Overview for Parents

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 Program Manager Family Support Network simple answer to that question, it might be helpful for you to know that there are many Shari King, 617-414-3666 [email protected] 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 Autism Resource Specialists without a diagnosis of autism—the future is much brighter for children diagnosed Boston Medical Center Developmental and Behavioral today than they were even a decade ago. Pediatrics Shari King, 617-414-3666 [email protected] Local and national sources of information and support for families with a child with an ASD are too numerous to count. Whatever else you might learn from the materials in Children’s Hospital Boston this packet, always remember this: You are not alone. There are many professionals Developmental Medicine Center working hard to find the causes—and new and more effective treatments and Lindsay Prichard, 617-355-6802 [email protected] resources—for families like yours.

Floating Hospital for Children Understanding the diagnosis of ASD is an important first step for parents. The ASDs at Tufts Medical Center Bernadette Murphy Bentley are described in detail in “What are PDDs and ASDs?” (on page 3) and include: 617-636-1305 * Autistic Disorder [email protected] * Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) Lurie Family Autism Center * Asperger Syndrome Mass General Hospital for Children LADDERS Program All ASDs are “pervasive developmental disorders,” meaning that several areas of Julie O'Brien, 781-860-1726 [email protected] development are affected. Although every child with an ASD is different, each has difficulties with communication and social interactions. They might also have University Massachusetts Medical School difficulty with nonverbal communication, such as eye contact, facial expressions, Kelly Hurley, 508-856-8781 and gestures (such as pointing). Play skills are often delayed and can be repetitive [email protected] and unusual. Although some children are good-natured and easygoing, others might have difficult behaviors and little tolerance for change or frustration. Because every child’s individual strengths and challenges vary, each child will need a different combination of programs and services to match his or her individual learning and social profile.

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Doctors and other health-care professionals use different labels and language to describe children with ASDs. Your child might be said to have one of the diagnoses You, the parent, listed above – or might be described as “autistic,” having autistic features, or being “on know your child’s the autism spectrum.” It is referred to as a spectrum because autism affects the skills and abilities of each child differently. strengths,

After your child has been evaluated by a doctor, psychologist, or other professional or challenges, and team of specialists, you will get an explanation of the diagnosis and a written report needs better than with recommendations for programs and treatments for home and school. You—the parent—know your child’s strengths, challenges, and needs better than anyone else. anyone else. You are the expert on your child, which makes you the most critical person on your child’s treatment team.

Use the resources in this packet—and others that your health care team will tell you about. Ask questions. Seek advice and assistance. Contact the autism support center in your area (see page 18). This is an agency especially created to help you and your family with the many questions you might have. The autism support center staff will help you get the information you need to make decisions about health care, education, social and leisure opportunities, community agencies, organizations and services, and funding sources. Many autism support center personnel are parents of children with autism themselves. They truly understand you. They have stood in your shoes and have learned valuable lessons that can save you time, effort, and worry. They want to help you and your child succeed in whatever you set out to do.

Supported by a grant from the Nancy Lurie Marks Family Foundation

If you are interested in finding out more about research opportunities for families affected by ASDs, please go to www.autismconsortium.org and/or contact the Autism Consortium at [email protected] or 866-518-0296.

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What are PDDs and ASDs?

The term PDD or Pervasive Developmental Disorder is used to describe certain problems in development. PDDs are called “spectrum” disorders because each child has symptoms that differ in intensity, ranging from mild to quite severe. All children with

PDD, however, have some degree of difficulty in the following areas:

 Social skills: Such as sharing emotions, understanding how people are feeling, expressing empathy, or having a conversation  Communication: Both spoken and unspoken, such as pointing, gesturing, and making eye contact  Behaviors or interests: Such as repeating words or actions, playing with things in an unusual way (spinning objects, lining up toys), or insisting on following rigid routines or schedules

There are five PDDs: Autistic Disorder, Pervasive Developmental Disorder — Not Otherwise Specified (PDD-NOS), Asperger Syndrome, and the less frequently occurring disorders: Rett Syndrome and Childhood Disintegrative Disorder (CDD). As you can see below, there are three autism spectrum disorders.

Pervasive Developmental Disorders (PDDs)

Autism Spectrum Childhood Disorders (ASDs) Disintegrative Disorder (CDD) Rett Autistic Syndrome Disorder Asperger Syndrome

Pervasive Developmental

Disorder – Not Otherwise Specified (PDD-NOS)

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Autism Spectrum Disorders As you can see from the diagram, Autistic Disorder, PDD-NOS, and Asperger Syndrome are under the category of Autism Spectrum Disorders (ASDs).

 Autistic Disorder or Autism is characterized by difficulties in all three areas (social skills, communication, and behavior — see above).

 PDD-NOS or High-Functioning Autism describes a child who meets some but not all the criteria for autism or has milder symptoms in one or more areas.

 Asperger Syndrome is characterized by relatively good basic language skills but difficulties in social interactions and conversation. A child with Asperger Syndrome might also have intense or restricted interests and/or challenging behaviors.

Your child’s specialists might use slightly different terms to describe your child. But even when professionals don’t always use these terms the same way, they usually agree that a child fits under the broader ASD category.

Less frequent Pervasive Developmental Disorders

Rett Syndrome is a developmental disorder that begins with normal early development and is followed by loss of motor skills, particularly hand use, and distinct hand movements, such as wringing, regression in skills, and slowed growth.

Childhood Disintegrative Disorder begins with normal development until the age of 3 or 4 and is followed by severe loss of communication, social, play, and motor skills.

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How is Autism Treated?

The most highly recommended treatment plans for children with autism spectrum disorders (ASDs) begin as soon as possible after diagnosis and include many hours of individual work with a child. Your child’s doctor or other specialist will recommend a plan that is specific to your child’s needs.

For children under 3 In Massachusetts, children under 3 years of age with ASDs are eligible for two sets of related services through the Department of Public Health:

Early Intervention (EI) Services are provided at home or your childcare location, and might include speech therapy, occupational therapy, physical therapy, music therapy, an educator or developmental specialist, and/or a social worker or psychotherapist. Many EI agencies also offer playgroups in their offices or in the community once or All good programs more a week, and provide transportation so your child can attend the playgroup. EI for children with an ASD: agencies also provide each family with a service coordinator who facilitates all services, including working with your Specialty Service providers, described next.  Focus on social and communication skills.

 Use positive behavior supports and Specialty Services are key components in the care of a child with an ASD and the strategies. services are also provided at home or your child-care location. The providers will use  Set goals and assess progress therapy approaches known as “ABA” or “Floortime,” or a combination of the two regularly. (descriptions of these approaches follow). Experts recommend that children with ASDs  Work with your child’s individual needs and interests. receive up to 25 hours a week of intensive services, depending on their needs. The  Have predictable schedules. ABA/Floortime providers should work closely with your EI therapists.  Have a high teacher-to-student ratio.  Involve the family (for example, For children over 3 parent education or home-based Children ages 3 and over with ASDs are eligible for services through the Department of programs).  Are full day (5 hours), full week (5 Elementary and Secondary Education at your local school district. Services are almost days a week), and full year (12 always provided in school, but home-based services might also be included. Contact months). the Special Education department in your local school district to begin the process. You  Are taught by experienced staff can find your school district in the phone book or by visiting the Massachusetts who are trained in working with children with ASDs. Department of Elementary and Secondary Education website at  Include transition planning to help a profiles.doe.mass.edu/ child move smoothly to the next level. If you live in another state, ask your child’s doctor how to access local resources.

