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Family Supports

Raising a child with an autism spectrum disorder (ASD) can be overwhelming. You need to know that you are not alone.


Public awareness of autism is greater than ever, so there is broader understanding of the diagnosis and the challenges faced by these young people and their families.

There are also many more professionals coming into the field to provide clinical care, and a much more diverse corps of service providers who are available to help families.   

 

  • Department of Developmental Services

    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.

    The Support Center staff can also explain the benefits of applying for government funds and assistant programs through the Massachusetts Department of Development Disabilities (DDS). In Massachusetts, DDS provides a wide array of services and supports to children under 18 years of age with autism or other conditions. Currently, there are two types of services you can apply for within DDS if your child has an ASD.

    1. The DDS “Autism Division” only program is for children diagnosed with an autism spectrum disorder. Most children who qualify for these services do not have a secondary diagnosis of intellectual disability, global developmental delays or significant functional impairments, and therefore do not qualify for DDS Children’s Eligibility. Please remember to contact your local support center and complete the intake process, so that your family can access community-based social skills, sensory and family programs that are individually coordinated by the Autism Support Centers. These programs are of no or minimal cost to your family. Also note that each center raises private funds so they might coordinate other programs that do have participation fees. 

      For more information about the DDS Autism Division, contact the Autism Support Center that serves your area.
       
    2. The DDS “Dual Eligibility” status includes the Autism Division and DDS Children’s Eligibility. If your child also meets this Children’s Eligibility Criteria then you may be able to also access DDS service coordination and perhaps family support services based on the availability of funds.  In order to be eligibility for DDS Children’s services a child must have a diagnosis of a global developmental delay (under age 5), a diagnosis of a developmental disability (over age 5) and have 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. The DDS eligibility team will review your child’s documentation and come out for an in-home assessment. If your child is determined Dually Eligible for the Autism Division and DDS Children’s services then you will get connect with a local DDS Area Office to determine what supports are may be available for your child. 

      For information about the DDS eligibility guidelines and to download the Application for DDS Eligibility, go to www.mass.gov and type “DDS application” in the search engine or click here to go directly to the PDF. The regional office information is referenced on the same page as the application. It is important to send the completed application to your Regional Eligibility office or call 888-367-4435 with any questions. After you send in your application, 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, psychologist, an IEP, etc.).

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  • Autism Support Centers

    Some of the services offered at Autism Support Centers are:

    • Information and Referrals
    • Lending Library
    • Parent Support Groups
    • Sibling Workshops
    • Trainings and Consultations
    • Speaker Series
    • Open Gym and Swim Sessions
    • Family Events
    • Camp Listings
    • Newsletter
    • School Vacation Programs
       

    AUTISM ALLIANCE OF METROWEST in Natick                               
    Serves Metrowest, Middlesex West                        
    508-652-9900
    www.autismalliance.org

    AUTISM RESOURCE CENTER in West Boylston                      
    Serves Worcester, North Central & South Valley areas
    508-835-4278  
    www.autismresourcecentral.org

    AUTISM SUPPORT CENTER in Danvers
    Serves Northeast region
    978-777-9135
    www.ne-arcautismsupportcenter.org
     
    FAMILY AUTISM CENTER in Westwood                        
    Serves Norfolk County
    781-762-4001, Ext. 310 
    www.sncarc.org/FAC.htm

    COMMUNITY AUTISM RESOURCES in Swansea                          
    Serves Southeastern region, Cape Cod & Islands                           
    508-379-0371    
    www.community-autism-resources.com

    COMMUNITY RESOURCES FOR PEOPLE WITH AUTISM in Easthampton                    
    Serves Western region            
    413-529-2428   
    www.communityresourcesforautism.org

    TILL & BOSTON FAMILIES FOR AUTISM in Dedham                            
    Serves Greater Boston             
    781-302-4835         
    www.tillinc.org

    The Autism Consortium has a comprehensive RESOURCE DATABASE with hundreds of autism-related listings, such as summer camps, after-school programs, ABA providers, social skills groups, education consultants, and much more!

