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 Real Life Story

Preconception Health and Young Adults with Disabilities

By Teresa NguyenTeresa.jpg
Ryan Colburn 2014 Scholarship Recipient

When I turned 18 years old, I headed off to college with many unanswered questions about my future. Logistical ones consisted of (but not limited to): How difficult were my undergraduate courses going to be? How could I make my level of independence compliment my goals? What career was I going to pursue after my four years of college? Of course, the young adult experience isn't just about education and career pursuit. I also had questions pertaining to my personal life. What would the process of joining a sorority look like for me? What would driving a car look like for someone who is a little person? How many intimate relationships would I have? I found that my concerns weren't very different from the other freshman on my campus.

Luckily I found answers to most of those questions as time passed, but the relationship question made me think about how reproductive health education is often unavailable for youth and young adults with special health care needs. Like most of my peers, I knew that I wanted to have a family some day and growing up, I wondered what preconception health would entail for someone like me. As a woman who has a genetic disorder and uses a wheelchair for independence, I anticipated that almost every stage of my life was going to require more planning than the average person – and reproductive health was no exception. Through experience and conversations with my personal and professional networks, I've found that often times – unless a young adult is willing to ask or share about their reproductive health experiences – there is a lack of dialogue between the health care provider and the young adult with special health care needs, due to assumptions about our ability (or inability) to be sexually active. Berlin et al. (n.d.) perfectly captures the barrier this creates:

Assumptions and judgments that youth with disabilities could not, or should not, be sexually active or become parents creates barriers to information and missed opportunities in medical care that will allow them to plan their pregnancies, have healthy, safe relationships and participate in preconception health behaviors. (p. 7).

Many states across the country are incorporating preconception health into their needs assessments, but unfortunately youth and young adults with special health care needs are not addressed in the recommendations that are published. With one in five women in the United States having a disability, the reproductive health conversation needs to start now (p. 6). ​

Engaging youth may be easier than it seems. Healthy People 2020 lists an objective to increase the number of youth with special health care needs that discuss transition planning from pediatric to adult care, with their primary care provider. This is a wonderful opportunity to embed reproductive health dialogue into the transition plan. It would be a way that providers could connect and engage with their youth and young adults with disabilities about what their future looks like, and how that lines up with their personal goals. The work doesn't have to fall completely on the primary care provider to address the full scope of preconception health, ideally – the provider could make a referral to a genetic counselor for further education. I am fortunate to have a provider that provides a safe environment to have these conversations in, but I recognize there is more work to be done around this area. I have confidence that collaboration between stakeholders such as public health professionals and health care providers can help address this problem, and I look forward to discovering the creative recommendations that preconception health initiatives will come up with for this modern issue.

 

References:
Berlin, M., Cole, J., Coulter-Thompson, E., Dixon-Gray, L., Isabelle, L., Lewis, M., … Nystrom, R. Preconception health recommendations for young adults with disabilities: A Final report from an action learning collaborative. Retrieved from: http://1.usa.gov/PCHRec4YAwDis