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ABGC Updates

4.1.2023

ABGC Spotlight: Stephanie Meredith

Stephanie Meredith is the Medical Outreach Director at the Human ‎Development Institute of University of Kentucky.‎

What motivated you to become such an active advocate for individuals ‎with developmental disabilities?

When my son was born with Down syndrome 21 years ago, I received ‎thoughtful and comprehensive support immediately, which helped me ‎access service and supports. When I learned that other parents were having ‎more difficult diagnosis experiences, I was motivated to help them receive ‎the same level of support and information that empowered us. I want to ‎help make sure no one feels alone on that journey. I also want to help ‎ensure that families receive accurate, up-to-date and balanced information ‎about genetic conditions because outcomes truly have changed ‎dramatically for people with disabilities over the past 50 years. ‎

As you know, 31 years ago the Americans with Disabilities Act (ADA) ‎became law. What has the ADA meant for you, your family and others ‎with disabilities? How has it helped? What additional work could be done ‎to improve its impact?

It’s still mindboggling to me that people with disabilities did not have civil ‎rights legislation until 1990. On an individual level, the ADA has specifically ‎enabled my son to get access to employment supports and to use accessible ‎features on his phone, which allow him to communicate with friends. ‎However, I think the greatest achievement of the ADA is the recognition ‎that people with disabilities belong to a historically marginalized population ‎and deserve to be included in their communities like anyone else. Even ‎though people have the legal standing to assert their rights, I believe that ‎we now need cultural competency training about disabilities disseminated ‎among the broader population to convey why inclusion is important.‎

You have collaborated with many health professionals, including genetic ‎counselors, to improve parents’ experiences receiving a prenatal or ‎postnatal diagnosis of a genetic condition. What are some of the lessons ‎you have learned from these collaborations?

I’ve always believed that medical professionals want to help parents have ‎the best possible diagnosis experience, and genetic counselors are some of ‎the most thoughtful, sensitive professionals in the field. However, ‎sometimes professionals need training and resources to know how to ‎discuss disabilities, particularly in a society where many people have ‎unconscious bias about disabilities. I’ve found that the very best medical ‎professionals I’ve worked with—and who have become some of my dearest ‎friends as we’ve published, presented, and collaborated together on ‎training and projects—take the time to genuinely listen and immerse ‎themselves in the communities they serve and are collaborative. When ‎working together, you have to come from a place of mutual respect and ‎consideration and unify around the goal of serving patients and ‎communities.‎

What can genetic counselors and other health professionals do better to ‎support families?

When receiving a diagnosis, families do want to understand the medical ‎issues associated with conditions and treatment options, but they also want ‎to know what life is like and where to turn for support. Families want to ‎know the medical issues and life outcome information and available ‎supports, services and advocacy organizations. For many families, the ‎moment of diagnosis can be traumatic—not because of the diagnosis itself ‎but because they feel isolated and uninformed or receive the news with an ‎overly negative bias. The best way to prevent that is to discuss the diagnosis ‎neutrally, without presuming a disability diagnosis is bad news, and sharing ‎accurate, balanced and up-to-date resources right away.‎

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