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  • Autism Resources

    Autism Resources

    Advocates for Autism-Massachusetts (AFAM)
    A parent-founded and -driven advocacy group for increasing the awareness of autism spectrum disorders and the current and pending legislation in Massachusetts.
    781-891-6270 
    www.afamaction.org

    Asperger’s Association of New England (AANE)
    A comprehensive resource and support center serving the Boston and New England area for individuals with Asperger Syndrome and high-functioning autism (adults, teens, children) and their families. AANE has an excellent website including a database of support groups, family grants, specialized programs, books and articles, conferences, trainings and more. Staff members include service coordinators for adults, teens, and children.
    617-393-3824
    www.aane.org

    Autism Insurance Resource Center
    This Center provides information to the public about insurance coverage under the law, An Act Relative to Insurance Coverage for Autism (ARICA) which took effect in Massachusetts on January 1, 2011. 
    800-642-0249
    www.disabilityinfo.org/arica

    Autism Special Education Legal Support Center at Massachusetts Advocates for Children
    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. 224
    www.massadvocates.org/autism-center.php

    Charles River Center
    This Center provides employment and job training, residential homes, therapeutic day programs, and recreational programs for children and adults with developmental disabilities.  The Center also coordinates a travel readiness program with Logan Airport for families of children with autism who have difficulty with airline travel and security screeners. Please contact them for more detailed information.
    781-972-1000  
    www.charlesrivercenter.org

    Doug Flutie Junior Foundation for Autism
    Raises public awareness and supports families and organizations through grants. Provides education, resources, and links about autism.
    508-270-8855 or 866-3AUTISM
    www.dougflutiejrfoundation.org

    Massachusetts Disability Resources

    ARC of Massachusetts
    A statewide resource that provides advocacy and support for individuals with intellectual and developmental disabilities, such as autism, through the 22 ARC chapters.
    781-891-6270
    www.arcmass.org.

    Department of Public Health / Children & Youth With Special Health Care Needs (CYSHCN) Program
    The CYSHCN program helps families coordinate their child’s medical, social and educational needs.  This program offers a Community Support Line where Resource Specialists offer technical assistance to parents.  The Care Coordination Program has Care Coordinators, who speak both English and Spanish, available to provide consultative services to parents who have a child with complex medical needs. 
    800-882-1435 
    www.mass.gov/dph/specialhealthneeds

    Early Intervention and Specialty Service Providers 
    For information about services for children under three in Massachusetts.
    Go to www.mass.gov and type Early Intervention in the Search box.
    800-905-8437

    For information about Specialty Services such as ABA or Floortime, call: 

    Tracy Osbahr
    Early Intervention intensive services coordinator  
    413-586-7525

    Eye Safety, Vision Care & Finding an Eye Care Provider
    MA Department of Health and Human Resources

    Family Ties of Massachusetts 
    A statewide information and parent-to-parent support program for families of children with special needs and chronic illnesses. Offers a comprehensive resource directory.
    800-905-TIES (8437) or 617-541-2875 
    www.massfamilyties.org

    Mass Family Voices/Massachusetts Family-to-Family Health Information Center
    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 x210
    www.massfamilyvoices.org

    Mass Family Voices Listserv 
    This listserv allows families raising children and youth with special healthcare needs to share resources and information, post question and answers, so that listserv members can learn and support each other.  Membership is free and confidential. 
    Please send an e-mail to massfv@fcsn.org for more details. 

    Parent/Professional Advocacy League (PAL)
    Statewide parent support organization for children’s emotional, behavioral, and mental health needs.
    Boston: 617-542-7860 or 866-815-8122
    Worcester: 508-767-9725  
    www.ppal.net

    Sibling Support Project 
    This is a national program dedicated to supporting the concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.  There are also local service providers who host workshops, and listservs to support siblings of people with special needs. 
    www.siblingsupport.org

    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.  
    800-882-1435

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

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  • Important Websites

    Community Activities/ Recreation

    Autism Speaks 
    www.autismspeaks.org

    Federation for Children with Special Needs
    www.fcsn.org

    Special Olympics
    www.specialolympicsma.org

    Social Skills

    Asperger’s Association of New England
    www.aane.org/asperger_resources/social_skills_groups.html

    Michelle Garcia-Winner
    www.socialthinking.com/what-is-social-thinking/about-michelle-garcia-winner

    Carol Grey/Social Stories
    www.thegraycenter.org/

    Massachusetts Department of Education/Special Education/Parent Information
    www.doe.mass.edu/sped/ parents.html

