• 18 to 22, have not passed MCAS, and are eligible for special education services as documented through an Individualized Education Program (IEP); or
• 20 to 21, have passed MCAS, but are still eligible for special education with an Individualized Education Program (IEP) because of significant functional disabilities, transition needs, etc.

http://www.mass.edu/strategic/read_maicei.asp

• United Arc Positive Parenting Resource Center
  • The Positive Parenting Resource Center provides services and support families headed by parents with cognitive challenges, intellectual limitations or learning disabilities. | https://theunitedarc.org/positiveparenting
  • The New England Coalition for Supporting Parents with Cognitive Challenges publishes the Positive Parenting Quarterly.
• The National Research Center for Parents with Disabilities 
  • The National Research Center for Parents with Disabilities is a collaborative research and advocacy project that aims to support parents with disabilities. We are housed at the Lurie Institute for Disability Policy at Brandeis University and collaborate with other institutions, including Northeastern University and Dartmouth University. We combine research expertise and first-hand experience to create a comprehensive resource for a variety of stakeholders, including parents, family members, clinicians, policymakers and disabled parents. | http://heller.brandeis.edu/parents-with-disabilities/

• SPED Child and Teen: Website and newsletter which lists programs and services available in Massachusetts | http://www.spedchildmass.com/
• New England Index: This website has thousands of listings of programs, services, and professionals serving people with disabilities living in Massachusetts. It features guided searches, Google search appliance capabilities, and field-level searching. The web site’s appearance can be significantly yet easily changed based upon a visitor’s preference. | https://disabilityinfo.org/
• Family Ties Resource Guide: Family TIES of Massachusetts produces this annual Directory of Resources to assure everyone has access to the kinds of information that our staff offers to families and professionals who support children and youth with special needs. | http://massfamilyties.org/info/directory.php
• MassOptions: MassOptions connects elders, individuals with disabilities and their caregivers with agencies and organizations that can best meet their needs. | https://www.massoptions.org

• Disabilities and Faith: http://www.disabilitiesandfaith.org
• The Arc of the United States on Spirituality: https://www.thearc.org/who-we-are/position-statements/life-in-the-community/spirituality

• Choosing a Lawyer to Help Plan for the Future: https://dev-the-arc-of-mass-archive.pantheonsite.io/wp-content/uploads/2017/05/CFP_FindLawyer.pdf
• Legal Planning For Special Families in Massachusetts: A Family Guide to SSI, Guardianship and Estate Planning, by Barbara Jackins:
  • Legal Planning for Special Needs is a must have resource for parents of children with disabilities and the professionals and advocates who assist them. In an easy-to-read, conversational style, the author covers the essential elements of SSI, guardianship, and estate planning when there is a child with a disability in the family. This book, which updates an earlier edition, covers the 2009 changes in the Massachusetts guardianship laws. | https://www.disabilitiesbookspress.com/product/legal-planning-for-special-needs-in-masschusetts/
• Letter of Intent: The Letter of Intent is a document that you create that passes vital information about a person with a disability to future caregivers. It defines the person’s routines, preferences, contacts and vision for the future.  It is not a legal document but is often kept with other important legal papers such as a will or special needs trust.
  • The Arc of United States Center for Future Planning (also available in Spanish) | https://futureplanning.thearc.org/pages/learn/where-to-start/expressing-wishes-for-the-future
  • Northeast Arc Footprints for the Future – A Personal Planning Guide | https://ne-arc.org/wp-content/uploads/2017/07/footprints_for_the_future.pdf
  • Special Needs Financial Planning | http://info.specialneedsplanning.com/blog-1/bid/226415/A-Sample-Letter-of-Intent-for-Caregivers
  • https://dev-the-arc-of-mass-archive.pantheonsite.io/wp-content/uploads/2017/05/CFP-Letters-of-Intent.pdf
• Special Needs Alliance (SNA): The Special Needs Alliance (SNA) is a national organization comprised of attorneys dedicated to the practice of disability and public benefits law. Individuals with disabilities, their families and their advisors rely on the SNA to connect them with nearby attorneys who focus their practices in the disability law arena. | https://www.specialneedsalliance.org/
• The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life, by John W. Nadworny, CFP®, CHFC and Cynthia R. Haddad, CFP®:
  • Help protect and improve the future lives of entire families with this essential financial planning guide, ideal for parents of a child with a disability and service providers who support them. Developed by two financial planning experts who also have family members with special needs, this one-of-a-kind book is an absolute must-have as parents and other caregivers plan for the lasting financial independence of their families.Transforming the financial planning presentations they’ve given to families across the country into a thorough, easy-to-read resource, the well-known authors give parents a chronological guide broken down into four critical life stages, so readers can turn right to the section that applies to them. For each stage from birth to adulthood, parents will get comprehensive advice and strategies on how to address:
    • Financial factors – including mortgages and other expenses, insurance policies, investments, and savings
    • Legal factors – such as conducting estate planning, weighing guardianship with less restrictive alternatives, and creating a Special Needs Trust to ensure a child’s future
    • Government factors – identifying and supplementing government benefits, such as residential services, supported employment, and respite care
    • Family and support factors – such as the family’s values, the parents’ careers, sibling considerations, and contributions of extended family members
    • Emotional factors – such as dealing with both positive and negative feelings, staying connected with others, and using strong emotions to fuel advocacy
  • Included are all the tools families need to create an effective action plan for their finances: planning checklists and forms, a helpful glossary of financial terms, “planning pointers” that help readers remember key points, and extended case studies dramatizing other families’ evolving challenges and solutions. Plus, the CD-ROM in the back of the book contains a helpful Financial Planning Timeline and a printable Letter of Intent that lets parents communicate key information, concerns, and desires to future caretakers.
  • A book parents will use for the rest of their lives – and a necessary addition to the reference library of every service provider – The Special Needs Planning Guide will awaken families’ awareness about financial planning, give them what they need to get it done, and help them turn their dreams for their future into reality. To Order call 1-800-638-3775 (M-F, 8am -5pm), or buy online at Brookes Publishing.

