National Volunteer Month: Q&A with Lee Carrion, Advocate & Parent

Posted on April 9, 2021

April is National Volunteer Month, and we’re excited to share some Q&As featuring our Volunteer Advocates.

Tina Chan Sweenie, our Manager of Volunteer and Donor Engagement, caught up with some of Penn-Mar’s incredible advocates to learn a little bit about them and why they’re so passionate about amplifying the voices of the intellectual and developmental disabilities (IDD) community. You can also learn more about Penn-Mar’s advocacy efforts here.

First up is Lee Carrion, advocate and parent of a person supported by Penn-Mar . . .


Q: Why is volunteering your time to advocate for people with intellectual and developmental disabilities (IDD) important to you?

A: I began volunteering as a Special Olympic swim coach in 1975 as a teenager. Simultaneously, I was a self-advocate for the inclusion of severe dyslexic students in competitive academic communities. During my year as a coach, I witnessed an extreme implicit bias directed toward the athletes I adored and admired. At first, I ignored those people. One day, I noticed an entire group leave the pool as we were about to enter, and heard nasty unacceptable insults targeting my people. That was the day I transformed from volunteer to advocate.

Q: What has been the response to your efforts?

A: In the beginning, the 1970s, my efforts made little difference. But as society grew more inclusive and I gained more and calmer advocacy tools, I found that I could make a small impact through persuasive argument and storytelling.

Q: Tell us a bit about yourself, do you have a background in advocacy?

A: As an advocate, I have stood as a student, special education teacher, and mother fighting for various groups, most notably for folks with IDD.

Q: What does Penn-Mar Human Services and their Direct Support Professionals (DSPs) do for your family? What would life be without DSPs?

A: My daughter, Miss Pud, has Down Syndrome, Autism, and enormous behavioral challenges, coupled with a non-verbal issue. Miss Pud’s DSPs allow my family to rest in confidence that she is well cared for, accepted for all her exceptional qualities, and loved. As we age, I cannot fathom our lives without her DSPs’ daily support for Miss Pud’s high quality of life. She is living the adult life I always dreamed of giving her because of these dynamic and caring trained professionals. They bless us.

Q: How does the DSP workforce crisis affect your family’s life?

A: The DSP workforce crisis affects our family’s life in finding and retaining excellent staff who are willing to work with her. Penn-Mar does an exceptional job of locating those special people. Unfortunately, due to low pay and lack of respect for their professionalism, this task is becoming increasingly difficult. My darling spunky daughter requires vigilant one-to-one staffing 24/7. In particular, when funding depends on state and federal officials recognizing the extreme and urgent need to support these professionals for their level of expertise, training, and multi-tasking abilities, the present crisis is critical. The need for more and appropriate funding that reflects their skill set should be a valued initiative for the broader society, as we fight to abolish stereotypes and prejudices against the IDD community. We must all understand and advocate together to lend our voices for political and social change to promote DSPs as essential members of a broader definition of inclusion and acceptance.