    A Parent’s Guide to Special Education
    www.fcsn.org/parentguide/ pgintro.html

    Massachusetts

    Federation for Children with Special Needs
    Service Area: Statewide
    www.fcsn.org
    800-331-0688

    Urban Pride
    Service Area: Boston
    www.urbanpride.org
    617-206-4570

  • Resources by New England State

    Content Quicklinks

    Massachusetts:

    Children’s Law Center of Massachusetts
    Provides legal services to low income children, and information and training to parents.
    781-581-1977 
    www.clcm.org

    Disability Law Center 
    Offers legal advice for children who have disabilities; sometimes takes cases for free.
    Boston, 617-723-8455 or 800-872-9992.
    Western Massachusetts, 413-584-6337 or 800-222-5619 
    www.dlc-ma.org/Priorities/index.html

    EdLaw Project
    Provides legal representation, technical assistance, and training to families of low-income children in Boston in danger of not receiving appropriate education services.
    Call Marlies Spanjaard at 617-989-8150
    Or visit their website: www.youthadvocacydepartment.org/edlaw/edlaw-about.html

    Eye Safety, Vision Care & Finding an Eye Care Provider
    MA Department of Health and Human Resources

    Federation for Children with Special Needs 
    Updated federal and state special education laws, advice, information, and access to advocacy, IEP development and related resources, parent information guides, and statewide parent workshops.  
    Boston office: 617-236-7210 or 800-331-0688.
    Western Mass. office: 413-323-0681 or 866-323-0681.
    www.fcsn.org

    Parent Training and Information – Spanish www.fcsn.org/pti/espanol/index.php
    Parent Training and Information – Portuguese www.fcsn.org/pti/portuguese/index.php

    Special Needs Advocacy Network (SPAN)
    Provides a list of special education advocates. Fees vary. Also offers workshops.
    508-655-7999.
    www.spanmass.org
     
    Massachusetts Dept 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 procedural safeguards manual for working with your district’s special education department.
    781-338-3000
    www.doe.mass.edu/sped/parents.html  

    Program Quality Assurance
    Call if you are having problems with the school district and ask to speak to the contact person for your town or city.
    781-338-3700
    www.doe.mass.edu/pqa/

    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 your district’s special education office or visit www.concordspedpac.org/Pacs-in-Mass.html or www.spedchildmass.com/support_groups_sepacs.  Also visit www.masspac.org for more information.

    SPEDWatch 
    Grassroots nonprofit social change movement working to secure the educational rights of all Massachusetts schoolchildren with disabilities.
    www.spedwatch.org

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

    New Hampshire:

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

    The Birchtree Center
    Provides specialized educational services for children and youth with autism. Portsmouth. 
    603-433-4192 
    www.birtchtreecenter.org

    Department of Education
    603-271-3494.
    http://www.education.nh.gov/instruction/special_ed/index.htm

    Easter Seals Autism Network 
    Family Support Program: Offers support meetings, parent education, respite program. Manchester.
    603-623-8863
    www.nh.easterseals.com

    Jacob’s Bridge Through Autism
    Developed by parents, has listing of local and national resources.
    Plymouth.
    www.jbtautism.org
      
    New Hampshire Resource Center on Autism Spectrum Disorders 
    At the Institute on Disability at UNH.
    603-228-4230 
    www.iod.unh.edu/PriorityAreas/autism

    Parent Information Center
    Information about special education laws and advocacy in New Hampshire
    603-224-7005
    www.parentinformationcenter.org

    Southeastern Regional Education Service Center 
    Education and behavioral support programs and services for families and schools; has specific autism services. Bedford.
    603-206-6800
    www.seresc.net/ed_autism.php 

    Rhode Island:

    Autism Project of Rhode Island: Family support, resources, and education
    401-785-2666
    www.theautismproject.org
      
    Autism Society of America (Rhode Island chapter)
    401-595-3241
    www.asa-ri.org

    Department of Elementary and Secondary Education
    401-222-8999  
    www.ride.ri.gov

    Families for Effective Autism Treatment of Rhode Island
    401-886-5015
    www.featri.org

    Rhode Island Developmental Disabilities Council
    401-737-1238
    www.riddc.org

    Rhode Island Department of Education special education services 
    401-222-4600
    www.iser.com/state-gov/special-needs-RI.html 