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In “ABA” and “Floortime,” two of the most commonly used comprehensive teaching approaches for children with ASDs, providers work step-by-step with a child to build language, social, and play skills. Here is a general description of each approach:

Applied Behavioral Analysis (ABA) builds new skills and eliminates difficult behaviors by breaking tasks down into small steps. This scientifically-researched approach is especially effective in gaining the attention of children who can be Websites challenging to reach. ABA can be done in any setting -- at a table, on the playground, or in the classroom -- as long as the provider is a trained ABA professional. ABA – Applied Behavioral Analysis DIR/Floortime (Developmental, Individual Difference, Relationship-Based rsaffran.tripod.com/aba.html approach) includes highly motivating routines based on the child’s interests and builds social, communication, and play skills through increasingly complex, playful Floortime or DIR interactions. Similar approaches include Social Communication, Emotional Regulation www.floortime.org and Transactional Support (SCERTS) and Relationship Development Intervention (RDI). PECS – Picture Exchange System www.pecs-usa.com In addition to these approaches, most programs for children with ASDs incorporate specific tools such as: Speech-language therapy, which helps a child learn to understand and express her or SCERTS– Social Communication, Emotional himself through language. Regulation and Total communication interventions, which involve using language, vocalizations, Transactional Support www.scerts.com pictures and gestures as well as sign language and the Picture Exchange

Communication System (PECS) – almost any means that a child can and will use to communicate. RDI – Relationship Development Intervention Occupational therapy, physical therapy and sensory integration therapy, which www.rdiconnect.com respectively focus on a child’s hand and finger skills (fine motor), large muscle (gross motor), and sensory needs. Sensory Positive behavioral supports, which minimize challenging behaviors through Processing/Integration rewarding appropriate behaviors, responses, and task completion. Disorder www.spdfoundation.net

Medical professionals might also implement the following therapies: General information and Medication. There is no medication specifically for ASD. Some medications can help research summaries of with symptoms such as hyperactivity, anxiety, compulsive behaviors, attention, or treatment options www.asatonline.org aggression. Ask your doctor for advice as to whether one or more medications might be appropriate for your child and if the benefits outweigh any risks or side effects associated with the medication.

Biological therapies, which include specialized or restricted diets, nutritional supplements and vitamin regimens. Consult your doctor to determine whether these approaches have been demonstrated to be safe and effective.

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What Is Early Intervention?

(for children under age 3)

Early Intervention (EI) is a statewide, integrated, developmental program

available to families of children birth to 3 years of age. A child may be eligible for EI services if she or he has:

 Developmental delays and challenges as a result of a congenital

abnormality

 An identified disability

 If typical development is at risk due to certain birth-related or environmental

circumstances

EI provides services that contribute to the developmental progress of eligible children Anyone in and supports for the family. Professionals in various disciplines work with children to help them acquire physical, cognitive, communication, and social/emotional skills so Massachusetts they will have the best chance to become happy and healthy members of the (a parent, doctor, community. They might also offer parent support and training, parent and child play groups, swimming programs, and other opportunities to help the child and family thrive. caregiver, teacher

Who is eligible for EI? even a friend or Any child, birth to age 3, and his or her family may be eligible for EI services if the child: acquaintance)  Is not reaching age-appropriate milestones in one or more areas of development.  Is diagnosed with a physical, emotional, or cognitive condition that may result in a can make a developmental delay.  Is at risk for developmental delay due to biological, environmental, or other factors, referral by calling such as prematurity, major birth trauma, or illness. 1-800-905-8437

How can your child and family become involved with EI? without a Anyone in Massachusetts (a parent, doctor, caregiver, teacher, even a friend or acquaintance) can make a referral by calling 800-905-8437 (800-905-TIES) without a prescription. prescription. Ask for a list of certified Early Intervention programs serving your community and then contact the EI agency directly.

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What happens after a referral? An EI team will conduct a developmental assessment of your child with your family members present to determine eligibility. This assessment will focus on specific areas of child’s development, including cognitive, speech/language, motor and self-help skills, social and emotional development, and behavior. If your child is If your child is found to be eligible, an Individualized Family Service Plan (IFSP) will be written based on the individual needs of your child and family. EI will begin working with found to be your child and family within 45 days of referral. eligible, EI will Who provides EI services? begin working with Depending on your child’s needs, services are provided by professionals in a specific field. An educator, physical therapist, speech and language pathologist, psychologist, your child and occupational therapist, social worker, nurse, or another specialty service provider may be a member of the team. Your child’s pediatrician and other health care providers are family within 45 also members of the team. You--the parents--are the most important members of your days of referral. child’s team and should feel comfortable contributing your opinions, asking questions, and participating in treatment.

Where and how are services provided? Often the EI team will serve your child and family in a “natural environment” such as your home, child-care center, playground, or library. Serving children in natural environments helps them get accustomed to and participate in typical community activities and meet other children.

How are services paid for? In Massachusetts, some, but not all families pay an annual fee based on family size More online and income. For more information, call 800-905-8437 or go to For a thorough list of www.mass.gov/Eeohhs2/docs/dph/com_health/early_childhood/annual_fee.pdf programs in your community and other information, visit What should I do next? www.massfamilyties.org Your child’s pediatrician can make the referral, or you can call yourself. If you live in Massachusetts, call the Central Directory for Early Intervention at 800-905-8437 Other resources available: (800-905-TIES) or visit www.massfamilyties.org for a listing of Early Intervention  Parent-to-parent programs serving your community. A member of the EI team will then schedule an matching evaluation with your family to determine eligibility.  Online resource database

If you live in another state, contact your Department of Public Health to find out which  Workshop listings agency can help your child.

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What Are Specialty Services? (for children under age 3)

Specialty Service Providers: The Massachusetts Department of Public Health has set up a system to provide

intensive intervention to children with autism spectrum disorders who are enrolled in BEACON SERVICES: Serves most communities in the state: Early Intervention. In addition to the comprehensive services provided by your local 508-478-0207 www.beaconservices.org early intervention program, you may choose to have additional help from a Specialty BUILDING BLOCKS: Serves Service Provider. These providers have particular expertise in the area of autism. Northeast region, Boston, and Worcester: 978-624-2320 They offer highly structured, individualized treatment programs that promote www.ne-arc.org CHILDREN MAKING STRIDES: communication and social skills and address behavior that interferes with learning. Serves Southeast region & Cape Cod: 508-563-5767 Who is eligible for Specialty Services? www.childrenmakingstrides.com A child who is enrolled in an Early Intervention Program who receives a diagnosis HMEA, Inc.: Serves Central, on the autism spectrum from a physician or psychologist is eligible for Specialty Northern, Southeast, & Boston areas: 508-298-1100 Services. www.hmea.org

LIPTON EARLY ASSISTANCE Who are Specialty Service Providers? PROGRAM (LEAP): Serves Central & Specialty Service Providers are agencies who have demonstrated expertise in the North Central regions: 978-466-8333 area of autism spectrum disorders and have been approved by the Department of MAY INSTITUTE: Serves Boston Public Health to work in conjunction with Early Intervention Programs to serve area, South & North Shores, call toll children under age 3 with this diagnosis. Each agency covers a particular free: 800-778-7601 geographic area. Hampshire & Hampden counties: 413-734-0300 www.mayinstitute.org How do I find a Specialty Service Provider? MILESTONES: Serves Boston & The list of approved providers is in the right column on this page. It is also in the suburbs: 781-895-3200 booklet: “Information for Families with Children Newly Diagnosed with Autism www.advancingmilestones.com Spectrum Disorders,” available to families from your Early Intervention provider NEW ENGLAND CENTER FOR CHILDREN: Serves Southborough: or can be downloaded from the Early Intervention Parent Leadership website: 508-481-1015 www.eiplp.org/documents/SSP_Autism0109.pdf. www.necc.org PEDIATRIC DEVELOPMENT How can my child be referred to a Specialty Service Provider? CENTER: Serves Berkshire County: 413-499-4537 You may contact the provider yourself or you may ask your Early Intervention www.pediatricdevelopmentcenter.org Service Coordinator to make the contact for you. SERVICENET-REACH PROGRAM: Serves Hampshire, Hampden, & May I interview more than one Specialty Service Provider? Franklin counties, & North Quabbin area: 413-585-1300 Yes. You may set up an intake appointment with more than one Specialty www.servicenetinc.org Service Provider. Read more about the programs’ philosophy and approach by visiting their website. Select a program that uses the approach that feels most appropriate for your child and family and the one recommended by your child’s doctor.

