Families for Early Autism Treatment


FEAT is a non-profit, volunteer-driven organization of parents, family members, and treatment
professionals dedicated to providing best outcome Education, Advocacy and
Support for the Northern California Autism Community.
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 For New Parents     May 29, 2017  
Autism Can Be Treated Minimize
Trust your parent-instinct. Take action. Urgently pursue early diagnosis.
Autism is a pervasive medical condition requiring effective treatment like diabetes or cancer. Children do not outgrow Autism Spectrum Disorder.

  1. Go to your pediatrician with a written or video log of your child’s behavior deficits and excesses—which is any behavior same age children do that your child does not do or any excessive, compulsive or repetitive behavior your child does that same age children do not.
  2. If you have strong suspicions of an Autism Spectrum Disorder, immediately call Alta Regional Center to schedule a diagnostic assessment—(916) 978-6400. Follow up with an email. Do not except a verbal denial over the phone, ask for it in writing. The Regional Center must be reasonably certain that your child/adult does not have a developmental disablity to deny access to a comprehensive thorough assessment. 
  3. Immediately contact both a developmental pediatrician and a neurologist to make an appointment for an in-depth diagnostic evaluation. There can be a six month wait so it is important to make the appointments now. 
  4. Contact FEAT to learn about early implementation of 40 hour-per-week treatment based on the principles of Applied Behavior Analysis ABA—a step by step therapy to teach communication, play, self-help and social skills. FEAT’s volunteer parent mentors share treatment techniques, school and regional center policies, medical, dental and advocacy resources. FEAT empowers you to be your child’s most informed and effective advocate.
 
