Family Resource Book AutismYork

Transcription

1 Family Resource Book AutismYork Autism York

2 Welcome Welcome to the AutismYork family resource book. This book has been designed to help provide basic information for a parent whose child has been recently diagnosed with an Autism Spectrum Disorder or who has recently moved into the York County area. After a child is diagnosed with an Autism Spectrum Disorder their parents are often bombarded with information, ideas and "helpful hints" from doctors, media, friends and parents of other children living with Autism. This bombardment can often lead to information overload, confusion and panic. In an attempt to avoid this and be as helpful as possible, we have not included "everything there is to know about Autism" in this book. This book contains brief summaries of Autism Spectrum Disorder, associated therapies and treatment and local agencies. To gain further information every parent is encouraged to conduct further research by looking at the websites and calling the phone numbers listed, contacting their medical providers and attending AutismYork meetings. As you have probably already found, there are almost as many therapies for Autism as there are children living with a spectrum disorder. To try and prevent "information overload", we have included several of the more common therapies and interventions in this booklet, but please understand that this is by no means a comprehensive list. Not every therapy works for every child. Please be sure to discuss any therapy or treatment plan with your child's treatment team, including pediatrician, teacher and service provider. AutismYork does not endorse any treatment option over another. The information provided here is meant to give a basic understanding and help direct you to find more in-depth accounts. AutismYork strongly recommends that before obtaining any treatment you research each topic, speak to your doctor and gain the appropriate medical guidance. This resource book has been designed to act as a workbook to help you navigate the world of special education services, wraparound and other services for your child. There are workbook style pages at the end of this book that are designed to help you keep basic information neatly in one place. Feel free to copy these forms as needed. You will be asked for certain information repeatedly by various providers, it may help to give them a copy of these completed forms. It may also help to keep your child s most current treatment plan, IEP and other school papers and medical forms in this binder. It is recommended that all of the papers pertaining to your child are kept in one location. However after a while you may find that the amount of paperwork can become very bulky and overwhelming. Keeping all the past paperwork in a file box or other location, and only the most current paperwork in this book may help you navigate the world of services for your child. Please personalize this workbook to suit your child s and families needs. For further help or assistance please contact AutismYork at or Autism York

3 Table of Contents P. 5 Frequently asked questions P. 12 Acronym dictionary P. 25 Therapies P.30 Local Agencies P. 59 Workbook Pages Autism York

4 Frequently Asked Questions about Autism Spectrum Disorders What is Autism? Autism is a complex range of developmental disabilities that typically appears during the first three years of life and affects a person s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today. Autism is the result of a neurological disorder that affects the functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by severe and pervasive impairment in several areas of development. What is an Autism Spectrum Disorder? Autism Spectrum Disorder (ASD) is a term used to describe 5 disorders, which share similar characteristics. The diagnosis is usually made by a developmental pediatrician or psychologist through the use of multiple checklists and the Diagnostic Statistical Manual. These 5 disorders are: Autism (sometimes referred to as classic Autism ) Individuals diagnosed with Autism usually exhibit more severe delays in the areas of communication, social skills, behavior and or cognitive abilities PDD-NOS or Pervasive Developmental Disorder-Not Otherwise Specified Includes children who show some symptoms of autism, but not enough to be diagnosed with other forms of the disorder. Asperger s Syndrome: Is usually characterized by advanced verbal skills that develop before age 3. Children and adults with Asperger s Syndrome often show difficulties in social interaction and restricted, stereotyped patterns of behavior and interests. There may be no general delay in language or cognitive development. Rett s syndrome: Is a genetic disorder primarily diagnosed in girls. It is characterized by decrease in skull circumference and brain growth, seizures, and other neurological problems. Childhood Disintegrative Disorder: An extremely rare disorder characterized by clearly apparent regression in multiple areas of functioning. This regression must follow at least 2 years of normal Autism York

