Because hypoxic-ischemic encephalopathy (HIE) can impact development in many different ways (physically and/or intellectually, and with degrees of severity), the appropriate resources for planning transitions to adulthood will vary greatly based on the individual. Some children with very mild HIE may possibly be independent as adults. Some may be independent in certain ways (such as having their own apartment), but may require support in other areas (such as financial planning or transportation). Those with more severe HIE often require specialized, constant care throughout their lives. The following resources will not all be relevant to all children with HIE, but can help parents and caretakers consider various aspects of transitioning to adulthood with a disability.
Higher Education: This page provides information on support organizations working to improve higher education opportunities for people with disabilities, and describes the services each offers. We also list some scholarship opportunities.
Income, Vocational Programs, and Employment: This page discusses supported employment, vocational training, and more.
Housing: This page can help readers explore housing options, both for those living with family/friends, as well as those living independently or outside the home.
Developing a Portable Medical Summary: As a child grows, they eventually will need to transition medical providers, especially if their primary doctor is a pediatrician. Here, we discuss how to create a ‘portable medical summary’ in order to smooth this process.
IEPs and the Transition Between Life Stages: This page gives an overview of Individualized Transition Plan (ITP)s, which are formal plans for helping special education students transition from student life to adult life.
Transportation: Here, we summarize transportation options for people with disabilities, including modified vehicles and public transit systems.
Financial Assistance: As individuals age and are no longer considered minors, the funding options available to them can change. Here, we discuss a few forms of financial assistance for adults with disabilities.
Parents may also find it useful to look at different guides for helping their children transition to adulthood. For example, the Minnesota Department of Human Services provides a comprehensive 68-page planning guide to help parents with the transition of their child from adolescence to adulthood. The Family Resource Guide also provides a step-by-step transition guide that covers planning beginning at age 14. The Pacer Center also provides a guide for transitional planning, including transitions between middle and high school, high school to college, and education to adult life and work.
Do you need someone to talk to?
Your child was just diagnosed with HIE and your head is spinning with what may feel like a thousand different things. Questions, medical terms, care plans; it can be difficult to make sense of everything that has happened.
As you start to do your research on exactly what your child’s diagnosis means, you may be bombarded with facts, information, and advice regarding HIE, and you may be lost as to where to turn next.
We want to hear your story. HIE Help Center is owned by ABC Law Centers (a birth injury law firm). The intake team at ABC Law Centers is here to listen to every detail of what you and your family may have gone through during labor and delivery. Although we are not doctors and cannot provide medical advice, our team can provide you with resources specifically tailored to your situation. Our team has reviewed and handled thousands of cases and is trained to recognize if there may have been medical malpractice that lead to your child’s diagnosis, and we can advise if taking legal action may be beneficial to you and your family.
Call us at (888) 329-0122 to speak with a member of our intake team.