As the transition to adulthood approaches, it feels like a dark and murky process. We’ve finally started getting in a rhythm with school, (IEP’s) individualized education plans, and healthcare, and now our children being 16 years of age, we all have to start learning and considering what adulthood will look like for them. Ideally, we are looking to have a person-centered collaborative approach with our children’s teams to build a plan that works for their desired life outcomes.
In high school, a lot of emphasis is placed on curriculum and life skills, but there are more options to consider when creating a transition plan that is individualized to the youth. We are talking about person centered planning for the child’s future, which includes adult functional living skills (AFLS), healthcare, career/ day programs, guardianship or alternatives to guardianship, finances, and housing. A lot of the planning will be coordinated through our child’s school, but some of it we will need to develop on our own or with a team of trusted support individuals.
School transition begins at 16 according to the Individuals with Disabilities Education Act (IDEA). However, some states have earlier timelines. Parent training and information centers have this information on specifics for each state.
The transition team includes the same members that are typically part of the Individualized Education Plan (IEP) team, although it is possible to have additional members. Some team members included are: parents, special and regular education teachers, related services providers, case managers. The child study team is required to invite the participation of the student. Additional members may include children system of care case managers, therapists, and Division of Vocational and Rehabilitative Services providers (DVRS). This team will be collaborating together to create a transition plan that is individualized to the student. The plan should be devised to support the student in achieving academic and life skills goals. Life skills goals include so much more than daily chores. It’s money management skills, self-advocacy skills, social skills, and healthcare management skills.
Tara’s school has been very supportive of assisting to develop these areas. Her son needed to learn to use the blood pressure cuff, so the school got right on board, and we made a goal to practice in the nurses office. Thanks to their efforts he is now able to go to the doctors and allow the nurse to take his blood pressure. This is a critical life skill that can have a major impact on his success in the community. At age eighteen young adults become legal adults, and that is a crucial milestone for their independence. It is a time when parents and their young adults must discuss and make choices about their long term decision making plans, because once they turn eighteen, all decision making power transitions to the young adults, unless the parents seek and obtain guardianship.
As the children enter legal adulthood, it’s important to understand the Family Educational Rights and Privacy Act (FERPA). FERPA is a U.S. federal law that protects the privacy of student education records, giving parents the right to access, request corrections, and control the disclosure of school records, and to apply to schools receiving federal funds. However, when the children turn 18, those rights transfer to them directly. Parents can continue to be a support to them with a signed FERPA privacy form which will allows their child’s high school (or college program) to speak with them while continuing to support them through their journey into adulthood. It is however noteworthy that a signed FERPA privacy form only waives privacy, it does not allow the parent or trusted adult to make decisions on behalf the student or young adult, as was the case before the young adult turned 18.
As students age out of high school they need to develop skills and knowledge in the domains of post-secondary education and training, employment, independent living, and health. The IEP transition plan is the roadmap on how to complete the goals necessary to achieve the desired life after high school.
Tara’s twin teens share the same birthday, but are following distinctly different transition paths based on their individual strengths and needs. Although both are eligible for school services until age 21, their educational focuses and support systems look quite different. Tara’s daughter is progressing toward employment and is working on a combination of academic curriculum and community-based instruction. She receives support from the Division of Vocational and Rehabilitative Services (DVRS), which helps her explore potential career paths and develop the skills needed to pursue a career that aligns with her abilities and interests. Tara’s son is taking a different path focused on preparing for adult life through a day program model. His school program emphasizes functional living skills and the ability to navigate daily routines with appropriate support. Rather than vocational services, he receives social-emotional learning support that helps him build self-regulation skills and develop other important self-care abilities.
Tara cannot overstate how important it is that whatever plan is created should be based on the child’s strengths and needs. Most young people benefit from a balanced approach that combines academic instruction, community-based learning, and skill development. Even those students in inclusion classes may really benefit from community instruction, especially when soft skills are needed to find and secure a job.
Tara asked her daughter Sophia what she enjoyed the most about her school plan and she shared: “I really like the Bru Crew, it teaches me math and to talk to people. I like to work at the cash register!”
