1. “Autism in the Army” 21 July 2008 Gaylord Texan Resort and Convention Center, Grapevine, Texas Presented by Scott Campbell

2. What are Autism Spectrum Disorders? Definition - Pervasive Developmental Disorders or Autism Spectrum Disorders are developmental disabilities that typically appear during the first three years of life. –Pervasive Developmental Disorders include Autism, Asperger’s Syndrome, Rett’s Disorder, Childhood Disintegrative Disorder (CPD), or Pervasive Developmental Delay-Not Otherwise Specified (PDD-NOS). –Autism is a broad-spectrum neurological disorder that causes the brain to process information differently. –It is not a mental or psychological disorder. –Autism impacts the normal development of the brain in the areas of social interaction and communication skills, along with some form of repetitive behaviors. –Specific cause is unknown, and there is no definitive cure.

3. A Spectrum Condition Delayed speech is usually the first sign of a possible development delay. Affects persons in varying degrees, severity and symptoms. Independence levels vary. Children and adults with autism spectrum disorders are more like us than different. Each person with autism is unique. May display strength in some cognitive skills. Lasts their entire lives to some degree.

4. Incidence No racial, ethnic, or social boundaries. Income, lifestyle and education levels have no effect. It is not caused by the way parents raise their children. Affects over 560,000 individuals (ages 3 to 22) per February 2007 CDC Report. America’s fastest growing developmental disability at 1 in 150 births per February 2007 CDC Report. [1 in 97 in FCPS for FY07, 729% growth since 1997] More prevalent in boys (1 in 67 to 150 births) versus 1 in 233 to 500 births for girls or male to female ratio of 2.8 to 5.5 to per Feb. 2007 CDC Report. Costs $3.2M per person during their lifetime, or at least $35B per year per Harvard School of Public Health Report, April 2006. Having a child with autism affects the entire family!

5. Autism Risks May not know what to do or how to seek help. May not be able to communicate contact information, what hurts, or what happened. May not react well in emergencies (re-enter burning home or touch downed power lines). May not recognize real danger. May have very high tolerance for pain. May flail against physical restraint or continue to struggle. May have other medical conditions, such as seizure disorder (up to 30 to 40%), asthma, hypotonia - low muscle tone. May react poorly to changes in routine for apparent trivial reasons. Some foods make the symptoms and behaviors worse.

6. Autism Risks, Continued May not respond to stop or other commands. May inappropriately approach or run towards you. May flee when approached due to sensory overload. May repeat words or body language of law enforcement officers. May answer no or why to all questions. May invade your personal space and have little eye contact. May not recognize badge, uniform or marked vehicle or understand what is expected of them if they do. Behaviors draw attention and may limit credibility. Elopement: lost and wandering. Attracted to water, reflections, shiny objects, or high places. 65 to 72% of marriages with special needs children fail.

7. Autism Risks, Continued At risk of misunderstandings by public, increased 911 responses. Up to seven times more contacts with law enforcement (Curry, 1993), since 20% of U.S. population are individuals with disabilities. (2001 US Census) Rate of crimes and violence against children with disabilities is 3.4 to 7 times higher than for children without disabilities. (Sullivan & Knutson, 2000) 5 Million serious crimes are committed annually against individuals with developmental disabilities in the U.S., which is almost five times higher than individuals without disabilities. (Pertersila, 1998) Violent crime is 5 to 10 times higher for individuals with disabilities. (Sobsey, 1996) Two major studies have found a serious crime rate 9.4 times higher for people with psychiatric disabilities. (Lehman and Linn, 1984).

