WXXI AM News

Inclusion Desk

Malinda Ruit/WXXI News

People like Jonathan Jackson tend to have an entourage. An entourage can consist of professionals and family members who support someone with disabilities in all kinds of ways.

Often, family members do the bulk of caregiving, and as children grow up, questions arise: What will adulthood look like for them? Who will lead their future entourage? 

Veronica Volk/WXXI News

When Akin Johnson was nearing the end of high school, he was clear about what he wanted to do next. He wanted to get a job.

In recent years, there has been a push to get people with disabilities into the general workforce. But despite these initiatives, some students like Akin who aspire to work are running into a problem. They’re being told they’re not independent enough to make it in a work environment.

Classically trained violinist and songwriter Gaelynn Lea has been immersed in music since her childhood. While she says her primary focus in life is on her career as a musician, it was her rise to fame after winning the 2016 NPR Tiny Desk contest when she also took on a new role - that of a disability advocate and public speaker.  During a recent concert in Rochester at Nazareth College, Lea told Need to Know that the underrepresentation of people with disabilities in the arts has given her a new stage to share a powerful message.

We conclude our Dialogue on Disability Week with a conversation about "invisible" disabilities. Our guests share the challenges they face living with multiple sclerosis and epilepsy. In studio:

freeimages.com/Jos van Galen

Some 2,000 Rochester area residents with disabilities are in need of housing.

And that number only reflects individuals who get services through one state agency, the New York State Office of People With Developmental Disabilities.  The overall need for affordable, accessible housing is even greater.

This has always been an issue, but it's become a bigger problem in recent years, as more people are interested in living independently.

Our Dialogue on Disability Week continues with a conversation about adaptive sports. According to the CDC, nearly half of adults with disabilities ages 18 to 64 do not get aerobic physical activity. Local organizations are helping to change that by offering opportunities in adaptive sports.

We hear the stories of local athletes in those programs. Our guests:

  • Michael Cocquyt, supervisor of SportsNet
  • Jen Truscott, alpine skier
  • David Grace, sled hockey athlete, who participates in many winter sports

The independence that sports can bring to people with disabilities is something that is explored in a documentary about a wheelchair basketball team that will be shown in Rochester this week.

It’s called The Rebound, and it will be shown Wednesday evening at The Little Theatre, followed by a discussion afterward including a Skype interview with the film’s director. WXXI and the Al Sigl Community of Agencies are partnering for this free screening.

Magical Storybook Travels

Nicole and Chris Thibault dreamed of having a family of avid travelers. And when they had their first son, Tristan, they started making that dream come true: A cruise when he was 6 months old, his first trip to Disney at 1 1/2.

But a year later, something changed. The three of them were standing in line to enter Disney World.

We begin 2018's Dialogue on Disability Week with a conversation about autism. New research published in JAMA indicates that the rates of autism spectrum disorder among U.S. children remained stable from 2014 to 2016. That's a change from earlier studies, which suggested that autism rates rose steadily over the past 20 years. The authors of the recent study pointed to changes in diagnostic criteria, more public awareness, and more children being referred to doctors as among the principle reasons for the earlier increases.

Yet, as physicians, advocates, and parents are quick to point out, the stabilization shouldn't detract for exploring new treatments and adaptive experiences for children and adults with autism spectrum disorder. This hour, we discuss a range of issues related to autism, and explore options for care in our community. Our guests:

  • Dr. Susan Hyman, M.D., chief of developmental and behavioral pediatrics at UR Medicine's Golisano Children's Hospital at Strong
  • Mary Walsh Boatfield, CEO of CP Rochester, Happiness House, and Rochester Rehabilitation, and co-founder of the Golisano Autism Center
  • Michelle Maney, parent of a teenager who is on the autism spectrum
  • Sandra Erb-Petruccione, parent of an adult who is on the autism spectrum

The largest minority group in the United States is people with disabilities. The individuals within this group are incredibly diverse themselves comprising of different races, cultures, religions and socio-economic classes. Considering this, why don’t we hear more about disability issues in the political sphere aside from so-called campaign promises during election years? And how would more disability representation in politics affect the issues that matter most to Americans with disabilities? Those questions and more examined on this edition of Need to Know.

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