Links Module 12

SECTION 2: Strategies for Customization

Adapting and Making Accommodations for Students with Disabilities

The following resources provide guidance on working with students with a variety of disabilities. The resources provide information about adaptations that can be made to instructional techniques and accommodations that can be provided to increase inclusion in the classroom.

Teaching Students with Disabilities
Source: Vanderbilt University Center for Teaching
Link: cft.vanderbilt.edu/guides-sub-pages/disabilities/

Successful Strategies for Teaching Students with Learning Disabilities
Source: Learning Disabilities Association of America
Link: ldaamerica.org/successful-strategies-for-teaching-students-with-learning-disabilities/

Teaching Students with Disabilities
Source: Center for Teaching and Learning, University of Washington
Link: www.washington.edu/teaching/topics/inclusive-teaching/teaching-students-with-disabilities/

Teaching Students with Disabilities
Source: University of Rochester
Link: www.rochester.edu/college/teaching/teaching-guidance/students-with-disabilities.html

Etiquette for Working with Students with Disabilities
Source: Best Colleges
Link: www.bestcolleges.com/resources/disability-etiquette/

Students with Disabilities in the College Classroom
Source: HEATH Resource Center at the National Youth Transitions Center
Link: www.heath.gwu.edu/students-disabilities-college-classroom

College for Students with Disabilities: A Guide for Students, Families, and Educators
Source: Maryville University
Link: online.maryville.edu/disabilities-guide/

Tips for Teaching Students with Disabilities
Source: The University of Wyoming — University Disability Support Services
Link: www.uwyo.edu/wind/echo OR www.uwyo.edu/wind/index.html

Invisible Disabilities and Postsecondary Education
Source: DO IT Center, University of Washington
Link: www.washington.edu/doit/invisible-disabilities-and-postsecondary-education
Related Video – Captioned and Audio Described (18:44 minutes)
Link: www.washington.edu/doit/videos/index.php?vid=36

How to Teach and Accommodate
Source: University of Massachusetts Dartmouth
Link: www.umassd.edu/dss/resources/faculty-staff/how-to-teach-and-accommodate/

23 Ways to Communicate with a Non-Verbal Child
Source: Special Needs Resources
Link: www.friendshipcircle.org/blog/2013/04/16/23-ways-to-communicate-with-a-non-verbal-child/

Instructional Strategies
Source: Understood: for Learning & Attention Issues
Link: www.understood.org/en/school-learning/partnering-with-childs-school/instructional-strategies

At a Glance: Classroom Accommodations for Nonverbal Learning Disabilities
Source: Understood: for Learning & Attention Issues
Link: www.understood.org/en/school-learning/partnering-with-childs-school/instructional-strategies/at-a-glance-classroom-accommodations-for-nonverbal-learning-disabilities

Customizing the Lesson Using Presentation Material and Interactive Exercises

There are three sets of resources provided that can be woven together to customize the learning experience, depending on your goals as an instructor for this particular lesson on the Changing Roles – From Parent to Partner (e.g., providing a very simple introduction versus teaching the basics as a platform for having students engage in deeper learning about complex examples). These include: (1) advance preparation material that students can review; (2) a set of PowerPoint slides that can be used in a lecture and discussion format; and (3) a set of interactive exercises to stimulate applied learning, creativity, and deeper thinking about the concepts.

1.    Advance Preparation Material for Parents

This lesson provides a very simple, high-level overview of Changing Roles – From Parent to Partner. The goal is to introduce parents to the topic Changing Roles – From Parent to Partner and provide examples of skills they can work on with their children to prepare them to transition into adulthood. Suggested resources for advance preparation include readings about transition and some of the skills needed such as: Planning Early – Transitioning to Adulthood; Laws That Protect Your Child’s Rights; Money Management, ABLE Accounts, and Benefits Planning; Supporting Your Young Adult in Making Daily & Major Life Decisions; Employment Skills Development; Housing; Health Care; Post-Secondary Training and Education Programs; and Planning for the Future.

As noted, these materials can be provided in advance to students, or if the class session is long enough, they may be used in class prior to presenting the PowerPoint slides and getting into a specific discussion of transitioning from youth to adulthood. Alternatively, they could be used as both advance preparation (pre-homework) and repeated in class to reinforce the learning.

2.   PowerPoint Slides

The PowerPoint slides can be used in class to provide an overview of Changing Roles – From Parent to Partner. Combined with the interactive exercises, the presentation can be extended to cover a long class session or multiple smaller class sessions. The slides can also be presented on their own as part of a short lesson on Changing Roles – From Parent to Partner.

3.   Interactive Exercises

Several interactive exercises are provided to engage parents in considering specific examples that relate to the material “Changing Roles-From Parent to Partner.”  For example, while the presentation material focuses on exploring and developing skills and understanding, an interactive exercise reinforces the learning in the module.  Therefore, the exercise provides a greater understanding of the changing roles parents have in their child’s life and helps parents understand how to support their child as they transition to adult roles.

 

 

SECTION 3: Suggested Advance Preparation for Facilitators

Planning Early – Transitioning to Adulthood

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Parents’ Guide to Transition
Source: HEATH Resource Center at the National Youth Transitions Center
Link: www.heath.gwu.edu/parents-guide-transition

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

Laws That Protect Your Child’s Rights

About Individuals with Disabilities Education Act (IDEA)
Source: U.S. Department of Education
Link: sites.ed.gov/idea/about-idea/

Protecting Students with Disabilities: Frequently Asked Questions About Section 504 and the Education of Children with Disabilities
Source: U.S. Department of Education
Link: www2.ed.gov/about/offices/list/ocr/504faq.html

An Overview of the Americans with Disabilities Act
Source: ADA National Network
Link: adata.org/factsheet/ADA-overview

Money Management, ABLE Accounts, and Benefits Planning

ABLE National Resource Center
Description: Accurate information about federal- and state-related ABLE programs and activities, including guidance on tax-advantaged ABLE savings accounts.
Source: ABLE National Resource Center
Link: www.ablenrc.org

Public Benefits
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/financing-the-future/public-benefits

Money Smart for Young People
Source: Federal Deposit Insurance Corporation (FDIC)
Link: www.fdic.gov/consumers/consumer/moneysmart/young.html

Special Needs Trusts
Source: The ARC Center for Future Planning
Link:
futureplanning.thearc.org/pages/learn/where-to-start/financing-the-future/special-needs-trusts

Home & Community-Based Services 1915(c)
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

State Medicaid Plans and Waivers
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies

Supporting Your Young Adult in Making Daily & Major Life Decisions

Supported Decision Making

Book: Supported Decision Making – From Justice for Jenny to Justice for All
Authors: Jonathan Martinis, J.D., and Peter Blanck, Ph.D, J.D.
Description: The book tells the story of Jenny Hatch, young woman with Down syndrome who was living her life the way she wanted. She had a job, her own apartment, participated in her community, and spent time with friends. Then, in August 2012, a person in Jenny’s life wanted to become her guardian. Jenny lost her rights under guardianship and won them back when she showed the court that she uses Supported Decision-Making (SDM) to make her own decisions with help from people she trusts. The book also shows how a person can use Supported Decision Making in his/her life, with family members, or with people you support. It will give provide practical tips and model language to help you request, receive, and use SDM in the programs and life areas people with disabilities use every day, including Special Education, Vocational Rehabilitation, Person Centered Planning, Health Care, Money Management, and others.
Link: www.amazon.com/Supported-Decision-Making-Justice-Jenny/dp/1693400251

Charting the Life Course – Experiences and Questions Booklet – A Guide for Individuals, Families, and Professionals
Source: Supported Decision-Making New York
Link: lifecoursetools.com/wp-content/uploads/PA-LC-EXPERIENCES-BOOKLET-2016.pdf

Supported Decision-Making Teams: Setting the Wheels in Motion
Source: National Resource Center for Supported Decision-Making
Link: supporteddecisionmaking.org/resource_library/supported-decision-making-teams-setting-the-wheels-in-motion/

Supported Decision Making Brainstorming Guide
Link: supporteddecisionmaking.org/resource_library/supported-decision-making-brainstorming-guide/
Source: National Resource Center for Supported Decision-Making

Supporting Daily & Major Life Decisions
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions

Jenny Hatch Justice Project
Description: The Jenny Hatch Justice Project provides tools, advocacy, information, research for people with disabilities, families, advocates, attorneys, professionals they need to protect and promote the rights of people with disabilities to make their own choices and determine their paths and directions in life.
Link: jennyhatchjusticeproject.org

Other Support Models for Decision Making

Help for agents under a power of attorney
Source: Consumer Financial Protection Bureau
Link: files.consumerfinance.gov/f/documents/cfpb_msem_power-of-attorney_guide.pdf

When a Representative Payee Manages Your Money
Link: www.ssa.gov/pubs/EN-05-10097.pdf
Source: Social Security Administration