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What are the costs associated with Specialty Services? At the present time, Specialty Services are provided at no direct cost to families. All school systems are required to Do Specialty Service Providers offer services such as speech/language therapy, occupational therapy, and physical therapy? provide children No, not routinely. Some Specialty Service Providers have speech, occupational, and physical therapists on staff who consult to children receiving intensive intervention from with disabilities an time to time, but these types of therapy services are not part of the Specialty Service educational system. Your child will continue to receive the services specified on his/her Individualized Family Service Plan through your Early Intervention program. program to meet

How are the numbers of hours of intervention determined? each child’s needs Most Specialty Service Providers start with five to six hours of intervention per week at the age of three. and then increase those hours as the child’s ability to adapt to the structure of the sessions grows. The family’s schedule, the age of the child, his/her learning style and behavioral characteristics, and rate of progress will also be considered in developing treatment plans. No formula dictates how much service is sufficient for any particular child. The quality of the instructional sessions and the degree of continuity across the child’s day may be more important than the number of hours provided. Remember that all of the Specialty Service Providers will be working closely with you and any of your child's caretakers to promote social skills and communication and to manage behavior that interferes with learning.

Are parents expected to be involved in Specialty Service intervention? Most definitely. Research indicates that children whose parents are very involved in the various aspects of their intervention are more likely to make progress. Specialty Service Providers expect that parents will learn and use strategies that can help their children progress.

What will happen when my child turns three and is no longer eligible for EI? Children are not eligible for Early Intervention or Specialty Services after their third birthdays. Some Specialty Service Providers, however, have staff available if schools want to hire them for direct service, consultation, and/or staff training after the child turns 3.

For more information about specialty services such as ABA or Floortime, contact Tracy Osbahr, Director of Specialty Services at 413-586-7525.

Information provided by the Early Intervention Program within the Massachusetts Department of Public Health

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How Does My Child Transition to School?

Transitioning from Early Intervention services into the public school system is one of the first big transitions in your child’s life – and yours. Although there are differences among school districts regarding when and how the process is started and completed, You may download “A the following outline will give you a general idea about what to expect. Parents’ Guide to Special

What is special education? Education in Massachusetts” It can be many different types of services. Some children need to be educated in a from the Federation for special classroom. Some need additional help in a regular classroom. Others need related services, like speech and language therapy, occupational therapy, ABA, and Children with Special Needs to social skills groups to meet their needs. learn more about your child’s As a parent, you are the best advocate for your child. Legally, you are entitled to and must be informed of all services available to your child. The greater your involvement rights. Find it at: and voice, the greater the outcome. www.fcsn.org/parentguide

What is a TEAM evaluation? (also available in Spanish and To begin special education services, you should request a TEAM evaluation, sometimes called a “CORE.” A TEAM evaluation is a group of assessments that will Portuguese) help the public school systems determine whether your child has a disability that requires special education (programs and services adapted for the education of children with disabilities or unique needs). The test results will define your child’s General tips strengths and areas of need. Your child’s eligibility for special education, as well as  Maintain interactive subsequent program planning, is based upon the results of the TEAM evaluation. The communication with your child’s teacher and rest of this section is designed to help you understand the TEAM process, your legal school system. rights, and the important deadlines.  Keep a log of contacts with Understanding the Process the school. It is extremely important that you understand everything that occurs throughout the  Follow up important oral process. The following advice might help you. requests in writing. 1. Ask questions. When you do not understand something at a meeting, ask  Get connected with a parent organization that someone to further explain. offers free training and 2. Prepare for meetings and phone calls concerning your child. Be familiar with support for parents whose children the information that will be discussed and list all concerns that you expect to be have special needs (see addressed. Community Support 3. Obtain as much information as you can about the process and your rights. section for contact information). Contact the Federation for Children with Special Needs at 800-331-0688 or visit their website at www.fcsn.org

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4. Use advocates. Professional representatives can help you make your voice heard. An educational advocate can be assigned by the Department of Elementary

and Secondary Education to act on behalf of a child when the child’s parents are unavailable or have no educational decision-making rights. Private independent advocates are available for all, although families that are 400 percent above the federal poverty level can be charged a fee for services. The Bureau of Special Education Appeals (BSEA) provides a list of free and low-cost advocacy services and attorneys upon request. Call 781- 338-6400 or visit www.doe.mass.edu/bsea 5. Take advantage of parent groups. Other parents are important resources because they are experiencing or have experienced the same or very similar situations to you. The three major parent resources are:  MassPAC (www.masspac.org) or www.concordspedpac.org to find listings for your own city or town’s Parent Advisory Council. Other parents are  Federation for Children with Special Needs (www.fcsn.org) important resources  Massachusetts Family TIES (www.massfamilyties.org) 6. Notify your child’s primary care provider. Your child’s provider can better serve because they are your child if he/she is aware that your child is receiving a TEAM evaluation. It is important that the doctor know about the proceeding and what services your experiencing or child receives as a result. have experienced

Important reminders the same or very  A TEAM evaluation and the services your child may receive are all free.  All children in public school (regardless of immigration status) are able to similar situations request a TEAM evaluation. to you.

For questions about transition, contact the Family Support Specialist in the Department of Education at 617-988-7811

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Transition to School Timeline for Parents

Referral and Parent or professional writes a letter Consent to the school requesting an evaluation for a child saying, “I give consent for the school to evaluate my child.” Must be completed within 30 school days of consent School sends letter for signed parent to sign to schedule evaluations

Tests and assessments Evaluation

Written summary of tests completed (you MUST ask the Must occur within Team meeting school to give you 45 school days of copies and you will consent signed get them 2 days before the meeting)

Individualized Education Plan (IEP)

Sign IEP (you can IEP sent to parents reject whatever within 55 school days Decision you disagree with) of consent signed

Parents return IEP Receive Appeal to school within 30 services calendar days

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What Laws Protect My Child?

A law took effect in Massachusetts in 2006 regarding the special education needs of Massachusetts state law children with autism spectrum disorders (ASDs). The Department of Elementary and requires that IEP Teams of Secondary Education issued a “Technical Assistance Advisory” to help school districts all children with an ASD “shall consider and shall understand the law. This information is also very helpful for parents who want to learn specifically address” the following: how the law helps their children with ASDs. An excerpt of the advisory provided to school districts follows. For the full text of the advisory and to read the complete 1. Verbal and nonverbal communication needs of the Massachusetts autism spectrum disorder law, go to: child www.doe.mass.edu/sped/advisories/07_1ta.html. 2. The need to develop social If you live in another state, call your Department of Education and inquire about the interaction skills and proficiencies educational laws for children with ASDs.

3. The needs resulting from Massachusetts Department of Education Technical Assistance Advisory the child’s unusual responses In July 2006, Chapter 57 of the Acts of 2006, entitled “An Act To Address The Special to sensory experiences Education Needs Of Children With Autism Spectrum Disorders,” took effect. This law requires that IEP teams consider and address in the IEP discussion the following seven 4. The needs resulting from specific needs of students with ASDs: resistance to environmental change or change in daily routines 1. Verbal and nonverbal communication needs: Impairment in communication is one of the defining characteristics of ASD. Therefore instruction and development of communication skills should be addressed as an essential element of the student's 5. The needs resulting from engagement in repetitive IEP. activities and stereotyped movements 2. The need to develop social interaction skills and proficiencies: Social skills vary in severity and pervasiveness as well as how they present at different ages and 6. The need for any positive developmental stages. In the most severe expression of qualitative social impairment, behavioral interventions, students with ASD may consistently appear socially disconnected or avoidant, even strategies, and supports to address any behavioral with immediate family members. In less severe cases, they may find it difficult to initiate difficulties resulting from interactions, frequently misunderstand social situations or be unable to maintain a autism spectrum disorder conversation on a subject other than one on a preferred topic. A younger child with ASD may lack variation in spontaneous or social imitative play, lack pretend or 7. Other needs resulting from imaginary play skills or play with toys in an atypical or repetitive way, e.g. lining up toy the child’s disability that impact progress in the general cars or spinning the wheels, rather than racing them or engaging in pretend scenarios. curriculum, including social and emotional development. 3. The needs resulting from the student's atypical responses to sensory experiences: The IEP Team should consider whether a student with ASD exhibits under- or over- sensitivity to particular stimuli, such as tactile, visual, auditory, smell, taste or texture.

