Lou Vismara, M.D.

1. The Help Group Summit 2014“Addressing Wandering & Missing Individuals with Autism: The Risks,Interventions, Technology and Public Policies”by Lou Vismara, M.D. Senior Advisor, Sen. Darrell Steinberg President pro Tem, California Senate louis.vismara@sen.ca.gov Ph: (916) 651-4189 Fx: (916) 327-8867

2. Goals of Presentation • Overview of wandering/elopement. • Impact on individuals and families. • Legislative initiatives. • Recent advances. • Recommendations & strategies. • Discussion & next steps.

3. Wandering & Elopement: Overview Definition:leave safe space/caregiver ~ 4 yrs. or older. Unsupervised/unnoticed. No plan. Annual Missing Adults in Calif. (DOJ):35,242 - 37,717: Voluntary ~ 30,000.Unknown Circumstance ~ 3,400.Dependent ~ 2,000. Catastrophic/Suspicious ~ 600. Lost ~ 250 to 300. Annual Missing Childrenin Calif. (DOJ):93,697 – 94,152: Runaway ~ 90,000. Unknown Circumstance ~ 2,600. Family Abduction ~ 1,000. Catastrophic/Suspicious ~ 350 (25-30 stranger abduction). Lost ~ 250.

4. NCMEC: Missing Children with Special Needs(1/1/2-12 ─ 8/31/2014)www.missingkids.com/home

5. Autism Wandering: Recent Headlines Boy with autism rescued from Lake Michigan April 29, 2013. Northern Michigan authorities located a 6-year-old autistic boy, and removed him from Lake Michigan, after he became separated from his mother at the Fisherman’s Island State Park in Charlevoix County. Boy With Autism Leaves School, Rides Tricycle on Busy Road May 8, 2013. A 12-year-old boy with autism left his school and rode a tricycle through a busy road in Yonkers during rush hour Friday. Passerby pulls floating 5 year-old from North Naples pond June 19, 2013. A pool technician sitting in his car heard splashing. He ran and pulled the child out using a pole but she wasn’t breathing. 911 dispatcher gave CPR instructions and he was able to save the little girl’s life. Missing Autistic Girl From Minnetonka Found Unharmed June 30, 2013. Officers say she was found unharmed at a creek near County Road, about a half mile away from where she had gone missing.

6. Autism Wandering: Recent Headlines Missing Pomona Teen With Autism Fatally Struck On 71 Freeway in Pomona (Oct. 1, 2014)Police said Wednesday that a person fatally struck on the Chino Valley Freeway was a teen boy with autism who had recently been reported missing. The youth, who was 17 years old and had a history of wandering, was walking around 12:25 a.m. near the freeway center divider when he was hit by a Ford F150 truck. Missing Man With Autism, Located After Five-Day Search (Oct. 1, 2014)After a five-day search, police in Frederick, Maryland, said they have located a missing man, 24 years old, with autism. Stone walked out of the Community Living Vocational Day Program and may have been seen walking near the Frederick Fairgrounds. He was hospitalized for evaluation but appeared to be in good health. 

7. Autism Wandering: Serious & Potential Tragic “Occurrence & Family Impact of Elopement in Children with ASD”Pediatrics. 2012; 130;870. Wandering is 4 to 8 times greater with ASD (2,300 children): • Reported in 49% of children with ASD. • 58% of parents: Most stressful. • 62% of families: limit activities. • 40% of parents: disrupt sleep. Consequences of elopement: • 22 deaths < 14 yrs./age (2009-2011). • 91% deaths ~ drowning. • 32% families “close call” ~ drowning. • 65% families “close call” ~ traffic injuries.

8. Factors Associated with ASD Wandering Age/wandering:Children 4-7 yrs: Children 8-11 yrs: ASD: 46% ASD: 26% NT sibs: 11% NT sibs: 1%Clinical Manifestations: less verbal; lower cognitive. Location: Home (74%); Stores (40%); School (29%). Frequency: 29% multiple/day; 35% weekly.Motivation: Exploring/enjoyment (53%). Favorite place (36%). Escape/anxiety (34%). Sensory issues (30%). Special interests (30%). Av. time missing: 41.5 minutes.