Giving Someone a Power of Attorney For Your Health Care
Source: The Commission on Law and Aging American Bar Association
Link: www.americanbar.org/groups/law_aging/resources/health_care_decision_making/power_atty_guide_and_form_2011/

Employment Skills Development

Helping Youth Develop Soft Skills for Job Success: Tips for Parents and Families
Source: National Collaborative on Workforce and Disability for Youth
Link: www.ncwd-youth.info/wp-content/uploads/2016/11/infobrief_issue28_0.pdf

Housing

Tips When Considering Housing and Services
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-48.pdf

Finding Housing for Youth with Disabilities Takes Determination and Creativity
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-37.pdf

Health Care

Transition to Adulthood: A Health Care Guide for Youth and Families
Source:  Autistic Self Advocacy Network (ASAN)
Link: autisticadvocacy.org/wp-content/uploads/2014/07/ASAN-healthcare-toolkit-final.pdf

Transition to Adult Health Care
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/transition-to-adult-health-care.asp

A Young Person’s Guide to Health Care Transition
Source: National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
Link: www.ncwd-youth.info/wp-content/uploads/2017/09/Young-Persons-Guide-to-Health-Care-Transition.pdf

State Medicaid Plans and Waivers
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies

Healthcare.gov Portal – Definition of Authorized Representative
Link: www.healthcare.gov/glossary/authorized-representative/
Source: U.S. Centers for Medicare & Medicaid Services

MedlinePlus Medical Encyclopedia – Definition of Health care agent
Source: U.S. National Library of Medicine, U.S. Department of Health and Human Services, and National Institutes of Health
Link:
medlineplus.gov/ency/patientinstructions/000469.htm

Post-Secondary Training and Education Programs

A Transition to Post-secondary Education and Employment for Students and Youth with Disabilities
Source:  United States Department of Education, Office of Special Education and Rehabilitative Services
Link: sites.ed.gov/idea/files/postsecondary-transition-guide-may-2017.pdf

Planning for the Future

The ARC’s Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/future-planning-101

Build Your Plan by the ARC
Description: Planning for the future is important for all families. You can’t do it just once. It’s an ongoing process. The Build Your Plan ® tool helps people with intellectual and developmental disabilities (I/DD) think about and plan for their future. The interests, preferences, and skills of the person with I/DD are the main focus. The tool guides you through important topics, including:

  • Expressing wishes for the future in writing
  • Deciding where to live and how much support is needed
  • Paying for basic and other needs
  • Getting a job and other daily activities
  • Making daily and major life decisions
  • Making friends and having good relationships

Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/landing

More Than Just a Job: Person-Centered Career Planning
Source: Institute for Community Inclusion
Link: www.communityinclusion.org/article.php?article_id=16

Person-Centered Planning
Source:  National Parent Center on Transition and Employment
Link:  www.pacer.org/transition/learning-center/independent-community-living/person-centered.asp

 

 

SECTION 4: Suggested Advance Preparation for Parents

Planning Early – Transitioning to Adulthood

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Parents’ Guide to Transition
Source: HEATH Resource Center at the National Youth Transitions Center
Link: www.heath.gwu.edu/parents-guide-transition

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

Supporting Your Young Adult in Making Daily & Major Life Decisions

Charting the Life Course – Experiences and Questions Booklet – A Guide for Individuals, Families, and Professionals
Source: Supported Decision-Making New York
Link: lifecoursetools.com/wp-content/uploads/PA-LC-EXPERIENCES-BOOKLET-2016.pdf

Employment Skills Development

Helping Youth Develop Soft Skills for Job Success: Tips for Parents and Families
Source: National Collaborative on Workforce and Disability for Youth
Link: www.ncwd-youth.info/wp-content/uploads/2016/11/infobrief_issue28_0.pdf

Planning for the Future

Person-Centered Planning
Source:  National Parent Center on Transition and Employment
Link:  www.pacer.org/transition/learning-center/independent-community-living/person-centered.asp

 

 

SECTION 5: Presentation

Pre-Module for the Training Facilitator:

Facilitator Note: Record responses during this activity and save the list for an activity at the end of this module.

Facilitator Script: “As your students begin to advocate for themselves and to increase their independence, your role begins to shift from that of a protective parent to that of a supportive and guiding partner. This transition is a challenge for any parent. Let’s celebrate by making a list of the ways your students are beginning to make their own decisions or to advocate for themselves, and the milestones they will be facing in the near future as they increase their independence and make their own choices. This might include spending more time or later hours away from home, finding a job for the first time, learning to drive, moving into an apartment with friends, and so on. As parents, let’s think of the things that give us pride or concern us as our students increase their independence and build their self-advocacy skills, and we will put those things that concern us on our list.”

Record all responses from the group.

Facilitator Script: “Today we are going to talk about the challenge of changing roles from parent to partner.

Facilitator Note: Use the Module 12 PowerPoint slides, Pathways to Careers… Changing Roles – From Parent to Partner.

 

 

Module 12 PowerPoint slides, Pathways to Careers… Changing Roles – From Parent to Partner

Slide 1 – Pathways to Careers…. Changing Roles – From Parent to Partner

Slide 1 Notes – Pathways to Careers…. Changing Roles – From Parent to Partner

Objective: Parents will explore the skills needed to support their child as he/she moves from school to adulthood.

Facilitator Talking Points:

During this time, we will discuss several skills needed for your child to leave school and live as independently as possible in the community.

Slide 2 – Your Child’s Life Journey

Slide 2 Notes – Your Child’s Life Journey

Objective: Parents will review their child’s life journey and discuss the needed steps for their child to work and live independently in the community.

Facilitator Talking Points:

As parents, we have watched our children come into this world as tiny babies, grow into toddlers and preschoolers, and go to elementary, middle, and high schools. We have a memory of each milestone tucked into our hearts and brains. Now, our babies are getting ready to graduate and enter the “real world.” Each child will make his or her own path in life. Your child may decide to go straight to work, go to a technical or vocational school, a college or university, or return home to explore life options. No matter which path your child takes, it is a time of change for everyone in the family.

You and your child are entering a new phase of life. All parents experience a roller coaster of emotions when their child is graduating from high school. There are so many options and even more questions: Will my child go to college? Community college? Will he or she choose to begin a career or work right out of high school? Will he or she volunteer for a year or two? It is exciting, frightening and can be overwhelming.

Parents of students who have a disability may have increased anxiety and even more questions. The challenges of moving into the next phase of life may be overwhelming. The family has many of the same questions listed above. However, they may also have additional concerns. Will my child be able to work? What benefits are available, if any? Is my child ready for college? Are there programs that can help my child in college? Can my child live on his or her own? How do I prepare financially for my child’s needs after high school?

This process can feel confusing, but you are not alone. Today, we are going to explore some steps that you and your child can take to smooth the path of transition from high school to adulthood.

Sources:

Parents’ Guide to Transition
Source: HEATH Resource Center at the National Youth Transitions Center
Link: www.heath.gwu.edu/parents-guide-transition

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

 

 

Slide 3 – Step #1: Start planning early

Slide 3 Notes – Step #1: Start planning early.

Objective: Parents will understand the importance of early planning for their child’s transition from high school to adulthood.

Facilitator Talking Points:

Planning for your child’s transition from a teenager to adulthood is one of the most important things you can do to pave the way to a successful future.

A child’s Individualized Education Program (IEP) requires transition planning and services required by the age of 16, or younger, if determined appropriate by the IEP Team. These goals and services must be updated on a yearly basis and more often, if needed.

You and your son or daughter will start learning new skills side-by-side. These skills might include employment “soft skills,” budgeting, or enhancing your child’s skills in other areas of interest.

Regardless of your teen’s ability, your child can, and should, take an active role in the transition journey, and in determining his or her own life. It is important for parents to provide encouragement and guidance along the way.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

A Transition to Post-secondary Education and Employment for Students and Youth with Disabilities
Source:  United States Department of Education, Office of Special Education and Rehabilitative Services
Link: sites.ed.gov/idea/files/postsecondary-transition-guide-may-2017.pdf

Slide 4 – Step 2: Learn about the laws that protect your child’s rights.

Slide 4 Notes – Step 2: Learn about the laws that protect your child’s rights.

Objective: Parents will be able to identify the laws that protect the rights of their child with a disability.

Facilitator Talking Points:

There are many federal laws that protect your child with a disability and give them certain rights. Today, we will discuss three of those laws.

The Individuals with Disabilities Education Act is also known as I-D-E-A (also pronounced “idea”). The IDEA is a federal law that makes public education available to eligible children with disabilities including infants, toddlers, children, and youth with disabilities. Sometimes you will hear this called FAPE, which means Free and Appropriate Public Education (FAPE). The IDEA ensures special education and related services to these children throughout the United States. IDEA requires public schools to create an Individualized Education Plan (IEP) for each student each year. While FAPE under the IDEA does not include education beyond grade 12, States and school districts are required to continue to offer to develop and implement an IEP for an eligible student with a disability who graduates from high school with something other than a regular high school diploma. States set the upper age limit for school services. A student with a disability who has not graduated high school with a regular high school diploma may receive educational services with an IEP until the student’s 22nd birthday.

