BARRIERS TO DENTALACCESS FOR SPECIALNEEDS PATIENTS

DentaQuest Partnership Continuing Education Webinar

July 16, 2020

DOI: 10.35565/DQP.2020.3015

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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.

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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

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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.

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Presenters

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Interdisciplinary patient care, teaching and research program

Serving exclusively patients with IDD, ages 13 and older

https://www.youtube.com/watch?v=ubmBGJ99Ne0

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Core Services

Medical

Dental

Psychiatric

Behavioral

Therapeutic

Crisis Intervention

AEGD Dental Residency

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Where Our Patients Come From

4 Hours

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DEVELOPMENTAL DISABILITIES

INTELLECTUAL DISABILITYAUTISM

CEREBRAL

PALSY

DOWN

SYNDROM

E

F

X

S

F

A

S

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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:

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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

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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

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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

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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

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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

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Our PatientsThe Dunning-Kruger

Effect

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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

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FUNCTIONAL CLINICAL RESPONSE

Behavior

Complaint

Identify True

Cause

Treat True

Cause

Behaviors

Decrease

Permanent

Solution

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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

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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

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“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?

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