When a child is diagnosed with an autism spectrum disorder (ASD), parents often experience a range of emotions—from disbelief and confusion, to sadness and fear, to feeling overwhelmed and even feeling relieved that they finally know what’s going on. This is absolutely normal. All parents ask, “What do I do next?” Although there is no simple answer to that question, it might be helpful for you to know that there are many promising advances in the treatment of children with ASDs, and that there are many resources to help you. Although no one can predict the future for any child—with or without a diagnosis of autism—the future is much brighter for children diagnosed today than they were even a decade ago. The PIP was designed to help parents navigate the first years after diagnosis from understanding the diagnosis to starting school and getting insurance coverage.
With promising scientific research underway on autism, and many resources readily available to families of younger children, there is a decided lack of clear information and guidance available on the transition to adult living. This manual is intended to fill the gap by providing concise insight on the key considerations and timeline for this part of the journey.
The Autism Consortium Family Support Network developed an innovative new web-based resource for parents and professionals entitled “Quick Links: A Guide to MA Autism Resources.” This is a tool which utilizes easy to follow resource links that are divided into the categories of greatest common concern to families (e.g. education, treatment, at-home behaviors, community navigation, transition support). These links provide access to organizations, readings, databases, and online information related to the topic of inquiry. Quick Links are designed to be easy and “quick” for the user and can be modified and updated easily via their web-based application. Anticipated users are families, primary care pediatricians, social workers, and school personnel who work with children affected by autism, who often express the need for better resourcesQuick Links
Massachusetts is one of many states with a law requiring health insurers to cover specified services for the diagnosis and treatment of autism spectrum disorders. The law is called ARICA (An Act Relative to Insurance Coverage for Autism) and went into effect on January 1, 2011 (or on the day in 2011 that your insurance plan renewed.)
Although ARICA calls for insurance providers to cover medically necessary autism treatment, not all Massachusetts insurance plans are required to comply with it. Plans that are not subject to ARICA include MassHealth and “self-insured” (also known as ERISA) plans. However, it is sometimes possible for individuals who have coverage under these plans to obtain ARICA-mandated benefits. If you are covered by a plan that isn’t subject to ARICA, please refer to the specific information in the following Frequently Asked Questions (FAQs), prepared by the Autism Insurance Resource Center, a division of New England INDEX/UMass Medical School Shriver Center.
One of the most helpful resources for families with a member with an ASD is your local Autism Support Center. There are currently seven support centers located in Massachusetts that receive funding from the Autism Division at the Department of Development Services. The centers offer information and referral information, parent trainings, workshops and some specialized programs for children, teens and young adults. The centers are often staffed by parents who have a child with ASD, and are there to explain what services and supports your child and family can benefit from. Call and introduce yourself and your child, ask to be put on their mailing lists, and tell them you would like to do an “intake” for services. Many of the centers also offer support groups and information sessions that can be very helpful to families. More information can be found at http://www.mass.gov/eohhs/gov/departments/dds/
Supplemental Security Income (SSI) Disabilty (for children under age 18)- Your child may be eligible to receive monetary assistance if the following criteria established through the Social Security Administration is made and if the family has limited income and resources: The child must have a physical or mental condition(s) that very seriously limits his or her activities and the condition(s) must have lasted, or be expected to last, at least one year or result in death. For further information, or to apply for SSI, call 800.772.1213. More information can be found at http://www.socialsecurity.gov/pgm/ssi.htm
MassHealth is the name of the Massachusetts Medicaid program. If you are over the income level for MassHealth Standard and have private insurance, your child who has a disability (such as an autism spectrum disorder) may be eligible for MassHealth/CommonHealth as a secondary insurance. Child disability determinations are made by the federal criteria standards. Please visit http://www.mass.gov/eohhs/gov/departments/masshealth/ for more information.