Section 504 of the Rehabilitation Act protects the rights of individuals with disabilities in programs and activities that receive Federal money from the U.S. Department of Education or other federal government agencies. This includes public elementary and secondary schools.

The Americans with Disabilities Act (ADA) is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. As your child prepares for life after high school, the ADA will apply in many areas – employment, public and private colleges or universities and access to private businesses. It is important for your teen to understand his/her rights under the ADA especially as it related to employment and services at public and private colleges or universities.

Facilitator Note: Refer to Module 1: Pathways to Careers: An Americans with Disabilities Act (ADA) Roadmap for additional information.

Sources:

About Individuals with Disabilities Education Act (IDEA)
Source: U.S. Department of Education
Link: sites.ed.gov/idea/about-idea/

Protecting Students With Disabilities: Frequently Asked Questions About Section 504 and the Education of Children with Disabilities
Source: U.S. Department of Education
Link: www2.ed.gov/about/offices/list/ocr/504faq.html

A Transition to Post-secondary Education and Employment for Students and Youth with Disabilities
Source:  United States Department of Education, Office of Special Education and Rehabilitative Services
Link: sites.ed.gov/idea/files/postsecondary-transition-guide-may-2017.pdf

Slide 5 – Step 3: Expand your child’s social and community support networks.

Slide 5 Notes – Step 3: Expand your child’s social and community support networks

Objective: The student will discuss how a program can be made accessible for his/her disability related needs.

Facilitator Talking Points:

As children with disabilities become adults with disabilities, they may need support from a variety of people and places. These are known as social and community networks. Almost all of us have some kind of network that supports us. Our networks might be family, friends, a faith-based community, professional groups, recreational groups, and sports leagues. These networks provide more than fun. They are also important tools that help connect us to our community and provide a wider network of support.

It is important to start early to help your child develop his/her own support networks. Who do you know in your family, social group, professional circle, faith-based community, or other groups who could help provide social, recreational, work, or volunteer experiences for your young adult? These support networks can help your child to develop social relationships. Recreational experiences help build a bridge to new friendships, potential employment opportunities, and a wide range of natural community supports.

You may also consider contacting adults in the community who have the same disability as your son or daughter. These adults can provide information about the types of supports they use and share guidance with you and your teen as he/she moves into adulthood. Centers for Independent Living provide peer mentoring for young people.

Allowing your son or daughter to develop new relationships and friendships, and building natural and shared relationships is an important first step for all young adults.

Source:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

 

 

Slide 6 – Step 4: Help your child develop self-advocacy skills.

Slide 6 Notes – Step 4: Help your child develop self-advocacy skills.

Objective: Parents will be able to identify the key self-advocacy items that their teen needs to learn as they transition to adulthood.

Facilitator Talking Points:

Up until this point in your child’s life, you, as the parent, have made all the decisions for him or her. You were the one advocating on their behalf and making sure your child’s best interests were always met. Now, your child is in middle school or high school. He/she may be able to advocate on his/her behalf. This is called self-advocacy. Self-advocacy is knowing what you need, speaking up for yourself about the things you want, understanding your rights, and getting help from people you trust when you need to make big decisions. It is important to teach your child how to self-advocate. This will allow your child to voice their concerns and will help you to see what their abilities are.

Include your child as much as possible with the decision-making about moving from high school to adulthood. We encourage you to talk with your child about what they want for their future. While asking them questions about where they see themselves in five or ten years, teach them to continue to voice these desires. Remember, it is important to support the dreams, thoughts, and opinions of your son or daughter. He or she will have their own opinions and dreams about his/her future. Your son or daughter’s priorities may be different than your priorities. Work together with your student to identify the needed steps for future planning so that he/she can reach their goals and dreams.

All young people need a strong sense of their strengths, abilities, interests, and values. A student with a disability also needs to be aware of how their disability might affect them at work, in the community, and in their educational pursuits. The student should be able to explain their  disability it to others, when needed. Helping a young person to understand and talk about his/her disability is one step to giving them the power to take on adult responsibilities of work, education, and independent living. Disability is natural and should be celebrated as one of the many things that make your child who he/she is.

Many young adults know that they have received special education services but do not understand why. They may not have realized the supports they need in employment or independent living to be successful, which may cause unnecessary frustration and low self-esteem.

Transition from high school to adulthood is a time to explore how the young person will talk about his/her disability in different settings and ask for any support or accommodation they will need. You can make sure your child has a variety of opportunities to learn and practice self-advocacy skills in the classroom, at student work sites, and in the community.

Facilitator Note: Refer to Module 2: Disclosure Decisions and Talking About My Disability and Module 5: Advocating for My Rights Under the ADA for additional information.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Slide 7 – Step 5: Connect with adult service providers

Slide 7 Notes – Step 5: Connect with adult service providers

Objective: Parents will understand the importance of connecting with adult service providers prior to their child’s graduation from high school.

Facilitator Talking Points:

When your child graduates from high school, the special education services they have received throughout school will end. This includes disability-related services such as accommodations, transportation, physical or speech therapy, and job development services.

Young adults and their families must take responsibility for evaluating, applying for, and coordinating these services when the student graduates. All of these services and others, if available, will possibly be provided by different state or local agencies. Each agency usually has its own application process and program requirements. These programs include vocational rehabilitation services, supports for people with intellectual or developmental disabilities, public mental health services, and supplemental security benefits.

It is important to work together with the IEP team to determine the adult services that are needed, prepare for program requirements, and contact the services. If you have a case manager through a state or local agency, you may also want to request assistance to apply for and get the needed adult services and benefits.

Start early! Establish these connections before graduation, whenever possible. The earlier you start the process the smoother things will be when your child graduates from high school.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

Slide 8 – Step 6a: Practice money management skills with your child

Slide 8 Notes – Step 6a: Practice money management skills with your child.

Objective: Parents will identify ways that they can practice money management skills with their child.

Facilitator Talking Points:

Financial education is an important part of transition. Young people need to develop money management skills by budgeting, saving, and spending. Learning these skills at a young age will assist him/her as they transition to adulthood.

Parents can use these real-world methods to practice money management skills.

  • Help your child make a budget for his/her allowance, earnings, or cash gifts.
  • Open a savings account in your child’s name.
    • Talk to your current bank about the best options for your child.
    • Many banks or credit unions have savings accounts just for children.
  • Work with your child to deposit part of his/her allowance, earnings, or cash gifts so that he/she becomes familiar with financial institutions. This can be done in person, via websites, and banking apps.
  • Teach your child how to use an ATM card for saving and withdrawals.
  • Include your child in family budget decisions, as appropriate.
    • You can do this with the everyday budget that includes the rent or mortgage, groceries, entertainment, car payment, insurance, etc.
    • You can also include the in talks about large purchases for the home, family trips, and insurance.

As a young person moves from high school to working and living on his/her own with adult responsibilities, these money experiences will allow them to participate more fully in their own life decisions.

Source:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

 

 

Slide 9 – Step 6b: Practice money management skills with your child.
(Explore ABLE Accounts)

Slide 9 Notes – Step 6b: Practice money management skills with your child. (Explore ABLE Accounts)

Objective: Parents will gain a basic understanding of ABLE accounts.
Facilitator Talking Points:

ABLE accounts are tax-advantaged savings accounts for eligible individuals with disabilities. An ABLE account does not negatively impact a person’s continued eligibility for federal benefits, such as healthcare, Social Security, and food and housing assistance.

In order to be eligible for an ABLE account, a person must have a disability that happened before the age of 26 and meet the severity of disability requirement by: receiving SSI or SSDI (Social Security Disability Insurance); or having a disability certification signed by a licensed physician.

Sources:
ABLE National Resource Center
Web Link: ablenrc.org

Slide 10 – Practice money management skills with your child.
(ABLE Accounts and Qualified Disability Expenses)

Slide 10 Notes – Practice money management skills with your child.
(ABLE Accounts and Qualified Disability Expenses)

Objective: Parents will be able to list at least three Qualified Disability Expenses for an ABLE account.
Facilitator Talking Points:

ABLE account funds may be used for qualified disability expenses, or QDEs. QDEs may include any expense related to the beneficiary as a result of living a life with a disability. Examples of qualified disability expenses include, but are not limited to:

  • Education
  • Housing
  • Transportation
  • Employment training and support
  • Assistive Technology and related services
  • Health
  • Prevention and wellness
  • Financial management and administrative services
  • Legal fees
  • Expenses for oversight and monitoring
  • Funeral and burial expenses
  • Basic living expenses like food
  • Other expenses approved by the Secretary of the U.S. Treasury

 

 

Slide 11 – Step 6d: Practice money management skills with your child.
(Learn about Special Needs Trusts.)

