Next Step Guide - Autism Society NWPA

Autism Spectrum Disorder (ASD) diagnosing Criteria DSM-VThe doctor evaluating you or your child will refer to the DSM-V as areference that listed the criteria for every diagnosis.Previous to the newly revised DSM-V (May 2012), Autism spectrumdisorder consisted of Autism, Asperger’s syndrome, childhooddisintegrative disorder and pervasive developmental disorder nototherwise specified. Research from the Neurodevelopmental WorkGroup has led to these disorders being classified as one that is known asAutism Spectrum Disorder. All disorders in this category represent acontinuum from mild to severe.American Psychiatric Association has listed the following as criteria forAutism Spectrum Disorder. An individual must meet criteria A, B, C, andD for diagnosis.A. Persistent deficits in social communication and social interactionacross contexts, not accounted for by general developmental delays,and manifest by all 3 of the following:1. Deficits in social-emotional reciprocity; ranging from abnormalsocial approach and failure of normal back and forth conversationthrough reduced sharing of interests, emotions, and affect andresponse to total lack of initiation of social interaction,2. Deficits in nonverbal communicative behaviors used for socialinteraction; ranging from poorly integrated- verbal and nonverbalcommunication, through abnormalities in eye contact and bodylanguage, or deficits in understanding and use of nonverbalcommunication, to total lack of facial expression or gestures.3. Deficits in developing and maintaining relationships, appropriate todevelopmental level (beyond those with caregivers); ranging fromdifficulties adjusting behavior to suit different social contexts throughdifficulties in sharing imaginative play and in making friends to anapparent absence of interest in people6

B. Restricted, repetitive patterns of behavior, interests, or activities asmanifested by at least two of the following:1. Stereotyped or repetitive speech, motor movements, or use ofobjects; (such as simple motor stereotypes, echolalia*, repetitive useof objects, or idiosyncratic phrases*).2. Excessive adherence to routines, ritualized patterns of verbal ornonverbal behavior, or excessive resistance to change; (such asmotoric rituals, insistence on same route or food, repetitivequestioning or extreme distress at small changes).3. Highly restricted, fixated interests that happen to be abnormal inintensity or focus; (such as strong attachment to or preoccupationwith unusual objects, excessively circumscribed or preservativeinterests).4. Hyper-or hypo-reactivity tosensory input or unusual interestin sensory aspects of environment;(such as apparent indifference topain/heat/cold, adverse responseto specific sounds or textures,excessive smelling or touching ofobjects, fascination with lights orspinning objects).C. Symptoms must be present inearly childhood (but may notbecome fully manifest until socialdemands exceed limited capacities)7

D. Symptoms together limit and impair everyday functioning.SeverityLevel forASDLevel 3:RequiringverysubstantialsupportLevel 2:RequiringsubstantialsupportLevel 1:RequiringsupportSocial CommunicationSevere deficits in verbaland nonverbalcommunication skillscausing severimpairments infunctioning; very limitedinitiation of socialinteractions and minimalresponse to socialovertures from others.Marked deficits in verbaland nonverbal socialcommunication skills;social impairmentsapparent even withsupports in place; limitedinitiation of socialinteractions and reducedor abnormal response tosocial overtures fromothers.Without support in place,deficits in socialcommunication causenoticeable impairments.Has difficulty initiatingsocial interactions anddemonstrates clearexamples of atypical orunsuccessful responses tosocial overtures of others.May appear to havedecreased interest insocial interactions.Restricted Interest andRepetitive BehaviorsPreoccupations, fixatedrituals and/or repetitivebehaviors markedlyinterfere with functioning inall spheres. Marked distresswhen rituals or routines areinterrupted; very difficult toredirect from fixatedinterest or returns to itquickly.RRB’s and/orpreoccupations or fixatedinterests appear frequentlyenough to be obvious to thecasual observer andinterfere with functioning ina variety of contexts.Distress or frustration isapparent when RRB’s areinterrupted; difficult toredirect from fixatedinterest.Rituals and repetitivebehaviors (RRB’s) causesignificant interference withfunctioning in one or morecontexts. Resists attemptsby others to interrupt RRB’sor to be redirected fromfixated interest.8

Evaluation OptionsPsychoeducational EvaluationIf your child is school-aged (has started kindergarten), you can requestan evaluation from your child’s school psychologist or principal. Theschool may conduct a psychoeducational evaluation to diagnose yourchild. Your child may qualify for special education and the school willcreate an Individualized Education Plan (IEP) or a 504 plan. The plan canbe modified in order for your child to have the appropriate education.Outpatient Provider EvaluationA community health provider or a private psychiatrist, psychologist, orneuropsychologist can provide a diagnosis for your child. A licensedpsychologists or psychiatrist will meet with your child and complete anassessment that includes a diagnosis and recommendations for services.Private Physician or PediatricianAssessment can be made by your private pediatrician, physician,neurologist, or other qualified licensed physicians. This cost is oftencovered by your insurance company. There may be some instanceswhere private pay is required. It’s recommended that you talk with yourphysician with any concerns.TreatmentsTreatments for autism aren’t a cure but more of an intervention servicesto help promote the quality of life for the child and their family.Treatments are based onan individual basis andshould accommodatethe child’s specific needsas well as the family’sneeds.9