• MassHealth Homepage: In Massachusetts, Medicaid and the Children’s Health Insurance Program (CHIP) are combined into one program called MassHealth. MassHealth members may be able to get doctors visits, prescription drugs, hospital stays, and many other important services. | https://www.mass.gov/topics/masshealth
• MassHealth Eligibility: https://dev-the-arc-of-mass-archive.pantheonsite.io/wp-content/uploads/2016/11/MassHealth-Eligibility-FINAL.pdf
• MassHealth Services: Find information and links for MassHealth members. | https://www.mass.gov/masshealth-service
• MassHealth Guide (March 2018):
  

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• MassHealth Changes (Through June 2018):
  • 1. MassHealth Innovations Narrative
  • 2. MassHealth Enrollment Flyer (ENG/SP)
  • 3. MassHealth Payment and Care Delivery Innovation
  • 4. A short summary of frequently asked questions
    Prepared by The Arc of Massachusetts, with assistance from The Arc of Greater Haverhill-Newburyport
  • 5. MassHealth’s FAQs on Continuity of Care
• MassHealth Coverage Types: Learn about MassHealth coverage types for individuals and families including people with disabilities. | https://www.mass.gov/service-details/masshealth-coverage-types-for-individuals-and-families-including-people-with
• Massachusetts Health Connector: The Massachusetts Health Connector offers health and dental coverage from the state’s leading insurers — and provides tools that make it easier to find out what cost savings you and your family may be eligible for. | http://caringhealth.org/navigators.html

• Dual eligibility: Some people who are eligible for both Medicare and Medicaid are called “dual eligibles.” If you have Medicare and full Medicaid coverage, most of your health care costs are likely covered.

