Autism: What You Need to Know About HB 4260 and the Impact on Families Judith Bertenthal-Smith MS, LPC, ALPS Delegate Denise L Campbell-District 37 West Virginia Licensed Professional Counselors Association Annual Conference May 11, 2012

What is Autism Spectrum Disorder A complex neurodevelopmental disorder that typically appears during the first three years of life. Typically lasts throughout a person’s lifetime Fastest–growing serious developmental disability in the U.S. Characterized by social impairments, communication difficulties and restrictive and stereotyped patterns of behavior Range of symptoms: from mild (Asperger’s syndrome) to severe dysfunction

Population Affected All races All ethnic groups All SES groups Children of: All races All ethnic groups All SES groups

Prevalence Boys are 4 times more likely to be affected than girls 1 in 54 boys is on the autism spectrum 1 in 88 children is diagnosed with autism (CDC, 2012)

Symptoms Impaired social interaction & unresponsive to people Poor eye contact Speech delay Repetitive movements (hand flapping, rocking) Difficulty transitioning from one activity to another Obsessive behaviors (opening and closing doors, etc.) Difficulty in social situations Strong negative response to loud noise, new situations and people Non responsive to name May have co-occurring conditions (Fragile X syndrome, tuberous sclerosis, Tourette syndrome, Learning disabilities, ADD (20-30% develop epilepsy by adulthood)

Five Behaviors that signal an evaluation is needed Child does not babble or coo by 12 months Does not gesture (point, wave, grasp by 12 months) Does not say a single word by age 16 months Does not say two-word phrases on his or her own by 24 months Has any loss of any language or social skill at any age ( Autism Society of America)

Treatment Early detection and evaluation Early interventions services which may include: Speech Therapy Occupational Therapy Behavior focused Therapy ABA Trials/Therapy (Applied Behavioral Analysis) Individual and/or Family Therapy Medications for anxiety, depressing, OCD, seizures

Prognosis As of this date there is no prevention or cure for Autism. Research shows that early interventions that are patient specific have a an improvement rate of approximately 40%. Continued research is needed

Screening and Diagnosis M-CHAT (modified Checklist for Autism in Toddlers) Pediatricians are encouraged to use this screening routinely M-CHAT is free for clinical, research and educational purposes www.firstsigns.org or http://www.mchatscreen.com

DSM-IV-TR Diagnosis Autistic Disorder A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3): (1)  qualitative impairment in social interaction, as manifested by at least two of the following: (a)  marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction (b)  failure to develop peer relationships appropriate to developmental level (c)  a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest) (d) lack of social or emotional reciprocity

DSM-IV-TR Diagnosis cont’d (2)  qualitative impairments in communication as manifested by at least one of the following: (a)  delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) (b)  in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others (c)  stereotyped and repetitive use of language or idiosyncratic language (d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level .

DSM-IV-TR Diagnosis cont’d (3)  restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: (a)  encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (b)  apparently inflexible adherence to specific, nonfunctional routines or rituals (c)  stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements) (d) persistent preoccupation with parts of objects B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play. C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

Asperger’s Disorder (DSM-IV-TR) (1) Qualitative impairment in social interaction, as manifested by at least two of the following: marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction failure to develop peer relationships appropriate to developmental level a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) lack of social or emotional reciprocity

Asperger’s Diagnosis cont’d (2). Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following: encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus apparently inflexible adherence to specific, nonfunctional routines or rituals stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) persistent preoccupation with parts of objects

Asperger’s Diagnosis cont’d (3) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning. (4) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

Pervasive Developmental Disorder-NOS (DSM-IV-TR) Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism) This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

Childhood Disintegrated Disorder Childhood Disintegrative Disorder Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas: expressive or receptive language social skills or adaptive behavior bowel or bladder control play motor skills Abnormalities of functioning in at least two of the following areas: qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity) qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play) restricted, repetitive, and stereotyped patterns of behavior, interest, and activities, including motor stereotypes and mannerisms The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia

Proposed DSM-V Revision Fold previously distinct subcategories of Autistic Disorder, Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Childhood Disintegrative Disorder (CDD) into a single category of Autism Spectrum Disorder with a revised set of criteria for diagnosis DSM-V collapses the DSM-IV-TR’s three essential “autism domains” Restricted, repetitive and stereotyped patterns of behaviors Impairment in social interaction Impairment in communication

Proposed DSM-V Revisions cont’d into two domains Social/Communication deficits Fixated interests and repetitive behaviors

Autism Spectrum Disorder Must meet criteria A, B, C and D   A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: 1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction, 2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures. 3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people

Autism Spectrum Disorder cont’d B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following: 1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).  2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes). 3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests). 4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects). C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) D.         Symptoms together limit and impair everyday functioning.