MassHealth Standard: If your family income is less than 150 percent of the federal poverty level, your child may be eligible for MassHealth Standard. Even if you have private health insurance, your child can also have MassHealth Standard at no additional cost to your family. MassHealth Standard will pay for deductibles, co-payments and other additional costs not covered by your private insurer, however your child must be seen by a provider who takes MassHealth.
MassHealth/CommonHealth: If your family income is greater than 150 percent of the federal poverty level and you have a child with a disability (as defined by the SSA federal criteria listed above) your family may choose to buy into the MassHealth system, even if you have private health insurance. This type of MassHealth is called MassHealth/CommonHealth. CommonHealth is a way to supplement private health insurance coverage for a child with a disability. You pay a premium based on your family income. The premium may be eliminated if you are eligible for Premium Assistance, which is not based on income. We encourage all families to first go through the CommonHealth application process for their child, and then apply for Premium Assistance to determine whether CommonHealth is a financially viable option for the family.
MassHealth offers a program called the Children’s Behavioral Health Initiative (CBHI) for children and youth under age 21 with severe emotional, behavioral, or mental health issues who have any type of MassHealth except MassHealth Limited. Children with an Autism diagnosis will be able to access all CBHI services (except the ICC) regardless of the presence of serious emotional disturbance determination.
This handout includes general tips for securing your home, information about body safety, “Come to Me” game instructions, and descriptions of Lo Jack SafetyNet Program and Med Alert Bracelet programs.
The North Star Personal Alert Program is a free and voluntary program for parents, guardians or care takers of children and individuals that may have a tendency to wander or area flight risk from a specific location (home, school, nursing home etc.).The program is designed to help individuals that would have a difficult time communicating with First Responders and in some cases do not understand the potential danger he/she may be in. This program is run by the Boston Police Department. More information can be found at http://www.bpdnews.com/resources/north-star/
Med-Alert bracelets are pieces of jewelry (bracelet, necklace, ankle bracelet, or shoe tag) that are worn to alert others about a child’s developmental and/or medical conditions. This can be helpful for all children, especially those with limited communication skills. A year of enrollment, including a bracelet, costs $30. Scholarships are available. Further information regarding the MedAlert bracelets can be found at http://www.medicalert.org/products/kids/package/medicalert-kid-smart
The SafetyNet program includes a LoJack bracelet, which can be worn around the ankle or wrist, and is a tracking device that runs on radio frequency. It should be worn at all times and is ideal for children who are at risk of wandering. Enrollment in the program costs $99 and the monthly bracelet fee is $30. Scholarships may be available. Further information about the Lo Jack SafetyNet program can be found at https://www.safetynetbylojack.com/
Families who have a child with autism may apply for a Handicapped Placard to use in their car. This can help ensure the safety of children who have trouble in parking lots (bolting, etc). A doctor must fill in part of the application, and the family fills in the rest and then takes to Registry of Motor Vehicles (RMV).
These are cards that can be printed, cut out and easily accessed as a tool that can be distributed within the community when a family is faced with questions/comments regarding the child’s diagnosis.
Visual supports can be very helpful in managing challenging behavior or supporting communication. Visuals should be simple, concrete and tailored to meet the needs of the child and family, and focused on the behavior or area of communication that they wish to support. Below are short descriptions of some of the visuals that can be accessed and modified for family’s use.
Morning and Evening Routine Boards: a very simple way to turn simple visuals into a routine/schedule board which children can manipulate independently when each task is completed. Assembly instructions can be found hereDocument: MorningRoutine.doc, EveningRoutine.pdf
Bathroom Routines: Multilingual visuals that show visually the steps taken when using the toilet or brushing teeth.Document: BrushTeeth.pdf, ToiletRoutine.pdf , ToiletRoutine_Spanish.pdf, ShowerRoutine.pdf
When I’m Upset Card: This can be used to support children in making behavior choices to calm themselves down when upset. The visuals can be tailored to meet the needs of the child, and assembly instructions are included.Document: WhenImUpsetCard.doc
I’m Working For Card: This can be used to support children in identifying and tracking behaviors or task completion for a chosen reward or prize. Assembly instructions are included.Document: ImWorkingForCard
Social stories are written and tailored to children’s needs by using accurate social information in simple and concrete terms, with the goal being that a child have a better understanding of an event or situation. Social stories are often strengths based and are written in a reassuring manner to lead to the child’s more positive responses to often anxiety provoking situations. General social stories are available for use and can be tailored to meet the needs of individual children.