Slide 11 Notes – Step 6d: Practice money management skills with your child.
(Learn about Special Needs Trusts.)

Objective: Parents will understand how a special needs trust can provide additional money for an adult child receiving public benefits.
Facilitator Talking Points:

As a parent, we want to make sure that our adult child with a disability receives public benefits for which they are eligible. Examples of public benefits include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid, Medicaid Home and Community Based Services (HCBS), Supplemental Nutrition Assistance Program (SNAP), and Housing Choice Vouchers (Section 8).

Facilitator Note: Refer to Slide 13: Step #7b: Benefits Planning – Benefit Types for more information about public benefits.

We also want to make sure that adult child with a disability is able to use money that they receive from family, friends, or other funding sources. One way to do this is to set up a special needs trust. a legal method that provides a way to manage money for the benefit of a person who needs some help in daily living. A special needs trust would be money that the young adult can use in addition to his/her public benefits.

There are two basic kinds of special needs trusts:

  1. A first-party special needs trust can be funded by a person’s own money.
    Examples: payment from a lawsuit or a lump sum payment from Social Security
  2. A third-party special needs trust has money placed in the trust by family members or other people or organizations.
    Examples: gifts, inheritance, or life insurance payout

By using a special needs trust, families can provide on-going support to an individual with a disability even after the parents or caregivers have passed away. Medicaid and SSI also have limits on how much a person may earn and in how much he or she may have in assets. If a person goes over those income or asset limits, he or she may lose those benefits and vital services may stop.

Special needs trusts can used to purchase many goods and services not covered by SSI and the Medicaid program in the individual’s state. Examples include:

  • Dental care costs, foot care, and special therapies not covered by Medicaid or Medicare
  • Service animal and assistive technology expenses
  • Communication devices and computers
  • Family trips and other recreational activities
  • Car insurance

If you are interested in setting up a special needs trust for your young adult, we encourage you to contact a lawyer to discuss details.

Source:

Special Needs Trusts
Source: The ARC Center for Future Planning
Link:
futureplanning.thearc.org/pages/learn/where-to-start/financing-the-future/special-needs-trusts

An ABLE account does not negatively impact a person’s continued eligibility for federal benefits, such as healthcare, Social Security, and food and housing assistance.

In order to be eligible for an ABLE account, a person must have a disability that happened before the age of 26 and meet the severity of disability requirement by: receiving SSI or SSDI (Social Security Disability Insurance); or having a disability certification signed by a licensed physician.

Sources:
ABLE National Resource Center
Link: ablenrc.org

 

 

Slide 12 – Step 7a: Benefits Planning – Get Organized

Slide 12 Notes – Step 7a: Benefits Planning – Get Organized

Objective: Parents will be able to make a list of the items needed to prepare for benefits planning for their child after high school.
Facilitator Talking Points:

As our children get ready to leave high school, we have many concerns. At the top of that list are questions about your child’s medical care and financial benefits. Your child may choose to go to work, live at home, or go to a technical school, college, or university. No matter which path he/she takes, he/she may qualify for benefits such as Social Security

To prepare for this transition, start by getting organized:

  • Make a list of all of the benefits your child receives, whether they are in the form of monetary payments or support services. This list may include Social Security checks, Medicaid, school services, and any other service your child is receiving because of his/her disability.
  • Make a list of your child’s doctors and the therapies your child receives. This list may include medical doctors, a counselor, physical therapist, speech therapist, occupational therapist, and any other person your child see because of his/her disability.
  • Make a list of your child’s current medications.

Be sure to organize your paperwork in one place. This includes medical records, school records, your child’s birth certificate and social security card, contact information for the medical providers, therapists and services you use, and any other information about your child’s disability.

Source:
The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

 

 

Slide 13 – Step 7b: Benefits Planning – Benefit Types

Slide 13 Notes – Step 7b: Benefits Planning – Benefit Types

Objective: Parents will identify the benefits for which their child may be eligible.
Facilitator Talking Points:

There are several types of public benefits that might be available for your child. These programs include:

Supplemental Security Income (SSI): SSI provides monthly benefits to help children and adults with severe disabilities meet their basic needs such as food, clothing, and shelter. The amount of benefits is limited. For a person age 18 or older to qualify, he or she must have a significant disability and little income or resources. People who get SSI can be paid to work. The SSI program will adjust the amount of the SSI benefit based on how much you earn.  It is always an advantage to work and get an SSI benefit, as it will increase overall income more than just getting the benefit alone.

Social Security Disability Insurance (SSDI):  SSDI is a benefit for people with severe disabilities who have earned sufficient Social Security “work credits” and who are not able to work at a substantial level. You might hear the term “substantial gainful activity” or SGA. This is when your child earns enough money to affect their SSDI benefit. SGA amounts change once each year. Substantial Gainful Activity is higher for people who are blind.

Medicaid: Is a state program that provides health coverage to people with disabilities, children, pregnant women, parents, and seniors. There are basic federal requirements for eligibility. Each state can choose to add more people to its Medicaid program. In some states, additional low income adults may be eligible. States may also have Medicaid waiver programs (e.g., home and community-based services waivers (HCBS Waivers), self-directed personal assistant services, and community-based long-term services and supports. These programs vary by state. Waiting lists for Medicaid waiver programs are common and depend on your state.

Medicaid Home and Community Based Services (HCBS): Home and Community Based Services provide people with severe disabilities with long-term services and supports in home and community settings rather than in institutional settings.

Medicare: Medicare is health insurance for people with disabilities who receive disability benefits from Social Security.  People over the age of 65 are also eligible for Medicare.

Supplemental Nutrition Assistance Program (SNAP): SNAP is a food assistance program for eligible, low-income individuals and families.

Housing Choice Vouchers (Section 8): Housing Choice Vouchers help people with disabilities, very low-income families, and the elderly to afford safe housing. This is coordinated by the public housing authority in your area.

Many public benefits such as Medicaid and Supplemental Security Income (SSI) are means-tested programs. This means the programs serve people who have low incomes and few assets. In order to be eligible to receive these public benefits, people cannot exceed certain income or asset limits. The services available through Medicaid programs vary by state but can include supported employment and other services to support community-based living. Tools like ABLE accounts and Special Needs trusts can help protect benefits.

It is very important to remember that benefits for financial assistance and medical care time sensitive. Based upon the age requirements, your child’s benefits will either end or convert to adult based benefits.

The keys to success are to organize and start early.

Sources:

Public Benefits
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/financing-the-future/public-benefits

Fact Sheet in Plain Language: What to Know about Public Benefits (PDF file)
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org

Fact Sheet in Plain Language: What to Know about Public Benefits (Word file)
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/assets/FTF_PL-Public-Benefits-64d4b09fd632e98d1ceb8c213c8b9aebf038e992aa9ecf0c384c6328b1587291.docx

Home & Community-Based Services 1915(c)
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

State Medicaid Plans and Waivers
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies

Slide 14 – Step 8a: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions (Meet Jenny Hatch)

Slide 14 Notes – Step 8a: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions (Meet Jenny Hatch)

Objective: Parents will consider the option their child working with another trusted family member, friend, or a professional who will help them make decisions and respect their individual wishes as they transition to adulthood.
Facilitator Talking Points:

Jenny Hatch said “Just because a person has a disability does not mean they need a guardian. Many times they just need support and a little help.”

So, who is Jenny Hatch? She is a young woman with Down syndrome who was living her life the way she wanted. She had a job, her own apartment, participated in her community, and spent time with friends. After a bicycle accident in August 2012, a person in Jenny’s life wanted to become her guardian. A guardian would have the power to make all of Jenny’s decisions for her, including decisions about getting or withholding healthcare. Almost immediately, Jenny was placed in a temporary guardianship and forced to live in a group home, where she was cut off from her friends, removed from her job, and taken from the life she made for herself in her community. Jenny sued for the right to make her own decisions. She now lives and works where she wants, has the friends she chooses, and encourages others to do the same. (Source: Jenny Hatch Justice Project – jennyhatchjusticeproject.org)

Becoming an adult means that a person must make decisions about day to day life such as the clothes to wear, food to eat, or whether to go to call in sick to work. It also means that a person must make major life decisions about money, heath care and choosing where to live. It often helps to seek guidance from trusted family and friends to help with making these decisions.

A young person with a disability may also need assistance with these life decisions. As a parent, we often assume that our child wants our help first. However, it might help your child to have a person who is objective to help him/her make decisions. Your child may feel more comfortable with another trusted family member, friend, or a professional who will help them make decisions and respect their individual wishes as they transition to adulthood.