This plan works for Sophia because working in the school coffee shop targets a need, talking to people and improving math skills, and a strength, using the cash register. This combination increases the chances of successful improved learning of needed skills, because it is being paired with something she is good at doing already. Teaching these skills prepares and empowers students for real world experiences that will be a regular part of their day-to-day life.
Health teams include anyone who assists the youth to make healthcare decisions. While it may be tempting to keep that circle small, it is important not to limit the team so that the young adult can obtain the information needed to be successful in managing healthcare needs. Doctors, nurses, patient advocates, social workers, close friends, family, case workers, group home leadership can all participate in supported decision making to assist the young adult in making informed healthcare decisions.
Young adults with disabilities are entitled to the same respect and privacy as those without disabilities. They may however need additional support to participate in their own medical care. For instance, the young adult may find it valuable to connect with a trusted same gender adult to determine if a symptom is worrisome before sharing a sensitive concern with a parent, primary caregiver, or medical provider.
It is also a reality that sudden medical concerns, surgical procedures, or specialty medical care will require consent, and it is important that the health team be there for the youth to assist in making these important healthcare decisions. The young adult may need multiple conversations with a variety of trusted people from the team in order to understand the risks, benefits, and outcomes of medical care being offered, so that the young adult can make informed decisions regarding healthcare.
It’s important to note that once young adult are18, they become the sole decision maker for themselves. Parents and their young adult can obtain a Health Insurance Portability and Accountability Act (HIPPA) Authorization form that gives professionals on the young adults medical team, permission to share the young adult’s health information with the parent. However, just like with FERPA, this form only gives the parent access to information, it does not grant the parent the power to make decisions about the young adult’s healthcare.
Both of Cindy’s children share the same genetic diagnosis but their needs are not the same. The way PTEN impacts them and their needs is very different. Cindy’s oldest requires more support with organization and memory than her youngest, so as he got closer to adulthood they spoke with his medical team and put the necessary privacy forms in place for him to be able to access his family history and for his provider to share information with the parents, so they can insure his care is not compromised by his ability to access or remember medical terminology. He also needs reminders for medication management in order to stay on track. When they started this process, they were not sure what to expect, but it’s been a great exercise for his advocacy skills.
Corie uses his providers, a social worker and his Dad and Cindy all working together to help him understand what he is agreeing to. If he does not agree, they make changes. They always work on a system that he feels comfortable with. He’s 19 now and they are still changing things that aren’t working the way they need them to, but when everyone is on the same team supporting the young adult, it’s a much easier path to success.
Learning to navigate their own doctor’s appointments is a critical skill in daily life. Cindy thinks it’s important that young adults with disabilities gain experience being active participants at their medical appointments. Cindy takes her children to their appointments and steps back. She only directs or speaks when it is appropriate to support her young adult. If medical professionals speak to her as the parent, she redirects them to speak to the patient, but will support as needed. Not only does this give them ownership and power over their healthcare, it provides a means to build confidence and work on self-advocacy skills.
For parents who have young adults who aren’t yet capable of this, they can still empower them during the appointment. The parents can have them participate by asking them simple questions, requesting their cooperation with the various medical exams, instead of just expecting it. Parents can actively listen to what they are saying with their words or body language.
It is important for young adults to develop self-advocacy skills, understand their disability, recognize their strengths and challenges, and learn how to ask for what they need. These skills are essential as young adults move into postsecondary education, employment, healthcare, and independent living. During the years the young adults were in grade school, parents were their primary advocate. As they enter adulthood, this role begins to shift. While this transition can feel uncomfortable, the young adults must learn to speak for themselves, including expressing needs and preferences that may not always align with what the parents would choose for them.
It is also important to recognize that transition looks different for every youth. Even twins with the same diagnosis, educational support, and family environment may have very different strengths, challenges, and readiness levels. One young adult may independently need accommodations early on, while another may need more practice, coaching, or alternative strategies. Success should not be measured by how a sibling or peer completed a task, but by whether each individual has a plan that reflects that individual’s strengths, needs, and goals.
