at theFamily Café and Judith Corbin at ARC of Florida - to present information on oral healthcare issues for individuals with special health care needs . (See addendum #2 and #3 forspeaker presentations).The Workforce’s schedule and activities are listed below (See addendums #4-10 -meeting agendas and post-meeting reports):October 17, 2006 Invitations to Participate on Special Needs WorkgroupNovember 13, 2006 DOH Application to ASTDD for CSHCN GrantDecember, 2006 ASTDD Notification of Grant ReceiptJanuary 17, 2007 First Special Needs Workgroup Conference Call (Mission, Goals, and Schedule)February 21, 2007 Second Special Needs Workgroup Conference Call (Strategy Development) 12
  13. 13. March 22-23, 2007 First Special Needs Workgroup Face to Face Working Meeting and State Oral Health Improvement Plan (SOHIP) General Session Meeting (Discussion of Proposed Strategies)May 16, 2007 Third Special Needs Workgroup Conference Call (Draft Action Plan)June 8-10, 2007 Family Café Conference (Booth, Survey, and Presentation)July 9-10, 2007 Association of Retarded Persons (ARC) of Florida Convention (Booth, Survey, and Presentations)August 30-31, 2007 Second ½ day Special Needs Workgroup Face to Face Working Meeting and SOHIP General Session Meeting (Draft Action Plan)October 3, 2007 Fourth Special Needs Workgroup Conference Call (Draft Action Plan)October 24, 2007 Fifth Special Needs Workgroup Conference Call (Draft Action Plan)November, 26, 2007 Final Special Needs Action Plan Submitted to SOHIPSpecial Needs Workgroup Strategy ReportThe Special Needs Workgroup was charged with identifying inequities in the quality andthe delivery of oral health care for Special Needs populations in Florida and developingstrategies to address these inequities. The Workgroup, through a series of e-mailcorrespondence; conference calls; and face to face meetings, determined that thefollowing categories are the most relevant issues that affect the disparities in oral healthstatus of special needs populations in the state of Florida: 1) empower individuals withspecial healthcare needs (SHCN); 2) educate and empower parents/caregivers; 3) trainthe workforce; 4) advocate for policy and legal solutions; 5) improve funding for specialneeds programs; 6) develop and/or expand community-based resources; and 7) improveaccess to clinical care. The attached strategy report entitled “Potential Strategies forConsideration” lists all or the initial strategies the workgroup proposed and considered increating an Action Plan. (See addendum #11 – strategy report)Special Needs Workgroup Action PlanUpon completion of the strategy report, the Workgroup, through email correspondence;conference calls; and a face to face meeting, reviewed each proposed strategy for merit,impact, and feasibility. Strategies that scored high in merit, impact, and feasibility wereincorporated into the Action Plan. The Workgroup prioritized each strategy by category(according to categories #1-7 listed above), identified, potential stakeholders, anddeveloped action steps with possible timelines. The culmination of this effort is theSpecial Needs Action Plan (See addendum #12).BudgetThe following is an accounting of the workgroup’s expenses from January 2007 toDecember 2007. Total expenses were $2973. Revenues included $5000 from theASTDD grant and $1513 from the Florida Department of Health. 13
  14. 14. Administration $727Booth at Family Cafe June 8-10 (shared with Pinellas ARC) $300Copy Services for Survey $100Douglas Manning Travel to Family Café June 8-10 $300Dr. Garveys Travel to Family Café June 8-10 $300Booth at ARC of Florida Conference July 9-10 $500Douglas Manning Travel for ARC of Florida July 9-10 $250Judith Corbin Travel Expenses ARC of Florida July 9-10 $500 Total Expenditures $2973 ($1460 paid out of ASTDD grant, remaining $1513 paid by Florida DOH) Grant Revenue Remaining $3540 (to be used on implementing a Special Needs strategy or project in 2008)Future of the WorkgroupSince the completion of the Action Plan the Workgroup set a goal of supporting andimplanting 3-4 of the most pressing strategies in the Action Plan for 2008. This processwill occur during the Workgroup’s next scheduled meeting at the end of January 2008.The Workgroup will continue to meet via monthly or bimonthly conference callsthroughout the year and face to face in association with the SOHIP general assemblymeetings 2-3 times a year. 14