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BARRIERS TO DENTALACCESS FOR SPECIALNEEDS PATIENTS
DentaQuest Partnership Continuing Education Webinar
July 16, 2020
DOI: 10.35565/DQP.2020.3015
2
Learning Objectives
By the end of this webinar, participants will be able to:
1. Apply neurodevelopmental theory to their understanding of familiar and unfamiliar
developmental disability diagnoses.
2. Define diagnostic overshadowing and understand the role that dentistry plays in reducing it
in the IDD population.
3. Describe the common unusual traits of people who have autism.
4. Describe common aspects of a dental appointment that may necessitate alterations in
providing dental care, and how these alterations may be implemented.
5. Alert the dental profession as to the barriers facing an individual with disabilities and the
comorbidities that can (and most likely) will affect their treatment.
3
Housekeeping
• All lines will remain muted to avoid background noise.
• A copy of the slides and a link to the recording will be shared after the webinar
concludes.
• In order to receive CE credit you must fill out the webinar evaluation, which
will be shared at the end of the presentation. The evaluation must be
completed by EOD Friday, July 24 to receive CE credit. CE certificates will be
distributed a few days after the webinar takes place.
The DentaQuest Partnership is an ADA CERP Recognized Provider. This presentation
has been planned and implemented in accordance with the standards of the ADA CERP.
*Full disclosures available upon request
4
Q&A Logistics
After the presentations we hope to have some
time for Q&A
We will be monitoring the chat box through the
entire presentation and we will do our best to
answer all questions.
• Type your question in the chat box
and make sure you send it to all
panelists.
5
Presenters
6
Interdisciplinary patient care, teaching and research program
Serving exclusively patients with IDD, ages 13 and older
https://www.youtube.com/watch?v=ubmBGJ99Ne0
7
Core Services
Medical
Dental
Psychiatric
Behavioral
Therapeutic
Crisis Intervention
AEGD Dental Residency
8
Where Our Patients Come From
4 Hours
9
DEVELOPMENTAL DISABILITIES
INTELLECTUAL DISABILITYAUTISM
CEREBRAL
PALSY
DOWN
SYNDROM
E
F
X
S
F
A
S
10
Intellectual Disability
Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.
• Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
• Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
• Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
Standardized tests can also determine limitations in adaptive behavior, which comprises three skill types:
11
1.5%
Profound
3.5% Severe
10% Moderate
85% Mild ID
-5 σ
-4 σ
-3 σ
-2 σ
IN T E LLE C T U A L DIS A B IL IT Y
12
General Population Mix
Neurotypical
Mild ID
Mod ID
Sev/Pro ID
ID Population Mix
Mild Mod Sev/Prof
13
14
17%29% 36%
25%
29%34%26%
34%
49%52%
55%
64%
0
0.2
0.4
0.6
0.8
1
1.2
1.4
1.6
1.8
2
Mild Mod Sev/Pro
Medical and Behavioral Complexity Across the ID Spectrum
(Lee Specialty Clinic Data)
Seizure Autism Neuromotor Psych
15
0
1.8
3.6
5.4
7.2
9
10.8
12.6
14.4
3.6 3.3 3 2.7 2.4 2.1
Cost Prediction Line: Mild ID Group in relation to Mod-Pro ID Group
Cost of Healthcare for the Mild ID Population as a Multiple of the Average Cost of the Non-ID
Population
Cost of
Healthcare
for M
odera
teto
Pro
found I
D
Popu
lation a
s a
Multip
le o
f th
e A
vera
ge C
ost
of
the N
on
-
ID P
opu
lation
16
IDD COST DRIVERS
Without IDD
• 36% Inpatient ($36)
• 33% Outpatient ($33)
• 23% Pharmacy ($23)
• 8% Other ($8)
IDD
• 36% Pharmacy ($130)- ($227) (5.7x - 9.7x on pharmacy)
• 29% Outpatient ($105)- ($183) (3.2x - 5.4x on outpatient care)