• ARICA FAQs: ARICA (An Act Relative to Insurance Coverage for Autism) is a law passed in 2010, requiring private health insurers in Massachusetts to provide coverage for the diagnosis and treatment of Autism Spectrum Disorder. The legislation affects only certain types of health care policies, so coverage under ARICA depends on the type of policy you have. | https://massairc.org/information-about-the-massachusetts-insurance-law/arica-faq/

• Massachusetts General Hospital – The Lurie Center for Autism: The Lurie Center is a multidisciplinary program designed to evaluate and treat children, adolescents and adults with a wide variety of conditions including autism and autism spectrum disorder, Asperger syndrome and developmental delays. It is the clinical arm of the Lurie Center for Autism, which also has research, advocacy and training programs. | https://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1614
• Tufts Medical Center – Floating Hospital for Children: Floating Hospital for Children is the full-service pediatric hospital of Tufts Medical Center, an internationally respected academic medical center. We are proud to be the principal pediatric teaching and research institution for Tufts University School of Medicine. A major academic medical institution with innovative programs in clinical care, research, education and health care delivery, Floating Hospital offers a full range of inpatient and outpatient services in every area of pediatric specialization for infants through adolescence. | https://www.floatinghospital.org
• Massachusetts General Hospital – Down Syndrome Program: The Mass General Hospital Down Syndrome Program integrates state-of-the-art resources with compassionate, comprehensive care through a multi-disciplinary approach. National experts from Massachusetts General Hospital, MassGeneral Hospital for Children, and Massachusetts Eye and Ear Infirmary are ready to help your family member with any medical issue that may occur. | https://www.massgeneral.org/children/services/treatmentprograms.aspx?id=1701
• UMass Medical Center – Children’s Down Syndrome Program: An estimated 5,000 individuals with Down syndrome live in Massachusetts. Of those, approximately 25 percent reside in Central and Western Massachusetts. With the growing number of patients with Down syndrome in our region, families are faced with the challenge of finding coordinated, specialized services and medical care close to home. There is no longer a need to travel far for excellent medical care for your child/adolescent. With the help of the Massachusetts Down Syndrome Congress, UMass Memorial Children’s Medical Center now offers The Down Syndrome Program, a dedicated multidisciplinary center for infants, children and adolescents with Down syndrome. | https://www.umassmemorialhealthcare.org/umass-memorial-medical-center/services-treatments/childrens-medical-center/z-list-pediatric-services/down-syndrome-program
• Boston Children’s Hospital – Down Syndrome Program: The Down Syndrome Program was founded in 1967, and is housed in the Developmental Medicine Center at Boston Children’s Hospital. The program is one of the oldest and largest of its kind, offering multidisciplinary health care for people with Down syndrome from birth until they reach age 22. With each appointment, we are also able to make referrals and connections with any of the other specialty clinics at Boston Children’s. The Down Syndrome Program is more than a clinic, however. We strive to provide resources, advocacy, and supports to all families, depending on their individual needs. | http://www.childrenshospital.org/centers-and-services/programs/a-_-e/down-syndrome-program
• Boston Children’s Hospital – Autism Spectrum Center: We provide comprehensive, family-centered diagnostic and care services for children with autism spectrum disorder, together with strong family support. Depending on your child’s needs, we can coordinate visits with autism specialists such as developmental behavioral pediatricians, child neurologists, psychologists, psychiatrists, geneticists and gastroenterologists, as well as physical, occupational, and speech and language therapists. If you already have a health care provider you like, we can provide any medical services you need to fill in the gaps. | http://www.childrenshospital.org/Centers-and-Services/Programs/A-_-E/autism-spectrum-center-program

• Benefits for Children with Disabilities: A booklet for the parents, caregivers, or representatives of children under age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. Designed to help you decide if your child might be eligible for Social Security or SSI, and to help you apply for benefits if your child is eligible. A publication of the U.S. Social Security Administration. | https://www.ssa.gov/pubs/EN-05-10026.pdf
• Supplemental Security Income (SSI) and Social Security Disability (SSDI): Social Security pays disability benefits to people who can’t work because they have a medical condition that’s expected to last at least one year or result in death. Find out if you qualify and how Social Security can help you. | https://www.ssa.gov/benefits/disability/

• DDS Eligibility Fact Sheet: https://dev-the-arc-of-mass-archive.pantheonsite.io/wp-content/uploads/2016/11/DDS-Eligibility-Final.pdf
• This Autism Home and Community-Based Services (HCBS) Waiver Program is designed to provide services to help children with autism remain in their homes and actively participate in their families and their communities. | https://www.mass.gov/dds-autism-waiver-services-0
• The DDS DESE Program facilitates effective transitions from school life to more independent life within the community for students receiving publicly funded special education services who also meet the DDS eligibility criteria for services. | https://www.mass.gov/dds-dese-program
• DDS Family Support: DDS provides funding for family support programs and services that provide information, assistance, and an array of supportive services to families with children & adults with disabilities who are living at home. | https://www.mass.gov/dds-family-support
• DDS Family Support Services Information: https://www.mass.gov/lists/dds-family-support-services-information
• DDS Family Support Frequently Asked Questions:
  