    Rhode Island Disability Law Center
    401-831-3150
    www.ridlc.org

    Rhode Island Parent Information Network 
    401-270-0101
    www.ripin.org

    Connecticut:

    Autism Society of America (Connecticut chapter)  
    888-453-4975.
    www.asconn.org

    Connecticut Autism Spectrum Resource Center
    203-265-7717.
    www.ct-asrc.org

    Connecticut Families for Effective Autism Treatment 
    860-571-3888 
    www.ctfeat.org
     
    Connecticut Parent Advisory Center
    860-739-3089
    www.cpacinc.org

    Connecticut State Department of Education 
    860-713-6543.
    www.sde.ct.gov

    Hartford-New Haven Community Parent Resource Center (CPRC)
    860-297-4358
    www.parentcenternetwork.org 

    Stamford Education 4 Autism
    203-322-9767
    www.stamfordeducation4autism.org  

    Maine: 

    Autism Society of America (Maine chapter)
    800-273-5200.
    www.asmonline.org  

    Children’s Behavioral Health Services (Department of Health & Human Services)
    (207) 287-5060
    www.maine.gov/dhhs/ocfs/cbhs/index.shtml

    Center for Community Inclusion & Disability Studies at the University of Maine
    207-581-1084 
    www.ccids.umaine.edu

    Department of Education:
    www.maine.gov/education/speced/index.htm

    Developmental Disabilities Council of Maine
    www.maineddc.org
       
    Disability Rights Center
    800-452-1948 
    www.drcme.org
     
    Maine Parent Federation 
    800-870-7746 
    www.mpf.org

    Vermont:

    Autism Society of America (Vermont chapter) 
    www.autism-info.org

    Autism Support Daily 
    802-985-8773
    www.autismsupportdaily.com  

    Department of Education
    802-828-5116 
    www.education.vermont.gov/new/html/pgm_sped.html 

    Vermont Division of Disability Autism Supports 
    802-241-2863 
    www.ddas.vermont.gov/ddas-programs/programs-autism-default-page 

    Vermont Autism Task Force 
    www.autismtaskforce.com

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  • National Resources

    National Resources

    American Academy of Pediatrics 
    http://asdinfo.org/1apMI4d

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

    Autism Society of America 
    Oldest parent advocacy group. Offers many resources. Provides annual conference and state chapters.
    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. www.autismspeaks.org

    Also offers a free comprehensive guide to the first 100 days after diagnosis which is available in English and Spanish. Download the PDF here

    Wrights Law autism information 
    Special education laws and advocacy information.
    www.wrightslaw.com/info/autism.index.htm

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

    Parent Training and Information Centers & Community Parent Resource Centers

    Each state has at least one parent center serving families of children and young adults from birth to age 22 with disabilities. Parent Centers help families obtain appropriate education and services for their children with disabilities; train and inform on a variety of topics; resolve problems; and connect children to community resources that address their needs. 

    For information and to locate the Parent Center in your state, go to www.taalliance.org/ptidirectory/pclist.asp or call 888-248-0822

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  • Grants

    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.

    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.


    Act-Today for Autism
    Awards grants up to $5000 to families, with priority given to those with a household income under $100,000. Funding may be used for ABA, speech, OT, medications, & home safety devices. 19019 Ventura Blvd. Suite 200 Tarzana, CA 91356; 818-705-1625. http://www.act-today.org/act-today-grant-program.php

    Asperger Association of New England Family Grant Programs
    Offers the Rainy Day Fund for Adults for adults with Asperger Syndrome in crisis ($50-$100) or Family grants: Sponsored for a child with Asperger Syndrome or closely related disorder, such as PDD-NOS or high-functioning autism. 617-393-3824. http://www.aane.org/aane_services/grant_programs.html

    Autism Family Resources
    Families with a household income below $50,000 can apply for a one-time grant totaling $500. Money may be used to cover therapy equipment, safety equipment, and respite care. 3535 Eastside Hwy. Stevensville, MT 59870
    autismfamilyresources.org/needassistance2.htm

    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. 800-882-1435 or 617-624-6060. www.mass.gov/cicrf   

    Children’s Charity Fund
    Provides funds for medical or educational supplies, open to all incomes. 6623 Superior Ave Suite B, Sarasota, FL 34234; 800-643-5787. http://www.childrenscharityfund.org

    Community Block Grants
    Home modification grants may be available by contacting your local city government.