5 development and the age of onset must be before the age of 10. In this booklet we will use the term ASD (Autism Spectrum Disorder) as a broad term encompassing all of the above including Autism, PDD-NOS, Asperger Syndrome, Rett's Syndrome & Childhood Disintegrative Disorder. Please do not think we are excluding anyone by using the term ASD to cover all ranges of the spectrum. In certain instances, we may refer specifically to Asperger's or one of the other disorders on the spectrum, but primarily we will use the term ASD. The above definitions are very brief and meant to only give a basic understanding of the different Autism Spectrum Disorders. For more detailed information, AutismYork strongly encourages parents/caregivers/service providers to conduct their own research. You can find more in depth descriptions of each disorder on the internet, in various books and through your medical/service provider. How is autism diagnosed? The following information taken from Autism Society of America website: "There are no medical tests for diagnosing autism. An accurate diagnosis must be based on observation of the individual's communication, behavior and developmental levels. However, because many of the behaviors associated with autism are shared by other disorders, various medical tests may be ordered to rule out or identify other possible causes of the symptoms being exhibited. At first glance, some persons with autism may appear to have mental retardation, a behavior disorder, problems with hearing, or even odd and eccentric behavior. To complicate matters further, these conditions can co-occur with autism. However, it is important to distinguish autism from other conditions, since an accurate diagnosis and early identification can provide the basis for building an appropriate and effective educational and treatment program. A brief observation in a single setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers' and/or teachers ) input and developmental history are important components of making an accurate diagnosis." What is the prevalence of ASD? The following information is from ASA website: In February 2007, the Centers for Disease Control and Prevention issued their ADDME autism prevalence report. The report, which looked at a sample of 8 year olds in 2000 and 2002, concluded that the prevalence of autism had risen to 1 in every 150 American children, and almost 1 in 94 boys. Autism is the most common of the Pervasive Developmental Disorders, affecting 1 in 91 births (Centers for Disease Control Prevention, 2009). Roughly translated, this means as many as 1.5 million Americans today are believed to have some form of autism, and this number is on the rise. Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of percent per year. At this rate, Autism Society of America. estimates that the prevalence of autism could reach 4 million Americans in the next decade. Autism knows no racial, ethnic, or social boundaries; family income levels; lifestyle choices; or educational levels, and can affect any family and any child. Although the overall incidence of autism is consistent around the globe, it is four times more prevalent in boys than in girls. Autism York

6 What causes ASD? Am I to blame? Nothing you did caused autism!!! Parents do not cause autism. The cause of autism is not yet known, although it is the topic of many research projects throughout the world. From ASA website: There is no known single cause for autism, but it is generally accepted that it is caused by biological and neurological differences in brain structure or function. Brain scans show these differences in the shape and structure of the brain in children with autism versus neuro-typical children. Researchers are investigating a number of theories, including the link between heredity, genetics and medical problems. In many families, there appears to be a pattern of autism or related disabilities, further supporting a genetic basis to the disorder. While no one gene has been identified as causing autism, researchers are searching for irregular segments of genetic code that children with autism may have inherited. It also appears that some children are born with a susceptibility to autism, but researchers have not yet identified a single "trigger" that causes autism to develop. If my child is delayed in some way, can t we just wait and see if he outgrows it? Every parent has the freedom to make all decisions regarding their children. AutismYork encourages parents to educate themselves about the choices and options available to them before making any decisions. The goal of this booklet is to help provide parents with information and resources to help make informed decisions on what is best for their child and family. It is important to remember that an official diagnosis is often needed to gain services such as special education or wraparound services. However a parent can still treat present symptoms without a diagnostic label. This can be done through speech services for a speech delay, occupational therapy or sensory activities for sensory issues, diet changes for intestinal issues, etc. What books should I read? There are literally hundreds of thousands of books related to Autism Spectrum Disorders. AutismYork suggests that you first read to gain general information. After gathering basic information, you can then determine what specific information you may be looking for, such as behavioral therapy, medical approaches, etc. AutismYork has a large lending library that contains both books with general information and those on specific topics. You may visit the website at to view an on-line catalog of all books available. Please remember that not every book or all information you read may be applicable to your child or family. There are MANY books out there. Three suggestions would be: Children With Autism: A Parent s Guide By Michael Powers Autism Treatment Guide By Elizabeth K. Gerlach Asperger s Syndrome By Tony Attwood Autism York