8. Autism Risks, Continued “Approximately 61 percent of females and 25 percent of males with developmental disabilities will be sexually molested by age 18. Between 15,000 and 19,000 individuals with developmental disabilities are raped each year in the United States.” (Mitchell, 2006) “Children with intellectual disabilities were 4.0 times as likely as children without disabilities to be sexually abused.” (Sullivan & Knutson, 2000) Study found that the rate of sexual assault was 10.7 times higher and 12.8 times higher for robbery for people with developmental disabilities. (Wilson and Brewer, 1992) Another study found that 80% of victims of sexual assault with disabilities had been assaulted more than once and 49% had been sexually assaulted over 10 times. (Sobsey & Doe, 1991) Two studies found that 80% of women and 32 to 54% of men with developmental disabilities had been sexually assaulted compared to 13% of women in the general. (Hard, 1986) Multiple studies show that approximately 90% of individuals with developmental disabilities know their abusers.

9. Wandering & Autism: the leading reason for first response contact Often seek water sources (40% of deaths). Attempted entries. Run into traffic. Go with or run from strangers. Alzheimer’s parallel. May be seeking special treatment. Elopement prevention and care may look like abuse. Lack of ability to prevent elopement or self-injurious behaviors may lead to criminal charges. Up to 50% non-verbal. (14% unable to talk by age nine and 60% not able to speak fluently per University of Michigan Autism and Communications Dept. Paper, 2004)

10. Living with Autism Professional community often unable to guide and assist families. Life at home for families can be: –Children with autism exhibit behaviors, but are unable to explain why they do it, such as running away, bang heads, etc. –Children with autism do not sleep through the night and make funny, disturbing sounds in the night. –Limited family members are able to communicate with children with autism - grandma may not be able to baby-sit. –Children with autism need frequent help with basic living skills, such as eating, brushing their teeth, buttoning shirts, etc. –Children with autism don’t learn like typical children by watching others, so it takes longer to learn everything. –Children with autism have other medical issues, such as seizures.

11. How Many? 8,500 per Paragraph 2.1 of Section 10 of Chapter 20 of the TRICARE Operations Manual 6010.51-M, dated 15 March 2008 at http://manuals.tricare.osd.mil.http://manuals.tricare.osd.mil –“Preliminary, but internally reliable counts of the number of military-dependent children with autism reveals that among the more than 1.2 million children of active duty personnel, approximately 8,500 carry one of the autism spectrum disorder diagnoses.” 13,400 per the FOIA responses from DoD, dated April 11, 2008 & May 20, 2008. 700 in the Extended Care Health Option (ECHO) Program per the Congressional Budget Office report dated 15 May 2008, with only 160 receiving ABA therapy at or near the maximum coverage monthly level of $2,500. The national ratio from the CDC was 1:148 as of February 2007. Given the above figures, the military autism ratio is between 1:138 and 1:88. –1,177,190 (all ages) military dependent children count is from the 2005 DoD study. The 138 ratio is based on a 8,500 count and the 88 ratio is based on a 13,400 count.

12. Where to start? Listen to the families! Little difference than for those with any other special needs kids, but the how may be different. Learn about services for these families from local school system and social services agencies (Medicaid Waivers and SSI). Autism Research Institute web link for military at http://www.autism.com/families/military/military.htm. http://www.autism.com/families/military/military.htm –FREE "Recovering Autistic Children” book at https://www.autismwebsite.com/ari/militarybookrequest.htm. https://www.autismwebsite.com/ari/militarybookrequest.htm –25% discount on ARI’s Defeat Autism Now! (DAN!) conferences. Specialized Training of Military Parents- –Two email list servs on website at http://www.stompproject.org/listserv.asp. Excellent publications at http://www.stompproject.org/publications.aspttp://www.stompproject.org/listserv.asphttp://www.stompproject.org/publications.asp Advocate for the families! Provide case management assistance with TRICARE, housing, CLC, local school system and social services agencies.

13. Basic TRICARE-Covered Therapies (Not Under ECHO Program) Basic TRICARE-Covered Therapies include: Speech and Language PROMPT therapy (SLT) Pediatric Occupational Therapy (OT) Physical Therapy (PT) Durable Medical Equipment (DME) All Testing Helps to have a provider already picked and listed on the request for all TRICARE requests. Get a copy of referral ASAP after it is submitted to preclude problems with utilization personnel filling it.

