Download Houston Abilities Expo: Autism Is Medical Power Point

Jeanna Reed
Jill Rubolino
Nikki Tomczak
Nikki Tomczak is co-organizer of the Autism Is Medical Houston support group,
webmaster and social media director for autismismedical.com, and mother to
three children ages 19,14 and 13. Previously a patient coordinator, Nikki now
spends the majority of her time researching and coordinating appropriate medical
care for her youngest daughter Olivia. Olivia’s complex diagnosis consists of
Mitochondrial Disease, bowel disease, autonomic dysfunction, sleep apnea, and
developmental encephalopathy which are a result of a severe adverse reaction to
her vaccine schedule.
Jill Rubolino is a Registered Nurse with over twenty years of experience in the
acute care setting. She began her journey in the autism community when her son
became ill and was ultimately diagnosed on the autism spectrum. Jill is cofounder and co-director of “AIM” (Autism Is Medical) a 501c3 nonprofit
organization where she works to support parents and educate the medical
community on the need for appropriate health care for this patient population.
Jeanna Reed has been a Licensed Practical Nurse for the past sixteen years. Her
continued advocacy in the area of autism became crucial when her oldest child
suffered severe medical decline following multiple adverse reactions to his
vaccine schedule. Jeanna is co-founder and co-director of “AIM” (Autism Is
Medical) a 501c3 nonprofit organization created to serve the growing medical and
educational needs of the autism community. She resides in Austin, TX with her
amazing family and is the public relations coordinator for the Autism Media
Channel.
Who we are
*(C) 2013 Autism Is Medical
Proprietary and Confidential
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“Autism Is Medical” was created to serve the growing medical
needs of the autism community through appropriate recognition,
treatment, awareness, and access to health care for this medically
complex patient population.
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We are well known in the community, both locally and nationally,
and have established personal and professional relationships with
leading physicians, funding sources, and other autism
organizations.
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Our combined experience both professionally and personally,
along with our individual journeys with our own medically
complex children, make us uniquely qualified to fulfill our mission.
Our Organization
*(C) 2013 Autism Is Medical
Proprietary and Confidential
To support a comprehensive interdisciplinary
medical model focused on underlying
pathophysiology, appropriate treatments and
standards of care surrounding the autism
spectrum population.
Objective
*(C) 2013 Autism Is Medical
Proprietary and Confidential
Underlying medical
problems,
physiological
causes
Behavioral
issues, selfinjurious
behaviors,
tantrums
Developmental
delay, sensory
processing
disorder,
language
disorder
Our children represent the larger
autism population.
*(C) 2013 Autism Is Medical
Proprietary and Confidential
Prevalence
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1 in 88 children
1 in 54 boys
Only includes 8 year
olds
Does not include our
children
Not representative of
true numbers
Patient population
increasing rapidly
No statistical data
for associated health
issues
More realistic
numbers would
resemble that of
children with asthma
in the U.S.
http://www.cdc.gov/ncbddd/autism/data.html
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*Increased use of
Emergency Dept.
No medical
standard of care
No coordination of
care/medical home
Inadequate
assessment and
treatment of pain
Behavioral
symptoms not
investigated for
physiological cause
*Luther G. Kalb, Elizabeth A. Stuart, Brian Freedman, Benjamin Zablotsky, Roma Vasa. PsychiatricRelated Emergency Department Visits Among Children With an Autism Spectrum
Disorder. Pediatric Emergency Care, 2012; DOI: 10.1097/PEC.0b013e3182767d96
Current practice pitfalls
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
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Psychotropic drugs first line of treatment
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No medical diagnostic evaluation being
performed; first intervention is developmental
screening often times not by an MD but rather
another discipline i.e. ST, OT, PT
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Missed diagnosis; mitochondrial disorder,
seizure disorder, bowel disease, immunological
disorder
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Patient does not receive treatment
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Poor outcome with no appropriate interventions
Negative outcomes
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
Mitochondrial
/Metabolic
disorder
GI
disorders
Immune
dysfunction
Autism
Medical diagnosis inappropriately
funneled into Psychological model
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
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First intervention should be diagnostic investigation of
symptoms
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Comprehensive coordination of care
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Coordinate with developmental and psychological
evaluation
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Medical intervention improves health and functional
outcomes, reduction in use of services, cost to
educational system, agencies, Medicaid, etc.
Medical standard of care
*(C) 2013 Autism Is Medical
Proprietary and Confidential
AAP states:
“The most common GI diagnoses identified in children with
ASDs include constipation, diarrhea, and gastroesophageal
reflux, and these are usually treated in a standard
manner.9,10 Children with ASDs may not present with
the typical symptoms of a GI disorder, however, and
an alteration of their baseline behavior may be the
only indicator of its existence. There is a serious dearth of
adequately designed studies on treatments for documented
GI disorders and their outcomes, including behavioral
changes, in children with ASDs.”
http://pediatrics.aappublications.org/content/130/Supplement_2/S160.full
Behavior changes may be the only
indicator of underlying pathophysiology
*(C) 2013 Autism Is Medical
Proprietary and Confidential
AAP states:
Statement 1 (Key Statement)
“Individuals with ASDs who present with gastrointestinal
symptoms warrant a thorough evaluation, as would be
undertaken for individuals without ASDs who have the same
symptoms or signs. Evidence-based algorithms for the
assessment of abdominal pain, constipation, chronic
diarrhea, and gastroesophageal reflux disease (GERD) should
be developed.”