• 28% Inpatient ($101)– ($176) (2.8x - 4.8x on inpatient care)
• 7% Other ($25) ($44) 8 25 4436
101
176
33
105
185
23
130
227
0
100
200
300
400
500
600
700
Non - IDD Stat - IDD Clinic - IDD
IDD Cost Drivers
Other Inpatient Outpatinet Pharmacy
17
PRESCRIPTION PATTERNS
25% more likely to get a prescription
300% more likely to continue a prescription
46% of psychotropic drugs don’t have a corresponding psychiatric diagnosis
13% of anti-seizure drugs don’t have a corresponding seizure diagnosis
18
Our PatientsThe Dunning-Kruger
Effect
19
CLINICAL DYSFUNCTION
Behavior
Complaint
Medicate
Behaviors
Behaviors
Decrease
Problem
Worsens
Behaviors
Increase
Diagnostic Overshadowing - Blaming a new medical or behavioral problem entirely on an existing disability, for example:
• New behaviors are just due to autism
• Decline in mental function is just due to Down syndrome
• Decline in physical function is just due to Cerebral Palsy
20
FUNCTIONAL CLINICAL RESPONSE
Behavior
Complaint
Identify True
Cause
Treat True
Cause
Behaviors
Decrease
Permanent
Solution
21
FUNCTIONAL CLINICAL RESPONSE
Behavior
Complaint
Identify True
Cause
Treat True
Cause
Behaviors
Decrease
Permanent
Solution
GERD
Dementia
Diabetes
DKA
Hypoglycemia
Candidamycos
is
Esophageal Cancer
Blood Pressure
Crisis
Swallowing
Disorders
Medication
Reactions
Thyroid Disease
Autoimmune
Disease
22
FUNCTIONAL CLINICAL RESPONSE
NO Complaint
Identify Early
Risk
Proper
Referral
Preventive
Action
Cost ⬇️
QoL ⬆️
Dental Care for Persons with Autism
Timothy Garvey, DMD
Department of Pediatric Dentistry
University of Florida College of Dentistry
July 16, 20206-26
Accreditation Standard
2-24
Graduates must be competent in
assessing the treatment needs of
patients with special needs.
Disabilities (a partial
list) ADHD Developmental Delay AIDS Diabetes
Allergies Down Syndrome
Alzheimer’s Seizure Disorder (Epilepsy)
Amputee Hearing Impairment (Deaf)
Arthritis Intellectually Disabled
Asperger Syndrome Mental Illness
Autism Mobility Impairment
Bipolar Disorder Multiple Sclerosis
Birth Defects Paralysis
Brain Injuries Pulmonary Disease
Cancer Speech Impairment
Cerebral palsy Spina Bifida
Chronic Illnesses Stroke/CVA
Dementia Visual Impairment
Intellectual Disability
IQ 55-69 Mild: Educable (able to speak and communicate)
IQ 40-54 Moderate: Trainable…Partially Dependent (basic language skills, some
communication)
IQ 25-39 Severe: Non-trainable…Dependent (non-verbal, communicates with
grunts, gestures)
IQ <25 Profound: Non-trainable…Totally Dependent (non-verbal)
Classification of Intellectual Disability:
• “Mental Retardation” is being replaced by “Intellectual Disability” or “Cognitive Disability”
Terminology
•
Id
io
t
•
Mor
on•
Imbe
cile•
Crip
ple
• Mentally
Retarded •
Handicap
ped
• Physical
Disability
Terminology is
evolving:
Terms with Dignity
• Intellectual
Disability
Avoid offensive labels
person who has a disability
person who has autismcrippl
ehandicapp
ed
invali
d
victim of, suffers from autism
Deaf-and-
dumb
hearing impaired
non-verbal
afflicte
d
uses a
wheelchairwheelchair-
bound
deaf
mute
deforme
d
Appropriate Terminology
Inclusion
Americans with Disabilities Act of 1990
Mainstreaming in schools
Special Olympics
Deinstitutionalization
Funding for services
Americans with Disabilities Act
of 1990
• dental office is a place of public
accommodation
• must remove physical barriers
• must provide auxiliary aids and
services
• no surcharge permitted
management
Autism Spectrum Disorder
• poor social skills
• lack of interpersonal skills
• abnormal speech
• repetitive activities
• associated with
intellectual disability
(but not always!)
