- 1. Addressing the Oral Health of Floridas Special Needs
PopulationThe Surgeon Generals 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 Floridas 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
Floridas 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
individuals 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 persons health andquality of life.SOHIP, ASTDD grant,
Formation of Special Needs Workgroup and ParticipantsIn 2004, in
response to the Surgeon Generals Report, his Call to Action and the
HealthyPeople 2010 report, the Department of Healths (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 Floridas
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.NAMEORGANIZATION1
2. Barnes, AmyHead StartBrantley, Shelly DCFBucciarelli,
RickFlorida Academy of PediatricsBurtner, PaulUFCDCarr,
NatalieFlorida Academy of Pediatric DentistryCerasoli, Mary AHCA -
MedicaidChilders, DavidAmerican 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, TimothyUFCDHakes, AnitaIsley,
Amber Florida Academy of Family PhysiciansKhatri, NiloferFlorida
Academy of Pediatric DentistryLakin, ArleneFlorida Voice for the
Mentally RetardedLarkin, Patricia ARC of VolusiaLatourelle,
JolieAgency for Persons with DisabilitiesLedbetter, MichelleAgency
for Persons with DisabilitiesLinder, EliseMiami VoicesLyons,
MaryFlorida Dental AssociationMacDonald, Bob Florida Dental
AssociationManning, Douglas DOH - Public Health Dental
ProgramMazzoccoli, OuidaAHCA - MedicaidMcghee, KatherinePARC
(Pinellas County ARC)Meyer, Don Childrens Medical ServicesMohs,
Lucy Agency for Persons with DisabilitiesOcanto, RomerNova
Southeastern College of Dental MedicineOrgaz, Dee FDHAPadilla,
Oscar Volusia CHDPatterson, Bunny FDHAPerez, LedaMiami
VoicesPollock, DawnFlorida Pediatric SocietyPurvis, Angela Sacred
Heart Pediatric CenterRichards, Debbie Florida Developmental
Disabilities CouncilSampson, JeanAlachua County DOHSantana,
Victor-Jose Miami VoicesSawyer, NancySpecial OlympicsShehadeh, Eyad
Nova Southeastern College of Dental Medicine 2 3. Seal, Charlene
Florida Developmental Disabilities CouncilSloyer, PhyllisChildrens
Medical ServicesStevenson, Richard FDATabak, JohnNova Southeastern
College of Dental MedicineThomas, DonTacachale CommunityThompson,
KimberleySunrise Community, Inc.Vitale, DebraFDHAWhy 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. 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. 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 onesself. 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 Childrens 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
Councils 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 be5 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 Floridasestimated 533,500 residents with mental
retardation, cerebral palsy, autism, spina bifida,or Prader-Willi
syndrome received services from Floridas 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. 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 CSHCNs
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
Associations 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. 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 ones 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. 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.
(Seehttps://performance.hrsa.gov/mchb/mchreports/link/state_links.asp.)Head
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
http://www.acf.hhs.gov/programs/hsb/performance/.)MedicaidAll
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 Americas Humanitarian FoundationThe
Grottoes of North Americas 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 foundations Dental Care for Children
with Special Needs Program.(See
http://www.scgrotto.com/Text%20documents/Dental%20Care%20Program.htm.)Special
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.
(Seehttp://www.specialcaredentistry.org/)National 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. 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. NFDHs Web
site provideslinks to information on the voluntary programs. (See
http://www.nfdh.org.)State 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.
(Seehttp://www.fddc.org/home/index.asp).Childrens Medical Services
Network (CMS)The Childrens 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.
(Seehttp://www.cms-kids.com/)University 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 http://www.dental.ufl.edu/ and
http://www.dcf.state.fl.us/institutions/tacachale/).Nova
Southeastern College of Dental MedicineNovas 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. 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.
(Seehttp://dental.nova.edu/).Sunrise 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
http://www.sunrisegroup.org/).Florida Dental Association (FDA) and
Florida Dental Hygiene Association (FDHA)The FDA
(http://www.floridadental.org/index.html) and the
FDHA(http://www.fdha.org/) 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
(http://www.floridadental.org/public/outreach/project.html): 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
programs publications and events.
(Seehttp://www.specialolympics.org for national information
andwww.specialolymplicsfloirda.org 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. ARC (PARC) is currently developing
an onsite dental program with help from the FDA.(See
http://www.arcflorida.org/news.php).Workgroup 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
Caf Annual
Conference(http://www.familycafe.net/index.php?option=content&task=category§ionid=10&id=89&Itemid=35),
the ARC of FloridaConvention (http://www.arcflorida.org/news.php),
and One Goal Summer
Conference(http://www.onegoalsummerconference.org/) Ultimately the
Workgroup decided toparticipate in the Family Caf 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 Caf 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 Workforces schedule and
activities are listed below (See addendums #4-10 -meeting agendas
and post-meeting reports):October 17, 2006Invitations to
Participate on Special Needs WorkgroupNovember 13, 2006 DOH
Application to ASTDD for CSHCN GrantDecember, 2006ASTDD
Notification of Grant ReceiptJanuary 17, 2007First Special Needs
Workgroup Conference Call (Mission, Goals,and Schedule)February 21,
2007 Second Special Needs Workgroup Conference Call
(StrategyDevelopment)12 13. March 22-23, 2007First 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, 2007Family Caf
Conference (Booth, Survey, and Presentation)July 9-10,
2007Association of Retarded Persons (ARC) of Florida Convention
(Booth, Survey, and Presentations)August 30-31, 2007 Second day
Special Needs Workgroup Face to Face Working Meeting and SOHIP
General Session Meeting (Draft Action Plan)October 3, 2007Fourth
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
workgroups 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.
Administration$727Booth at Family Cafe June 8-10 (shared with
Pinellas ARC) $300Copy Services for Survey$100Douglas Manning
Travel to Family Caf June 8-10 $300Dr. Garveys Travel to Family Caf
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 Workgroups 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