Severity Levels of Autism Spectrum disorder  Severity Level for ASD Social Communication Restricted interests & repetitive behaviors Level 3  ‘Requiring very substantial support’ Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.    Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres.  Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly. Level 2  ‘Requiring substantial support’ Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others. RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts.  Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest. Level 1 ‘Requiring support’ Without supports in place, deficits in social communication cause noticeable impairments.  Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others.  May appear to have decreased interest in social interactions.  Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts.  Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

What is being done at the federal and state levels A total of 34 states and the District of Columbia have laws related to autism and insurance coverage. At least 29 states—Arizona, Arkansas, California, Colorado, Connecticut, Florida, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia and Wisconsin—specifically require insurers to provide coverage for the treatment of autism. Other states may require limited coverage for autism under mental health coverage or other laws.

Access to Treatment in WV Available services are difficult to find after age 3. Child is seen by Birth to 3 program until age 3 Local school system is responsible to provide needed services after age 3 Different states have different programs and services Children that live in rural areas have difficulty accessing treatment New pre-school/special education mandate should increase educational interventions and early detection

West Virginia Presently in WV there is up to a 6 months waiting period for an evaluation The two main sites for evaluation in WV are: Marshall University and WVU (Klingberg Neuro Center)

WV Autism Insurance Legislation Timeline History of HB 4260 WV Autism Insurance Legislation Timeline 2007 Autism Prevalence 1:150 4 states have autism insurance mandate Two WV delegates have children with autism Bill Introduced requires coverage for all treatment, including experimental. Autism spectrum includes ADD & ADHD 4 House sponsors, No Senate sponsors Bill not heard in committee

History HB 4260 cont’d 2008 9 states have autism insurance mandate (1 bordering state) 2007 bill re-introduced 11 House sponsors, 2 Senate sponsors 1 parent as primary community advocate Bill not heard in committee 2009 Autism prevalence increases to 1:110 16 states have autism insurance mandate Bill amended to require FDA approval of treatments, $ Caps placed on ABA, ADD & ADHD no longer included 10 House sponsors, 4 Senate sponsors Bill rejected in House Banking & Insurance committee

HB 4260 cont’d 2010 24 states have autism insurance mandate (2 bordering states) Three WV delegates have children with autism 2009 Bill re-introduced 10 House sponsors, 4 Senate sponsors Community involvement increases with families visiting the Capital during the legislative session with support from local Autism Society House Banking & Insurance interim committee hears the bill, with testimony from a Pennsylvania advocate and WV family. Bill is heard and rejected in House Banking & Insurance committee during the legislative session. Mountaineer Autism Project (MAP), a unified group of parents and professionals, forms with the primary focus of getting legislation passed

HB 4260 cont’d With support from WV Autism Training Center, local Autism Society, and MAP, parents and advocates meet with Senators and Delegates outside of legislative session and devise a strategic plan. The co-chairs of the Joint Judiciary Committee sign on as lead sponsors of the bill. A new bill is crafted with support from Autism Speaks. A Joint Judiciary subcommittee hears the bill during interim with national representatives for Autism Speaks, The Autism Society of America, WV Autism Training Center, WV Center for Excellence in Disabilities, a WV Delegate with an autistic child, and insurance lobbyists. Numerous Parents, advocates, and children with autism attended the meeting. The subcommittee recommend the bill to the full judiciary committee. The Joint Standing Committee on the Judiciary passes the bill during interim session.