mental-developmental
Autism• Incidence:1/150, 1/68 (may depend on
definitions)
• 4:1 male:female
• Criteria
– Aloof social interaction
– Delayed language
– Stereotypical behavior
(See Temple Grandin for
additional information)
Autism - Causes
• 90% - multifactorial, no identifiable causative disorder
• 5% - syndromic type (e.g. Fragile X, Rett Syndrome,
Down Syndrome)
• 5% - genomic type – (e.g. dup. 15q11.2 or del.
22q13.3)
Oral issues in people with ASD (Autism
Spectrum Disorder)
Oral conditions Cause
Dry mouth (xerostomia) anticholinergic, other medications decreasing
salivary production
Hypersensitive teeth Bruxism and erosion
Decay, periodontal disease Poor oral hygiene, diet
Excessive drooling Dysphagia (swallowing disorder), low muscle
tone, medications
Tongue thrusting Low muscle tone
Perioral trauma Seizures, self-injurious behavior (SIB)
Dietary issues Pica (eating non-food items)
Celiac disease
Oral issues in people with ASD (Autism Spectrum Disorder)
• Impaired motor functioning
• Impaired processing of sensory input
• Atypical response to painful stimuli
• Atypical response to other stimuli
• Inability to comply with “routine” treatment plan
recommendations (ie – oral hygiene procedures, use of
mouthrinses, use of nightguards, ability to provide
subjective information to clinician)
Autism – Dental
treatment suggestionsWaiting is bad – schedule 1st case
Pre-appointment desensitization
Avoid unnecessary audible or visual distractions; avoid unnecessary change
Light touch can be distressing
Inform patient about procedure
Do not force appointment – things often get better with time and patience
Give patient time to “process” input
Ask caregivers about favorite music, video, toy - possible distraction from aversive stimuli
Behavior Management
• progressive desensitization
• voice control
• protective immobilization
• nitrous oxide
• oral sedation
• IM sedation
• IV sedation
• general anesthesia
least
invasiv
e
most
invasive
Providing Care
Goal: to provide treatment safely
Use least restrictive method
Use least restrictive behavior management(patient treated with no accommodations)
• Stabilization….protective Immobilization
• Nitrous Oxide
• Sedation
• General Anesthesia
Behavior ManagementCerebral Palsy
Pedi-Wrap
Papoose Board
Physician Consult
Providing Care
In-Office Sedation
Daily Oral Hygiene
• Patient’s level of understanding
• Patient’s level of cooperation/tolerance
• Caregivers – knowledge, ability
• Adaptive toothbrushes
• adaptive handles
• automatic brushes
• “curved” heads
• suction brushes (aspiration risk)
People who have disabilities often have very poor oral hygiene.
Lack of home care
Lack of dental providers
Traumatic occlusion
Need for Care
Poor Oral Hygiene Oral Diseases
Adaptive Brushes
• Collis Curve
(www.colliscurve.com)
• Triple brush
(Patterson)
Vacuum Brush
• Plak-Vac
• Unconscious/aspiration risk patient
• Trademark Medical Corporation
• www.trademarkmedical.com
• 1-800-325-9044
Cerebral Palsy
Oral Conditions
Bruxism
• Trauma
Cerebral Palsy
Oral Conditions
• Use mouth prop
• Introduce stimuli slowly
• Consider using rubber dam
• Short appointments, be efficient
Dental AccommodationCerebral Palsy
Floss on clamp
Precautions
Dental Acommodation
• Wheelchair transfer if possible
• Stabilize the patient’s head
• Keep limbs in natural position
• Support trunk and limbs
• Aspiration risk?