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One and often several of these sensitivities are common in students with ASDs and can cause major discomfort, inattention and negative behaviors. IEP OPTIONS

4. The needs resulting from resistance to environmental change or alterations in daily Has your child’s IEP Team considered all the options? routines: Students with ASDs often have unusual or intense responses to an IEPs for children with autism unexpected change in the environment, such as turning the heat or air conditioning up, spectrum disorders might painting the walls a different color, even moving the location of a desk or chair. A include: change in daily routine, such as a fire drill or substitute teacher may also be difficult understand or adapt to. Preparing for changes and transitions with visual schedules • ABA and supports, multiple verbal reminders and timers often helps to minimize the • Home programs discomfort and promote greater success, flexibility and independence. • Summer programs • After-school programs 5. The needs resulting from engagement in repetitive activities and stereotyped movements: Students with ASDs may exhibit ritualistic behaviors, movements or • Floor time language. The educational team should consider their function and the extent to which • Sensory integration these activities interfere with engagement in more productive activities such as • Assistive technology interacting with peers, playing or learning academic skills. • Socialization supports • Behavioral supports 6. The need for positive behavioral interventions, strategies and supports to address • Augmentative any behavioral difficulties resulting from ASDs: Because of the complex developmental, communication: e.g., PECS learning and adaptive needs of students on the autism spectrum, they often exhibit • Speech & language behaviors that are challenging in their intensity and frequency, and they may interfere therapy with social and academic activities. The IEP Team should consider and discuss the • Occupational therapy need for a functional behavioral assessment (FBA) in order to identify the causes and • Physical therapy functions of inappropriate behaviors and design an intervention or management plan • Vocational supports based on FBA results and analysis. • Life skills training

7. Other needs resulting from the student's disability that impact progress in the general • Classroom aides curriculum, including social and emotional development: A student with ASD often • Transition services exhibits deficits in executive function, i.e. the ability to plan, organize, make appropriate choices and generalize learned skills to other environments/activities and engage in productive and functional routines. The student may have a tendency to perseverate – to over-focus on small or unimportant features – which may distract him or her from perceiving and understanding the whole activity, procedure or event. The IEP Team should consider the need for structure, academic and social support or different services in the classroom and other environments.

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Federal Laws and Your Child

There are four federal laws that protect the rights of people with disabilities:  The Individuals With Disabilities Education Act of 2004  The No Child Left Behind Act of 2001  Section 504 of the Rehabilitation Act of 1973  The Americans with Disabilities Act

The Individuals with Disabilities Education Act (IDEA) 2004 All states get federal money under IDEA and must provide a free, appropriate public education to all eligible children with disabilities. A child can be identified as eligible for special education only after an evaluation has been conducted. Your local school district is responsible for evaluating your child and you will need to ask them to schedule an evaluation. However, you can also submit any evaluations your child has already had for their consideration.

IDEA provides for special education and related services to children in all types of settings – child care, preschool, kindergarten, elementary, middle and high schools. Special education is a means by which children can get the supports and services they need in order to learn and make effective progress. Special education is not a "place" but rather a way for your child to get an appropriate education. Contact the For more information about IDEA, go to www.idea.ed.gov Federation for

No Child Left Behind Act (NCLB) of 2001 Children with NCLB requires states and school districts to intensify their efforts to improve the academic achievement of public school students considered at risk for school failure. Special Needs for Moreover, the law holds the districts accountable for their schools’ performance. The more information challenging new provisions of NCLB create expanded opportunities for improved academic achievement and documentation of that improved performance. about your child’s NCLB outlines the requirements for parental involvement, highly qualified teachers, scientifically-based reading instruction, tutoring and supplemental educational services, rights. research-based teaching methods, and individual school and district report cards. 617-236-7210 For a parent’s guide to NCLB, go to www.ed.gov/parents/academic/involve/nclbguide/parentsguide.pdf www.fcsn.org

Section 504 of the Rehabilitation Act of 1973 (Section 504) & The Americans With Disabilities Act (ADA) Section 504 and the ADA are federal civil rights laws that prohibit discrimination against those with disabilities. Their goal is to promote equal access to and participation in programs and services for all people with disabilities.

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Section 504 applies to all programs and activities that receive federal money, including school districts, Head Start programs, and some private schools. Children with disabilities who are not eligible for special education programs and related services under IDEA might be eligible for services under Section 504. Your school district must also make sure that its programs are physically accessible to children with disabilities. Some helpful websites and downloads: If your school district provides after-school programs for students, those programs must Massachusetts Department of also be available for students with disabilities. Elementary and Secondary Education Special To read more about Section 504, visit www.ed.gov/about/offices/list/ocr/504faq.html Education/Parent Information: www.doe.mass.edu/sped The ADA gives civil rights protections to individuals with disabilities that are consistent with those provided to people on the basis of race, sex, national origin, and religion. A Parent’s Guide to Special For children with disabilities, ADA guarantees equal opportunity in public Education (available in English, Spanish, and accommodations, and state and local government services, including public schools. Portuguese) Most private schools and childcare centers also abide by the ADA. www.fcsn.org/parentguide

The goal of the ADA is to remove the barriers that prevent those with disabilities an equal opportunity to share in and contribute to American life. The law is about participation and access to the same kinds of opportunities available to those without disabilities. For example, under the ADA, most public or private agencies cannot refuse to allow your child to participate solely because of a disability.

To read more about this law visit www.ada.gov

The above information is derived from the U.S. Department of Education, Office of Educational Research and Improvement.

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What Are Some Community Resources for Families? Autism Support Centers:

The following is a list of resources for children with autism spectrum disorders and TILL, INC. in Dedham - Serves Greater their families. Each resource offers a range of different supports and also might Boston: 781-302-4600 www.tillinc.org have specific eligibility criteria, so it is important for you to contact them directly. AUTISM RESOURCE CENTER The most important place to contact first is your local Autism Support Center. in West Boylston - Serves Worcester, North Central & Currently in Massachusetts there are seven support centers located across the state South Valley areas: which offer support, resources and referral information, parent trainings and 508-835-4278 www.autismresourcecentral.org workshops, and specialized programs for children, teens and young adults at no membership costs (please see the side bar for locations and contact information). These centers are often staffed by people who have a child with an ASD, and AUTISM SUPPORT CENTER in Danvers - Serves Northeast they are there to explain what services and supports your child and family can region: 978-777-9135 benefit from. Call and introduce yourself and your child, ask to be put on their www2.primushost.com/~nsarc mailing lists, and tell them you would like to do an “intake” for services. Many of these centers also offer support groups and information sessions that can be FAMILY AUTISM CENTER very helpful to families. in Westwood - Serves Norfolk County: 781-762-4001 www.sncarc.org The Support Center staff can also explain the benefits of applying for government funds and assistance through the Massachusetts Department of Development Disabilities (DDS, formerly known as DMR). In Massachusetts, DDS is the agency AUTISM ALLIANCE OF METROWEST that provides a wide array of services and supports to children under 18 years old in Natick - Serves Metrowest, with autism or other conditions. Currently, there are two types of services you can Middlesex West: 508-652-9900 www.autismalliance.org apply for within DDS if your child has an ASD:

1) The DDS “Autism Spectrum Division” only program, which means that your COMMUNITY AUTISM child is diagnosed with an autism spectrum disorder. Most children who qualify for RESOURCES in Swansea - Serves these services do not also have intellectual disabilities, global developmental delays or Southeastern region, Cape Cod significant functional impairment, and therefore do not qualify for family supports. & Islands: 508-379-0371 www.community-autism- Under this program, you and your child will be able to access community-based resources.com recreational, social, and therapeutic programs that are individually coordinated by the Autism Support Centers. These programs are of no or minimal cost to your COMMUNITY RESOURCES family. Also note that each center raises private funds so they might coordinate FOR PEOPLE WITH AUTISM other programs that do have participation fees. in Easthampton - Serves Western region: 413-529-2428 www.communityresourcesforaut For more information about the DDS Autism Spectrum Division, contact Cariann Harsh ism.org at 617-624-7769 or [email protected].