HB 4260 cont’d 2011 MAP launches “One Voice” media campaign at the beginning of the 2011 Legislative session, starting with a well-attended and publicized flash mob at the Capital Classic basketball game. With direction fro Map and Autism Speaks, all autism advocacy groups work together to organize a constant community presence at the capital, host numerous press events, and motivate constituents to contact their representatives in support of the bill. Long-time sponsors of the bill are in positions of legislative leadership and some legislative staff members take special interest in the bill. Autism Speaks provides critical grass-roots organizational support. Autism Speaks, WVU Center for Excellence in Disabilities, WV Autism Training Center, and private providers, present expert testimony at committee meetings. Parents and providers hold countless in-person meetings with legislators to educate them about autism and the need for the bill. In spite of heavy resistance from insurance lobbyists, the bill passes both House and Senate Judiciary and Finance committees before going to the full legislature for final passage. Drafting errors cause the bill to be passed back and forth between the house and senate the final night of the session, before eventually passing unanimously.

Before the Governor signs the bill into law, an attorney from the psychology board of examiners threatens to have the bill vetoed because it is their position that behavior analysts are practicing psychology without a license. April 1, 2011 the Governor directs the psychology board to address their issues during interim meetings and signs the bill into law. The law will affect policies issued or renewed after January 1, 2012. MAP behavior analysts gather information regarding licensure and certification in preparation for conversations with the psychology board of examiners. August 2011, MAP members discover there are errors in the final language of the law that would require all autism treatment fall under a BCBA treatment plan, and that monetary caps intended solely for ABA would apply to all autism treatment. MAP members meet with the bill’s lead sponsors and council to address bill errors.

September 2011, MAP BCBA’s discover that the Secretary of State, at the request of the psychology board, signed off on an emergency rule stating that behavior analysts were an immediate threat to public safety because they are practicing psychology without a license, and they cannot practice without direct supervision from a licensed psychologist. With the support of the Behavior Analyst Certification Board, Association of Professional Behavior Analysts, Autism Speaks, and Mountaineer Autism project, a WV BCBA sues the psychology board of examiners and launches a media campaign publicizing the suit. The psychology board of examiners and Secretary of State withdraw the emergency rule one day after the suit goes public.

HB 4260 cont’d October legislative interim session, a subcommittee of the Joint Judiciary Committee agrees to pass a bill designed to “clean-up” the errors with the now autism law. Government Organization committee meets with members of the psychology board of examiners, WV psych association, WV BCBA’s and BACB attorney. With encouragement from the Government Organization Committee, WV BCBA’s, with support from the Behavior Analyst Certification Board, Association of Professional Behavior Analysts, Autism Speaks and MAP, submit a Sunrise application to begin the legislative process to determine if WV BCBA’s should be licensed or remain operating under the jurisdiction of the BACB.

HB 4260 cont’d 2012 The “clean-up” bill is introduced early in the legislative session and is met with extreme resistance from the insurance lobby and the senate finance chair. Blue Cross, Blue Shield creates a policy requiring BCBA’s to also be licensed psychologists. Delegate Hunt makes an impassioned floor speech urging support for the cleanup bill. MAP organizes a media campaign to educate the public about the cleanup bill and Blue Cross’s policy that would virtually make it impossible for their policyholder’s to access ABA services. Following the media campaign and communication with MAP BCBA’s Blue Cross repeals their policy requiring BCBAs be licensed psychologists. MAP, and local Autism Society members, continue media campaign and numerous personal meetings with legislators. With strong support from the Governor and Senate leadership, the cleanup bill passes unanimously. April, 2012 The Governor signs the cleanup bill into law. The legislature will hold hearings regarding WV BCBAs sunrise application before June 2012. WV BCBA’s continue receive phone calls and emails from BCBAs in other states who are facing similar resistance from their states’ psychology board. Every state that has passed an autism insurance reform law has had to address the issue of BCBA licensure. It continues to be a national “hot-topic.”

April, 2012 The Governor signs the cleanup bill into law. The “clean-up” bill is introduced early in the legislative session and is met with extreme resistance from the insurance lobby and the senate finance chair. Blue Cross, Blue Shield creates a policy requiring BCBA’s to also be licensed psychologists. Delegate Hunt makes an impassioned floor speech urging support for the cleanup bill. MAP organizes a media campaign to educate the public about the cleanup bill and Blue Cross’s policy that would virtually make it impossible for their policyholder’s to access ABA services. Following the media campaign and communication with MAP BCBA’s Blue Cross repeals their policy requiring BCBAs be licensed psychologists. MAP, and local Autism Society members, continue media campaign and numerous personal meetings with legislators. With strong support from the Governor and Senate leadership, the cleanup bill passes unanimously. April, 2012 The Governor signs the cleanup bill into law. The legislature will hold hearings regarding WV BCBAs sunrise application before June 2012. WV BCBA’s continue receive phone calls and emails from BCBAs in other states who are facing similar resistance from their states’ psychology board. Every state that has passed an autism insurance reform law has had to address the issue of BCBA licensure. It continues to be a national “hot-topic.”