As young adults build independence, shared decision making plays an important role. Shared decision making recognizes that adults often seek input from others when making choices. Most adults can likely recall a time they called or texted a friend for advice about a job decision, a medical concern, or a challenging situation. This is a typical and healthy adult behavior. For young adults with disabilities, involving trusted supporters in the decision making process should be framed as a normal experience, rather than as an indication that they are unable to make their own choices. Shared decision making allows the young adult to remain at the center of decisions while benefiting from guidance, perspective, and support as needed.
Practicing self-advocacy and shared decision making skills in supported environments, such as a doctor’s office or an IEP meeting, before a young adult turns 18, can make this shift feel less stressful. These experiences help young adults learn how to express preferences, ask questions, weigh options, and accept support, while still maintaining control over their decisions. They also allow families and professionals to identify areas where additional instruction or support may be helpful.
Cindy found that one of her children needed extra support learning how to ask for help discreetly at school. He experienced significant anxiety when asking for help publicly. To support him, she worked with his high school teachers to develop a plan where they would check in with him if he appeared off task. Over time, those prompts decreased as his confidence grew and he began advocating for himself. In college, he continues to receive reminders from his advisor and from Cindy about the accommodations available to him and how to ensure they are used throughout the semester.
Recently, he needed to request additional time for an exam. When Cindy asked how it went, he shared: “When I asked for help I was really nervous. But when it was granted, I was so relieved because I knew I needed quiet to focus and do my best.” Following this exam, he felt confident enough to ask the professor for feedback when his grade was lower than expected. During the review, the professor discovered a grading error and his score was adjusted significantly. Without opportunities to practice self-advocacy and shared decision making, he may not have felt comfortable asking questions or seeking clarification. This experience reinforced that learning to advocate for oneself and knowing when to seek input from others are key components of adulthood and long-term independence.
It is important to understand that the young adults’ teams will be individualized to their specific needs, goals, and strengths. There is no single model of support that works for every young adult. A team for a young adult with cerebral palsy may look very different from the team needed for a young adult with intellectual or developmental disabilities, just as the team for one sibling or twin may look entirely different from another. These differences do not reflect ability or potential, but rather the unique combination of supports each individual needs to be successful.
As the young adults continue to build self-advocacy skills and engage in shared decision making, their team may evolve over time. Some supports may fade as confidence and independence increase, while others may remain in place or change depending on new environments, expectations, or challenges. This process mirrors how typically developing adults rely on different people at different points in their lives, whether that means consulting a colleague, seeking medical advice, or calling a trusted friend for input before making an important decision.
Families play a key role in helping identify the support people, tools, and plans that work best for their young adult, while also honoring their young adult’s voice and preferences. The goal is not to remove support, but to ensure that support is appropriate, respectful, and centered on the individual. By recognizing that transition is not one size fits all, and by intentionally building a team that reflects the young adult’s needs, families can help create a strong village that promotes confidence, autonomy, and meaningful participation in adulthood.
ABOUT THE AUTHORS:
Cindy Weber is the Early Childhood Training and TA Specialist for the New Jersey Inclusive Child Care Project and a Family Engagement Coordinator for the Genetic Alliance, both of which are projects that are part of New Jersey’s Parent Training and Information Center (PTI). In addition, Cindy is the Board President of the Cumberland Gloucester and Salem Family Support Organization. Cindy and both of her children all share a diagnosis of PTEN hamartoma tumor syndrome. Through their diagnostic journey and beyond Cindy learned to adapt to a parenting journey full of unexpected specialists and last minute changes. Cindy is a member of various committees serving New Jersey families as well as serving families of children with disabilities nationally through her volunteer work with the Rare Disease Legislative Advocates.
Tara Szymanek is the Southern NJ Regional Family Engagement Specialist on the NJ Family Engagement Hub, and a Special Education Volunteer Advocate (SEVA). Tara is a board member on the Southern New Jersey Early Intervention Collaborative (SNJEIC) and is an active Rare Disease Legislative Advocate (RDLA) for the EveryLife Foundation for Rare Diseases and advocates on behalf of the National Fragile X Foundation (NFXF). Tara has boy/girl 14 year old twins living with Fragile X syndrome, epilepsy, and intellectual and developmental disability (I/DD). Tara has spent their whole life navigating the various systems supporting her children’s unique health and education needs and continues to take on all these challenges utilizing the formal and informal supports available to her family.
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