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2) The “Dual Eligibility” for Family Support Services/Service Coordination program is for children who have an autism spectrum disorder, along with intellectual disabilities, global developmental delay, or impaired levels of functioning in at least three areas: self-care, communication, learning, mobility, self-direction and (for age 14 and older) capacity for independent living and economic self-sufficiency. A DDS team will review your child’s documentation, and if he/she is found eligible, will assign a service coordinator from your DDS local office to your family. Under this program, your family might receive annual “respite”/flexible family support funds or other supports based upon need and where you live.

For information about the DDS eligibility guidelines and to download the Application for Eligibility, go to www.mass.gov/DDS or call 617-727-5608. Send the completed application to your Regional Eligibility office coordinator (located on the website under “find a DDS office”). You will be contacted for a face to face interview and asked to provide diagnostic information and supporting documentation (for example, a report from a developmental pediatrician or psychologist, or an IEP, etc.).

Autism Resources

Advocates for Autism-Massachusetts (AFAM): A parent-founded and -driven advocacy group for increasing awareness of autism spectrum disorders and related current and pending legislation in Massachusetts. Call 781-891-6270 or visit www.afamaction.org The Autism Consortium has Asperger’s Association of New England (AANE): A comprehensive resource and a comprehensive support center serving the Boston and New England area for individuals with Asperger RESOURCE DATABASE Syndrome and high-functioning autism (adults, teens, children) and their families. Has with hundreds of autism- an excellent website including lists of support groups, family grants, specialized related listings, such as programs, books and articles, conferences, trainings, and more. Staff includes service summer camps, after-school coordinators for adults, teens, and children. Call 617-393-3824 or visit www.aane.org programs, ABA providers, social skills groups, Autism Special Education Legal Support Center at Massachusetts Advocates for education consultants, and Children: Through the Autism Legal Helpline, callers receive free technical assistance much more! and answers to their questions about educational rights of children with autism. Call To access the database, 617-357-8431or visit www.massadvocates.org go to www.autismconsortium.org Doug Flutie Junior Foundation: Raises public awareness and supports families and and click on the Resource organizations through grants. Provides education, resources, and links about autism Database link Call 508-270-8855 or 866-3AUTISM or visit www.dougflutiejrfoundation.org

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Massachusetts Disability Resources

ARC of Massachusetts: A statewide resource that provides advocacy and support for Some of the services individuals with intellectual and developmental disabilities, such as autism, through the offered at Autism Support 22 ARC chapters. Call 781-891-6270 or visit www.arcmass.org Centers are:

Department of Public Health / Family and Community Health Office: Go to Information and Referrals www.mass.gov and type Department of Public Health in the Search box or call Lending Library 866-627-7968. To reach the public benefits specialist, call Gail Havelick at 800-882-1435. Parent Support Groups Sibling Workshops Early Intervention and Specialty Service Providers: For information about services Trainings and for children under three in Massachusetts, go to www.mass.gov and type Early Consultations Intervention in the Search box or call 800-905-8437. Speaker Series For information about Specialty Services such as ABA or Floortime, call Tracy Osbahr, Open Gym and Swim Director of Specialty Services at 413-586-7525. Sessions Family Events Family Ties of Massachusetts: A statewide information and parent-to-parent support Camp Listings program for families of children with special needs and chronic illnesses. Offers a Newsletter comprehensive resource directory. Call 800-905-TIES (8437) or visit School Vacation Programs www.massfamilyties.org

Massachusetts Parent Information & Resource Center (PIRC): Funded by the US Department of Education, PIRC educates parents so they can partner with schools to help children. Offers workshops and resource lists. Call 617-236-7210 or 877-471-0980 or visit www.pplace.org Visit the Autism MassHealth: Primary or supplemental insurance program. Cost is based on income and might be free. Call 800-841-2900 and say you have a child with a disability and Consortium’s want to fill out the main application AND the child disability supplement. To download the main application, go to www.mass.gov and type MassHealth MBR in the Search Event Calendar for box. To download the child disability supplement, go to www.mass.gov and type Child activities of interest Disability Supplement in the Search box. for your family: Parent/Professional Advocacy League (PAL): Statewide parent support organization for children’s emotional, behavioral, and mental health needs. In Boston call 617-542- www.autismconsortium.org 7860 or 866-815-8122. In Worcester call 508-767-9725 or visit www.ppal.net

Special Health Needs Community Support Line: Under the Massachusetts Office of Health and Human Services, the support line offers statewide information, help, and referrals for families of children with special health-care needs. Go to www.mass.gov and type Community Support Line in the Search box or call 800-882-1435.

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Special Education Resources

Children’s Law Center of Massachusetts: Provides legal services to low income children, and information and training to parents. Call 781-581-1977 or 888-543-5298 or visit www.clcm.org

Disability Law Center: Offers legal advice for children who have disabilities; sometimes takes cases for free. In Boston call, 617-723-8455 or 800-872-9992. In Some helpful websites and Western MA call 413-584-6337 or 800-222-5619 or visit www.dlc-ma.org downloads:

EdLaw Project: Advocates for low-income children in danger of not receiving Massachusetts Department of appropriate education services. Provides legal representation, technical assistance, Education: and training to families. Call 617-989-8100 or visit www.youthadvocacyproject.org Parent Information Guide to Special Education Federation for Children with Special Needs: Updated federal and state special www.doe.mass.edu/sped education laws, advice, information, and access to advocacy, IEP development and related resources, parent information guides, and statewide parent workshops. Federation for Children with Special Needs: In Boston call 617-236-7210 or 800-331-0688. In Western MA call 413-323-0681 or A Parent’s Guide to Special 866-323-0681 or visit www.fcsn.org Education www.fcsn.org/parentguide Massachusetts Department of Elementary and Secondary Education, Special Education: The state’s official website for parents of children ages 3 through 22 eligible for special education. Provides state and federal regulations, information on IEPs and parent rights, and a procedural safeguards manual for working with your district’s special education department. Call 781-338-3000 or visit www.doe.mass.edu/sped  Program Quality Assurance: If you are having problems or questions about your child’s education plan or services and need to speak to the contact person for your town or city call 781-338-3700 or visit www.doe.mass.edu/pqa

 Transition Support (Early Intervention to Public Schools): For specific questions contact a Family Support Specialist at 617-988-7811.

