Jeanna Reed Jill Rubolino Nikki Tomczak. Who we are Nikki Tomczak is co-organizer of the Autism Is Medical Houston support group, webmaster and social

Jeanna ReedJill RubolinoNikki Tomczak

*(C) 2013 Autism Is Medical Proprietary and Confidential

Who we are

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 co-founder 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.


Our Organization

“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.

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.

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.


Objective

To support a comprehensive interdisciplinary

medical model focused on underlying

pathophysiology, appropriate treatments

and standards of care surrounding the

autism spectrum population.


Our children represent the larger autism population.

Underlying medical problems,

physiological causes

Developmental delay, sensory

processing disorder, language disorder

Behavioral issues, self-

injurious behaviors, tantrums


Prevalence • 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




Current practice pitfalls

*Increased use of Emergency Dept.

No medical standard of care

Inadequate assessment and

treatment of pain

No coordination of care/medical

home

Behavioral symptoms not

investigated for physiological

cause

*Luther G. Kalb, Elizabeth A. Stuart, Brian Freedman, Benjamin Zablotsky, Roma Vasa. Psychiatric-Related Emergency Department Visits Among Children With an Autism Spectrum Disorder. Pediatric Emergency Care, 2012; DOI: 10.1097/PEC.0b013e3182767d96

http://dx.doi.org/10.1097/PEC.0b013e3182767d96



Negative outcomes

Psychotropic drugs first line of treatment

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

Missed diagnosis; mitochondrial disorder, seizure disorder, bowel disease, immunological disorder

Patient does not receive treatment

Poor outcome with no appropriate interventions




Medical diagnosis inappropriately funneled into Psychological model

Autism

Immune dysfunction

Mitochondrial /Metabolic disorder

GI disorders



Medical standard of care

First intervention should be diagnostic investigation of symptoms

Comprehensive coordination of care

Coordinate with developmental and psychological evaluation

Medical intervention improves health and functional outcomes, reduction in use of services, cost to educational system, agencies, Medicaid, etc.


Behavior changes may be the only indicator of underlying pathophysiology

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


Standard of care and diagnostic investigation recommended

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


Medical standard of care

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



Improving autism outcomes

Medical diagnostic

testing

Developmental and Psychiatric

evaluation

Develop comprehensive

plan of care

Parent support and education

Coordination of care




Emergencies – Planning Ahead

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

Patient Rights

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 You have the right to know when something goes wrong with your care. You have the right to get a list of all your current medicines. You have the right to be listened to. You have the right to be treated with courtesy and respect. You have the right to have a personal representative, also called an advocate, with you during your care. Your advocate is

a family member or friend of your choice. http://www.jointcommission.org/Speak_Up__Know_Your_Rights/

http://www.jointcommission.org/Speak_Up__Know_Your_Rights/

AIM Care Bracelet/Keychain

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.

Key Features

Key Features

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

Vaccine reactions and adverse events

Underlying, undetected

medical problems

Vaccines given when contraindica

ted

No safety testing for

administration of current vaccine

schedule

Vaccine Injury Compensation Program

“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); andthe 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 Table

“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

VAERS – Vaccine Adverse Event Reporting System

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.go

v

CDC Whistleblower

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.

Congressional Hearing• Congressma

n Bill Posey requests congressional hearing and investigation.

www.autismismedical.com

Documents

Jeanna Reed Jill Rubolino Nikki Tomczak. Who we are Nikki Tomczak is co-organizer of the Autism Is Medical Houston support group, webmaster and social