7 What treatments should I use? Every treatment has its own unique pros and cons. At this point there is no research to show that any treatment has been proven to work for each and every child. AutismYork suggests that you carefully research different treatments and decide on what best fits your child and family. This can be done through reading, on-line research, working with various professionals and most importantly talking to other parents. Many people may strongly advocate one type of program, and you may find just as many people who do not like that particular therapy. Although input from others will be helpful, only you know the specific needs of your child and can determine what treatment will be most successful. Please note that many families successfully use programs that are made up from parts of several different methods. By carefully monitoring the program, you can determine if your child is making progress and if there are any changes that need to be made to their treatment. How do people with autism learn best? All children learn best when their individual strengths and needs are incorporated into their curriculum. Many children need highly structured programs, while others learn best in a more natural environment setting. There is no one way of teaching or learning that is best for all children, including individuals with ASD. What works best is an approach that is individually tailored to your child s unique abilities. It is important that the program is reviewed and revised on an ongoing basis to ensure that it continues to be appropriate. The best instructor's are those who are flexible, caring and put the child's needs first in all they do. We would like to have another child. What are the chances of us having another child with autism? Depending on the source, the increase of autism when a sibling already is diagnosed is between 3% and 10%. There is a 25% chance of a sibling having a related problem. It is suggested that you discuss your concerns with your medical team. What is the range of intellectual ability? Children with autism have a wide range of intellectual abilities from above average intelligence to mental retardation. Estimating IQ in young children with autism is often difficult because of problems with language and behaviors that can interfere with testing. About half of the people with autism score below 50 on IQ tests, 20% score between 50 and 70, and 30% score higher. A small percentage of people with autism have extraordinary abilities in a particular area, such as music, math, drawing or visualization. Autism York

8 What kinds of jobs can individuals with autism do? As with any child, children with Autism are best suited to jobs that meet their individual strengths and talents. Many individuals may benefit from a structured environment, however others may do well in a more free flowing creative environment. Everyone has their own unique strengths, abilities and preferences. Your child may have a "special interest" that you can help to channel into a career. These areas of focused interest should be viewed as a possible strength when discussing career options for your child. These should be taken into account when searching for jobs and associated training. What will happen when my child grows up? Most parents don t know the answer to that question, even when their child doesn t have a disability. Neither do parents of children with Autism. There is a world of opportunities ahead of our children. Our hopes for their future include seeing them being independent, valued members of their communities, working at things they enjoy, having a circle of friends, as well as their family, to help them overcome life s obstacles, and, most importantly, being happy with who they are. This is a parent s greatest desire for any child, including those on the Autism Spectrum. What is the MA card and why do I need one? The Medical Access (MA) card is the insurance card used for Medical Assistance. This is the insurance provided through the Department of Welfare. Although this is often associated with those receiving welfare monetary assistance, this is not the only way to obtain the MA card. All children with an Autism Spectrum Disorder automatically qualify for the MA card regardless of parent income. It is highly recommended that you obtain an MA card for your child, as many services are only covered through Medical Assistance. Wraparound services are not covered by private insurance and most providers do not accept private pay. Many social skills programs are also only paid for by the MA card. An MA card may be obtained by calling the Office of Social Security ( ) and explaining that you would like to file for Medical Assistance for a child with Autism. You may also speak to your MH/MR Case Manager about obtaining an MA card. You may apply online at You may also visit the Department of Public Welfare on line at for more information about the Medical Access card. Autism York

9 What are wrap-around services? Behavioral Health Rehabilitative Services (BHRS) are often called wraparound services. Treatment and therapeutic interventions are prescribed by a psychologist or psychiatrist and are provided on an individual basis in the person s own environment such as home, school, and community. These services include Therapeutic Support Staff (TSS), Behavioral Consultants (BSC), Mobile Therapy (MT). Children/adolescents within the BHRS system are referred for services because they are experiencing behavioral and/or emotional difficulties in their home, school and/or community. Services are paid for only by the Medical Access card and are not covered by private insurance or self pay. BSC (Behavioral Specialist Consultant): The BSC is a Master s Level individual with a degree in a recognized mental health or human services field. They serve as a consultant to all members of the treatment team. The BSC designs and directs the implementation of a behavior modification treatment plan and provides assessment, program design, and monitoring. The BSC conducts observations to assimilate baseline data, develops the individualized behavioral modification treatment plan, and consults with the child/adolescent, his/her family, and other members of the treatment team. This person monitors and reports progress when indicated and prescribed. The BSC documents services provided in progress notes. The BSC serves as the clinical consultant for the TSS on the case. TSS (Therapeutic Support Staff): The TSS s primary role is implementation of the clinical treatment plan. The basic function of the TSS is to carry out the interventions and activities as stated in the treatment plan. The TSS provides interventions to a child/adolescent within the home, school, or community setting as deemed medically necessary. The TSS documents the interventions provided and response of the child/adolescent on a Daily Shift Report and is also responsible for completing other data collections forms. It is not the role of the TSS to make clinical decisions regarding treatment, this is done by the BSC or MT in coordination with the rest of the treatment team. The data collected by the TSS is collected and compiled by the BSC or MT to drive any changes to the treatment plan. MT (Mobile Therapist): The MT is a licensed mental health professional or an individual with a graduate mental health degree who provides intensive therapeutic services. These services include, child/adolescent-centered, family focused, individual, and family psychotherapy and often occur in the home setting. When MT is the only clinician on the case, the TSS will call the MT when they have clinical questions. BHRS supports the philosophy that children/adolescents with serious behavioral or emotional issues due to mental health diagnosis, medical conditions or Autism Spectrum Disorders, can be supported within their natural settings. Wrap-around services may enhance or supplement services offered by your intermediate unit, early intervention provider, or school district. What are some helpful websites? There are literally millions of websites pertaining to Autism Spectrum Disorders, therapies and associated topics. To help keep this booklet as concise and easy to use as possible we've listed the Autism Society of America and Autism York websites. Please visit these websites and see their list of links for more information. Autism Society of America - and AutismYork - Autism York