14. Extended Health Care Option Program MUST be enrolled in Exceptional Family Member Program (EFMP) first! Program provides up to $2500 of services per month for each family member enrolled in ECHO, but with monthly co-pay depending on sponsor’s rank. TRICARE ECHO info is at http://www.tricare.osd.mil/tricaresmart/product.aspx?id=294 &CID=0&RID=3. http://www.tricare.osd.mil/tricaresmart/product.aspx?id=294 &CID=0&RID=3 Health Net ECHO info is at: https://www.hnfs.net/common/caremanagement/echo.htm and https://www.hnfs.net/common/caremanagement/ECHO%20FAQs. htm. https://www.hnfs.net/common/caremanagement/echo.htm https://www.hnfs.net/common/caremanagement/ECHO%20FAQs. htm

15. Applied Behavior Analysis (ABA) Therapy Under ECHO Applied Behavior Analysis (ABA) therapy is a structured one-on- one program to identify and address problem areas unique to each individual child. ABA falls under Section 9.1 of Chapter 9 for “special education.” Eligibility criteria listed in Sections 2.2 through 2.4 of Chapter 9 of the TRICARE Policy Manual 6010.54-M at http://manuals.tricare.osd.mil. http://manuals.tricare.osd.mil Most autistic children qualify for services under the "Significant Physical Disabilities" at Section 2.3 by having problems with “unaided performance of at least one of the following major life activities is an ECHO qualifying condition: breathing, cognition, hearing, seeing, and age appropriate ability essential to bathing, dressing, eating, grooming, speaking, stair use, toilet use, transferring, and walking.”

16. Applied Behavior Analysis (ABA) Therapy Under ECHO Eligibility for mental retardation is under Section 2.2. List of certified providers is on the certificant registry at http://www.bacb.com/consum_frame.html. http://www.bacb.com/consum_frame.html Current problems with finding TRICARE-approved ABA providers (Section 17.1 of Chapter 9): –“Where such State license or certification is not available, are certified by the Behavioral Analyst Certification Board (BACB) as either a Board Certified Behavior Analyst or a Board Certified Associate Behavior Analyst”. –BCBAs and BCABA’s develop ABA programs, but do normally not deliver hands-on ABA therapy.

17. 2007 National Defense Authorization Act –SEC. 717. REPORT AND PLAN ON SERVICES TO MILITARY DEPENDENT CHILDREN WITH AUTISM. –(a) Plan Required- The Secretary of Defense shall, within 180 (18 April 2007) days after the date of the enactment of this Act, develop a plan to provide services to military dependent children with autism pursuant to the authority for an extended health care services program in subsections (d) and (e) of section 1079 of title 10, United States Code. Such plan shall include-- (1) requirements for the education, training, and supervision of individuals providing services for military dependent children with autism; (2) standards for identifying and measuring the availability, distribution, and training of individuals of various levels of expertise to provide such services; and (3) procedures to ensure that such services are in addition to other publicly provided services to such children. –(b) Participation of Affected Families- In developing the plan required under subsection (a), the Secretary shall ensure the involvement and participation of affected military families or their representatives. –(c) Report Required- Not later than 30 days (18 May 2007) after completion of the plan required under subsection (a), the Secretary shall submit to the Committees on Armed Services of the Senate and the House of Representatives a report on the plan. The report may include any additional information the Secretary considers relevant.