Parent Advisory Council (PAC): A PAC is a group of parents in your city/town whose children are receiving special education services from the school district. They have information about local services, and offer workshops and the opportunity to network with other parents. To find the PAC for your school district, ask the special education office for the number or visit www.concordspedpac.org Also visit the Spedpac web site for detailed information relating to special education in Massachusetts.  Massachusetts Association of Parent Advisory Councils (MassPAC): the main organization for PACS in MA and a helpful resource for parents. Part of the Federation for Children with Special Needs. Call 617-236-7210 or 800-331-0688 or visit www.masspac.org

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Special Needs Advocacy Network (SPAN): Provides a list of special education advocates. Fees vary. Also offers workshops. Call 508-655-7999 or visit www.spanmass.org

SpedChildMass: This website has Massachusetts workshops and resources for children with special needs, along with pertinent news. Visit www.spedchildmass.com

SPEDWatch: Grassroots nonprofit social change movement working to secure the educational rights of all Massachusetts schoolchildren with disabilities. Call 978-433-5983 or visit www.spedwatch.org

Urban PRIDE: For families of people with disabilities living in city of Boston. A resource for workshops, parent supports, and advocacy. Call 617-206-4570 or visit www.urbanpride.org

Wrights Law: Special education laws and advocacy information. Visit www.wrightslaw.com

New England Resources

New England INDEX: Comprehensive list of disability resources. Call 800-642-0249 or visit www.disabilityinfo.org

Connecticut: Autism Society of America (Connecticut chapter): Call 888-453-4975 or visit www.autismsocietyofct.org

Connecticut Autism Spectrum Resource Center: Call 203-265-7717 or visit www.ct-asrc.org

Connecticut Families for Effective Autism Treatment: Call 860-571-3888 or visit www.ctfeat.org

Connecticut Parent Advisory Center: Call 860 739-3089 or visit www.cpacinc.org

Connecticut State Department of Education: Call 860-713-6543 or visit www.sde.ct.gov

Hartford-New Haven Community Parent Resource Center (CPRC): Call 860-297-4358

Stamford Education 4 Autism: Call 203-322-9767 or visit www.stamfordeducation4autism.org

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New Hampshire: Autism Society of America (New Hampshire chapter): Offers educational support and resources for parents. Call 603-679-2424 or visit www.autism-society-nh.org

The Birchtree Center: A nonprofit organization that provides specialized educational services for children and youth with autism. Call 603-433-4192 or visit www.birchtreecenter.org

Department of Education: Call 603-271-3741 or visit www.ed.state.nh.us/education

Easter Seals of New Hampshire: Offers Autism Support Program, information, and services for youth and families with developmental and behavioral needs. Call 603-623-8863 or 800-870-8728 (in NH) or visit www.eastersealsnh.org

Jacob’s Bridge Through Autism: Developed by parents, has listing of local and national resources. Visit www.jbtautism.org

New Hampshire Resource Center on Autism Spectrum Disorders: At the Institute on Disability at UNH. Call 603-228-2084 or 800-238-2048 (in NH) or visit www.iod.unh.edu

Parent Information Center: Information about special education laws and advocacy in New Hampshire. Call 603-224-7005 or visit www.picnh.org

Southeastern Regional Education Service Center: Education and behavioral support programs and services for families and schools; has specific autism services. Call 603-206-6800 or visit www.seresc.net

Maine: Autism Society of America (Maine chapter): Call 800-273-5200 (in ME) or visit www.asmonline.org

Children’s Behavioral Health Services (Department of Health & Human Services): Call 207-624-7900 or visit www.maine.gov/dhhs

Center for Community Inclusion & Disability Studies at the University of Maine: Call 207-581-1084 or 800-203-6957 (in ME) or visit www.ccids.umaine.edu

Department of Education: Visit www.maine.gov/education

Developmental Disabilities Council of Maine: Call 207-287-4213 or 800-244-3990 (in ME) or visit www.maineddc.org

Disability Rights Center: Call 800-452-1948 (in ME) or visit www.drcme.org

Maine Parent Federation: 800-870-7746 (in ME) or visit www.mpf.org

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Rhode Island:

Autism Project of Rhode Island: Family support, resources, and education. Parent Training and Call 401-785-2666 or visit www.theautismproject.org Information Centers & Autism Society of America (Rhode Island chapter): Call 401-595-3241 or visit Community Parent www.asa-ri.org Resource Centers

Department of Elementary and Secondary Education: Call 401-222-8999 or visit www.ride.ri.gov/Special_Populations Each state has at least one parent center that serves Families for Effective Autism Treatment of Rhode Island: Call 401-886-5015 families of children and or visit www.featri.org young adults from birth to

Rhode Island Developmental Disabilities Council: Call 401-737-1238 or visit age 22 with all disabilities. www.riddc.org Parent Centers help families obtain appropriate education Rhode Island Disability Law Center: Call 401-831-3150 or visit www.ridlc.org and services for their children

Rhode Island Parent Information Network: Call 401-270-0101 or 800-464-3399 with disabilities; work to (in RI) or visit www.ripin.org improve children’s education results; train and inform Vermont: parents and professionals on Autism Society of America (Vermont chapter): Call 800-559-7398 (in VT) or visit a variety of topics; resolve www.autism-info.org problems between families and schools or other Autism Support Daily: Call 802-985-8773 or visit www.autismsupportdaily.com agencies; and connect

Department of Education: Call 802-828-5116 or visit www.education.vermont.gov children with disabilities to community resources that Vermont Division of Disability Autism Supports: Call 802-241-2863 or visit address their needs. www.ddas.vermont.gov

Vermont Autism Task Force: Email [email protected] or visit For information and to www.autismtaskforce.com locate the Parent Center in your state, visit www.taalliance.org or call 888-248-0822

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National Resources

American Academy of Pediatrics: Visit www.aap.org/healthtopics

Autism, Asperger’s and Pervasive Developmental Disorders: Offers comprehensive information, education, articles, and fact sheets. Visit www.autism-help.org

Autism Society of America: Oldest parent advocacy group. Offers many resources. Annual conference. State chapters. Visit www.autism-society.org

Autism Speaks: Funds global research into the causes, prevention, treatments and cure for autism; and raises public awareness about autism and its effects on individuals, families and society. Visit www.autismspeaks.org Autism Speaks also offers a free comprehensive guide to the first 100 days after diagnosis. Download it from: www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf

First Signs: Offers educational materials, articles, links for early screening, and signs of autism. Visit www.firstsigns.org

Internet Special Education Resource National Directory: Offers a comprehensive, state-by-state listing of care providers, advocacy, therapies and special education resources. Visit www.iser.com

Wrights Law Yellow Pages for Kids with Disabilities: Comprehensive list of resources by state for children with all disabilities. Visit www.yellowpagesforkids.com

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How Do I Get the Most Out of My Heath Care Insurance?

Tips for families with children and youths with special health care needs.

1. Read the materials you receive from your health plan. This may include your service benefit plan, a directory of network providers and supplementary materials. Many private health insurers send periodic newsletters and health promotion materials. These may help you better understand your health benefits and maximize the services your family is entitled to receive. Massachusetts Family-to-Family 2. Pay special attention to your health plan’s vision, mission and core Health Care Information values statements. Often these statements include phrases about providing members with affordable, accessible care, forming working partnerships and and Education Center ensuring members’ peace of mind. These statements can aid you when you are advocating for a service or having problems getting a service covered. It is Provides information and powerful to frame your argument in the words of your insurer. resources for families of children and youth with 3. If your child has special health needs and requires more services than special health care needs most children ask your insurer for a case manager or care coordinator. This is a free service and can provide a single “go-to” person who can help you www.massfamilyvoices.org understand your benefits and make the referral or pre-approval process easier 800-331-0688 and faster. E-mail [email protected]

4. Review the EOBs (Explanation of Benefits) your insurer sends you. Check them over for accuracy, the amounts paid and any co-payments you are responsible for. This is a good way to avoid billing inaccuracies. It is also a good way to make sure you are not paying for services your child did not receive or for services that your policy should cover. Example: A child’s hospitalization cost $67,000. The insurance company offered to pay the hospital in full in 10 days if they would give the insurer a 3 percent discount. The hospital agreed, and the family received an EOB that stated “hospital negotiated discount” and noted a payment of $64,990. The hospital then billed the family for $2,010. Because the family had reviewed the EOB, they informed the hospital that they were not responsible for paying the difference between the full amount and the negotiated amount. Then the hospital voided the bill and, at the family’s request, issued a letter stating the family’s account was paid in full.