10 Acronym Dictionary Acronym Term Definition AAC ABA Augmentative and Alternative Communication Applied Behavior Analysis An area of clinical practice that attempts to compensate (either temporarily or permanently) for the impairment and disability patterns of individuals with severe expressive communication disorders (i.e., the severely speech-language and writing impaired). (ASHA 1989, p.107) The science of behavior and it's functions. It defines behaviors in measurable and observable terms. Changes are made to behaviors based on functional assessments with data to support interventions. All changes made must be functional to the learner. ADA Americans with Disabilities Act A law that guarantees equal rights for children and adults with disabilities. This civil rights law also provides and protects for access to public and private buildings and activities. APS ARC Approve Private School Advocacy and Resources for Citizens (formerly known as the Association of Retarded Citizens) This is a private school that is licensed by the Pennsylvania State Board of Private Academic Schools or Pennsylvania Charter Schools. This type of school is eligible for funds from school districts. This is the largest organization in the country for adults and children with development and cognitive disabilities. The PA state chapter of ARC helps to promote active participation and inclusion in all aspects of life in every community. AS Aperger's Syndrome A diagnosis under the Autism Spectrum that is usually characterized by advanced verbal skills that develop before age 3. Children and adults with Asperger s Syndrome often show difficulties in social interaction and restricted, stereotyped patterns of behavior and interests. There may be no general delay in language or cognitive development. Although not mentioned in standard diagnostic criteria, physical clumsiness and atypical use of language are frequently reported. Autism York

11 ASA Autism Society of America A national organization dedicated to Autism awareness. It's members work to better the lives of those living with an Autism Spectrum Disorder. T hey also help to educate the community about key issues related to Autism, ASD ASL ATD BAS BIP Autism Spectrum Disorder American Sign Language Assistive Technology Device Bureau of Autism Services Behavior Intervention Plan A general term used to refer to the 5 diagnosis under the umbrella Pervasive Developmental Disorder. A spectrum of psychological conditions characterized by widespread delay in communication, social interactions and behavior. Persons diagnosed with an Autism Spectrum disorder may also demonstrate severely restricted interests and highly repetitive behavior. A form of communication that uses purposeful hand motions, often used with those with hearing impairments, but also useful for children with Autism and other developmental delays. Any item, piece of equipment, or product system, whether acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities. All public schools, including charter schools, are required to consider the assistive technology needs of children with disabilities. Department of Public Welfare in Pennsylvania devoted to concerns of children with Autism and their families. These concerns include: insurance coverage, legal issues and trainings. A plan based on the results of a Functional Behavior Assessment to help a child develop appropriate replacements for behaviors of concern. It should be positive in nature, not punitive. Data should be collected on replacement behaviors to ensure that interventions are appropriate for the child and family s needs. BCBA Board Certified Behavior Analyst A behavior analyst who has completed an approved set of courses on Applied Behavior Analysis and has passed the National Board Examination. They are able to complete functional assessment of behaviors; create, implement and supervise behavioral programs. They must abide by the code of ethics as created by the BACB. Autism York