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• Medically Complex Programs provide a family-driven model of care which supports families with children and young adults having significant cognitive, physical, and complex health care needs who are living at home. The goal is to provide comprehensive wrap-around supports, which consist of specialized case management activities that help families integrate the variety of resources and supports they are receiving in order to care for their family member at home.This Program complements and is supplemental to other MassHealth, state plan and third party insurers and provides vital assistance to families who need help in coordinating all of the in-home care they receive. This program offers an array of support options to families (parents and siblings) to keep their family member at home and allow for a meaningful quality of life for all, and helps to prevent outof-home placements in a pediatric nursing home or residential school.Children must meet specific eligibility criteria for participation in this Program and referral for Program services is made by the local DDS Area Offices. However, Program staff are available to provide information and referral services to families and/or provide consultation to staff working with families who have a child/young adult with significant medical, physical and cognitive challenges.For a list of programs, please visit: https://www.mass.gov/files/documents/2016/07/pe/family-support-directory.pdf#page=21
• There are seven Autism Support Centers throughout the state that provide an array of information and referral services, resources, and supports to children and young adults with autism spectrum disorders. | https://www.mass.gov/service-details/dds-autism-support-centers

• Services for Children Under 19: Working to meet the needs of children and their families. | https://www.mass.gov/department-of-mental-health-child-youth-and-family-services-under-19

• The goal of the Division for Children & Youth with Special Health Needs is to promote good health and quality of life for all children and youth with special health care needs and their families. | https://www.mass.gov/orgs/division-for-children-youth-with-special-health-needs

• Formerly known as the Department of Public Welfare, this is the state agency responsible for administering public assistance programs for needy citizens of Massachusetts. Programs DTA oversees include:
  • Transitional Aid to Families with Dependent Children (TAFDC)
  • Emergency Aid to the Elderly, Disabled and Children (EAEDC)
  • Food Stamp Benefits
  • Emergency Assistance (EA)
  • Supplemental Security Income (SSI)http://www.mass.gov/eohhs/gov/departments/dta/

• MassHealth Homepage: In Massachusetts, Medicaid and the Children’s Health Insurance Program (CHIP) are combined into one program called MassHealth. MassHealth members may be able to get doctors visits, prescription drugs, hospital stays, and many other important services. | https://www.mass.gov/topics/masshealth
• MassHealth Eligibility: https://dev-the-arc-of-mass-archive.pantheonsite.io/wp-content/uploads/2016/11/MassHealth-Eligibility-FINAL.pdf
• MassHealth Guide (March 2018):
  

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• Personal Care Attendant (PCA) Program:https://www.mass.gov/files/documents/2016/07/wm/pca-consumer-handbook.pdf

• Eligibility for MCB Services: Learn about the eligibility requirements to access services offered by MCB. | https://www.mass.gov/eligibility-for-mcb-services
• Benefits For Individuals Who Are Legally Blind: Once you are registered with MCB, you are eligible for several benefits. | https://www.mass.gov/benefits-for-individuals-who-are-legally-blind
• MCB’s Support Services include Assistive Technology (AT), Orientation and Mobility (O&M), and Vision Rehabilitation Therapy. | https://www.mass.gov/mcb-support-services

• MCDHH provides accessible communication, education, and advocacy to consumers and private and public entities so that programs, services, and opportunities throughout Massachusetts are fully accessible to persons who are deaf and hard of hearing. | https://www.mass.gov/orgs/massachusetts-commission-for-the-deaf-and-hard-of-hearing