18. Possible ECHO Program Improvements DoD Report and Plan on Services to Military Dependent Children with Autism, dated July 2007: –Will initiate a demonstration program to “expand the availability of ABA services to ECHO beneficiaries with autism”. –Expands the pool of possible certified supervisory providers to more that just BCBAs and BCABAs using a modified corporate services model. –Hands-on ABA tutors will be able to provide therapy when they work for a certified supervisory provider within a modified corporate services model. –Standards for ABA tutors not defined yet, but will probably require a bachelor’s degree, at least 250 hours of training/ experience, and mandatory background checks. –Standards on direct and indirect supervision and other competency requirements will need to be established. –Also, looking at “increased use of the ECHO respite benefit” and “consider changes that are necessary to make it available to more families”. –Other concerns include “the perceived lack of support at the base level for families with autistic children, the stated need for case management of autistic beneficiaries, and assignment policy based on special education needs of the service member’s dependent children”.

19. 2008 National Defense Authorization Act –SEC. 587. EDUCATION AND TREATMENT SERVICES FOR MILITARY DEPENDENT CHILDREN WITH AUTISM. –(a) Assessment of Availability of Services. –(b) Review of Best Practices. –(c) Personnel Management Requirements (1) Limited Stationing Options. (2) Stabilization Policy. –(d) Case Managers and Services. (1) Case Managers. (2) Individualized Services Plan. (3) Autism Support Centers. (4) Partnerships and Contracts. –(e) Demonstration Projects- Case Managers, Supervisory Level Providers, and Services Under Corporate Services Provider Model. –(f) Relationship to Other Benefits. –(g) Reports. (1) Report Identifying Covered Military Installations. (2) Reports on Demonstration Projects. –(h) Covered Educational Services Plan.

20. DoD Autism Demonstration Highlights From “DoD ENHANCING ACCESS TO AUTISM SERVICES DEMONSTRATION, An Overview of Main Provisions”, dated March 3, 2008: “More educational intervention providers –Expanded definition of supervisors should quickly increase # available –Newly defined provider class (Tutors) will make thousands of new providers available to implement services such as ABA to military families –Incentives for supervisors to bring on and train tutors Expanded services –Functional definition of covered services should permit families to have access to a greater range of existing evidence-based services”

21. 2008 Autism Demonstration Project –Details in Chapter 20 of TRICARE Operations Manual 6010.51-M at http://manuals.tricare.osd.mil, dated 15 March 2008 with changes on http://manuals.tricare.osd.mil 20 March and 22 April. –Only cover ABA; no other types of behavioral interventions reimbursable. –No more than $2500 per ECHO-registered beneficiary in any single month. –Eligibility (Section 5.0): –Diagnoses of only AD, PDDNOS, AS, and CDD. –Over age of 18 months and receiving special education under an IEP or IFSP. –Nonverbal or verbal intelligence testing or a letter of “inability to participate in intelligence testing every six months”. (IQ of over 35 DELETED!) –Between ages 18 months through 8 years, standardized testing of language skills and adaptive behavior must be completed “within 12 months of initiating services”. –Clinical review by TRICARE required, and a denial cannot be appealed.

22. 2008 Autism Demonstration Project –Providers (Section 4.0): –Must sign participation agreement and undergo a criminal history review. –Tutors employed by or contracted with TRICARE provider. –Certify tutor education, training, experience, competency requirements and that have successfully completed a criminal background check. –Certify tutor supervision requirements quarterly. –Maintain all records for three years. –Complete Behavior Plan and EIA Progress Report for each child every six months. (Section 3.6). Pay up to $47.65 using CPT 99080. –Must be BCBA or supervised by a BCBA and be a BCABA or have finished ABA academic coursework and 75% of experience requirements. –Carry liability insurance of $1M per claim and $3M aggregate. –“Shall organize and direct required quarterly family treatment progress meetings”. (Section 4.4.1). Pay up to $65.08 using CPT 90887. –Providers rates: Up to $125/ hour for BCBAs, up to $50/ hour for tutors.