9. Aggravating Factors Associated with ASD Wandering Challenges ~ “Wandering Individuals: • Lack of distinguishing physical features • Challenges in communication & social interactions Challenges ~ “Families: • Social isolation of families • Inadequate/lack of professional information • Difficulties in navigating complex bureaucracy Families Lack information • 50% NO information • 81% NO information from health professional • 86% NO information from physician

10. Autism Wandering: A Vicious Cycle

11. Autism Wandering: Responses & Tactics Resources Mobilized: Neighbors (57%). Police (35%). School (30%). Store personnel (26%). Data & Information - Missing Individual Name, age, physical description. Recent photograph (cropped picture of face is best). Clothing. Location & time last seen. Direction of travel; possible destination.Possible acquaintances. Prior history of “wandering.” Contact information.

12. Autism Wandering & Public Policy: “Avonte’s Law” “Senator Charles Schumer announced a proposal for a new law that would finance a program to provide optional electronic tracking devices to be worn by children with autism.”

13. S. 2386 (Schumer)‘‘Avonte’s Law Act of 2014’’ Grants to Law Enforcement to reduce the risks related to wandering of children with ASD & other disabilities: • $10 million annually over five years. • Provide training and emergency protocols for school administrators, staff, and families. • Provide training to law enforcement agencies in order to recognize and respond to individuals with intellectual and developmental disabilities. • Provide response tools and training for law enforcement and search-and-rescue agencies, including tracking technology.

14. National AMBER Alert ProgramAmerica's Missing Broadcast Emergency Response CALIFORNIA LAW: AB 415 (Runner) in 2002 • AMBER Alert activated only by law enforcement agencies. • The child must be 17 years old or younger. • AMBER Alert only for the most serious, child abduction. • There is sufficient descriptive information of child, captor, or captor's vehicle to issue an alert. • AMBER Alert NOT for cases involving runaways or parental abduction, except in life-threatening situations.

15. California’s Silver Alert ProgramSB 1047 (Alquist) 2012http://www.chp.ca.gov/silver The purpose of the Silver Alert program was to establish a quick response system designed to issue and coordinate alerts following the unexplained or suspicious disappearance of an elderly person. Initiation Criteria by Law Enforcement Agency: • The missing person is 65 years of age or older. • Investigating agency has utilized all available local resources. • Person missing under unexplained or suspicious circumstances. • Danger: because of age, health, mental/physical disability, environment, potentially dangerous person, or other factors. • Information available that, if disseminated to the public, could assist in the safe recovery of the missing person.

16. SB 1127 (Senator Norma J. Torres)Silver Alert Expansion Act of 2014: Individuals with Developmental Disabilities & Cognitive Impairment(Sponsored by The Help Group) Enables the California Highway Patrol to utilize the Emergency Digital Information Service Message or an electronic flyer to locate missing individuals with developmental disabilities or cognitive impairments. Uses California’s existing infrastructure to address a serious problem for individuals with ASD, developmental disabilities, Alzheimer’s, and other forms of cognitive impairments. Provides immediate information to the public about the missing individual, including images or descriptions and the time and location last seen to speed the process to locate the person. Signed into law by Gov. Brown on Sept. 18, 2014.

17. Autism Wandering & Technology “Missing children cases are complex and costly problem for the nation’s nearly 16,000 law enforcement agencies, more than half of which have fewer than 15 officers.” (Police Chief Magazine, 2010) Google: “Tracking Systems for Autism” ─ 4,150,000 results Types of Tracking Systems: Global Positioning System (GPS). Network Assisted GPS (A-GPS). Radio Frequency (RF). Uplink Time Difference of Arrival (U-TDOA).

18. Examples of Tracking Devices

19. Critical Resources

20. National Autism Association Recommendations:www.NationalAutism.org • Resources/advice for families (pediatricians and professionals). • Access to home safety items & water safety programs. • Insurance coverage & federal funding for tracking. • Access to augmentative communication technology. • Medical research (OCD; fight/flight; sleep disorders). • AMBER Alert. • Education/Toolkits for caregivers. • Training for physicians on wandering & ICD-9 Code - V40.31 (Wandering in Diseases Classified Elsewhere). • Resources for schools and specific response protocols. • Training for social workers, school administrators and first responders (Training Summits, Webinar series; Multiple Agency Involvement).

21. Lessons Learned Awareness Strategic planning Prevention Action plan Community involvement “Connect the dots” Next steps

22. Wandering & Missing Individuals with Autism ─ Concluding Concepts: “The secret of getting ahead is getting started.” (Mark Twain) “Innovation distinguishes between a leader & a follower.” (Steve Jobs) “Inspiration exists, but it has to find us working.” (Pablo Picasso) “Action is eloquence.”  (William Shakespeare)