12 BSC Behavior Specialist Consultant The BSC is a Master s Level individual in a wrap around agency with a degree in a recognized mental health field. They serve as a consultant to all members of the treatment team, including child/adolescent, his/her family, school personnel, etc The BSC designs and directs the implementation of a behavior modification treatment plan and provides assessment, program design, and monitoring. The BSC serves as the clinical consultant for the TSS on the case. The title BSC does not automatically indicate that the person is a Board Certified Behavior Analyst. BHRS Behavioral Health Rehabilitation Services Often called Wraparound Services. Treatment and therapeutic interventions prescribed by psychologist or psychiatrist provided on an individual basis in the person s own environment such as home, school, and community. These services include Therapeutic Support Staff (TSS), Behavioral Consultants (BSC), Mobile Therapy (MT), and specialized services, as approved. BSE Bureau of Special Education The BSE within the Pennsylvania Dept. of Education is responsible for the education of students with disabilities from ages three through 21. CAI CASSP Computer Assisted Instruction Child and Adolescent Service System Program The use of the computer for training and instruction. The programs are called "courseware" and provide interactive training sessions. This instruction is designed to create interactive question/answer sessions. A comprehensive system of care for children and adolescents with severe emotional disturbance. This system of care ensures that services for children and adolescents with or at risk of severe emotional disturbance are planned collaboratively with the family and all the agencies that are involved in the child's or adolescent's life. (From CASSP literature and Website) CCBH Community Care Behavioral Health The managed care organization that authorizes and pays for behavioral health services used by Health Choices. A non-profit, behavioral health managed care organization (BH-MCO), that manages behavioral health services whose health coverage is sponsored through Medicaid, Medicare and commercial plans. Assists in providing services with public agencies, local agencies, and involved members and families. CLA Community Living Arrangement This is a manner in which adults with disabilities may maximum their independent Autism York

13 living and participation in the community. This may be done through small houses run by local agencies, or though an arrangement by several families. Community living house may have full time facilitators or part time coaches that check in on the members as needed. CM DD DD Case Manager Developmental Disability/Delay Dually Diagnosed The case manager is responsible for the overall coordination and monitoring of services. This person often assesses service needs based on treatment plan, develops, and implements a service coordination plan. They identify, link, and coordinate services for the child/adolescent and family, and monitors the effectiveness of services. This person is the contact person for all non-clinical questions. A developmental delay occurs when a child s physical, emotional, behavioral and/or cognitive development occurs at a slower pace then his age peers. It is diagnosed in the following two ways: (i) The child s score, on an assessment instrument which yields a score in months, indicates that the child is delayed by 25% of the child s chronological age in one or more developmental areas. (ii) The child is delayed in one or more of the developmental areas, as documented by test performance of 1.5 standard deviations below the mean on standardized tests. Any physical or mental condition that begins before the age of 18 years, causes the child to acquire skills at a slower rate than do his/her peers, continues indefinitely, and impairs the child s ability to function in society. Individual who has a diagnosis of mental retardation and/or a mental illness or drug/alcohol problem DOE Department of Education The department of government that oversees all educational aspects for school age children. In PA this department is often called PDE (PA department of education). They are responsible for ensuring that federal and state guidelines are carried out by both private and public schools. DPW Department of Welfare Is the state agency in charge of promoting, improving, and sustaining the quality of family life. This includes child development; children, youth and families; Autism York

14 developmental programs; income maintenance; medical assistance; mental health and substance abuse services. EI Early Intervention Refers to specialized services and supports designed to help families with children birth to age three who have developmental disabilities. Early Intervention provides information to families about how children develop, early childhood education, and interventions designed to help children learn and develop. Services are provided at no cost to families. EITA EPSDT Early Intervention Technical Assistance Early Periodic Screening, Diagnosis and Treatment A system that is part of the Pennsylvania Training and Technical Assistance Network, supports Early Intervention programs through staff professional development and family informational services. This is the child health component of Medicaid. It s required in every state and is designed to improve the health of low-income children, by financing appropriate and necessary pediatric services. It is designed to identify problems early, starting at birth, checking children s health at periodic/age-appropriate intervals, do physical, mental, developmental, dental, hearing, vision, and other screening tests to detect potential problems, performing diagnostic tests to follow up when a risk is identified, and treating the problems found. ER FAPE Evaluation Report Free Appropriate Public Education The Evaluation Report (ER) is used for Initial Referrals to special education services in a school setting. The ER is used to determine if the child has a disability and if the child needs specially designed instruction in a school setting. A separate psychological evaluation may also be conducted by outside agencies for wraparound services and other services for children or adults with disabilities. A reevaluation report (RR) must be conducted on a regular basis to ensure continued need for Special Education services. Is a federal mandate that all children with disabilities must receive appropriate educational programs, tailored to their unique needs, from which they receive educational benefit at no cost to families. FBA Functional Behavioral Assessment An Assessment conducted to determine the function of a behavior. After the function has been determined appropriate interventions will be based upon the assessment. Autism York