23. 2008 Autism Demonstration Project –Tutors (Section 4.5): (Requirements prior to billing TRICARE) –Education- Minimum of 12 semester hours of college coursework and currently enrolled in associate’s or bachelor’s degree in psychology, education, social work, behavioral sciences, human development or related field) –or- minimum of 48 hours of any college coursework. –Classroom training- 40 hours required. –Experience- 50 hours of prior directly-supervised fieldwork and a minimum of 500 hours of prior indirectly-supervised fieldwork –or- 40 hours of directly-supervised fieldwork over no more than 12 weeks within the past 12 months. –Competency- no specific, quantified requirement. –Ongoing Supervision- If have 500 hours of prior indirectly-supervised fieldwork, then a required minimum of 1 hour of direct supervision and 2 hours of indirect supervision for every 40 hours of services. - If not yet completed 500 hours of indirectly-supervised fieldwork, then a required minimum of 2 hours of direct supervision and 2 hours of indirect supervision for every 40 hours of services.

24. 2008 Autism Demonstration Project –Parent/ Caregivers training (Section 6.4) –Classroom training- 6 hours are required in the first year by one parent. This can be waived through certificate to contractor by sponsor. –Practical training- 6 hours are required each year by one parent/ caregiver. If child is between ages 18 months through 8 years, then 10 hours are required each year by one parent/ caregiver. –Reimbursement- Up to $1500 per parent/ caregiver and $4500 per family each year. –TRICARE will not cost share (Section 6.6) –Training for tutors to meet training requirements, or tutor supervision. –Program development or administrative fees for creation of BPs that are separate from evaluation costs.

25. Other Benefits Under ECHO From Section 11.1 of Chapter 9, “Transportation of an ECHO beneficiary to or from a facility or institution to receive otherwise allowable services or items.” From Section 12.1 of Chapter 9, “ECHO registered beneficiaries are eligible to receive a maximum of 16 hours of respite care in any calendar month in which they also receive any other ECHO-authorized benefit.” From Section 14.1 of Chapter 9, “Durable equipment is a device or apparatus which does not qualify as Durable Medical Equipment under the TRICARE Basic Program but which is essential to the efficient arrest or reduction of functional loss from, or the disabling effects of a qualifying condition.”

26. Another Respite Care Source Exceptional Family Member Program Respite Care available as of June 2007 for active-duty Army families using Global War On Terrorism (GWOT) dollars. Marine Corps brought a similar program on line in August. “Qualifying families are eligible to receive up to 40 hours of EFMP respite care monthly for each certified exceptional family member”. It is “consumer-directed” and can pay up to $25 an hour. EFMP certification, respite care qualification and administration of the entitlement are through the local EFMP Manager

27. Defeat Autism Now! (DAN!) Doctors Find a DAN! Doctor by using the Autism Research Institute web site of http://autism.com/dan/danusdis.htm for within the U.S. and http://autism.com/dan/danforeigndis.htm outside the U.S. http://autism.com/dan/danforeigndis.htm outside the U.S Sample questions for DAN MDs are at http://autism.com/dan/ques2ask.htm.http://autism.com/dan/ques2ask.htm Initial referral for an "autism specialist to medically evaluate and treat autism" under section 3.10 on treatment of mental disorders, chapter 7 of the TRICARE Policy Manual 6010.54-M at http://manuals.tricare.osd.mil. Have the specific DAN! Doctor listed on the referral, since that makes the authorization process go a lot faster. They have ordered additional testing, recommended specific diets and biomedical interventions (14 daily supplements), daily constipation medication, semi- weekly Methyl B-12 supplement injections, and weekly suppositories for heavy metal (NOT Mercury) chelation (authorized under TRICARE section 2.7 of chapter 7). After getting an authorization up-front from TRICARE, we have been reimbursed for most of the costs for these visits.

29. For more information, contact: Scott Campbell 703 681-9426 (Office) 703 241-2640 (Home) scott.alan.campbell@us.army.mil Autism New Parent Suggestions web link at http://www.poac- nova.org/base.cgim?template=new_par ent_resource_suggestions http://www.poac- nova.org/base.cgim?template=new_par ent_resource_suggestions