The American Academy of Pediatrics (AAP) recommends the followingstrategies for helping a child to improve overall function and reach his orher potential: Behavioral training and management. Behavioral training andmanagement uses positive reinforcement, self-help, and socialskills training to improve behavior and communication. Manytypes of treatments have been developed, including AppliedBehavioral Analysis (ABA*), Floor time*, Verbal behaviortherapy*, Pivotal Response Therapy (PRT*) and sensoryintegration*. Specialized therapies. These include speech, occupational, andphysical therapy. These therapies are important componentsof managing autism and should all be included in various aspectsof the child’s treatment program. Speech therapy can help achild with autism improve language and social skills tocommunicate more effectively. Occupational and physicaltherapy can help improve any deficiencies in coordination andmotor skills. Occupational therapy may also help a child withautism to learn to process information from the senses (sight,sound, hearing, touch, and smell) in more manageable ways. Medicines are most commonly used to treat related conditionsand problem behaviors, including depression, anxiety,hyperactivity, and obsessive-compulsive behaviors. Community support and parent training. Talk to your doctor orcontact an advocacy group for support and training. As you gainknowledge and try to make sense of this disorder, please knowthat many people have probably experience some or all of theemotions you may be going through at this time. The AutismSociety NWPA (814-455-3540) wants to help! Often times, justtalking to someone who has "been there" can really help.It is best to only change one (1) approach at a time so youknow what is working and which one isn’t the best matchfor your child or young adult.10

Many people with autism have sleep problems. These are usually treatedby staying on a routine, including a set bedtime and time to get up. Yourdoctor may try medicines as a last resort.CostsCaring for an individual with autism can range from 3.5 to 5 million.Annual costs in the U.S. totals about 90 million, but costs can bereduced to about two-thirds with early diagnosis and intervention.Medical Assistance (MA) and Supplemental Security Income (SSI)Medical Assistance has a broad coverage of medical and mental healthservices for persons under 18. If your child has a social securityapproved disability, he/she may be eligible for Medical Assistance underPH-95 or “loophole.” PH-95 or “loophole” only uses your child’s incometo determine eligibility. If your child is eligible, they remain eligible untilthe end of the month of his/her 18th birthday. To maintain coverage, youmust complete an annual reapplication, and keep the County AssistanceOffice notified of any address change. This is Pennsylvania’s system ofhealth care services for children with severe disabilities. Like privateinsurance, not all providers accept Medical Assistance. Always checkwith your provider to ensure that your Medical Assistance HMO will beaccepted.What does MA cover?MA covers services rarely covered by employer provided insurance suchas Behavioral Health Rehabilitation Services (“wraparound”)*, in‐homepersonal care services, diapers, nutritional supplements, prescriptionsand transportation (page 18) to and from medical appointments. It alsocovers services, like in‐home nursing, physical, speech or occupationaltherapy, without annual or lifetime caps often imposed by otherinsurance plans. Medical Assistance can be a child’s only insurance or itcan be secondary to other coverage, covering those services orequipment not covered by the child’s primary insurance.11

Will my child qualify for PH-95 “loophole”?There is a common misconception that all children with a disability, or allchildren with an IEP (Individual Education Plan), or all children with aparticular diagnosis qualify for Medical Assistance. That is not the case.The rules are just not that simple. However, many children with severedisabilities will qualify for Medical Assistance, regardless of their parent’sincome.Here are some basic rules: A child can qualify for MedicalAssistance even if she or hehas other health insurance(although the other insuranceneeds to be billed first) Age: Under 18. Disability: Child must meet theSocial Security disabilityguidelines. Resources (assets): Notconsidered (neither the parent’snor the child’s). Income: Income of the parentsor other caregivers is NOTcounted. However, incomewhich is legally considered to bethe child’s IS counted, with someexceptions.Having countable income does not disqualify a child from MedicalAssistance, so long as the amount of the income does not exceed theincome maximum. The maximum amount of countable income a childwith severe disabilities can haveand still get MedicalAssistance is 931 a monthfor the year 2012 (it goesup some each year).However, not all incomeis counted andsignificant deductionsare also taken.12

