RAISE The Standard, August 2025, v.11 n.8

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Healthcare Transition

The shift from adolescence to adulthood can bring about big change for students with disabilities, especially in the area of healthcare. As teens become adults, they often switch from pediatric doctors to adult providers, which can mean new clinics, routines, and expectations. They may need to take on more responsibility for their own health, like scheduling appointments or managing medications. Planning ahead and having support from family, doctors, and community resources can make this transition smoother, helping young adults stay healthy and independent.

In this issue of RAISE The Standard, we will explore how young adults with disabilities can advocate for themselves and find the support they need to lead healthy lives.

Medical Self-Advocacy

Self-advocacy is the ability to represent your needs, assert your rights, and make decisions for yourself. It’s a skill that needs to be exercised to master. Here are the voices of some young people with disabilities talking about their experiences with learning self-advocacy.

Our colleagues at PAVE in Washington have developed this video on Health Care Transition and Self Advocacy.

Click here to access the perspectives of young people with disabilities talking about medical self-advocacy.

The FAQs of Health Insurance

There’s a lot to keep track of when going through a healthcare transition. Here are some frequently asked questions:

Q: How long can I stay on my parents’ insurance?

A: Under the Affordable Care Act (ACA), young adults in the United States can stay on their parents’ health insurance plan up until the age of 26. In some states, people with disabilities can stay on their parent’s private insurance beyond age 26, and can apply for public health care through Medicaid. Youth with intellectual/developmental disabilities can stay on their parent’s insurance by completing the disabled dependent certification form from the employer for as long as that parent is covered by that employer.

Q: What is the Affordable Care Act?

A: The Affordable Care Act is a law passed in 2010 to help more people get health insurance. It gives financial help to pay insurance premiums to those who need it, allows more people to qualify for Medicaid, and makes sure insurance companies can’t deny coverage for pre-existing health problems. It is health care that is not linked to employment.

Q: My work doesn’t offer health insurance. What are my options?

A: You can buy a plan on the ACA marketplace at healthcare.gov, and depending on your income you may qualify for financial aid. If you have limited income, you may qualify for Medicaid, which is low-cost or free coverage. Alternatively, you can buy a health insurance plan directly from an insurance company, though this option is usually more expensive.

Q: What is Medicaid?

A: Medicaid is a public health insurance program that helps pay for medical costs for some people with limited income and resources, and for many people with disabilities. The cost of the insurance comes from the federal government and state government. The federal government has some basic rules that all states must follow, but each state runs its own program. This means eligibility requirements and benefits can vary from state to state. Often, these programs are named by the state, so some people who are on Medicaid may not even know it is Medicaid.

Medicaid offers many benefits that other health care insurance doesn’t normally cover, like nursing home care and personal care services that some people with disabilities need. People with Medicaid usually don’t pay anything for covered medical expenses but may owe a small co-payment for some items or services.

Click here to explore healthcare.gov.

Checking All the Boxes

Helping a young person prepare for a visit to the doctor requires a lot of steps. That’s why Caregiver Action Network created the Doctor Visit Checklist. It outlines what to prepare before the visit, things to remember during the appointment, and what to review afterwards.

Click here to access the checklist..

Learning the Ins and Outs of

Womens' Reproductive Health

Reproductive health can be uncomfortable to talk about with your doctor, especially if you’ve never done it before. Women can go to specific doctors for their reproductive health called OB-GYN, and there are screenings and procedures that are different from what happens at your primary care doctor visits. Knowing what to expect and how to talk about your needs is key to being a self-advocate of your reproductive health.

Click here for the tools and resources to be a self-advocate of your reproductive health..

Arc of NJ has a plain language publication called Women’s Health and What Every Woman Should Know, find it here.

There are eight (8) Rehabilitation Services Administration (RSA) Parent Centers throughout the United States that provide training and programming to youth and young adults with disabilities, their families, professionals, and other Parent Centers. The focus is on issues surrounding youth transition.

RSA Parent Centers are funded by the Rehabilitation Service Administration (RSA) under the Office of Special Education and Rehabilitative Services (OSERS), which is part of the US Department of Education.

In this issue of RAISE The Standard, we focus on REAL Transition Partners, a collaboration between Parent Centers in Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont.

REAL provides innovative and responsive services and support that equip youth and young adults with disabilities and their families with the tools to actively participate in the development of useful, relevant, and meaningful plans for independence.

The RAISE Youth Advocates for Change (YAFC) have produced podcasts on topics important to them as youth with disabilities to amplify the youth voice and support parent centers as they continue to engage with youth and their families.

Click here for episode 5: Tips on How to be a Good Self-Advocate.

Affordable Care Act:

https://www.hhs.gov/healthcare/about-the-aca/index.html

Taking Charge of My Healthcare Module:

https://www.youtube.com/watch?v=0Q2kZX3wpxs

Center for Transition to Adult Health Care for Youths with Disabilities:

https://movingtoadulthealthcare.org/ 

Medication Management in College:

https://childmind.org/article/managing-medication-in-college/?utm_source=newsletter&utm_medium=email&utm_content=Medication Management in College&utm_campaign=Weekly-4-10-18

A Self-Advocate’s Guide to Medicaid:

https://autisticadvocacy.org/policy/toolkits/medicaid/?utm_campaign=shareaholic&utm_medium=facebook&utm_source=socialnetwork

Got Transition (healthcare transition):

https://www.gottransition.org/

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.

The RAISE Technical Assistance Center is working to advance the accessibility of its digital resources, including its websites, enewsletters and various digital documents.

* For more on SPAN Parent Advocacy Network and all of the complementary programs supported, visit spanadvocacy.org.