http://pediatrics.aappublications.org/content/125/Supplement_1/S1.full
Standard of care and diagnostic
investigation recommended
*(C) 2013 Autism Is Medical
Proprietary and Confidential
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All autistic patients receive comprehensive medical
diagnostic testing to rule out pathophysiology as primary
intervention
Coordination of care by pediatrician/medical home/nurse
navigator
Appropriate Emergency Room protocols
Comprehensive pain assessment
Parental support, case management, social work
Multidisciplinary outpatient clinic including nutrition
Coordination with psychiatry, developmental clinicians
Coordinate with appropriate therapies
Medical standard of care
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
Medical
diagnostic
testing
Developmental
and Psychiatric
evaluation
Parent support
and education
Coordination of
care
Develop
comprehensive
plan of care
Improving autism outcomes
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
*(C) 2013 Autism Is Medical
Proprietary and Confidential
Preparing
a plan
• Know your rights
• Medical history prepared
Emergency
HCP
• Specialist recommendations
• Caregiver copies, Police, Fire,
school
Coordinate
• Local ER
• Local pediatrician or family
practice
Emergencies – Planning Ahead
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The following are every patient’s rights:
You have the right to be informed about the care you will receive.
You have the right to get important information about your care in your preferred language.
You have the right to get information in a manner that meets your needs, if you have vision, speech, hearing or
mental impairments.
You have the right to make decisions about your care.
You have the right to refuse care.
You have the right to know the names of the caregivers who treat you.
You have the right to safe care.
You have a right to have your pain addressed.
You have the right to care that is free from discrimination. This means you should not be treated differently because
of:
age
race
ethnicity
religion
culture
language
physical or mental disability
socioeconomic status
sex
sexual orientation
gender identity or expression
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You have the
You have the
You have the
You have the
You have the
advocate is a
right to know when something goes wrong with your care.
right to get a list of all your current medicines.
right to be listened to.
right to be treated with courtesy and respect.
right to have a personal representative, also called an advocate, with you during your care. Your
family member or friend of your choice.
http://www.jointcommission.org/Speak_Up__Know_Your_Rights/
Patient Rights
AIM has partnered with GC
Publishers to bring you medical
CARE bracelets and keychains
customized and preloaded with
software specific to the ASD
community. This will enable you
to quickly access, highlight,
track, download, update, record
and maintain each family’s
comprehensive personal medical
record.
AIM Care Bracelet/Keychain
Key Features
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Private and portable
Operates from PC or MAC
Password protected and encrypted
Data can be imported from hospital or
office
Durable and waterproof
Software included
No monthly fees
Internet access not required
Easy to update
Key Features
Underlying,
undetected
medical
problems
Vaccines given
when
contraindicated
No safety
testing for
administration
of current
vaccine
schedule
Vaccine reactions and adverse
events
“On October 1, 1988, the National Childhood Vaccine Injury Act of 1986
(Public Law 99-660) created the National Vaccine Injury Compensation
Program (VICP). The VICP was established to ensure an adequate supply
of vaccines, stabilize vaccine costs, and establish and maintain an
accessible and efficient forum for individuals found to be injured by certain
vaccines. The VICP is a no-fault alternative to the traditional tort system
for resolving vaccine injury claims that provides compensation to people
found to be injured by certain vaccines. The U. S. Court of Federal Claims
decides who will be paid. Three Federal government offices have a role in
the VICP:
the U.S. Department of Health and Human Services (HHS);
the U.S. Department of Justice (DOJ); and
the U.S. Court of Federal Claims (the Court).
The VICP is located in the HHS, Health Resources and Services
Administration, Healthcare Systems Bureau, Division of Vaccine Injury
Compensation.”
http://www.hrsa.gov/vaccinecompensation/index.html
Vaccine Injury Compensation
Program
“The Vaccine Injury Table (Table) makes it easier for some people to get
compensation. The Table lists and explains injuries/conditions that are
presumed to be caused by vaccines. It also lists time periods in which the
first symptom of these injuries/conditions must occur after receiving the
vaccine. If the first symptom of these injuries/conditions occurs within the
listed time periods, it is presumed that the vaccine was the cause of the
injury or condition unless another cause is found. For example, if you
received the tetanus vaccines and had a severe allergic reaction
(anaphylaxis) within 4 hours after receiving the vaccine, then it is presumed
that the tetanus vaccine caused the injury if no other cause is found.
If your injury/condition is not on the Table or if your
injury/condition did not occur within the time period on the Table,
you must prove that the vaccine caused the injury/condition. Such
proof must be based on medical records or opinion, which may
include expert witness testimony.”
http://www.hrsa.gov/vaccinecompensation/vaccinetable.html
Vaccine Injury Table
Reporting vaccine
adverse event is
not mandatory for
practitioners
Practitioners are
not aware of
symptoms that
indicate an
adverse reaction
Anyone can report
a vaccine adverse
reaction to VAERS
Go to
vaers.hhs.gov
VAERS – Vaccine Adverse Event
Reporting System
Vaccines and
Autism
•CDC and HHS
have denied
connection
Whistleblower
• Dr. William
Thompson, top
CDC researcher,
admits results of
study looking at
MMR and autism
connection were
altered and
records
destroyed.
CDC Whistleblower
Congressional
Hearing
•Congressman Bill
Posey requests
congressional
hearing and
investigation.
www.autismismedical.com