Sources:
Jenny Hatch Justice Project
Link: jennyhatchjusticeproject.org

Supported Decision Making – From Justice for Jenny to Justice for All
Link: www.amazon.com/Supported-Decision-Making-Justice-Jenny/dp/1693400251

 

 

Slide 15 – Step 8b: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions

Slide 15 Notes – Step 8b: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions

Objective: Parents will be able to discuss the options that are available to assist their child with making decisions as they transition to adulthood.
Facilitator Talking Points:

We are now going to discuss several ways that people with disabilities can receive support in making decisions. These are listed in order that allows the person with the disability to have the least amount of choice and decision making power to the way that allows a person with a disability to make his/her own decisions and direct this/her own life to the maximum extent of his/her abilities. The type of support someone needs should be based on an individual basis and may change over time. Others may urge you to make a decision that may not be the right one for your child.

Guardianship/Conservatorship: A guardian or conservator is authorized by a judge to make decisions on behalf of the individual with a disability and can be granted general or limited guardianship. When a guardian is appointed by the court, the person with a disability loses the authority to make those decisions for him/herself. Every state has its own process for appointing guardians. If guardianship is necessary, then it’s important to recognize the person’s ability when deciding between limited or full guardianship. In the book, Supported Decision Making – From Justice for Jenny to Justice for All, written by Jonathan Martinis and Dr. Peter Blanck, it states “Guardianship, while helpful in extreme or emergency situations, decreases self-determination because – as in Jenny’s case – a court takes away the person’s right to make decisions and control his or her life.”

Authorized Health Care Representative: This is a person chosen by the person with a disability to help make decisions about health insurance coverage and to pursue claims related to coverage. This person can be a family member or other trusted person. (Source: Healthcare.gov Portal – Glossary, a product of the U.S. Centers for Medicare & Medicaid Services)

Durable Power of Attorney for Healthcare Decisions (also known as a Health Care Agent): A health care agent is person you choose to make health care decisions for you when you cannot make them for yourself.

Durable Power of Attorney for Financial Decisions: A power of attorney gives a person legal authority to make decision about another person’s money or property when the person is not able to make his/her own decisions.

Representative Payee: A representative payee is a person, agency, organization, or institution that helps the person with a disability to manage money received from public benefits. The most common benefits systems using representative payees are SSI and Social Security benefits. A representative payee receives the monthly benefits and must use the money to pay for the person’s current needs, including housing and utilities, food, medical and dental expenses, personal care items, clothing; and rehabilitation expenses, if needed. After paying those expenses, the payee can use the rest of the money to do things like pay any past-due bills or give the person some spending money. If there is money left over, your payee should save it for you. The payee must keep accurate records of how they spend your money. The payee must also regularly report this information to Social Security. Social Security will mail a form to the payee once a year.

Supported Decision-Making (SDM): The person with a disability chooses a team of people to help him/her make decisions. The supporters have agreed to be available for advice and assistance. In the book, Supported Decision Making – From Justice for Jenny to Justice for All, written by Jonathan Martinis and Dr. Peter Blanck, it states supported decision making is “a way to support people, based on their individual abilities, needs, and preferences.” It goes on to say “SDM is a commitment to three principles: that everyone has the right to make their own decisions and direct their own lives to the maximum of their abilities; that people may ask for and receive help making decisions without society assuming that they can’t make decisions; and that there are many ways to give and get help as there are people.” Finally, “supported decision making should be considered for the person before guardianship, and the SDM process should be incorporated as a part of guardianship if guardianship is necessary.” (Supported Decision Making – From Justice for Jenny to Justice for All). When a person uses SDM, he/she makes his/her own decisions.

Consider consulting with a lawyer to navigate the legal process of these decision-making options. It’s important that the lawyer understands person-centered decision-making for people with disabilities. If your family can’t afford a private lawyer, consider working with a legal assistance program such as Legal Aid.

Sources:
Supporting Daily & Major Life Decisions
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions

Help for agents under a power of attorney
Source: Consumer Financial Protection Bureau
Link: files.consumerfinance.gov/f/documents/cfpb_msem_power-of-attorney_guide.pdf

Healthcare.gov Portal – Definition of Authorized Representative
Link: www.healthcare.gov/glossary/authorized-representative/
Source: U.S. Centers for Medicare & Medicaid Services

MedlinePlus Medical Encyclopedia – Definition of Health care agent
Source: U.S. National Library of Medicine, U.S. Department of Health and Human Services, and National Institutes of Health
Link:
medlineplus.gov/ency/patientinstructions/000469.htm

When a Representative Payee Manages Your Money
Link: www.ssa.gov/pubs/EN-05-10097.pdf
Source: Social Security Administration
Slide 16 – Step 9: Help your child to learn “soft” employment skills.

Slide 16 Notes – Step 9: Help your child to learn “soft” employment skills.

Objective: Parents will be able to list “soft” employment skills that their child may need to develop or improve.
Facilitator Talking Points:

In addition to the work skills that people need for their jobs, they also need “soft skills.” Soft skills are the skills a person uses to get along with people.

Examples of soft skills include:

  • Arriving to work on time.
  • Getting along with co-workers and other people you meet on your job.
  • Working as part of a team.
  • Sharing ideas with others.
  • Dressing properly for the workplace.
  • Saying things like “good morning” and “thank you.”
  • Calling the work place when you will be out sick.

As a parent, you can help your young adult develop these skills by teaching them at home, and then providing opportunities for practice at school and in social situations. The social and community support networks we discussed earlier are a great place to work on these skills.

Facilitator – Additional examples of soft skills are:

  • Willingness to learn new things
  • Controlling emotions
  • Following directions from supervisors
  • Returning from breaks on time
  • Having the confidence to make decisions
  • Staying focused
  • Asking for help when needed

Facilitator Note: Refer to Module 3: The ADA in the Workplace and Module 6: Skills for Successful Employment for additional information.

Source:
Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

 

 

Slide 17 – Step 10a: Explore housing options.

Slide 17 Notes – Step 10a: Explore housing options.

Objective: Parents will identify a minimum of two housing options to explore with their son/daughter as they transition to adulthood.
Facilitator Talking Points:

Moving into a place of your own for the first time is exciting. Do you remember when you moved into your first place? Was your decorating style “all-American thrift store” or hand-me-downs from family and friends? Did you have a roommate or live solo?

Moving into a place of your own is an important part of becoming independent. Like anything else worth pursuing, it takes time, planning early, and networking to find just the right place to live. We all want a place that is affordable. There are many things you may want or need to explore based upon your child’s finances, needs, and desires.

  • Does he/she want a roommate?
  • Does his/her place need to be wheelchair accessible?
  • Does it need to be on the bus or train route?
  • Does the housing need to be close to a job?
  • Does your son/daughter want to live close to a grocery store, other shops, or a medical clinic?
  • Is the area a safe place to live?
  • Are pets allowed?
  • Do family and friends live nearby?
  • Are there recreational opportunities?

There are many types of housing to consider. Some young adults may choose to stay home with the family for a while. Other housing options include a dormitory at an educational institution, an apartment with or without roommates, owning a home, or housing with support persons on-site, and federal and state subsidized housing programs. The choice of housing is dependent upon the community, the family’s resources, and support system.

It is important to explore all options so you and your child can make the best decision. Network with other families and friends for valuable suggestions and contacts. Remember, take the time you need, plan early, and network to find just the right place to live.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

Tips When Considering Housing and Services
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-48.pdf

Finding Housing for Youth with Disabilities Takes Determination and Creativity
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-37.pdf

Slide 18 – Step 11: Plan for health care needs.

Slide 18 Notes – Step 11: Plan for health care needs.

Objective: Parents will be able to list the steps to transitioning their young person to an adult healthcare provider.
Facilitator Talking Points:

In the medical world the term “transition” refers to preparing a young person to move from a pediatrician to an adult healthcare provider. During childhood, parents are responsible for their son or daughter’s medical need. They call for doctor appointments, fill out forms, and keep track of medications. As our children get older, it is important for them to understand how to manage their own medical needs. Healthcare transition focuses on building independent health care skills – including self-advocacy, preparing for the to work with doctors as an adult, and transferring to new providers. We will focus on the steps to make this happen.

  1. Form a health care transition team.

As a part of your child’s transition to adulthood, it is important to have a transition team focused on health care. The health care transition team may include the young person, the parents, the child’s primary care doctor, specialty care providers, and other medical care providers or support staff, as appropriate. The purpose of this team is to plan and support the transition from pediatric to adult health care. Although doctors may not have the time to participate in IEP meetings, you can bring their recommendations to the school IEP team to make sure health and medical goals are reflected in your child’s IEP.

  1. Discuss your child’s transfer to adult care with your child’s pediatric/adolescent health care provider.

Doctors who actively participate in the transition process by suggesting health and medical goals to address in the IEP, coordinating the transition to other providers or clinicians, communicating with appropriate community services (e.g. Medicaid and Social Security), or providing their input on other post-secondary goals significantly improve the transition process for their young adult patients and their families. Parents can help physicians play a more effective role in the transition to adult health care. Introduce the idea of health care transition to your son or daughter’s pediatric health care provider around the ages of 12 -14. Ask about the possibility of overlapping adult and pediatric care for your son/daughter for a period of time with his/her pediatrician. This approach may be especially helpful if multiple specialists are involved.