Cerebral Palsy
Physician Consult
• transferring a patient from their wheelchair to the dental chair
• using basic sign language to communicate with deaf patients
• consulting with a patient’s physician
• providing behavior management for a non-compliant patient
• making modifications to routine treatment procedures – treatment plans, selection
of restorative materials and techniques
• adaptive toothbrush for a patient with poor dexterity or tactile defensivity
Examples:
Special Patient CarePotential adaptations for providing dental care
Never treat a stranger!
Know your patients’ health conditions.
Take all necessary medical precautions –
but do not be afraid to try.
www.viscardicenter.org/paoh
A global public-private partnership dedicated to improving access to quality oral health care around the
world and for the more than 57 million people with disabilities in
the United States
Our mission is to act as a collective catalyst for change that will not only improve access to competent oral healthcare, but also improve the overall health of the disability community
Sam
LIFESPAN
❖Childo Parent Oversight
❖Adolescento Beginning to feel independento Transferring from pediatrics to adult care
❖Adulto I want to be included in the shared decision making
UNDERESTIMATED
Respect Presumes Equity
❖ I am a person with a disability NOT a disabled person.
❖ Do not try to fix me because I am not broken. Support me. I can make my contribution to the community in my way.
❖ Talk with me...NOT about me.
❖ Be prepared for me...know my history, my medications and why I may have an increased risk of dental carries.
Disability Rights 101: Nothing About Us
Without Us
❖ Disability is a natural part of the human experience. The lives of people with disabilities are inherently meaningful and valuable.
❖ Disabilities of all kinds are spread unevenly across all populations; no one is completely disabled in all areas, nor is anyone completely abled in all areas. Physical, programmatic and communication access to care are civil rights. (It's the law!)
❖ Disability is not simply a characteristic of an individual, but a failure to accommodate the needs of individuals.
❖ Inclusion requires proactive thought and action. Inclusion means that all parts of the social and physical infrastructure are accessible. This includes recognizing that illness often presents in unusual ways. It requires active work to identify signs and symptoms of illness.
❖ People with disabilities are usually much happier than they are judged to be by others.❖ Assumptions about another person's quality of life should never be used to justify offering or denying
treatment.❖ Parents and professionals do not speak for people with disabilities, but can be allies and supporters.
ATTITUDE
It’s ALL about……
Consider how overwhelming a
medical/dental visit is to an
individual with special needs AND
find a way to improve that
experience!“Clinical dental treatment is the most exacting and demanding medical procedure that persons with ID/DD undergo on a regular basis
throughout their lifespan.” (Lyons 2004)
The Role of the Health Professionals in
Addressing Bias
Health professionals have a lot of influence over the lives of people with disabilities.
YOU control access to medical/dental care.
In many situations YOU even control the opportunity to make decisions and form and maintain
relationships.
YOU influence research questions, funding and methods.
YOUR research drives public policy.
With that power comes the responsibility to become self-aware about YOUR own ability bias.
YOUR words, actions and leadership matter!
By addressing YOUR own bias, YOU have a tremendous opportunity to improve the quality of
life for people with disabilities.
Stigma
Described by Goffman as “spoiled identify” stigma
impacts on health care by having providers not see
this population as benefiting from preventive
protocols, receiving adequate pain medication,
surveillance for “risk factors” associated by many
health care professionals as a low reward population,
limited respect afforded to those clinicians with an
allegiance to this population.
Communication
• Difficult for clinicians to understand patients with
limited expressive communication, limited time by
physicians and dentists increases the frustration
and they do not take thorough histories leading to
premature, ill thought thru treatment plans.
