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 Real Life Stories

Transitioning into Adulthood: Can You Hear Me?

By Millicent Bright
Intern, Women's and Infant Health, AMCHP

Youth engagement in programs, practices, and policies that affect them is critical in promoting positive youth development and empowerment. Capitalizing on the strengths and unique contributions of all youth, programs can establish a comprehensive youth system that efficiently supports the development, health, and well-being of youth and young adults. For this real life story, AMCHP sought out feedback from three transitioning youth with special health care needs (YSHCN). Their feedback provides important perspectives on essential health care needs and services that most impact their transition to adulthood.

Mallory Cyr is the National Youth Program Manager, at Got Transition – the National Healthcare Transition Center in Concord, NH.

Steven Nguyen is a full-time student, at Delgado Community College in New Orleans, LA and also the Youth Liaison at the CSHS Family Resource Center and the Louisiana Parent Training & Information Center at Families Helping Families of Jefferson. He is the 2013 recipient of the Ryan Colburn Scholarship Award.

Bryson Pitre is a junior at Cherry Hill East High School in New Jersey and an active member of NJ YELL (Youth Excelling to Lead & Learn), an organization engaging YSHCN in decisions affecting their transition to adulthood. NJ YELL presented at the AMCHP 2013 Annual Conference.

Why is it critical for youth to be included in conversations around their needs, services, transitions, etc.?

Steven: It affects them the most and it also promotes self-advocacy.

Bryson: Because parents and adults think they know what we need but they really do not have much of an idea what is going on. A parent cannot assume ANYTHING about their child’s needs whether that be sexually, emotionally, etc. Things have changed greatly since the parent’s generation. Parents must understand that the present generation is undergoing more temptations, stress and obstacles than any so far.

Mallory: Because it’s THEIR LIFE. It is very daunting to just be told to "transition." "Grow up," or "make a plan," in order for a transition to be successful, there needs to be many aspects that are thought about and planned out. If adults support youth to be at the center, and think about what they want for themselves, then planning can occur to make sure all of these steps are planned out with health and safety in mind. Also, young adults are more likely to comply and even be energized from plans that they want to see happen and are passionate about.

What are some key services that are necessary to support youth in transition?

Bryson: Having a community office, where teens can go for advice and assistance with issues they will face like housing, college, and providing for themselves. Financial aid and even family planning also are important parts of a teen’s transition and should be included.

Mallory: Regardless of what "supports" or resources there are, what is really needed for transition is: consistent health insurance, steady income, and accessible housing. So someone who can help a young person navigate all of those, or learn about their own health insurance would be crucial.

HOWEVER – the reality is, often when a young adult achieves all of the above, they are not eligible for the "resources or services" they may need in addition. What we need is to fix our broken system that is based on deficits vs. successes.

Steven: Some key services that are necessary to support teens in transitioning include health care, vocational rehabilitation, educational opportunities, transportation, peer-to-peer mentoring and family support.

What ways are most comfortable for you to receive information related to sexual health (provider, peer group, literature, parents)?

Mallory: Mostly, I think something I could explore on my own, like a website, or brochure, but then a person I trusted, like an older mentor who could discuss things with me in an honest respectful way (not someone who was uncomfortable by it, or made me feel awkward or ashamed). Example of what I consider an awesome resource: www.bedsider.org

Bryson: Other teens that have experience in this area or possibly a teen’s doctor if they are available. This is a very important part of teenage life and should be treated in such regard.

Steven: Peer groups, literature or health care provider.

Do you have a medical home? If yes, please share one benefit to you. Also, please share an area of improvement.

Mallory: I think I do, though it is not through my source of primary care. A benefit is having a consistent "go to person" if something is wrong, and knowing the methods to get an actual person vs. a series of recorded menus. An improvement would be that I wish this were the case with my primary care, but I recently moved to a new city and am still trying to land primary care that can serve this function.

Bryson: Yes. My pediatrician is like a big brother; I can talk to him about any problems I have. One area that can be improved would be the ability of teens to communicate with their doctors.

Steven: Benefits: Improved quality of services and well-being; Area of Improvement: Shortage of adult care doctors with "special needs" knowledge.

If an organization wanted to start a youth advocate or advisory program, what are your two tips they should be considered for youth engagement and involvement?

Steven: The group should be lead by a youth who has the experience and understands his/her role(s). Have diversity among the group based on things like age and disability levels.

Bryson: Meeting times/locations and money/payment for our time. However, the most important thing is to show your respect and interest for our input.

Mallory: Besides bringing in a consultant, or someone who has experience implementing youth led programs, I think the two most important things are:

  1. Know what you are committing to. Youth schedules are very different from professionals. It will take a LOT of follow up and finding out the best way to communicate with your group, and yes, you may have to work on a Saturday!
  2. Treat them as humans. You don’t have to speak a different language or try to be "hip" to get youth to open up. Treat them with respect, and value the experience and knowledge they bring to the table, but also slow down with the jargon and acronyms.