• Transition to adult services can be a stressful time in the lives of people with intellectual disabilities, including autism and their families.  The days of a close knit school community and entitlement services come to an end.  Families and their young adults are faced with a world that can be hard to maneuver, difficult to access and where a whole new language is spoken.  What can families and students due to prepare?
  • Start Early! Transition services begin at age 14 in Massachusetts and planning is conducted with the school system.  Transition planning starts with a vision of the student and family on what will occur after they leave school.  From here, a plan can be outlined on how this vision may be achieved.  This plan is easily incorporated into the IEP for many goals including independent living, career readiness and employment, recreation and leisure academics and more!
  • Team Process The most successful plans I have seen is where all IEP team members take responsibility- including students, family members and educational professionals. Here are some ideas that you may want to begin in the home:
    • Think about first jobs- helping a neighbor with pet care or gardening or perhaps visiting an elder and taking out their trash.
    • Completing chores and learning about different types of jobs when visiting businesses in the local community.
    • Participating in community and school events with peers.
    • Setting an alarm clock to wake for school, making school lunches, food shopping and preparing simple meals.
    • Teaching skills that develop as much independence as possible for personal care needs.
  • Teach Disability Awareness and Decision Making Adolescence can be an emotional time with the many physical and emotional changes going on.  These roller-coaster years are probably are not the best time to begin discussing their disabilities or differences.  Begin early on!
  • A student I worked with was interested in attending a community college after graduation. As part of his IEP he practiced disclosing his strengths and challenges and would ask his teachers for specific modifications to meet his needs.  By rehearsing this he was better prepared to access support through this college disability services and his professors.Students should not only attend their IEP meeting but be prepared to be an active participant.  Using power point presentations, portfolios or introducing their team members help to teach that they have a voice in creating plans that will support their futures.  Look at incorporating a person centered approach at the start of the meeting-
    • What is their vision?
    • What does the student do well?
    • What is important to them? What are their preferences?
    • What are the challenges?
    • What strategies support the student? How do they learn best? Who can help?
  • Students with medical needs will need to learn the vocabulary and procedures that are needed to keep them healthy.   Consider technology for communication to access medication lists, schedules and procedures. Have them be part of the interview process for aides who will be providing personal care.  Talk about their personal and professional networks.  Discuss who can be accessed to help them when various needs arise. Remember that your sons and daughters reach the age of majority at 18.   You are no longer your child’s voice unless alternative arrangements have been made. Have family conversations and discussions that include their participation, input and ideas.
  • Utilize Assessments and Evaluations Most public schools begin helping students explore their skills and interests in the 8^th grade.   Waiting until transition students turn 18 to venture into the world of internships or first jobs does not give adequate time for exploring career interests or their participation. Assessments and evaluations conducted by schools and outside professionals can help lead the students down a path that can be suited to their needs.  These assessments and evaluations are part of transition planning and can be included in the IEP.
  • Access State Benefits and Resources There are many state resources that your sons and daughters may benefit from. Learn about:
    • Chapter 688 (Planning for adult services at age 18 or 2 years before graduation)
    • Career development and employment through Massachusetts Rehabilitation Commission which may begin at age 16
    • Adult services from The Department of Developmental Services including services for adults with intellectual disabilities, adult autism, Prader-Willi Syndrome and Smith Magenis Syndrome and Acquired Brain Injury
    • Mass Health – Pays for many services including day habilitation, transportation, medical care, Personal Care Assistance and Adult Family Care. Look into Premium Assistance Programs from Mass Health.  Use a navigator for support
    • If you have a son or daughter with Autism contact the Autism Insurance Resource Center
    • Apply for Social Security benefits- be sure to have no more than 2,000 in their name
    • Look into ABLE Accounts
    • For more information on these programs visit https://dev-the-arc-of-mass-archive.pantheonsite.io/resources/services/
  • Prepare for the Age of Majority! At age 18, your sons and daughter are viewed as legally competent to make their own decisions and apply for benefits. Investigate ways to support their independent decision making
    • Supported Decision making
    • Medical Proxy
    • Appointment of advocate
    • Power of Attorney
    • Representative payee
    • Investigate guardianship if necessary.  Guardianship is not a parent decision.  It is based on a clinical team report and a court hearing.
  • Meet with State Service Agencies If your son or daughter is eligible for state services invite your representative to the IEP.  Invite them to come to your home and meet your sons and daughters or schedule a meeting in their office.  Remember to give your young adult a voice as much as possible. Share your vision and have your son or daughter share theirs.  (It may not always be the same!) Ask for literature on available services and programs in your area.  Start visiting programs.
  • Lessons Learned or Advice from Students and Families
    • Don’t Assume!  Adult services are not an entitlement and you may not be given adequate or any funding for services
    • Applying for SSI, and investigating guardianship and applying for state services is only one step of the transition process
    • Attend workshops, webinars and conferences on transition topics.  Mark your calendars for The Arc of Massachusetts Transition Conference on November 4, 2017 at the College of Holy Cross, Worcester.
    • The more you know what is needed the more successful your transition can be.  Learn about all the options
    • Consider a person centered plan.  Strive to have a balance of paid support, family and community supports
    • You will need to learn a new language – but it was kind of like the college process and can be done.
    • Network with other families – what was their experience.  What would they do differently?
    • Re-energize and be prepared to advocate!  Our kid’s services depend on the state dollars.  Join with other advocacy groups!
    • Be patent most of the time communication is slow.  There are lots of layers and people can’t always get back to you quickly.  It doesn’t mean they don’t care or they are not doing their job
    • Take care of yourself.  Write a journal and share your story
    • Listen to your sons and daughter’s vision and wishes remember it is their future.  It is ok to make mistakes and change direction
    • More information on Transition and Turning 22 click on this link https://dev-the-arc-of-mass-archive.pantheonsite.io/resources/transition/
    •  To find a Chapter of The Arc in your area visit https://dev-the-arc-of-mass-archive.pantheonsite.io/about/chapters/