• Difficult for clinicians to know who is “in charge”
(who has the legal authority to represent the
patient).
Social Role Valorization
• Coined by Wolf Wolfensberger; described the
low view that society holds for people with
intellectual and developmental disabilities.
• Describes how society views them as burdens,
menaces, uneducable, non-contributory, pitiful,
holy innocents…values that provide little
incentive to support their development including
their health care status.
“Do the kindest thing and do it first.”
Sir William Osler
66
“ONE OF THE ESSENTIAL QUALITIES OF THE CLINICIAN IS INTEREST IN HUMANITY, FOR THE SECRET OF THE CARE OF THE PATIENT IS CARING FOR THE PATIENT.”
D R . F R A N C I S W . P E A B O D Y
Francis Peabody, 1927
Poverty
Health Disparities
Barriers to Good Health
Cultural Beliefs
Unconscious Bias
Stigmatization
Attitudes/Discrimination
Dependence on Others
Lack of Transportation
Poor Enforcement of Laws/Policies
Poverty
Limited Self-Advocacy
Handicap Access
Insufficient Provider Training
Limited Prevention Education
Lack of Awareness
Diagnostic Overshadowing
Comorbidity
Refers to the existence of additional
diseases after diagnosis of the primary
disabling condition.Secondary Condition
Any condition to which a person is more susceptible by virtue of having a
primary disabling condition.
Co-Morbid Conditions Commonly Associated with Intellectual Disability:
“adding insult to injury…”
People with Disabilities
Experience:
• Greater unmet health care needs than people without disabilities
• Unequal access to health care services
• Have less education
• Worse socioeconomic outcomes
• Higher rates of poverty
• Lower employment rates
People with Disabilities Have:
• Higher risk of co-morbid conditions
• Greater vulnerability to age related conditions
• Increased rates of health risk behaviors, ie: obesity,
smoking, physical inactivity
• Greater risk of being exposed to violence
• Higher risk of unintentional injury (burns, falls, car
crashes, bicycles
• Higher risk of premature death
Unmet Dental Care Needs Among Children With Special
Health Care Needs:
Implications for the Medical Home
Charlotte Lewis, Andrea S. Robertson and Suzanne Phelps
Pediatrics 2005;116;e426-e431
DOI: 10.1542/peds.2005-0390
This information is current as of September 19, 2005
The online version of this article, along with updated information
and services is located on the World Wide Web at:
http://www.pediatrics.org/cgi/content/full/116/3/e426
Interviewed 38,866 Families
CSHCNResults:
• Dental care is the most prevalent unmet health care need for
CSHCN.
• Over 78% of CSHCN needed dental care in the past 12 months.
• Second only to prescription medications in frequency of need.
• Poorer children, uninsured children, children with lapses in
insurance, and children with greater disabilities had greater odds
of unmet dental needs.
• Children with a personal doctor or nurse were significantly less
likely to have unmet dental needs.
Terrence is 25 years old and autistic. His oral health journey began relatively smoothly. He was treated by the same pediatric dentist as his siblings, so his dentist was familiar to him. Just before Terrence graduated from high school his mother Tina learned that the family dentist was retiring. His mother was extremely worried about where she would take him in the future for his oral healthcare needs but took the dentist’s referral.When Tina took Terrence to the new dentist and tried to make the staff aware of this needs, the staff wouldn’t listen. As a result, the visit was a disaster.It was more than two years before Terrence’s mom tried to find another provider. Thankfully, after a long search, she was able to find the right one. Now Terrence looks forward to his dental appointments and smiles ALL THE TIME!.Tina hopes that the profession will eventually embrace the special needs population and feels it begins with a change in attitude!
QUESTIONS?
78
Webinar Evaluation
https://www.dentaquestpartnership.org/node/208145
*Must complete by EOD Friday, July 24 in order to receive CE credit
Upcoming Webinar:
• Patient Safety Webinar - TBD
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