  1. Ask your health care insurer about their policy regarding the age limit of services under pediatric/adolescent care.

Private Insurance: If you have private insurance, it is important to review your policy carefully so that you know what will be covered when your child reaches age 18. Under the 2010 Patient Protection and Affordable Care Act, private insurance policies will continue to cover your child under your policy until age 26. Some states require insurance companies to continue covering special needs adult children past that age. If you get insurance through your work, check with your Human Resources department to find out if this is true in your state, or check with your state’s Department of Insurance. Because your private insurance policy may not cover all the drugs or services your child needs, it may be important to have Medicaid or Medicare coverage to fill these gaps. For that reason, make sure that claiming your child as a dependent will not jeopardize their eligibility for those programs.

Medicaid: Medicaid is a government-sponsored insurance program for people of all ages who lack the income or resources to pay for health care. Access to Medicaid is granted when an adult begins receiving SSI. These benefits are particularly important if your child has medical needs because Medicaid may pay for medication and equipment that insurance does not cover. If your child is already receiving Medicaid benefits, he or she will have to reapply after they turn 18.

Medicare: Medicare is a government-sponsored insurance program for people over 65 and some younger people with disabilities. Access to Medicare is granted two years after an adult child with disabilities begins receiving SSDI. While not every medical provider accepts Medicaid, most everyone accepts Medicare.

  1. Identify an adult health care provider.
  • Before you start looking for a new primary doctor, think about what is most important to your son/daughter.
  • Ask others for their recommendations of doctors that you can consider. Ask your current doctor, family members, and adults who have health needs similar to your child’s for recommendations. Ask other parents of young adults who have made the transition to adult health care about their experiences.
  • Talk with your son and daughter and make a plan about how to approach the interview with the doctor. Some youth will want to assume the leadership for how to proceed with the interview process. Even youth who need significant parental guidance, however, should be involved to the extent they are able in the process of selecting their new health care provider.
  • Check your health insurance website to make sure that the individual doctors you are thinking about interviewing are on their list of approved providers.
  • Interview prospective doctors.
  • After you have met with your prospective doctors, discuss the interview with your child.

Facilitator Note: Provide the handout, Transition to Adult Health Care, to parents with more details about planning for healthcare needs.
Transition to Adult Health Care

  1. Discuss the best ways to support your child with his/her health care needs.
    Facilitator Note
    : Reference Slide 14: Step 8a: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions (Meet Jenny Hatch) and Slide 15: Step 8b: Learn About Ways to Support Your Young Adult in Making Daily & Major Life Decisions.

Sources:

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Transition to Adult Health Care
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/transition-to-adult-health-care.asp

A Young Person’s Guide to Health Care Transition
Source: National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
Link: www.ncwd-youth.info/wp-content/uploads/2017/09/Young-Persons-Guide-to-Health-Care-Transition.pdf

 

 

Slide 19 – Step 12: Visit post-secondary training and education programs.

Slide 19 Notes – Step 12: Visit post-secondary training and education programs.

Objective: Parents will be able to discuss the importance of visiting post-secondary institutions and the disability services offices.
Facilitator Talking Points:

If your child wants to continue her or his education after high school, there are several choices to make. Post-secondary education can be broken into four broad categories: four-year college or university, community college, or associate’s degree program, vocational or technical school, certificate programs, and Comprehensive Transition Programs. Your child can become a full-time or part-time student. They can take classes towards a degree or for the purpose of learning about subjects that interest them.

Visiting a college or training program can help your son or daughter decide what he/she wants to do for the future. You and your student may schedule a tour by contacting the colleges, universities, or technical schools and asking for a tour.

When visiting prospective colleges, it will be important to make an appointment to visit the school’s Disability Services office to find out how to document your student’s disability and ask about the accommodations that are available or could be considered. As a college student, your child will have to advocate for him or herself in order to get the support and accommodations they need. Visiting the disability services office with a list of questions will be an important first step.

Although postsecondary institutions are required to provide reasonable accommodations to students with disabilities, it is the student’s responsibility to provide appropriate, updated documentation of their disability. The exact accommodations provided in high school may not be available. Postsecondary programs are not required to follow past IEPs, write new ones, or provide student grade information directly to parents.

Facilitator Note: Refer to Module 4: The ADA in Higher Education for additional information.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

 

 

Slide 20 – Summary: Tips for Success

Slide 20 Notes – Summary: Tips for Success

Objective: Parents will be able list the tips for success.
Facilitator Talking Points:

  1. Plan early.
    Transition planning can start as early as middle school. Make sure it is included in your child’s Individualized Education Plan (IEP).
  2. Talk with your student about his/her future.
    Talk with your student about his/her future. Keep the lines of communication open. Make discussions about the future part of everyday conversation. Recognize that your plans may need to change as circumstances change.
  3. Support the thoughts and opinions of your son or daughter.
    Remember that your son or daughter will also have opinions about his/her future. Your son or daughter’s priorities may be different than your priorities. Work together with your student to identify the needed steps for future planning.
  4. Share responsibilities and promote self-advocacy skills.
    Parents and students should share responsibilities for planning for the future. Encourage your son or daughter to develop self-advocacy skills. Allow your child to start advocating for him/herself in small things and build up to bigger things.
  5. Build Your Plan.
    During this time, we have learned that planning for your child’s transition from a teenager to adulthood is one of the most important things you can do to pave the way to a successful future. The key to success is to start planning early. We encourage you to use the “Build Your Plan” tool developed by The Arc’s Center for Future Planning. The tool provides a way for you and your son or daughter start making a plan for the future plan. Your child’s interests, preferences, and skills are the main focus. The Tool guides you through important topics, including:
  • Expressing wishes for the future in writing
  • Deciding where to live and how much support is needed
  • Paying for basic and other needs
  • Getting a job and other daily activities
  • Making daily and major life decisions
  • Making friends and having good relationships

Facilitator Note: Distribute the Handout: From Parent to Partner – Planning for the Future from Section 9 so that parents can complete the online tool at home. Encourage the parents to include their children in the planning process.

Sources:

Ten Tips That May Help Your Child’s Transition to Adulthood
Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: www.pacer.org/parent/php/PHP-c107.pdf

The Journey to Life After High School: A Road Map for Parents of Children with Special Needs
Source: AbilityPath.org, An Online Initiative of Gatepath
Link: abilitypath.org/wp-content/uploads/2015/12/life-after-high-school.pdf

Build Your Plan by the ARC
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/landing

 

 

Post Module for the Training Facilitator:

Facilitator Note: From the Pre-Module activity, review the list of celebrations and concerns from parents about their students building self-advocacy skills and increasing their independence. Add a second column to the list to identify ways that the group thinks a Parent could be a good Partner in each situation. For each suggestion, ask the group if they think the suggestion is a good strategy for being a Partner, and why or why not.

 

 

SECTION 6: Learning Activities

For the Training Facilitator:

Facilitator Note: Learning activities have been designed to reinforce the content from the PowerPoint presentation and/or videos. A menu of activities has been provided. You may choose one or more activities based upon the time that you have to present the material and upon the needs of the students. For each interactive activity Suggested time frames are included with each activity. Please keep in mind the age of your students, their individual skill levels, and specific disabilities to allow time frames that are appropriate for your group.

Activity#1: Group Discussion

Activity 1A: “Changing Roles”

Time: 15 minutes or more
Facilitator Script:  “What are some ways that our students have begun to advocate for themselves in their daily lives?”

What are some ways that our students are likely to want to increase their independence in the near future?”

“As a parent, how have you responded to these situations, or how do you think you are likely to respond to these situations in the near future?”

“Now let’s think of our changing roles from parents to partners.

  • What are some things we can do to support our students to make their own decisions? Remember, we may or may not agree with their decisions.
  • How can we show our students that we value their opinions?
  • How we can show them that we have heard what they are trying to tell us?
  • When your priorities are not the same as your student’s priorities, how do you reinforce that priorities can be different, but not necessarily better, and that you do respect their rights to make their own choices?”

Activity#2: Art Projects and Musical Expression

Art Project: “Making My Move to Partner”

Time: 15 minutes or more
Facilitator Note: “Using any art materials and a large piece of paper (drawing paper, flip-chart pages, etc.), have each person create an artwork to share with the group. If any members of the group have difficulty creating an artwork by themselves, consider having the group work in pairs or small groups of 3 – 4 members.

Facilitator Script: “Holding your paper lengthwise from left to right, fold the paper in half to make a section on the left and a section on the right. Using any art materials, including cutting pictures, words, symbols, numbers, etc. from magazines and pasting them on your paper, show something on the left half of your paper that you celebrate or concerns you that you have about your student’s ability to build self-advocacy skills and increase independence.

