ACCESS card: The name of the Medical Assistance ID card indicating that your child is eligible for Medical Assistance. To apply for Medical Assistance, see How to Apply for Medical Assistance (MA) for Your Child with Autism in Pennsylvania (Age 21 or under).
ADDM ( Pennsylvania Autism and Developmental Disabilities Monitoring): The Center for Disease Control and Prevention (CDC) is now funding researchers in many states, including Pennsylvania, to enhance public health programs to monitor the prevalence of autism spectrum disorders. The goal of the ADDM Network is to provide comparable, population-based estimates of the prevalence rates of autism and related disorders in different sites over time. For more information please see: http://www.cdc.gov/autism.
Age of Majority: Once a child with autism or ASD turns 14, he or she may legally refuse treatment, including wraparound, unless parents have received a court order to make medical decisions on behalf of their son or daughter. For details, visit Child Behavioral Health Medical Necessity Criteria - EPSDT: Appendix T Part B2 - Child BH Medical Necessity Criteria - EPSDT.
Antipsychotics: Antispychotic medications act against symptoms of anti-social or self-destructive behavior. These medications cannot 'cure,' but they may lessen the severity of some symptoms. A fuller discussion of antipsychotic medications can be found at the National Institute of Mental Health.
Asperger Syndrome, Asperger Disorder or Asperger's: one of the conditions known as Pervasive Developmental Disorders. According to the National Institute of Neurological Disorders and Strokes, Asperger's is defined as a 'developmental disorder that is characterized by limited interests or an unusual preoccupation with a particular subject to the exclusion of other activities." Asperger's is also characterized by average or above average IQ, and verbal ability. Other symptoms include:
Repetitive routines or rituals.
Strange speech and language, such as speaking in an overly formal manner or in a monotone or taking figures of speech literally.
Socially and emotionally inappropriate behavior and the inability to interact successfully with peers.
Problems with non-verbal communication, including the restricted use of gestures, limited or inappropriate facial expressions or a peculiar, stiff gaze.
Clumsy and uncoordinated motor movements.
Autism: Autism is defined differently in federal education law than in federal disability law.
Under the federal education law, the Individuals with Disabilities Education Act (IDEA) §300.8 (c) (1) (i), autism is defined as a 'developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences."
Federal disability law recognizes the DSM-IV definition of autism, which focuses on behavior for diagnosis by a qualified medical professional. This definition is considered the 'medical' diagnosis.
The difference between the two definitions can be confusing. All behavioral health services include an evaluation to determine needs, just like public education. However, to be eligible for Medical Assistance your child must have (among other things) a medical diagnosis within the Autism Spectrum Disorder.
School districts, however, are requested to evaluate any child suspected of having a disability under the federal education law, IDEA. They are not required to use the DSM-IV medical definition for identifying child with autism (and some educational professionals may not be qualified to make this diagnosis). School districts must use the language of special education law to find a child eligible for special education services.
Autistic: A person with autism. Most families tend to prefer the phrase, "a person with autism," which focus on the person rather than the label.
Autism Spectrum Disorder or ASD: The Centers for Disease Control and Prevention (CDC) defines ASD as 'a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests. Many people with ASDs also have unusual ways of learning, paying attention, or reacting to different sensations. The thinking and learning abilities of people with ASDs can vary - from gifted to severely challenged. ASD begins before the age of 3 and lasts throughout a person's life. It occurs in all racial, ethnic, and socioeconomic groups and is four times more likely to occur in boys than girls." ASD includes the diagnoses of autistic disorder, PDD-NOS, Asperger Syndrome, Rett Syndrome and Childhood Disintegrative Disorder.
Behavior Treatment Plan (or Behavior Care Plan): A written plan describing goals and objectives and behavioral treatments proposed to address the client's behavioral health issues. This includes what responsibilities the client, family and wraparound providers have to meet the goals to demonstrate clinical progress. The treatment plan is developed by wraparound staff with input from parents. It is then reviewed and agreed to in an Interagency Service Planning Team (ISPT) meeting, which can include county MH/MR staff, BH-MCO staff and the provider (but this team may vary by county). The ISPT must include school staff if the child is in a public school.
Behavioral Health Managed Care Organization (BH-MCO or "Bimco"): An organization contracted to manage countrywide behavioral health services. BH-MCO's are "indirect providers, meaning that they manage the "direct" providers: wraparound agencies that actually provide service to your family.
Behavioral Health Services: These services are defined as the staff, type of support and service intensity necessary to address a person's behavioral health needs. Wraparound agencies directly provide these services to clients in their home and/or school. Behavioral health does not include physical services such as occupational therapy, physical therapy or speech therapy. However, behavioral goals may overlap physical therapy goals. For example, if the desired outcome of a behavioral goal is to have a child "verbally refuse" instead of biting, then speech is how this goal will be met (and measured). More information at Behavioral Health Choices.