New Parent Checklist Minimize
Autism Spectrum Disorder (ASD), or Autism, includes Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger’s Disorder also known as Asperger’s Syndrome (AS).
  • Join FEAT (Here on www.featsacramento.org)
  • Read all materials in FEAT New Parent Packet, especially the Parent Resource Book.
  • Get to know the laws for individuals with developmental disabilities and autism spectrum disorder. Order or download and read the following free publications from Disability Rights California (DRC), formerly PAI. www.disabilityrightsca.org/issues/services_pubs.html.
  • Read Rights Under the Lanterman Act www.disablitiyrightsca.org/issues/services_pubs.htm
  • Read Special Education: Rights and Responsablities http://www.disabilityrightsca.org/issues/specialeducaion_pubs.html (multi-langue pdf documents available.)
  • Become familiar with California Special Education Programs: A Composite of Laws. The CA Dept. of Education is no longer printing the book yearly. The online database search engine 
  •  Attend FEAT Family Resource Meetings which hosts informative presenters. Also an opportunity to network, receive and share valuable support and advocacy information from other FEAT parents.
  • At FEAT website, sign up for FEAT SAC online interactive message board.
  • Read Department of Developmental Services (DDS) Autistic Spectrum Disorders: Best Practice Guidelines for Screening, Diagnosis and Assessment. http://www.dds.ca.gov/Autism/docs/ASD_Best_Practice2002.pdf
  • Obtain a diagnosis using best practice guidelines for your child from a developmental pediatrician or a clinical psychologist.
  • If you already have a diagnosis, consider getting a confirming diagnosis that is developmentally based.
  • Video tape your child's behavior for diagnoses documentation. 
  • Get Insurance denials in writing. (See Insurance Appeals section of Website).
  • Arrange for evaluations and services with the following agenices:
  • The school District where you reside (if your child is three years old or older.)
  • Alta California Regional Center (ACRC)
  • Important! Parents of babies please read:
  • AFTER JUNE 30, 2009, THE CRITERIA FOR ELIBILITY FOR TODDLERS 24 TO 36 MONTHS TO RECEIVE EARLY INTERVENTION SERVICES WILL BE SIGNIFICANTLY MORE RIGOROUS AND IT WILL BE MUCH MORE DIFFICULT TO QUALIFY. THEREFORE, IT IS IMPERATIVE FOR FAMILIES, CHILD CARE PROVIDERS AND HEALTH CARE PROVIDERS, ESPECIALLY PEDIATRICIANS, TO BE VIGILANT.
  • After July 1, 2009, any infant or toddler with a suspected delay will need a written referral to the regional center. The date on the referral will be the date that is used for evaluation purposes and to apply the criteria. For example, if the child is referred at 23 months old, but the evaluation period is not complete until the 25th month, the lesser criteria of 33% delay in one developmental area applies.
  • Document, Document, Document!
  • Purchase two binders with dividers.
  • Label one ACRC, and the other the name of your school district. Record EVERY interaction with both agencies, including: the date and time, with whom you spoke, their title, all pertinent details of the conversation, questions you asked and answers the answers you received, as well as a summary of the conversation.
  • It is a good idea to put all of the above information in an email and send it to the person with whom you spoke. If they do not reply with any additions or corrections to your email, your email then becomes the record of that conversation. If they reply, and if you disagree with anything in their reply, reply back and reiterate your understanding of the conversation. Ask for further clarification if necessary. Whenever you leave a message, record the time, date, and for whom.
  • Be sure to monitor whether your messages are being returned. If not, call that person's superior and report the dates/times messages were left, including going all the way up to the Executive Director at ACRC or the Superintendent of your school district if necessary.
  • When possible, all correspondences should be done via email or letter, and print out the emails for a section in your binder that tracks a written record of all communications with both agencies. This becomes an ongoing permanent documentation for future use.
  • Request, in writing, specific comprehensive evaluations/ assessments in all areas of suspected disability to accurately establish baseline functioning and identify appropriate services:
  • Communication—including expressive/ receptive and pragmatic (social) language
  • Functional skills assessment—including daily living skills, self-help skills, group participation skills, play skills, community access skills.
  • Occupational Therapy/ Sensory Integration (OT/ SI)—including handwriting
  • Assessment to plan for a 40 hour per week comprehensive ABA participation program. This assessment should be done by a qualified behavior analyst with extensive experience in the effective, research-backed treatment of autism.
  • Fine and gross motor skills assessment including assessment for Dyspraxia or Apraxia.
  • Social-Emotional Functioning
  • Pre-Academic and Academic—including visual-auditory processing.
  • Learning Style
  • Executive Function which includes organizational and planning abilities, working memory, inhibition and impulse control, self reflection and self-monitoring, time management and prioritizing, understanding complex or abstract concepts, and using new strategies. 
  • When signing the consent to an assessment plan, be sure to add to the document near your signature, the following in writing, "Please provide all written assessment reports, including subtest scores, and any other documents to be considered in the IEP meeting, one week prior to the scheduled IEP date." 
  • Retain a legible copy of the signed assessment plan.
  • Read Autism: Asserting Your Child’s Right to a Special Education by David Sherman.
  • Read Special Education: Rights and Responsibilities obtained from Disability Rights California (DRC) previously PAI. www.disabilityrightsca.org
  • After reading the above, talk with your parent mentor.
  • Give 24 hours written notice for audio recording of the meeting. A short email is sufficient.
  • Take home a legible copy of the school IEP or Regional Center IFSP (under three years old) or IPP meeting documents and read carefully before agreeing to any portion. You may sign and agree to some, all or none of the services offered in the meeting document. Agreeing to some services is called signing “with exception.”
You do not have to sign anything.
  • You may sign the meeting document “in attendance only” at the end of the meeting.
  • Carefully consider the services offered, obtain additional information if needed, consult with a FEAT Parent Mentor, bring your document to a FEAT parent meeting for input and then prepare your written response to the services offered indicating areas of agreement and disagreement, making sure that the services provided are evidenced-based to meet the child’s unique needs in the least restrictive environment, which means living and learning with typical peers in school and in the community. You may bring anyone you want to the meeting. It is strongly recommended that you bring a friend, relative, or another parent to take notes and to offer you support.
  • You can attach a "parent addendum"- often a parent submits information or writes his/her own version of the IEP meeting notes in this form.  In order to assure that this input becomes part of the IEP legal document, it should be referenced on the signature page, i.e. something like "see parent addendum/attachment titled/dated  and incorporated by reference"
 
New Parent Reading Minimize
The following books are strongly recommended for new parents. 
  • Facing Autism—Giving Parents Reasons for Hope and Guidance for Help, by Lynn Hamilton, 2000, WaterBrook Press. Colorado Springs, CO.
  • Let Me Hear Your Voice, by Catherine Maurice, 1993, Alfred A. Knopf, New York.   Note: At the time this book was written, it was thought that some children receiving two to three years of intensive ABA treatment would achieve and maintain near normalized functioning in cognitive and social areas into adulthood. It is now known, after many years of clinical experience and practice, that intensive comprehensive ABA treatment along with remediation of any debilitating health issues is the most effective treatment for the vast majority of people with autism. We also know that the vast majority of children will require ABA treatment and services for many years and through adulthood for many. Families who commit to this treatment will realize a higher quality of family life. This family commitment is an investment that will result in the individual being as capable as possible.
  • Teaching Individuals With Developmental Delays: Basic Intervention Techniques, by O. Ivar Lovaas, 2003, Pro-Ed.
 
Servers and Systems (The Sites) are for educational and informational purposes only. Information provided through The Sites should not be used as a substitute for care by a qualified Developmental Pediatrician, Pediatric Neurologist, Behavioral Psychologist, Behavior Analyst, Speech and Language Pathologist, Attorney, or other appropriate professional.

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