On the right half of your paper, use any art materials to show how you could be a partner to your student to support these new independence skills. These supports might include discussing a plan, identifying steps to meet a goal, talking through potential pitfalls or problems, supporting decision making, listening and valuing opinions, and so on. When I call time, we will get back together to share our artwork and to discuss our roles as partners for our students as they build self-advocacy skills and increase their independence.”

Musical Expression “What Keeps Me Up At Night…”

Time: 15 minutes or more
Facilitator Note: For this musical expression activity, use activities such as singing, simple musical instruments, percussion instruments, drumming, etc. The activity of drumming can be done using plastic buckets or containers, or using hands on table tops. Using any object as the “Musical Wand,” each person in the circle or group can only “perform” when that person has possession of the Musical Wand.

Facilitator Script: “The first person with the Musical Wand gets to perform in any musical style of your choice to answer the question ‘What Keeps Me Up At Night?’ Of course, this has to be something that concerns you about your student building self-advocacy skills and increasing independence. This is the format you will use for your musical expression time in the spotlight:”

  • What keeps me up at night?
  • I’m concerned about my daughter/my son (sing as much information as you want about what worries you)
  • Please give me your advice
  • I need to better understand
  • What keeps me up at night!

“At this point, the person with the Musical Wand who has just expressed his/her concerns passes the Musical Wand to a member of the group who would like to respond with some advice on how to be a partner in this situation. The new person with the Musical Wand sings a response in the following format:”

  • I’ll give you my advice
  • So you can better understand
  • What keeps you up at night
  • My best advice to you is (sing any suggestions about how to be a partner in this situation)

“Continue to pass the Musical Wand until no other suggestions are made. Then, start the process over with a new member of the group singing about what keeps that person up at night and requesting advice from the other members in the group.”

“Remember—When you have the Musical Wand, it is your turn to perform in the spotlight!”

Activity#3: Dramatic Arts

“What’s the Plan, Fran?”

Time: 15 minutes or more
Facilitator Note: Working in pairs, have each member of the pair take turns being the Parent and the Student in each situation.

Facilitator Script: “As parents, think of at least one situation that concerns you about your student building their self-advocacy skills, making their own decisions, and increasing their independence. Working in pairs, the first parent will act in the role of the student and present the situation to the second person. The second person will take the role of the parent partner and present guidance and suggestions for the situation. As a parent, you know your student better than anyone in the group. Be realistic about how your student will respond to the assistance provided by the parent partner.  Do you think this will work for your student? Why or why not?”

“When I call ‘Time to Switch’, reverse roles and act out the second situation with the second parent taking the role of the student in that situation and the other person in the pair will be the parent partner providing direction and guidance for the Student. Again, be realistic about how your student will react to the advice and suggestions from the parent partner.”

Facilitator Note: After the pairs have acted out the roles for each of the two situations, have the pairs discuss the following, or ask for feedback from each pair to share with the whole group if time permits about the following.  Also, if time permits, ask for volunteer pairs to act out their two skits in front of the group, and have the group discuss the following:

  • Did the parent guide the student toward a plan or next steps to consider in that situation?
  • Did the parent provide support for the student in making decisions?
  • Did the parent really listen to the student?
  • Did the parent value the opinions of the student?
  • Did the parent indicate a different, but not better, priority from the one expressed by the student?

Activity#4: Interacting with Youth Advocates

Facilitator Note: Invite a youth or young adult with a disability who has developed self-advocacy skills and has transitioned to living independently to speak briefly to your group of parents about this experience. If possible, invite a small panel of 2 – 4 youth and young adults with disabilities who have successfully transitioned to living independently to briefly share with your group about their experiences. Allow time for the group to ask questions and dialogue with the speaker or panel of speakers.

Facilitator Note: Sources for identifying youth and young adults with disabilities who have successfully transitioned to living independently and advocating for themselves might include the following:

Activity 4A: “And Now, A Word from the Real World”

Time: 5—15 minutes
Facilitator Note: Invite a police officer or a small panel of 2 to 4 police officers to speak briefly to your group about the ways they protect and serve the community. Allow time for the group to ask questions and dialogue with the law enforcement officers.

Activity 4 B: Virtual Reality—”A Word from the Real World”

Time: 5 – 15 minutes

Facilitator Note: Using Zoom or a similar platform invite a youth or young adult with a disability who has developed self-advocacy skills and has transitioned to living independently to speak briefly to your group of parents about this experience. If possible, invite a small panel of 2 – 4 youth and young adults with disabilities who have successfully transitioned to living independently to briefly share with your group about their experiences. Allow time for the group to ask questions and dialogue with the speaker or panel of speakers.

.

SECTION 7: Handouts or Materials Needed

  • Audiovisual equipment for PowerPoint presentation and/or videos.
  • Art materials, blank paper, colored pencils or markers, rubber ball, and a bottle of liquid bubbles (Activity 1).
  • Photocopies of PowerPoint slides, including alternate formats such as large print, Braille, and electronic formats, such as a USB drive for students with visual or print disabilities.

SECTION 8: After Class

Facilitator Note: This activity will allow parents to start a building a plan with their student as he/she transitions from high school to adulthood. “Build Your Plan” was developed by The Arc’s Center for Future Planning (link: futureplanning.thearc.org). The tool provides a way for the student and his/her your family to create an account with the Center and start making a future plan. It is important that you plan ahead to help guide a person with a disability to lead a good life as independently as possible. Although the plan was developed with a focus on people with intellectual and/or developmental disabilities (I/DD), it can be used by any person with a disability.

Talking Notes

During this time, we have learned that planning for your child’s transition from a teenager to adulthood is one of the most important things you can do to pave the way to a successful future. The key to success is to start planning early. We encourage you to use the “Build Your Plan” tool developed by The Arc’s Center for Future Planning. The tool provides a way for you and your son or daughter start making a plan for the future plan. Your child’s interests, preferences, and skills are the main focus. The Tool guides you through important topics, including:

  • Expressing wishes for the future in writing
  • Deciding where to live and how much support is needed
  • Paying for basic and other needs
  • Getting a job and other daily activities
  • Making daily and major life decisions
  • Making friends and having good relationships

Distribute the Handout: From Parent to Partner – Planning for the Future so that parents can complete the online tool at home. Encourage the parents to include their children in the planning process.

 

 

Handout: From Parent to Partner Planning for the Future Overview

Planning for your child’s transition from a teenager to adulthood is one of the most important things you can do. A plan will help pave the way to a successful future. The key to success is to start planning early. We encourage you to use the online tool, Build Your Plan by The Arc (futureplanning.thearc.org/landing) and work with your son or daughter to develop a plan for the future.

Build Your Plan by The Arc
Link
: futureplanning.thearc.org/landing
Source: The ARC Center for Future Planning

Your child’s interests, preferences, and skills are the main focus. The Tool guides you through important topics, including:

  • Expressing wishes for the future in writing
  • Deciding where to live and how much support is needed
  • Paying for basic and other needs
  • Getting a job and other daily activities
  • Making daily and major life decisions
  • Making friends and having good relationships

Tips for Planning Success

  1. Start early.
  2. Work together with your student.
  3. Encourage your student.
  4. Complete the plan over several sessions.
  5. Remember, it is an ongoing process.
  6. Be open-minded.
  7. Set small goals towards the bigger goal of independence.
  8. Be patient.
  9. Plan about what you want your future to be, but also be open to new opportunities.
  10. Have fun!

Facilitator Note: Please print and distribute Module 12 – Parent to Partner Training Evaluation to the parents. After the surveys are completed, scan and email copies of the evaluations to the Southeast ADA Center’s project email at ADAsoutheast@law.syr.edu.