Behavioral Specialist Consultant (BSC): The professional who manages and coordinates services by the wraparound agency with a family. Though not required, BSC's may have experience with people with autism, have autism-specified training, and/or be Board Certified Behavior Analysts.
Board Certified Behavior Analyst (BCBA): A professional who has passed a standardized curriculum and tests indicating they have certain competencies in the field of Applied Behavior Analysis. For details about Pennsylvania's program, visit www.bacb.com.
CARS (Childhood Autism Rating Scale): According to WPS Publishing, "This 15-item behavior rating scale allows clinicians and educators to recognize and classify autistic children...on a scale from mild to severe autism." It does not offer recommendations for treatment or intervention.
Case Management: Support coordination of long-term services for persons with autism. A professional provides links to other professionals and referrals to appropriate services, and helps the family gain access to necessary supports. Case managers monitor established services, advocate and respond to crises.
CDC (Centers for Disease Control and Prevention): The Centers for Disease Control and Prevention (CDC), a part of the U.S. Department of Health and Human Services, is the primary Federal Agency for conducting and supporting public health activities in the United States. CDC's focus is not only on scientific excellence but also on the essential spirit that is CDC - to protect the health of all people. CDC keeps humanity at the forefront of its mission to ensure health protection through promotion, prevention, and preparedness.
Children's Health Insurance Program (CHIP): A program designed to provide insurance coverage to children whose families earn too much to qualify for Medical Assistance, do not have insurance offered through an employer and cannot afford to purchase private insurance.
Companion Attendant: A trained adult who assists a higher functioning person during college classes (taking notes, test taking, negotiating with instructor), and/or learning these skills.
COMPASS (COMmonwealth of Pennsylvania Application for Social Services): COMPASS is Pennsylvania's online application for social-service programs that allows an individual to apply for social programs from a computer with Internet access at any time. It serves as a single access point for a variety of programs, including health care coverage, food stamps, cash assistance benefits, long term care and home energy assistance.
Consent to Treatment: According to Medical Assistance regulations, a child must consent to treatment after he or she turns 14. Many people with autism are incapable of giving informed consent; therefore, some parents must declare their child incompetent in court, or get power of attorney (POA).
Day Habilitation: Learning adaptive behavior skills to participate in ordinary community activities such as grocery shopping, banking, clothes shopping, taking a walk, going to the library or religious services.
Developmental Delay: This term is used to describe children (birth to 24 months) who may not be meeting developmental milestones related to their speech, language, physical, social and other skills typical for their age. It is also a specific legal term to describe children between the ages of three and five who are found eligible by the public education system to be eligible for early intervention services. This term has meaning and significance in PA education law. For more information on development milestones, visit the Mayo Clinic or First Signs.
DSM-IV: The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR, American Psychiatric Association, 2000). DSM uses the absence or delay of anticipated behaviors that are developmental milestones to clinically diagnose a person.
DPW: Pennsylvania Department of Public Welfare, See also Office of Medical Assistance Programs (OMAP) or Office of Mental Health and Substance Abuse Services (OMHSAS).
EPSDT or Early and Periodic Screening, Diagnosis and Treatment: The federal Medical Assistance program that funds medical and behavioral health services for children from birth to age 21. The keys to EPSDT are identifying problems early, starting at birth; checking children's health at periodic, age-appropriate intervals; doing 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.
Early Intervention (EI): Public services designed to address early learning and physical issues of children from birth to age five, provided at no cost to eligible children and their families. Direct services are provided through county providers, and local Intermediate Units. Administered through the Office of Child Development and Early Learning.
FAPE: Popular acronym for Free Appropriate Public Education.
FERPA (Family Educational Rights and Privacy Act): The federal law requiring that your child's special education status and information remain confidential. See also HIPAA below.
HIPAA(Health Insurance Portability and Accountability Act): The federal law that protects your confidential personally identifiable medical information from ordinary disclosure, and requires confidential personally identifiable medical information from ordinary disclosures, and requires health care providers to have in place -- and publicly distribute -- a policy for protecting your personal information.
Health Choices: Pennsylvania's mandatory Medicaid managed care program. The purpose of the program is to provide medical, behavioral, and substance abuse services to Medical Assistance recipients.
IDEA (Individuals with Disabilities Education Act): Reauthorized in 2004, this law forms the basis for a disabled student's right to a free, appropriate, public education, or FAPE.
IEP (Individual Education Plan): This is a signed agreement of an IEP team outlining the what, where, when, and often how a special education student will be provided a meaningful education specific to their needs. The IEP team can consist of the student (if appropriate), parents, regular and/or special education teachers, a school or school system representative, Therapeutic Support Staff (TSS) and Behavioral Specialist Consultant (BSC). For more information, visit the Pennsylvania Department of Education.