    Consumer Empowerment Funds Program
    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. Applications must be approved before the event and be based upon set program guidelines. 1150 Hancock Street, 3rd Floor, Suite 300
    Quincy, MA 02169.  617-770-7676 ext.115. http://www.mass.gov/anf/employment-equal-access-disability/disability-info-and-resources/dev-disabilities-info/citizen-empowerment/council-empowerment-funds-program.html 

    The Department of Early Education and Care (EEC)
    Provides assistance, information and funding options for services and child care for children, birth to age 5, and their families. 617-988-6600. http://www.mass.gov/edu/birth-grade-12/early-education-and-care/financial-assistance/financial-assistance-for-families/ 

    Doug Flutie Jr. Foundation for Autism
    Provides computers to families of children with autism who otherwise couldn’t afford to buy one under the Laurie Flutie Computer Initiative. Provides a one-year subscription and free activation to LoJack SafetyNet under the Flutie Family Safe & Secure Program to families who could not otherwise afford it.  508-270-8855, Framingham, MA. http://www.dougflutiejrfoundation.org/Programs.asp    

    Easter Seals of Massachusetts Assistive Technology Loan Program
    Offers Massachusetts residents with disabilities and their families low-interest cash loans they can use to purchase assistive technology, devices and services that will increase their independence.  The program also loans low-cost assistive devices through its Long-Term Device Loan Program; 508-751-6431 or 508-751-6428, or email MassATLoan@eastersealsma.org.   http://ma.easterseals.com/site/PageServer?pagename=MADR_ATloanpressrelease

    Edwin Phillips 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. http://www.edwinphillipsfoundation.org

    Financial Assistance
    Autism Speaks maintains a database of local and national foundations and agencies that offer grants and support for families who are dealing with an autism diagnosis.
    http://www.autismspeaks.org/family-services/community-connections/financial-assistance  

    First Hand Foundation
    Provides funds to families with limited incomes for Medical/psychiatric services, vehicle modification, transportation or items not covered by insurance. 2800 Rockcreek Parkway, Kansas City, MO 64117; 816- 201-1569. www.cerner.com/firsthand/FirstHand_1a.aspx?id=28729

    Home Modification Loan Program
    Provides financing to disabled, cognitive, developmental, environmental sensitivity and neurological disabled persons and their families. Borrowers must reside in the home being modified. Contact RCAP Solutions Financial Services at 978-630-6725.
    http://www.rcapsolutions.org/financial_services.htm

    Individual Development Accounts
    IDAs are special savings accounts that match the deposits of low and moderate income people to save towards the purchase of a lifelong asset, such as a home.
    To find a program near you, go to the IDAnetwork website at http://cfed.org/programs/idas/directory_search/   

    Knights of Columbus
    Families with children under the age of 20 who need wheelchair ramps, hearing aids, or stair lifts may be awarded grants of up to $5,000 from the Knights of Columbus Charitable Fund. 470 Washington St, Suite 6, Norwood, MA 02062; 781-551-0628.
    www.massachusettsstatekofc.org

    National Autism Association
    Provides a one-time grant up to $1500 to families whose household earns less than $50,000 to help support tuition, supplements/medication, medical evaluation or testing, therapies, etc. 22136 Westheimer Pkwy. #623, Katy, TX  77450; 877-622-2884.
    www.nationalautismassociation.org/helpinghand.php

    Social Security Disability Insurance
    Provides benefits to families because of a child’s disability, depending on income. To apply, call 800-772-1213. http://www.socialsecurity.gov/disability/disability_starter_kits_child_eng.htm

    United HealthCare Children’s Foundation
    Households with private-pay or employer insurance (MassHealth/Medicaid subscribers do not qualify) may receive up to $5,000 annually/$10,000 lifetime to support their child, who must be 16 years of age or less. MN012-S286, PO BOX 41, Minneapolis, MN 55440-0041; 800-992-4459. www.uhccf.org/apply_applicant.html

    Wish Upon a Hero Foundation
    Individuals and families with financial need may submit “wishes” to this organization, which provides grants and other forms of charity to chosen applicants. 1640 Nixon Drive, Suite 336 Moorestown, NJ 08057 foundation@wishuponahero.com