15 This is a vital part of any behavior intervention or treatment plan. FERPA HCMU HIPAA Family Educational Rights and Privacy Act HealthChoices Management Unit Health Insurance Portability Accountability Act A Federal law that protects the privacy of student education records. The law applies to all schools that receive funds under an applicable program of the U.S. Department of Education. Pennsylvania s managed care program for Medical Assistance (MA). The goals of the HCMU include providing access to the health care services for MA recipients and to improve the quality of care available to MA recipients. The York/Adams Health Choices Unit operate under the behavioral health component and work to ensure a high quality of care and access to Mental Health and Substance Abuse Services. This law helps to protect the confidentiality of medical records and services. This requires that family members consent to any sharing of treatment records and history, including wraparound services. Files must be kept in a secure confidential location in compliance with HIPAA regulations. ICM Intensive Case Management Services for individuals who require intensive ongoing support to live successfully in the community. Or those who will not or have not successfully used other mental health services and programs or repeatedly use emergency rooms or impatient services for crisis resolution and are seriously and emotionally disturbed children and youth. IDEA Individuals with Disabilities Education Act A law enacted in 1975 that guarantees a public education for all children with special needs. The state must provide an educational program that meets each child's strengths and needs. IEE Independent Educational Evaluation An independent educational evaluation is an evaluation of a child that is done by a person who does not work for the child's school district, public charter school, or intermediate unit (IU). This may be done by a private psychologist/psychiatrist, wraparound agency or other healthcare/social services provider IEP Individualized Education Plan Educational plan developed by teachers, therapists and parents to meet the individual needs of a child with a disability. All goals should be made uniquely for each particular child s strengths and needs. Data must be taken on each goal to monitor Autism York

16 the student s progress. IFSP Individualized family Service Plan Plan developed by therapists and parents for services from birth to three. IQ IU Intelligence Quotient Intermediate Unit A number meant to measure intelligence. Once the standard measure of human mental capacity; now there is some controversy as to whether this score is an accurate or fair depiction of intelligence. Nonetheless, it is still a widely used measurement utilized in the public school and other government systems in order to assist with determining eligibility for various services. A regional educational agency that provides services to local educational agencies including curriculum, special education, technology and information services, human resources, instruction, and professional development. LEA Local Education Agency A school district, charter school, or other educational entity responsible for providing free appropriate public education in accordance with Pennsylvania Department of Education statutes, regulations, and policies with or without support from other agencies. LICC Local Interagency Coordinating Council An organization consisting of parents and professionals to implement and plan E.I. services in the community. LIU Lincoln Intermediate Unit #12 LRE LSS Least Restrictive Environment Life Skills Support The Lincoln Intermediate Unit #12 (LIU) is located in New Oxford, Pennsylvania. This Intermediate Unit provides educational services to York, Franklin, and Adams counties. This requires that a student with disabilities be educated with non-disabled peers to the maximum extent appropriate. The least restrictive environment must be considered when making any placement decisions in an educational program. The emphasis of the Life Skills curriculum is placed upon functional/survival/application of skills mastered so that students will become more prepared to function as independently as possible when they transition from school to adulthood. MA Medical Assistance/Access Assures access to quality healthcare to Pennsylvanians eligible for services. Sometimes referred to as Medicaid, it provides payment for health care services on Autism York

17 MD MDE Multiple Disabilities Multidisciplinary Evaluation behalf of children with limited income and children with disabilities. A child s eligibility can be determined two ways: 1-Parent s income 2-Certain health diagnosis (such as an Autism Spectrum Disorder) automatically qualifies a child regardless of parents income. Medical Access is required for many social services that do not take private insurance or private pay-such as wraparound services. Students with more than one disability, the result of which is severe impairment requiring services primarily in the areas of academic, functional or vocational skills necessary for independent living The report created by the Multidisciplinary team, often consisting of occupational therapy, speech therapy, cognitive testing. MDT Multidisciplinary Team Parents and professionals that evaluate children to determine eligibility for E.I. services. MH MH/MR MT NOREP Mental Health York/Adams Mental Health/Mental Retardation Mobile Therapist Notice of Recommended Educational Placement A person s overall emotional and psychological condition. Often refers to a person s emotional and cognitive capabilities, ability to functional in society, and meet the demands of everyday life. The county program, which provides E.I. services for children from birth up until the age of three. Also provides case management and coordination for children and adults with a Mental Health, Mental Retardation or Autism diagnosis. Primary responsibilities include assessment of family needs, development of comprehensive service plan, referral of families to service providers, monitoring the delivery of services, and conducting reviews for changing needs and issues. The MT is a licensed mental health professional or an individual with a graduate mental health degree in a wraparound agency. They provide intensive therapeutic services to a child/adolescent and family in the home and community setting. Services include child/adolescent-centered, family focused, individual, and family psycho-therapy. If there is no BSC on the case, the TSS will call the MT when they have clinical question. Notice of Recommended Educational Placement is a form filled out by the school district or other educational entity which describes a child recommended placement. Autism York

