September 2018, Vol. 4, No. 6
RAISE The Standard Newsletter
Raising the Standard for Young Adults with Disabilities
Technical Assistance and Resources for RSA-funded
Parent Training and Information Centers

If you don’t take care of your body, where are you going to live?
~ Unknown
In this issue, we take a deep dive into the topic of health care transition.

Managing one’s own health and wellness is critical to transitioning into employment, so youth with disabilities and chronic health conditions need to learn how to manage their own health care. Health care transition - the purposeful, planned movement of youth from child-centered to adult-centered medical care - is important to success in all other aspects of transition.

With planning and support, youth can gain self-care and independence as they engage in their own wellness, learn how to manage medication and treatment, and learn about options for health insurance coverage to make sure they stay healthy and empowered.
Looking to just get started? We like this video above produced by Nemours. It offers some simple shifts in the ways in which young people interface with their medical providers intended to build autonomy.

Another terrific source of information is at the Center for Parent Information & Resources. Their Getting Ready for Health Care at the Age of Majority pages, updated in 2017, lay out the key issues:

Here are some of the things that change at the age of 18:

  1. Doctors and health care professionals should be talking to THEM, not mom and dad.
  2. Health information becomes private and should be shared with others ONLY with the teen’s approval.
  3. Unless there is a surrogate decision-maker, health care decisions are up to the teen.

You should know:

1) A number of provisions in the Affordable Care Act expand access to health insurance coverage for youth with disabilities.

The Affordable Care Act ensures that young people have quality, affordable health insurance choices, regardless of how their lives change. This is critical as youth frequently change or hold part-time or temporary jobs. Through the elimination of pre-existing condition exclusions, expansions of dependent coverage to age 26, Medicaid eligibility expansions, and subsidized private plans, new coverage opportunities are available. Youth, either by themselves or with their parents, can confidently purchase insurance coverage that includes essential health benefits, including mental health and substance use disorders services, prescription drugs, rehabilitative services and devices, preventive and wellness services, and chronic disease management. The youth does not need to be a student to access these benefits.

2) Access to Medicaid can support successful transition for youth with disabilities and chronic health care needs.

Medicaid is a joint federal and state program that is partially funded by the federal government and administered by states. Through various programmatic authorities, it provides states with opportunities to promote employment and successful community living for youth with disabilities in transition. States also have the opportunity to promote employment and successful community living through the Medicaid Buy-In program, which permits states to allow higher income limits or no income limits for working individuals with disabilities, including youth with disabilities in transition. Forty-six states currently have Medicaid Buy-In programs.

From materials published March 2016, OSERS Guide produced by the Federal Partners in Transition to Work.

3. Now is the time to include IEP goals that address transition to greater independence in health care.

What could be a better life skill than learning how to manage one's own health and wellness? During the transition years, IEP life skills goals can be expanded to include skills related to these vital areas. Like any other goal in the IEP, larger skills (filling out forms, understanding and taking medication, learning to talk to a doctor, setting up appointments, etc.) can be broken down into more manageable, teachable objectives, with concrete activities and measurable outcomes.

This 18-minute video, produced by The Institute for Child Health Policy at the University of Florida is part of their health care transitions project. While not disability-specific, it teaches teens how to communicate effectively with health care providers, so they answer teens' questions and give the information and supports teens need to be more in charge of their own health. Teens will also learn how to prepare and give health care providers the information they need to get the best possible medical care.

Circle icon with wrench and screwdriver graphic
Preparing for Your Own Health Care

Getting ready to manage one's own health care takes time and awareness. We love this online quiz from designed to help students determine if they are ready to transition to adult health care. With just 6 short questions, youth can identify areas they need to address.

And here is another assessment tool we like, also developed by to help determine readiness. This two-part checklist - one survey is designed for students with I/DD, the other for parents - takes a deeper dive into the nuts and bolts of readiness and is a GREAT place to start. The results of this survey can help inform IEP goals and objectives for youth of transition age (14+).

Check out this 10-point step-by-step guide to health care transition, developed in both English and Spanish and produced by Florida HATS (Health and Transition Services) emphasizing the importance of starting early and creating a plan.

Using Tech:

Did you know that your smart phone could be a lifesaver? The Medical ID app (android and iPhone) can store important and private information.

Healthy Transitions is a mobile app designed to help youth with disabilities and special health care needs build skills they need to gain independence and manage their own health care. It includes videos about insurance, lifestyle, relationships and more. Designed by Family SHADE, a health care alliance in Delaware, it can be downloaded free from iTunes or Google Play.

The teen advisory committee at Boston’s Children’s Hospital produced this video to help youth take a more active role their health care.
You watched the video, but here is more from the teen-focused video produced by the Institute for Child Health Policy at the University of Florida. This simple communication technique can make your trip to the doctor's office a little easier.


G ive Information – Make sure you provide details and complete information. Make sure you know your medications, names of your specialists and names of conditions you have. Be honest about your medications and what you are taking. Write down any symptoms you have and make a note of when they happen.

L isten and L earn – Doctors can seem like they are in a hurry, or they can talk in jargon. Ask them to explain something in basic terms, or ask them to write something down for you. Tell the doctor if you did not understand something, or ask them to repeat what you think he/she said. Draw pictures or diagrams, take notes or use a recording device.

A sk questions – Write them down before your visit and ask questions as they come up. Don’t be shy about personal questions, and NO question is a silly question. Do you REALLY understand your health condition and all the ways it affects you? Do you understand how your medication and treatment really work. You can ask your parents to leave the room. If you are over 18, it is your right to privacy. If you are under 18, the doctor may need to talk to your parents too.