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5. Keep a written record of calls and letters to your health insurer. Write down the names and numbers of the people you speak with and a short summary of your discussion. Write the information on the EOB, and file it chronologically so you can find the information if you need to refer to it again. This is one way to remind yourself about your original question and to refer back to your previous conversation. If you have a problem getting a service covered, it is more effective to say: “I spoke with Ms. Smith on June 1, 2007, and she approved … ” rather than saying, “The last time I called I spoke with someone who told me … ”

6. When speaking with insurance customer service personnel or case managers, be polite. You want these people to want to work with you. It is easier to build partnerships and get help when you’re cooperative and pleasant; no one wants to help someone who is rude or disrespectful. Even if the person was not able to help you, offer your thanks.

7. Work your way up the ladder: If the customer service or case manager can’t help you, ask to speak to the person who can, such as a supervisor or head of If your child has another department. special health needs

8. Insurance companies look at the bottom line: What is this going to cost? and requires more Make your requests in those terms, and in terms of “medical necessity.” Your health plan may have a definition or you can use the MassHealth definition, “A services than most service is medically necessary if it is reasonably calculated to prevent, diagnose, improve or cure conditions that endanger life, cause suffering or children, ask your pain, aggravate a handicap or result in illness or infirmity.” For example, tell insurer for a case your insurer: If you pay for speech and language therapy now, 52 visits a year will cost you $XXX. If you don’t provide this services, augmentative manager or care communication/assistive technology will cost you $XXX in five years when this

therapy is no longer an option for my child. coordinator.

9. When you have exhausted the chain of command within your insurance company, you can get help from the Office of Patient Protection (OPP). An ombudsman can help families understand their insurance benefits and work through external grievances once a family has exhausted the internal grievance process with their insurer. To learn more about the OPP, visit www.state.ma.us/dph/opp or call 800-436-7757.

This information was provided by the Massachusetts Family-to-Family Health Information Center, a project of Mass Family Voices @ Federation for Children with Special Needs, and developed with funding from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, grant number H84MC08005.

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How Do I Apply for MassHealth?

Medicaid in Massachusetts is called MassHealth: There are many different types of

MassHealth. Eligibility for a particular MassHealth program is determined by family income and family size, as a percent of the federal poverty level and whether or not you have a family member with a disability. Disability is determined by the federal criteria on the Social Security Administration (SSA) website.

To read the childhood listing for Autism Spectrum Disorders, go to: www.socialsecurity.gov/disability/professionals/bluebook/ChildhoodListings.htm Click on 112.00 Mental Disorders and scroll down to 112.0 There is a single

If you live in another state, you will find the list of state Medicaid programs at application for all 64.82.65.67/medicaid/states.html MassHealth

Applying for MassHealth: programs, but you There is a single application for all the MassHealth programs. It’s called an MBR (medical benefit request form). Call the MassHealth Enrollment Center at must also fill out the 888-665-9993 for an application or download it from the MassHealth website at Child Disability www.mass.gov/masshealth. On the left side, click on “Individuals, Children and Families.” Then click on “How to Apply” and you’ll see the download for the MBR. You Supplement. must also fill out the Child Disability Supplement and submit that with your MBR. To do so, go to www.mass.gov and type child disability supplement in the Search box.

Types of MassHealth: MassHealth Standard: If your family income is less than 150 percent of the federal poverty level, your child will 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 any deductibles, co- payments and other costs not covered by your private insurer.

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), even if you have private health insurance, your family may choose to buy into the MassHealth system. This type of MassHealth is called 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 more you make, the more you pay. If you have many out-of-pocket expenses, such as deductibles, co-payments (for doctors’ visits, medications, hospitalizations), need diapers (for children older than 4) or durable medical equipment and have reached

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service limits (maxed out visits for physical, speech and language or occupational therapy) through your primary health insurer, CommonHealth is a way to ensure that your child receives all the necessary health services.

MassHealth Standard/CommonHealth Premium Assistance: This program provides financial assistance to families who have a family member who receives MassHealth Standard or MassHealth Commonhealth and who pay private health insurance premiums. To be eligible for Premium Assistance:  You must have at least one family member on MassHealth Standard or MassHealth Commonhealth.  You must pay the premiums on your private health insurance. If your employer pays your entire premium, you are not eligible for this benefit.  Your private insurance must offer the Commonwealth of Massachusetts required benefits. These include: early intervention, mental health and substance abuse treatment, hospice, other inpatient and outpatient services, physician, surgical, laboratory, radiological and maternity services, durable medical equipment, home health care services, ambulance transport and special formulas for people who need low protein foods.  Family income is not taken into account for program eligibility. To apply for this program, call 800-862-4840 and press 1. Be sure to say you are calling about the MassHealth Standard/CommonHealth Premium Assistance Program for a family member with a disability.

This information was provided by the Massachusetts Family-to-Family Health Information Center, a project of Mass Family Voices @ Federation for Children with Special Needs, and developed with funding from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, grant number H84MC08005.

The MA Family-to-Family Health Care Information and Education Center specializes in helping people understand and access the MassHealth system. For more information, questions or problems, call the MA Family-to-Family Health Information & Education Center at 800-331-0688 or e-mail [email protected] or visit www.massfamilyvoices.org.

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Are There Grants I Can Apply For?

All too often, parents of children with ASD incur unexpected and immense out-of- pocket costs for treatments and services. Unfortunately, in many cases insurance companies do not cover these expenses. Through the generosity of foundations and, sometimes, public funding, applicable grants might help parents offset these costs.

Please read each option carefully and understand that specific criteria pertain to each. Please note that this is not an exhaustive list, and information is subject to change.

Asperger Association of New England Family Grant Programs These programs are available to families who have a child with Asperger Syndrome or closely related disorder (high-functioning autism, nonverbal learning disability). AANE can transfer your application to similar programs listed below if one program or request cannot adequately meet your needs. 617-393-3824. www.aane.org

 Doug Flutie Jr. Foundation for Autism: Available to moderate and low-income families (see details below).

 Edwin Phillips Foundation: Cash assistance to families residing in Plymouth County, Massachusetts.

 Family grants: Sponsored by a private donor on a first come-first served basis.

For more information or an application, visit www.aane.org or call 617-393-3824.

Catastrophic Illness in Children Relief Fund Provides financial assistance to families in Massachusetts for expenses incurred for the medical and related needs of children under age 22 who are not otherwise covered by insurance, federal or state health-care assistance. Call 800-882-1435 or 617-624-6060 or visit www.mass.gov/cicrf

Consumer Empowerment Funds Program of the Massachusetts Developmental Disabilities Council This service provides funds for individuals who are legal MA residents with developmental disabilities and/or a family member or guardian to attend conferences, trainings, or other events in MA or another state. Applications must be approved before the event and be based upon set program guidelines. For more information call 617-770-7676 or visit www.mass.gov/mddc

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The Danny Foundation Funding ($100 to $500 per year) is available to individuals with autism and their families to help with costs for services and programs. Amounts are based upon financial need. The Danny Foundation is funded in part by the Doug Flutie Jr. Foundation for Autism. For more information call 781-784-7022.

The Department of Early Education and Care (EEC) The EEC provides assistance, information and funding options for services and child care for children, birth to age 5, and their families. Call 617-988-6600 or visit www.eec.state.ma.us

Doug Flutie Jr. Foundation for Autism Provides grants to IRS approved 501 c (3) organizations and qualified schools that in turn provide services, family support grants and resources to families. Call toll free 866-3AUTISM or 508-270-1855 or visit www.dougflutiejrfoundation.org

Easter Seals of Massachusetts Easter Seals offers a variety of programs and services for children and adults with disabilities and special needs. An assistive technology loan program and some funding are available. In Boston call 617-226-2640. In New Bedford call 508-992-3128. In Worcester call 800-244-2756 or visit www.ma.easterseals.com

Edwin Phillips Foundation This foundation provides grants directly to families who have children with disabilities, including physical and cognitive challenges. Funds can be used for more expensive projects or services such as assistive technology or home modifications. P.O. Box 610075, Newton, MA 02461-0075.