18 It reviews the learner s needs and strengths, describes other settings that were considered, and explains why other options were rejected. It s important to note that NOREP should be developed in cooperation with other members of the IEP team including parents, teachers, administrators, and if possible, students. It should not be completed without the input and knowledge of the parents OCR Office for Civil Rights Ensures equal access to education and to promote educational excellence throughout the nation through vigorous enforcement of civil rights. ODR OMH Office for Dispute Resolution Office of Mental Health Coordinates and manages Pennsylvania s special education mediation and due process systems. ODR provides help concerning procedural safeguards to parents, advocates, school districts, charter schools, intermediate units, and approved private schools. State program which provides a variety of mental health services for children through older adults with a mental health disorder. Provides assistance associated with autism services, child care and early learning, food stamps, health care/medical assistance, and mental health/substance abuse services. Some participants may also be eligible for services under the Office of mental Retardation due to a dual diagnosis. OMR Office of Mental retardation This is the branch of the state system that provides assistance for children and adults with a diagnosis of Mental Retardation. This office can help parents find social skills program, financial assistance, medical services and many other services. The participants may also qualify for assistance form the office of Mental Health if they are also diagnosed with a mental Health condition. OSEP OT Office of Special Education Programs Occupational Therapist Within the U.S. Dept. of Education, OSEP is dedicated to improving results for infants, toddlers, children, and youths with disabilities from birth through age 21 by providing oversight, leadership, and financial support to assist states and local districts. OSEP administers the Individuals with Disabilities Education Act (IDEA) to ensure that children with disabilities receive the appropriate supports and educational services. A professional that provides therapy based on engagement in meaningful activities of daily life (e.g., self-care skills, education, work, social interaction) especially to enable or encourage participation in such activities despite impairments or limitations Autism York

19 PaTTAN PBSP Pennsylvania Training and Technical Assistance Network Positive Behavior Support Plan in physical or mental functioning. An initiative of the Pennsylvania Dept. of Education s Bureau of Special Education, working in partnership with families and local educational agencies to support programs and services to improve student learning and achievement. Provides training to parents and educators on a variety of educational topics. Refers to a comprehensive set of strategies meant to redesign environments in such a way that problem behaviors are prevented or inconsequential, and to teach students new skills, making problem behaviors unnecessary. PDD PDE Pervasive Developmental Disorders Pennsylvania Department of Education Refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The pervasive developmental disorders are: Autism, Rett Syndrome, Childhood disintegrative disorder, Asperger Syndrome, and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) The branch of government that oversees all public and private education in the state of PA PECS PEN Picture Exchange Communication System A behavioral approach that facilitators may employ to teach self-initiated requesting aided the use of symbols or pictures. Parent Education Network One of two Parent Training and Information Centers (PTIs) in Pennsylvania funded by the U.S. Department of Education. PEN is a coalition of parents of students representing a range of disabilities and ages. Its parent training projects promote mutual respect between parents and professionals for the knowledge, skills, and abilities each contributes to delivering education and other services to students and adults with disabilities. PEN s services are available to parents and professionals in the eastern region of PA. PT Physical Therapist A professional who improves a child s physical abilities through activities that strengthen muscular control and motor coordination. RTF Residential Treatment Facility Autism York Facilities that provide full time therapeutic care for children and adolescents with severe emotional or behavioral issues that have not been addressed through a least restrictive environment. Includes both facilities that are accredited by Joint Commission on the Accreditation of Health Care Facilities (JCAHO) and those that