The application process for PH-95 (loophole) for MA and SSIThings you will need:1. Child’s birth certificate2. Child’s Social Security card3. Assemble documentation of the child’s disability or condition.(While Social Security will do this for families applying for SSI, it isthe parent/guardian’s responsibility to do this when applying forMedical Assistance under the disabled child (loophole)provision.)4. Bank Account with the child or young adult’s name (page 15).May be a joint account5. If age 16 or older state photo identificationHow to ApplyYou can apply either by filling out a paper application or by applyingonline. You can obtain a paper application form‐ PA600CH‐ by calling theHealthy Kids Hotline 1‐800‐986‐5437. You can also apply online athttp://www.compass.state.pa.us. When filling out the application it ishelpful to put “MA for disabled Child” at the top of the application. Afteryou fill out the paper application, you must either mail it or drop it off atyour local County Assistance Office. If mailing, send it certified or get amailing certificate to prove when you mailed it. If you are dropping it offat the County Assistance Office, ask for a receipt. After applying, you willbe asked to provide certain documentation, either in person or by mail,to your local County Assistance Office.Remember: If an SSI beneficiary has savings of 2,000 or more they couldlose entitlement to SSI benefits.Get an SSI eligibility determinationSSI (Supplemental Security Income) is a program administered by SocialSecurity that provides a monthly check and Medical Assistance topersons who meet Social Security’s disability criteria and have low13

incomes and assets. Even if the family is not seeking SSI, the CountyAssistance Office may require that you get a determination from SocialSecurity as to the child’s eligibility for SSI. Unlike Medical Assistanceunder the loophole, parental (and stepparent) income and assets DOcount in determining eligibility for SSI. However, Medical Assistance willnot be denied if parental income or asset exceeds the SSI limits.Therefore, it is sufficient to get a denial for SSI from Social Security solong as the denial is on the basis of income or assets‐ not because SocialSecurity has determined the child does not meet their disabilityrequirements. The SSI eligibility screening can be done with a simplephone call in most cases. To get a determination as to whether the childmeets the income and resource requirements, you should do thefollowing:1. Call Social Security at 1‐800‐772‐1213. When you hear therecorded message, choose the option that allows you to get a liveSocial Security representative. The parent/guardian shouldrequest an appointment be set up for an SSI eligibility screeningover the phone. Some representatives will give you a date andtime when a Social Security representative will call to take thenecessary information to make a determination on financialeligibility for SSI. Unfortunately, there does not appear to be aclear policy or practice regarding phone interviews so you mayneed to go into your local Social Security office to make an SSIapplication.2. Remember that parent’s and stepparent’s income and assetscount for SSI when under the age of 18 so be sure to have paystubs, bank statements and other income and resource recordsavailable on the date Social Security calls back. You will berequired to provide original pay stubs, bank account, birthcertificates, identification, etc. If you choose to do your interviewvia telephone, you will need to mail those documents to socialsecurity and they will mail them back to you. If you don’t want torelinquish these documents in the mail it is better to make anappointment at the social security office.14

3. If the Social Security representative determines that theparent/stepparent/child’s income or resources are over the SSIlimits, ask the representative to send a written letter to that effect.Keep that letter to submit to the County Assistance Office as proofthat the child was denied SSI. If the child had been on SSI recently(in the last year or so) and was terminated due to parental incomeor resources of the parent(s) or child, the County Assistance Officewill usually accept the fact that the child had been on SSI as proofthe child meets the Social Security disability standards so long asthe child was not terminated on grounds that he/she was nolonger disabled.Tip: If the child was terminated on the grounds that he/she no longer meetsthe disability standards, it is essential that the parent/guardian appeal the SSItermination (they have 65 days from the date on the SSI termination notice todo so). Otherwise, the determination of Social Security that the child does notmeet the disability standards will be binding on Medical Assistance and thechild will not qualify under category PH‐95.PLEASE NOTE: BANK ACCOUNT - You must receive your Social Securitypayments electronically. One of the ways you can choose to receive yourbenefits is through direct deposit. Be sure to have your checkbook or accountstatement with you when you apply. We will need that information, as well asyour financial institution’s routing number, to make sure your monthly benefit isdeposited into the right account. If you do not have an account with a financialinstitution or prefer to receive your benefits on a prepaid debit card, you cansign up for the Direct Express card program. With Direct Express , paymentsare made directly to the card account. Another payment option you may wantto consider is an Electronic Transfer Account. This low-cost federally insuredaccount lets you enjoy the safety, security and convenience of automaticpayments.What happens next for Medical Assistance?Once the application and necessary documentation has been submitted,the caseworker at the County Assistance Office has authority toimmediately find that the child meets the disability standards, pending afinal decision by the Medical Review Team (MRT).15

Will my child be enrolled in a Health Management Organization (HMO)?Children receiving MA will be in a HMO or a Health Insurance PremiumPayment (HIPP) program. The services the child needs (other thanbehavioral health services) are then obtained through the HMO, ratherthan through Medical Access itself, although the HMO must cover all theservices regular MA covers.The parent can choose from one of 3 Medical Access HMOs. If theparent does not choose, Medical Assistance will pick on

The Autism Society believes that all individuals with autism have the right to access appropriate services and supports based on their needs and desires. -Adopted by the Autism Society Board of Directors 4/1/95; revised by the Autism Society Board of Directors, 12/12/2009 -Adopted by Autism Society Northwestern Pennsylvania, July 1, 2011