 

Module 12 – Parent to Partner Training Evaluation

  1. Was the information shared with you helpful? What did you find most helpful?

 

 

  1. Tell us about one thing you learned that will help with your child’s move from high school to adulthood?

 

 

  1. Were you aware of these resources prior to this training?

 

 

  1. What other topics would like to know about?

 

 

 

 

Thank you for participating in today’s training. If you have questions about the Americans with Disabilities Act, contact the Southeast ADA Center at:

Toll-Free:    1-800-949-4232

Phone:          1-404-541-9001

Email:                       ADAsoutheast@law.syr.edu

Web:             www.adasoutheast.org

SECTION 9: Resources for Students

Laws That Protect Your Child’s Rights

About Individuals with Disabilities Education Act (IDEA)
Source: U.S. Department of Education
Link: sites.ed.gov/idea/about-idea/

Protecting Students with Disabilities: Frequently Asked Questions About Section 504 and the Education of Children with Disabilities
Source: U.S. Department of Education
Link: www2.ed.gov/about/offices/list/ocr/504faq.html

An Overview of the Americans with Disabilities Act
Source: ADA National Network
Link: adata.org/factsheet/ADA-overview

Money Management, ABLE Accounts, and Benefits Planning

ABLE National Resource Center
Description: Accurate information about federal- and state-related ABLE programs and activities, including guidance on tax-advantaged ABLE savings accounts.
Source: ABLE National Resource Center
Link: www.ablenrc.org

Public Benefits
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/financing-the-future/public-benefits

Money Smart for Young People
Source: Federal Deposit Insurance Corporation (FDIC)
Link: www.fdic.gov/consumers/consumer/moneysmart/young.html

Fact Sheet in Plain Language: What to Know about Public Benefits (PDF file)
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/assets/FTF_PL-Public-Benefits-023be0e6b51175117153bbdae0b56e459e560ce9832acfe42742f1bd90e45e2c.pdf

Home & Community-Based Services 1915(c)
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

State Medicaid Plans and Waivers
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies

Supporting Your Young Adult in Making Daily & Major Life Decisions

Supported Decision Making

Book: Supported Decision Making – From Justice for Jenny to Justice for All
Authors: Jonathan Martinis, J.D., and Peter Blanck, Ph.D, J.D.
Description: The book tells the story of Jenny Hatch, young woman with Down syndrome who was living her life the way she wanted. She had a job, her own apartment, participated in her community, and spent time with friends. Then, in August 2012, a person in Jenny’s life wanted to become her guardian. Jenny lost her rights under guardianship and won them back when she showed the court that she uses Supported Decision-Making (SDM) to make her own decisions with help from people she trusts. The book also shows how a person can use Supported Decision Making in his/her life, with family members, or with people you support. It will give provide practical tips and model language to help you request, receive, and use SDM in the programs and life areas people with disabilities use every day, including Special Education, Vocational Rehabilitation, Person Centered Planning, Health Care, Money Management, and others.
Link: www.amazon.com/Supported-Decision-Making-Justice-Jenny/dp/1693400251

Supported Decision-Making Teams: Setting the Wheels in Motion
Source: National Resource Center for Supported Decision-Making
Link: supporteddecisionmaking.org/resource_library/supported-decision-making-teams-setting-the-wheels-in-motion/

Supported Decision Making Brainstorming Guide
Link: supporteddecisionmaking.org/resource_library/supported-decision-making-brainstorming-guide/
Source: National Resource Center for Supported Decision-Making

Supporting Daily & Major Life Decisions
Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions

Jenny Hatch Justice Project
Description: The Jenny Hatch Justice Project provides tools, advocacy, information, research for people with disabilities, families, advocates, attorneys, professionals they need to protect and promote the rights of people with disabilities to make their own choices and determine their paths and directions in life.
Link: jennyhatchjusticeproject.org

Other Support Models for Decision Making

Help for agents under a power of attorney
Source: Consumer Financial Protection Bureau
Link: files.consumerfinance.gov/f/documents/cfpb_msem_power-of-attorney_guide.pdf

When a Representative Payee Manages Your Money
Link: www.ssa.gov/pubs/EN-05-10097.pdf
Source: Social Security Administration

Giving Someone a Power of Attorney For Your Health Care
Source: The Commission on Law and Aging American Bar Association
Link: www.americanbar.org/groups/law_aging/resources/health_care_decision_making/power_atty_guide_and_form_2011/

Employment Skills Development

Helping Youth Develop Soft Skills for Job Success: Tips for Parents and Families
Source: National Collaborative on Workforce and Disability for Youth
Link: www.ncwd-youth.info/wp-content/uploads/2016/11/infobrief_issue28_0.pdf

Housing

Tips When Considering Housing and Services
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-48.pdf

Finding Housing for Youth with Disabilities Takes Determination and Creativity
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/resource-library/publications/NPC-37.pdf

Health Care

Transition to Adulthood: A Health Care Guide for Youth and Families
Source:  Autistic Self Advocacy Network (ASAN)
Link: autisticadvocacy.org/wp-content/uploads/2014/07/ASAN-healthcare-toolkit-final.pdf

A Young Person’s Guide to Health Care Transition
Source: National Collaborative on Workforce and Disability for Youth (NCWD/Youth)
Link: www.ncwd-youth.info/wp-content/uploads/2017/09/Young-Persons-Guide-to-Health-Care-Transition.pdf

State Medicaid Plans and Waivers
Source: U.S. Centers for Medicare & Medicaid Services
Link:
www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/info/state-medicaid-policies

Healthcare.gov Portal – Definition of Authorized Representative
Link: www.healthcare.gov/glossary/authorized-representative/
Source: U.S. Centers for Medicare & Medicaid Services

MedlinePlus Medical Encyclopedia – Definition of Health care agent
Source: U.S. National Library of Medicine, U.S. Department of Health and Human Services, and National Institutes of Health
Link:
medlineplus.gov/ency/patientinstructions/000469.htm

PACER’s Health Information Center (HIC)
Source: Source: PACER Center, the Minnesota Parent Training and Information Center, funded by the U.S. Department of Education’s Office of Special Education Programs
Link: pacer.org/health/

Got Transition
Source: Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health
Link: gottransition.org/index.cfm

Family Voices
Link: familyvoices.org

National Center on Health, Physical Activity and Disability (NCHPAD) – For Individuals & Caregivers
Source: National Center on Health, Physical Activity and Disability (NCHPAD)
Link: www.nchpad.org/Individuals~Caregivers

Transition Quick Guide: Take Charge of Planning and Managing Your Own Health and Career Goals
Source: Alliance with the Youth Transitions Collaborative, Got Transition/Center for Health Care Transition Improvement, and the U.S. Department of Labor’s Office of Disability Employment Policy
Link: www.dol.gov/odep/pdf/HealthCareCareerTransitionQuickGuide.pdf

Quiz: Are you ready to transition to adult health care?
Source: Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health
Link: gottransition.org/youthfamilies/HCTquiz.cfm

Healthy and Ready for College!
Source: Think College, Institute for Community Inclusion, University of Massachusetts Boston
Link: thinkcollege.net/sites/default/files/files/resources/Insight8.pdf

Health Transition Planning and the Individualized Education Program (IEP)
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/planning-and-iep.asp

Transition to Adult Health Care
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/transition-to-adult-health-care.asp

Building Self-Advocacy and Self-Care Management Skills
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/building-self-advocacy.asp

Financing Your Youth’s Adult Healthcare
Source: National Parent Center on Transition and Employment
Link: pacer.org/transition/learning-center/health/financing-health-care.asp

Post-Secondary Training and Education Programs

Think College
Description: Think College is a national initiative dedicated to developing, expanding, and improving research and practice in inclusive higher education for students with intellectual disability.
Source:  Institute for Community Inclusion, University of Massachusetts Boston
Link: thinkcollege.net

Think College Family Resources
Description: Think College is a national initiative dedicated to developing, expanding, and improving research and practice in inclusive higher education for students with intellectual disability.
Source: Think College, Institute for Community Inclusion, University of Massachusetts Boston
Link: thinkcollege.net/family-resources

Parents Can Think College
Description: This handout is to give ideas, suggestions, and supporting evidence for parents to be able to plan for college for their children with intellectual disabilities.
Source: Think College, Institute for Community Inclusion, University of Massachusetts Boston
Link: thinkcollege.net/sites/default/files/files/resources/parents_can_F_918.pdf

Students Can Think College
Description: This handout is to give ideas, suggestions, and supporting evidence for students to be able to plan for college. It also includes helpful guidance on areas of the Think College website to visit.
Source:  Think College, Institute for Community Inclusion, University of Massachusetts Boston
Link: thinkcollege.net/sites/default/files/files/resources/students_can_F2_918.pdf

A Transition to Post-secondary Education and Employment for Students and Youth with Disabilities
Source:  United States Department of Education, Office of Special Education and Rehabilitative Services
Link: sites.ed.gov/idea/files/postsecondary-transition-guide-may-2017.pdf

Planning for the Future

The ARC’s Center for Future Planning
Link: futureplanning.thearc.org/pages/learn/future-planning-101

Build Your Plan by the ARC
Description: Planning for the future is important for all families. You can’t do it just once. It’s an ongoing process. The Build Your Plan ® tool helps people with intellectual and developmental disabilities (I/DD) think about and plan for their future. The interests, preferences, and skills of the person with I/DD are the main focus. The tool guides you through important topics, including:

  • Expressing wishes for the future in writing
  • Deciding where to live and how much support is needed
  • Paying for basic and other needs
  • Getting a job and other daily activities
  • Making daily and major life decisions
  • Making friends and having good relationships

Source: The ARC Center for Future Planning
Link: futureplanning.thearc.org/landing

More Than Just a Job: Person-Centered Career Planning
Source: Institute for Community Inclusion
Link: www.communityinclusion.org/article.php?article_id=16

Americans with Disabilities Act Information Center

ADA National Network

Phone: 1-800-949-4232 (toll free)

Website: adata.org

Facebook: facebook.com/adanetwork

Twitter: twitter.com/ADANational

National Resources

Community Organizations

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