• English Guide: https://www.mass.gov/files/documents/2018/02/15/resource-guide-transition-aged-youth-and-young-adults-14-22-years-with-autism-spectrum-disorder.pdf
• Spanish Guide: https://www.mass.gov/files/documents/2018/03/14/SPANISH-ASD-Transition-Source-Guide-14-22yrs.pdf
• Portuguese Guide: https://www.mass.gov/files/documents/2018/03/14/PORTUGUESE-ASD-Transition-Source-Guide-14-22yrs.pdf
• Vietnamese Guide: https://www.mass.gov/files/documents/2018/03/14/VIETNAMESE-ASD-Transition-Source-Guide-14-22yrs.pdf
• Chinese Guide: https://www.mass.gov/files/documents/2018/03/14/CHINESE-ASD-Transition-Source-Guide-14-22yrs.pdf
• Haitian Creole Guide: https://www.mass.gov/files/documents/2018/03/14/HAITIAN%20CREOLE-ASD-Transition-Source-Guide-14-22yrs.pdf

• The link covers ICE (Inclusive Concurrent Education) grant program for young adults aged 18-22 with intellectual disabilities and autism spectrum disorder. ICE links public institutions of higher education with school district in order to give access to attend college courses in an inclusive manner, participate in college campus life, and to develop important employment an independent living skills. MAC also provides important information about transition law (beginning at transition age 14), and implementation guidelines for parents/professionals.
• The MAC link also focuses on the project “Boston Transition,” with the goal to increase employment, education, career and independent living opportunities for young people with disabilities in Boston.
• http://massadvocates.org/transition/

• The Arc of Massachusetts Official Facebook Page: https://www.facebook.com/thearcofmass/
• Connecting Real Lives Facebook Page: https://www.facebook.com/ConnectingRealLives/
• Nicky’s Law Facebook Group: https://www.facebook.com/groups/284125382009278/
• Operation House Call (OHC) Facebook Group: https://www.facebook.com/groups/451119258361547/
• Supporting Families Facebook Group: https://www.facebook.com/groups/1478235615834109/

• The Arc of Massachusetts Official Twitter: http://twitter.com/thearcofmass
• Leo Sarkissian, Executive Director: https://twitter.com/Leo5632
• Maura Sullivan, Director of Government Affairs: https://twitter.com/MauraAtTheArcMA
• Kerry Mahoney, Director of Outreach and Education: https://twitter.com/KerryAtTheArcMA

• The Arc of Massachusetts Official Instagram: http://instagram.com/thearcofmass

• The Arc of Massachusetts Official LinkedIn: https://www.linkedin.com/company/2458740

• The Arc of Massachusetts Official YouTube Channel: http://youtube.com/ArcofMass