20 are licensed and supervised by the Department of Public Welfare but are not JCAHOaccredited. SC Service Coordinator The individual responsible for coordinating E.I. services in the birth to three program, and for coordinating services in the three to five program. SDI Specially Designed Instruction Interventions and modifications made to a child's educational program that are designed to help them to reach their maximum potential in the school setting. These may be added to a child's Individualized Educational Program (IEP) and should be specifically tailored to each child's specific strengths and needed. SI SSB Sensory Integration Self Stimulation Behavior The ability to take in information through the senses of touch, movement, smell, taste, vision and hearing. Also to combine the resulting perceptions with prior information, memories, and knowledge already stored in the brain, in order to derive meaning from processing the stimuli. The mid-brain and brainstem regions of the central nervous system are early centers in the processing pathway for sensory integration. These brain regions are involved in processes including coordination, attention, arousal, and autonomic function. After sensory information passes through these centers, it is then routed to brain regions responsible for emotions, memory, and higher level cognitive functions. These are repetitive body movements or behaviors such as hand flapping, wiggling fingers and rocking. Repetitive vocalizations may also be considered self stimulation behaviors. These behaviors have often been called "stereotypical behaviors" or "stims". SSI Supplemental Security Income Financial assistance available to children and adults with disabilities. ST SLP Speech Therapy Speech Language Pathologist Treatment for individuals with speech and/or language disorders. Speech-Language Pathologists evaluate individuals with speech/language disorders and provide treatment during speech therapy sessions. Professionals that evaluate, diagnose, and treat speech, language, cognitivecommunication and swallowing disorders. They work with individuals of all ages, from infants to the elderly. They often work as part of a team, which may include teachers, physicians, audiologists, psychologists, social workers, rehabilitation Autism York

21 counselors and others. (ASHA) TA Teacher's Assistant An individual who assists with planning and implementing individual and group lessons for students assigned by the teacher and/or supervisor. TSS WA Therapeutic Support Staff Wrap Around Services The TSS is an individual who posses a bacheleor s degree working in a wrap around agency. The TSS primary role is implementation of the clinical treatment plan. The basic function of the TSS is to carry out the interventions and activities as stated in the treatment plan. The TSS provides interventions to a child/adolescent within the home, school, or community setting. The TSS documents the interventions provided and response of the child/adolescent on a Daily Shift Report and is also responsible for completing other data collections forms. It is not the role of the TSS to make clinical decisions regarding treatment. Often called Behavioral Health Rehabilitative Services (BHRS). Treatment and therapeutic interventions prescribed by psychologist or psychiatrist provide on an individual basis in the person s own environment such as home, school, and community. These services include Therapeutic Support Staff (TSS), Behavioral Consultants (BSC), Mobile Therapy (MT), and specialized services, as approved. Refers to the process of developing services for children and adolescents in the least restrictive setting. Children/adolescents within the BHRS system are referred for services because they are experiencing behavioral and/or emotional difficulties in their home, school and/or community. Autism York

22 Types of Therapies for Children with ASD There is an almost endless list of options when it comes to treatment and therapies for children and adults living with Autism. To list them all here may lead to "information overload". To prevent this we have provided basic information on some of the most popular therapies used in our area. To help you conduct your own research in gaining more in depth information, phone numbers or websites have been listed. We strongly encourage each parent to research different therapies and treatments that may meet their child's unique strengths and needs. Remember that there is not one therapy that works for all children. Many families find that the best program for their child is a combination of 2 or more programs. Applied Behavioral Analysis (ABA) Applied Behavior Analysis (ABA) is the systematic and scientific study of behavior. Behaviors are defined in measurable and observable terms. This may include both behaviors of concern (such as screaming and hitting) and also functional behaviors of language, social skills and self help skills. As this is an applied science, therapy occurs in a natural setting (such as home, school and community) rather than a scientific laboratory type setting. ABA therapists strive to develop skills that will enable an individual to function as independently as possible and to fully participate in the life of their family and community. The analysis term refers to the fact that data is taken during all steps of treatment to ensure that progress is being made. A baseline of behaviors and skills should be taken before starting any intervention. Data is used to make revisions as needed to the program. A functional behavior assessment is conducted on behaviors of concern (such as physical aggression and self injury) to determine the function of the behavior. After the function has been determined, the team can research the interventions that will be most appropriate. Data is an extremely important part of ABA. The terms ABA and discreet trial are often used interchangeably, however this is incorrect. Discreet trial is a type of ABA therapy, however it is NOT the only one. There are many other therapies that are conducted under the umbrella of ABA. Both The Competent Learner Model and Verbal Behavior work under the principals of ABA. Many therapies can use the principals of ABA if they are supported by data, revised as needed based on data, and the changes being made to the behaviors are functional for the child in their environment. For more information please visit Verbal Behavior (VB) Also known as Applied Verbal Behavior (AVB). As stated above, this is a program under the guidelines of applied behavior analysis. Based on Skinner s analysis of verbal behavior, this approach states that language is a behavior that is under control of the same conditions as other behaviors. This approach focuses on teaching language through structured techniques and exercises. Data is taken to measure a child s progress and determine the skills that need to be taught. An assessment is used to determine a baseline of the child s language skills and the skills that need to be taught next. Two of the most common assessments are the: Assessment of Basic Language and Learning Skills (ABLLS) or the Autism York