Who Cares about Kelsey?

Documentary aims to educate others about emotional/behavioral disabilities

My son Samuel is a Red Sox and NASCAR fan, an avid bird watcher, an honor roll student and a gregarious 13-year old who also experiences cerebral palsy.  I began making the film Including Samuel for selfish reasons. I wanted to try to make the world a more welcoming place for kids with disabilities like Samuel.

Since my film Including Samuel premiered in 2007, I’ve screened and discussed the film hundreds of times. One event in Buffalo, N.Y., particularly stayed with me. I sat next to a mom on a panel who described her precarious morning routine.  Her son had an emotional/behavioral disability (EBD), and he needed to have just the right food, wear just the right pants, and follow to the same precise routine  or he would have a complete meltdown.  But when out in public with her son, she would be quickly judged as a “bad mom” because of his challenging behavior.

 “They have no idea what it takes just to get my son out the door every day,” she said through tears.

In fact at almost every Including Samuel screening someone asks a variation on this question: “What about kids with ‘hidden’ disabilities? Can they be fully included like Samuel?” These hidden disabilities can include depression, anxiety, autism, ADHD, bi-polar disorder, post-traumatic stress disorder, eating disorders and a host of other diagnoses.

The journalist part of my brain thought if this question keeps coming up, there must be an important story to be told through a film. When I researched the outcomes for students with EBD, I was shocked by the statistics. The Southern Poverty Law Center and The Journal of Emotional and Behavioral Disorders report that students with EBD:

  • Have the worst graduation rate of all students with disabilities. Nationally, only 40 percent of students with EBD graduate from high school, compared to the national average of 76 percent;
  • among the most segregated of students – 65 percent are not included (i.e. they spend less than 80 percent of the day in regular, general education classes);
  • are twice as likely as other students with disabilities to live in a correctional facility, halfway house, drug treatment center, or on the street after leaving school.

I wanted to create a film project that – like Including Samuel – could be a catalyst for progressive educational reform. Dr. JoAnne Malloy and other colleagues at the IOD encouraged me to visit Somersworth High School.  In 2006, Somersworth High had one of the highest dropout rates in the state, and discipline issues were rampant.  The school participated in a NH Department of Education grant called APEX, which provided training and support for high schools to implement an evidence-based framework called Positive Behavioral Interventions and Support (learn more at pbis.org).  

Somersworth High School worked with the APEX staff at the Institute on Disability to develop a clear and concise outline of the behaviors that were expected of students, and made it clear how discipline problems were to be addressed.  Rather than rely on punitive zero tolerance approaches, which have no research evidence for improving school climate or reducing the dropout rate, SHS focused on building a caring school community and created incentives for positive behavior.

For those students who were at greatest risk of dropping out of school, Somersworth implemented RENEW (Rehabilitation for Empowerment, Natural Supports, Education, & Work), a youth-led planning model founded by Malloy.  The results were dramatic:  by 2010, Somersworth reduced its dropout rate by 75 percent, and behavior problems were reduced by 65 percent.

I asked Principal Sharon Lampros if I could spend a year documenting life at SHS, and she bravely opened up her high school to my camera and me. I spent the spring of 2009 getting to know the students and staff, and documenting the school culture and climate.

Kathy Francoeur was the school’s crisis intervention counselor (she is a now a RENEW trainer at the IOD) and in the fall of 2009 she introduced me to many teens that were struggling with emotional/behavioral disabilities – most were at risk of dropping out of school. 

When I met Kelsey Carroll, I knew Kathy could stop making introductions. When Kelsey entered Somersworth High School, she was a more likely candidate for the juvenile justice system than graduation.  She had a diagnosis of ADHD and carried the emotional scars of homelessness and abuse, as well as the actual scars of repeated self-mutilation. As a freshman, she didn't earn a single academic credit and was suspended for dealing drugs.

During our first interview, Kelsey was incredibly open about her struggles past and present.  She was brash and funny.  She told me about bouts of self-mutilation, her mother’s substance abuse, and her pride at being a cheerleading captain.  Kelsey agreed to let me film her in school, at home and in the community, and she was able to largely ignore the camera (a must for the subject of a documentary film). 

From the beginning, I told Kelsey that she was a collaborator, not just a subject of this process. At any time, she could tell me to turn off my camera (she used that prerogative a number of times).  She watched many rough cuts of the film and suggested valuable edits. 

The resulting film, Who Cares About Kelsey?, follows Kelsey through her senior year and beyond, and shows what successful school transformation looks like on the ground, in a real school, through the eyes of a student.

Although Kelsey’s story is far reaching, I still couldn’t capture all the issues I wanted to address in one film, which is why I also made nine mini-films about other students with emotional/behavioral challenges, including a student with autism and several incarcerated youth (mini-films can be seen at whocaresaboutkelsey.com)

Kelsey probably didn’t envision that our collaboration would continue for two years of filming and a year of editing and a year (and counting). But, she says, “I knew that this film would have the power to open minds and help a lot of other teens like me.”

Kelsey had never gone on a plane until her senior year in high school. Now she is traveling all over the country, co-presenting with me at film screenings and also about RENEW.  She can stand up in front of 1,000 people without being nervous – she’s a powerful public speaker.  She has also completed a financial literacy course, purchased a new car, lives on her own and attends college with a major in psychology.  She wants to become a guidance counselor.

This is not a fairy tale – she still has challenges and obstacles. But by sharing her life story, she has already made a dramatic impact on the way tens of thousands of people view hidden disabilities like ADHD and other mental health disorders.

Kelsey and I hope that the Who Cares About Kelsey? Project will make viewers reconsider the "problem kids" in their own high schools and spark new conversations about empowering – not overpowering – youth with emotional and behavioral disabilities.

For more information on RENEW or Who Cares About Kelsey?, go to iod.unh.edu/Projects/renew/ or whocaresaboutkelsey.com. To see if your school or organization is eligible for a free educational DVD kit, contact Karen.Clausen@unh.edu.

Dan Habib is the creator of Including Samuel and the new film Who Cares About Kelsey? Habib is the Filmmaker in Residence at the Institute on Disability at the University of New Hampshire. Who Cares About Kelsey? has been screened at 10 film festivals, winning Best Feature Film at the Lights Camera Help Film Festival. Dan and his wife, Betsy, live in Concord with their sons Isaiah, 16, and Samuel, 13.

Categories: Real Stories