The Assistive Technology Regional Center, located in Boston, allows individuals with various disabilities, families, and professionals, make informed decisions about identifying and accessing assistive technology to support areas of functioning, such as communication or motor skills. Consultations are available by appointment by calling 617-226-2634 . The Easter Seals Assistive Technology program also offers long-term and short-term technology loan programs where families may access things like iPads or other communication devices. Each program is based on family’s financial need and a waitlist may apply.
Many families use iPads or Tablets to access applications that can support their child not only in specific areas of functioning such as behavior management or social cues, but in general development and learning. Our extensive App list organizes the applications into various categories including speech and behavioral intervention, and includes pricing and where the applications can be accessed.
The Autism Consortium catalyzes rapid advances in understanding of autism by fostering collaboration among families, researchers, clinicians, and donors. Their mission is to improve the care of children and families affected by autism and other neurological disorders. The website offers countless resources, including a database with hundreds of resources and service providers for families and clinicians in the New England area.http://www.autismconsortium.org
Autism Speaks is the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Their website also includes countless resources for parents and educators of autistic children.http://www.autismspeaks.org
Through the Autism Legal Helpline, callers receive free technical assistance and answers to their questions about educational rights of children with autism. 617-357-8431 ext. 224http://www.massadvocates.org/autism-center.php
The Center for Disease Control, or CDC, is committed to continuing to provide essential data on ASDs, search for risk factors and causes, and develop resources that help identify children with ASDs as early as possible. This is an excellent source for learning more about autism and treatments.http://www.cdc.gov/ncbddd/autism/index.html
The Concord SPEDPAC is one organization of several across the state, protected by the special education laws in Massachusetts, and work with their local schools to advise, advocate for and serve as a resource for parents of children with special needs ages 3-22. This website has very important information for family’s navigating the educational system, including the IEP process and professional resources. The website lists all the towns in Massachusetts with existing parent advisory councils and accompanying contact information.http://www.concordspedpac.org
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. They believe that individual differences in people are a natural part of life, and that disabilities provide children and adults with unique perspectives, insights and abilities which contribute to the overall well-being of society. The Federation promotes the active and informed participation of parents of children with disabilities in shaping, implementing, and evaluating public policy that affects them. Most Federation staff members are parents or family members of children with disabilities and people with disabilities. They sponsor several projects and programs that support and empower individuals and families such as the Parent Training and Information Center, and Massachusetts Family Ties.http://www.fcsn.org
Massachusetts Act Early is a statewide campaign that aims to educate parents and professionals about healthy childhood development, early warning signs of autism and other developmental disorders, the importance of routine developmental screening, and timely early intervention whenever there is a concern. There are useful resources on the Act Early website that will help to inform and promote the healthy development of all children.http://www.maactearly.org
This center is staffed by parents who provide free, confidential assistance to families raising children with special healthcare needs become more knowledgeable about healthcare services and supports as well as receive assistance in obtaining those benefits. 800-331-0688 x210http://www.massfamilyvoices.org
This website has Massachusetts workshops and resources for children with special needs, along with pertinent news. The workshops and events are clearly and conveniently divided up to reflect the varying needs of individuals and families.http://www.spedchildmass.com
TILL (Towards Independent Living and Learning, Inc.) autism support center is a central reference point for community resources, support and information regarding Autism. TILL staff can assist in connecting families with local support groups, workshops, and trainings in addition to providing support and guidance to families in navigating and accessing a variety of resources.http://www.tillinc.org/autism_support.html