D ecide on a treatment plan – Make sure you understand the options, and learn the pros and cons, and if you have ideas, bring them up.

D o your part and follow the plan – You have a responsibility to follow through on your health plan. Get a written copy of the plan and the next steps, and get (or make) a checklist. Put your health care responsibilities (medications, treatment, appointments, etc.) in your calendar.
Circle icon with books on a shelf graphic is a nationally recognized website that is dedicated to improving health care transition. The site has resources for youth, families, providers and states. Each part of the website has information on current research and information about health care transition.

Family Voices

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. They connect a network of family organizations across the United States that provide support to families of CYSHCN. They promote partnership with families at all levels of health care–individual and policy decision-making levels—in order to improve health care services and policies for children.


PACER Center enhances the quality of life and expands opportunities for children, youth, and young adults with all disabilities and their families so each person can reach his or her highest potential. PACER operates on the principles of parents helping parents, supporting families, promoting a safe environment for all children, and working in collaboration with others.


If you have an hour, check out this webinar on Health Care Transition.
Circle icon with maginfying glass graphic
The IEP and Transition

Young adults transitioning to adult health care providers need to develop certain self-advocacy, self-care, and self-management skills:

  • Ability and willingness to tell the doctor about their history, current symptoms, lifestyle, and self-care in just a few minutes (including carrying their own records and a summary of their medical history).
  • Ability to ask questions about his or her condition and how it will affect school, work, recreation, and social life.
  • Ability to tell the doctor about his or her needs for education, technology, and accommodations and discuss how their condition affects or might be affected by these.
  • Willingness to follow medical recommendations that have been mutually developed by the youth with their doctor.
  • More independence in following up with referrals and communicating with medical and insurance providers.
  • More involvement in keeping themselves well, including diet and weight control; exercise and recreation; following medication; treatment and hygiene regimens; limiting risk-taking behaviors (such as drinking alcohol, smoking, taking non-prescription drugs, or unsafe sexual practices); and, getting help when feeling angry, lonely, or sad for long periods.
  • Being more aware of their physical and mental symptoms and health needs and informing their doctor before they have a serious medical crisis.
  • Developing a plan for when emergency care is needed, inlcuding when to consult with the doctor; what hospital to report to; and, what care he or she wants and does not want.

Adapted from Finding and Using Adult Health Care, KY Commission for Children with Special Health Care Needs, KY TEACH Project.

On this important topic, we like these two additional resources:

1) This 58-page guide from Wisconsin Community of Practice on Transition incudes a terrific “skills check list” to help guide the development of the transition IEP.

2) PACER’s Health Transition Planning and the IEP offers a great, step-by-step approach to IEP planning for transition-aged students:

Financing Your Youth’s Health as an Adult

Families of transition-age youth often have years of experience dealing with health care coverage issues and copayments, specialized equipment, home adaptation, and other health-related expenses. However, when youth become adults, there are brand new issues to deal with.

Planning ahead is critical. Young adults are at risk of losing health care coverage at three critical points in their transition to adulthood:

  • When they turn 19.
  • When they graduate from high school or college.
  • When they change jobs.

It is reassuring to know that there is a national network of family health advocates and other programs that can help youth with disabilities and their families understand the health insurance options that are available to them.

What health insurance options are available?
A youth’s options for health insurance coverage depend on several factors, including age, state of residence, income level, employment status, and other personal circumstances.

Options include:

  • Staying on their parents' existing family plan until the youth is 26 years old. Family plans may also offer Dependent Disabled Adult coverage beyond age 26 if an adult child is incapable of self-sustaining employment due to disability and dependent on the policyholder for care and financial support.
  • Job-based insurance coverage where employers offer group plans to employees.
  • Student health insurance: some postsecondary schools offer health insurance to their full-time students.
  • Medicaid coverage for individuals with low incomes and some people with disabilities (eligibility requirements and covered services vary by state). Former foster youth qualify for Medicaid coverage until they are 26 years old.
  • Private insurance where an individual purchases their own insurance plan. The deductibles, co-insurance expenses, and maximum limits on coverage can vary a great deal. The best place to compare insurance plans is on state Health Insurance Marketplace websites, where people can compare rates and find out if they are eligible for discounts based on income.

In general, plans that offer lower monthly premiums have more limited coverage and higher deductibles and co-insurance costs.

People who pay low premiums may find themselves responsible for a large portion of their medical costs if they are injured, become sick, or have a chronic medical condition or disability.

Teardrop shaped icon with calendar graphic
19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to
Adult-based Care
October 25 - 26, 2018
MD Anderson Cancer Center
Houston, Texas
This event, designed for counselors, parents, case managers, young adults and medical professionals will be offered as live streaming for those unable to attend in person.

Collaboration • Empowerment • Capacity-building

RAISE The Standard enewsletter identifies and shares resources that the Rehabilitation Services Administration Parent Training and Information Centers (RSA-PTI) can use and share with families.
Executive Editor:
Peg Kinsell
Visit our Website:
RAISE, the National Resources for Access, Independence, Self-Advocacy and Employment is a user-centered technical assistance center that understands the needs and assets of the RSA-PTIs, coordinates efforts with the Technical Assistance provided by PTI centers and involves RSA-PTIs as key advisors and partners in all product and service development and delivery.
US Department of Education official seal
RAISE is funded by the US Department of Education to provide technical assistance to, and coordination of, the 7 PTI centers (RSA-PTIs). It represents collaboration between the nation's two Parent Technical Assistance Centers (PTAC) and the seven Regional PTACs.