Update 2012 On April 2, 2012 Governor Tomblyn signed the HB 4260. Takes effect in July 2012 HB 4260 addresses what the $30,00 coverage cap applies to. The cap applies only to applied behavior analysis Does not apply on-on-one daily therapy

Delegate Campbell’s Family Journey

At age 3 I spoke only 5 words

At age 3 Logan was diagnosed with Autism

I had to wait 6 months for an evaluation

Thank-you for your Time and Attention!!!

What families need from LPCs Support Advocacy Trained LPCs to work with individual children and families affected by Autism Spectrum Disorder Be present at child’s IEP Be a part of the MDT

Resources Association for Science in Autism Treatment P.O. Box 188 Crosswicks, NJ   08515-0188 info@asatonline.org http://www.asatonline.org Autism National Committee (AUTCOM) P.O. Box 429 Forest Knolls, CA   94933 http://www.autcom.org Autism Network International (ANI) P.O. Box 35448 Syracuse, NY   13235-5448 jisincla@syr.edu http://www.ani.ac Autism Research Institute (ARI) 4182 Adams Avenue San Diego, CA   92116 director@autism.com http://www.autismresearchinstitute.com Tel: 866-366-3361 Fax: 619-563-6840 Autism Science Foundation 419 Lafayette Street 2nd floor New York, NY   10003 contactus@autismsciencefoundation.org http://www.autismsciencefoundation.org/ Tel: 646-723-3978 Fax: 212-228-3557 Autism Society of America 4340 East-West Highway Suite 350 Bethesda, MD   20814 http://www.autism-society.org Tel: 301-657-0881 800-3AUTISM (328-8476) Fax: 301-657-0869 Autism Speaks, Inc. 2 Park Avenue 11th Floor New York, NY   10016 contactus@autismspeaks.org http://www.autismspeaks.org Tel: 212-252-8584 California: 310-230-3568 Fax: 212-252-8676 Birth Defect Research for Children, Inc. 976 Lake Baldwin Lane Suite 104 Orlando, FL   32814 betty@birthdefects.org http://www.birthdefects.org Tel: 407-895-0802 MAAP Services for Autism, Asperger Syndrome, and PDD P.O. Box 524 Crown Point, IN   46308 info@aspergersyndrome.org http://www.aspergersyndrome.org/ Tel: 219-662-1311 Fax: 219-662-1315 National Dissemination Center for Children with Disabilities U.S. Dept. of Education, Office of Special Education Programs 1825 Connecticut Avenue NW, Suite 700 Washington, DC   20009 nichcy@aed.org http://www.nichcy.org Tel: 800-695-0285 202-884-8200 Fax: 202-884-8441 National Institute of Child Health and Human Development (NICHD) National Institutes of Health, DHHS 31 Center Drive, Rm. 2A32 MSC 2425 Bethesda, MD   20892-2425 http://www.nichd.nih.gov Tel: 301-496-5133 Fax: 301-496-7101 National Institute on Deafness and Other Communication Disorders Information Clearinghouse 1 Communication Avenue Bethesda, MD   20892-3456 nidcdinfo@nidcd.nih.gov http://www.nidcd.nih.gov Tel: 800-241-1044 800-241-1055 (TTD/TTY) National Institute of Environmental Health Sciences (NIEHS) National Institutes of Health, DHHS 111 T.W. Alexander Drive Research Triangle Park, NC   27709 webcenter@niehs.nih.gov http://www.niehs.nih.gov Tel: 919-541-3345 National Institute of Mental Health (NIMH) National Institutes of Health, DHHS 6001 Executive Blvd. Rm. 8184, MSC 9663 Bethesda, MD   20892-9663 nimhinfo@nih.gov http://www.nimh.nih.gov Tel: 301-443-4513/866-415-8051 301-443-8431 (TTY) Fax: 301-443-4279

QUESTIONS???