Loophole: The "loophole" eliminates family income as a factor in determining if a child is eligible for Medical Assistance for persons with Autism Spectrum Disorder.
Managed Care Organization (MCO): Nearly all of Pennsylvania's Medical Assistance Services are provided through Managed Care Organizations (MCO).
MA: Medical Assistance, also known as ACCESS and Medicaid.
Medicaid: The same as Medical Assistance.
Medical Necessity: This represents a group of criteria used to find a person eligible for services. A person may have a condition, but must meet medical necessity criteria to be eligible for services, for instance wrap-around services under Medical Assistance.
MH/MR (Mental Health/Mental Retardation): The Mental Health and Mental Retardation Act of 1966 requires your county MH/MR office to provide community mental health services, including: short-term inpatient treatment, partial hospitalization, outpatient care, emergency services, specialized rehabilitation training, vocational rehabilitation, and residential arrangements.
Need: "Need" for services must be determined in both medical and educational law. If your child has autism, evaluations will confirm the diagnosis and identify any areas of need, whether they are educational, medical, or behavioral. Parent input is mandatory.
OBRA Waiver: A waiver is a federal funding stream that allows states to be exempt from (or "waive") certain requirements. The OBRA waiver is a funding stream regulated by federal law, generally designed for persons with developmental disabilities that substantially limit major life functions.
ODP (Office of Developmental Programs): Creating the new Office of Developmental Programs within DPW in 2007 was one of the core recommendations of the Pennsylvania Autism Task Force. In its initial stages, Office of Developmental Programs will house a Bureau of Mental Retardation Services and a Bureau for Autism Services, as well as necessary support bureaus.
OMAP (Office of Medical Assistance Programs): A program office located within the Pennsylvania Department of Public Welfare. For the purposes of People with autism, OMAP administers the joint state/federal Medical Assistance program that purchases health care for over 10,000 "loophole" children.
OMHSAS (Office of Mental Health and Substance Abuse Services): A program office located within the Pennsylvania Department of Public Welfare responsible for behavioral health services ranging from community to hospital programs with emphasis on helping children, adolescents and adults to remain in the communities.
OVR (Office of Vocational Rehabilitation): Located within the Pennsylvania Department of Labor & Industry. This office administers job/vocational training and coaching to persons with disabilities based on a model of temporary need.
PADDSP (Pennsylvania Autism and Developmental Disabilities Surveillance Program): PADDSP is part of the ADDM Network. It is a multiple-source, multi-year project to determine and monitor the number of children in Philadelphia with an autism spectrum disorder (ASD). This public health program will help establish an accurate count of the number of Philadelphia children with autism in selected years. This project was recently completed for 2002 and is ongoing for children in 2006. Prevalence among children in 2008 will begin upon completion of the previous year. The investigators are members of the University of Pennsylvania School of Nursing and the Children's Hospital of Philadelphia.
PCP (Primary Care Provider): A specific medical services provider (doctor) responsible for providing primary care services and locating, coordinating, and monitoring other medical care and rehabilitative services (in addition to behavioral health services) on behalf of a Medical Assistance recipient.
PDE: Pennsylvania Department of Education
Privacy: See also HIPAA (health records privacy) and FERPA (school records privacy).
Residential Habilitation: Learning behavior skills that may be ordinary household tasks or self-help. Self-help, also called personal care, refers to activities such as showering, shaving, toileting and dressing. Residential habilitation also includes learning to do household tasks, making meals and other activities you would do when you return home from work or other daytime activities.
Respite: Services provided to the family or caregiver of a person with autism so that they may have time to attend to sibling's or other family member's needs, to have time to go out to dinner, attend to personal appointments or simply relax. These may be in or out of home services.
Special Needs Trust: A legal financial entity established by parents of children with disabilities to provide for supplemental needs not covered by public assistance funds that cover basic needs. The fund is created because assets owned by a person with autism would prevent their eligibility for publicly funded services until the funds were gone. The trustee distributes funds from the trust to the person with autism for non-basic supplies. For more information, visit the Autism Society of America.
TSS (Therapeutic Support Staff): This person has a certain level of experience, education and training to support a person with autism one-on-one in settings found to require their support. This could include school, social functions and community.
Waiver: A waiver is a funding where the state is allowed to "waive" certain requirements, usually of a federal law or program. In Pennsylvania, two waivers are most likely to serve a person with autism; the Consolidated Waiver, and the OBRA Waiver.
Wraparound: Wraparound or "wrap" refers to behavioral health services, such as Therapeutic Support Staff (TSS) and Behavioral Specialist Consultant (BSC) support, that "wrap" around other supportive services. Wraparound may include trained workers who support and intervene on behalf of a client to implement the client's Behavioral Treatment Plan.