Helping Hand Program of the National Autism Center This program provides one-time grant awards per family based upon income, need and availability of funding. Grants awards are NOT given to families, but paid directly to vendor or service agency. Child must be ages birth to 18, reside in US, diagnosed with an autism spectrum disorder. For more information call 877-622-2884 or visit www.nationalautismassociation.org

Social Security Disability Insurance SSDI provides benefits to families because of a child’s disability, depending on income. To apply, call 800-772-1213 or visit www.socialsecurity.gov/disability

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What Books Might Be Helpful?

Learning the Basics Could It Be Autism? A Parent’s Guide to the First Signs and Next Steps by Nancy D. Wiseman. Broadway, 2006. www.firstsigns.org

Demystifying Autism Spectrum Disorders: A Guide to Diagnosis for Parents and Professionals by Carolyn Thorwath Bruey. Woodbine House, 2004. www.woodbinehouse.com

Early Intervention and Autism: Real Life Questions, Real Life Answers by James Ball. Future Horizons, 2008. www.fhautism.com

Helping Your Child with Autism Spectrum Disorder: A Step-By-Step Workbook For Ask at your local Families by Stephanie B. Lockshin, Jennifer M. Gillis and Raymond G. Romanczyk. Autism Support New Harbinger Press, 2005. www.newharbinger.com Center about its Overcoming Autism by Lynn Kern Koegel and Claire LaZebnik. Penguin Group, 2005. us.penguingroup.com lending library.

Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm. Future Horizons, 2005. www.fhautism.com

The Autism Sourcebook by Karen Siff Exkorn. Regan Books, 2006. www.harpercollins.com

The Mom’s Guide to Asperger Syndrome and Related Disorders by Jan-Johnston Tyler. Autism Asperger Publishing, 2007. www.asperger.net

Discovering Therapy Approaches A Work in Progress: Behavioral Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism, editors Ron Leaf and John McEachin. DRL Books, 1999. www.drlbooks.com

Behavioral Interventions for Young Children with Autism: A Manual for Parents and Professionals, editors Catherine Maurice, Gina Green, and Stephen Luce. Pro-Ed., 1996. www.proedinc.com .

Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think by Stanley Greenspan. Da Capo Press, 2006. www.perseusbooks.com

Raising a Child with Autism: A Guide to Applied Behavioral Analysis for Parents by Shira Richman. Jessica Kingsley Publishers, 2001. www.jkp.com

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Relationship Development Intervention: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD, and NDL by Steven E. Gutstein and Rachelle K. Sheely. Jessica Kingsley Publishers, 2002. www.jkp.com

Right from the Start: Behavioral Intervention for Young Children with Autism by Sandra L. Harris and Mary Jane Weiss. Woodbine House, 2007. www.woodbinehouse.com

Teaching Individuals with Developmental Delays: Basic Intervention Techniques by Ivar Lovaas. Pro-Ed., 2003. www.proedinc.com

The SCERTS Model: A Comprehensive Educational Approach for Children with Autism Spectrum Disorders by Barry M. Prizant. Brookes Publishing Company, 2005. www.brookespublishing.com

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz. Perigree Publishing, 2006. us.penguingroup.com

Obtaining Educational Services How to Compromise with Your School District Without Compromising Your Child: A Field Guide for Getting Effective Services For Children With Special Needs by Gary Mayerson. DRL Books, 2004. www.drlbooks.com

IEP and Inclusion Tips for Parents and Teachers: Handout Version by Anne Eason and Kathleen Whitbread. Attainment Company, 2006. www.attainmentcompany.com

The Complete IEP Guide: How to Advocate for Your Special Ed Child by Lawrence Siegel. Nolo Press, 2005. www.nolo.com

Wrightslaw: From Emotions to Advocacy, 2nd Edition: The Special Education Survival Guide by Pam Wright and Pete Wright. Harbor House Law Press, 2006. www.harborhouselaw.com

Wrightslaw: Special Education Law, 2nd Edition by Pam Wright and Pete Wright. Harbor House Law Press, 2006. www.harborhouselaw.com

Writing Measurable IEP Goals and Objectives by Barbara D. Bateman. Attainment Company, 2006. www.attainmentcompany.com

Improving Behavior, Communication and Social Skills Activity Schedules for Children with Autism: Teaching Independent Behavior by Lynn McClannahan. Woodbine House, 1999. www.woodbinehouse.com

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Do-Watch-Listen-Say: Social and Communication Intervention for Children with Autism by Kathleen Ann Quill. Brookes Publishing, 2000. www.brookespublishing.com

Freedom From Meltdowns: Dr. Thompson's Solutions For Children with Autism by Travis Thompson. Brooks Publishing, 2009. www.brookespublishing.com

Helping Children with Autism Become More Social by Ann E. Densmore. Praeger Publishing, 2007. www.praeger.com

Incorporating Social Goals in the Classroom: A Guide for Teachers and Parents of Children with High-Functioning Autism and Asperger Syndrome by Rebecca Moyes. Jessica Kingsley Publishers, 2001. www.jkp.com

It’s So Much Work to be Your Friend (Helping the Child with Learning Disabilities Find Social Success) by Richard Lavoie. Simon & Schuster, 2005. www.simonandschuster.com

More Than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder by Fern Sussman. Hanen Centre, 1999. www.hanen.org

Picture's Worth: Pecs and Other Visual Communication Strategies in Autism by Andy Bondy and Lori Frost. Woodbine House, 2001. www.woodbinehouse.com

Reaching out, Joining in: Teaching Social Skills to Young Children with Autism by Mary Jane Weiss and Sandra L. Harris. Woodbine House, 2001. www.woodbinehouse.com

Teaching Language to Children with Autism or Other Developmental Disabilities by Mark L. Sundberg and James W. Partington. Behavioral Analysts, Inc., 1998. www.behavioranalysts.com

The New Social Story Book by Carol Gray. Future Horizons, 2006. www.fhautism.com

With Open Arms: Creating School Communities of Support for Kids with Social Challenges by Mary Schlieder. Autism Asperger Publishing, 2007. www.asperger.net

Parenting Children with Special Needs Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations by Judy Winter. Jossey-Bass, 2006. www.josseybass.com

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Healthcare for Children on the Autism Spectrum: A Guide to Medical, Nutritional, and Behavioral Issues by Fred Volkmar and Lisa Wiesner. Woodbine House, 2004. www.woodbinehouse.com

Helping a Child with Nonverbal Learning Disorder or Asperger’s Disorder by Kathryn Stewart. New Harbinger Publications, 2007. www.newharbinger.com

Making Peace with Autism: One Family’s Story of Struggle, Discovery, and Unexpected Gifts by Susan Senator. Trumpeter Books, 2006. susansenator.com

More Than A Mom: Living a Full and Balanced Life When Your Child Has Special Needs by Amy Baskin and Heather Fawcett. Woodbine House, 2006. www.woodbinehouse.com The important

Parenting that Works: Building Skills that Last a Lifetime by Edward Christophersen thing is to learn and Susan Mortweet. American Psychological Association, 2003. www.apa.org/pubs which providers Parenting Your Asperger Child by Alan Sohn and Cathy Grayson. Penguin Group, 2005. us.penguingroup.com are likely to be

Raising Your Spirited Child: A Guide for Parents Whose Child is More Intense, most helpful, Sensitive, Perceptive, Persistent, and Energetic by Mary Sheedy Kurcinka. Harper effective, and Collins, 2006. www.harpercollins.com accessible to Siblings of Children with Autism: A Guide for Families by Sandra L. Harris and Beth A. Glasberg. Woodbine House, 2003. www.woodbinehouse.com your family.

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene. Harper Collins, 2005. www.harpercollins.com

Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd edition by Maria Wheeler. Future Horizons, 2007. www.futurehorizons-autism.com

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