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disabilities

We wrap up our annual Dialogue on Disability Week with a conversation about sports, media, and inclusion. Special Olympics New York is celebrating 50 years. We’re joined by an athlete who has been part of the program for 40 years, as well as RIT photojournalism students who have covered athletes’ stories.

We discuss how sports can help people discover new abilities and strengths, and how effective media coverage can help create a more inclusive society. In studio:

  • Patty VanSavage, athlete and member of the Great Tigers Club
  • John VanSavage, Patty’s brother and coach with the Great Tigers Club
  • Stacey Hengsterman, president and CEO of Special Olympics New York
  • Jenn Poggi, assistant professor of photojournalism at RIT
  • Josh Meltzer, assistant professor of photojournalism at RIT
  • Jackie Diller, photojournalism major at RIT
  • Ashley Crichton, advertising photography major at RIT

This story is reported from WXXI's Inclusion Desk.

As part of Dialogue on Disability Week, we continue our series of conversations about inclusion and disability rights.

This hour, we discuss the value of respite programs for caregivers and people with disabilities. Respite programs provide a variety of short-term, temporary services that allow family members to take a break from the day-to-day schedule. Research shows respite programs can improve family stability, but many people who participate in them – or would like to – say the system is difficult to navigate.

Our guests discuss their experience with respite programs, and we talk about how to make them more easily accessible for families. In studio:

  • Stephanie Woodward, disability rights advocate with DisabilityDetails.com
  • Patsy, mother of a teenager who attends Epilepsy-Pralid’s after school respite and recreational respite programs
  • Joe Abbott, vice president of operations and COO at Epilepsy-Pralid
  • Dayna Wells, community services supervisor at Epilepsy-Pralid
  • Tia Guthrie, manager of waiver services at CP Rochester

This story is reported from WXXI’s Inclusion Desk

A local sixth grader is going viral in our community. At the age of 14 months, Oscar Merulla-Bonn was diagnosed with spinal muscular atrophy. He's been driving a power wheelchair for years. Oscar recently gave a presentation to his school faculty about disability rights. He joins us this hour to share his research and experience, and to discuss how to create more inclusive spaces.

In studio:

  • Oscar Merulla-Bonn, sixth grader at Twelve Corners Middle School
  • Sally Bittner Bonn, Oscar's mother
  • David Merulla, Oscar's father
  • Catherine Liebel, school counselor at Twelve Corners Middle School

This story is reported from WXXI’s Inclusion Desk

What do young adults with intellectual disabilities and their caregivers need to know as they prepare to exit the school system? It's a question that will be addressed at an upcoming conference hosted by Nazareth College and AutismUp.

We're joined by conference organizers and participants to discuss medical care, housing, employment, and more. In studio:

  • Rachel Rosner, director of education and support services for AutismUp
  • Cyndi Kerber Gowan, lecturer in education at Nazareth College and faculty liaison for LifePrep@Naz
  • Jake Collier, self-advocate

NPR investigations correspondent Joe Shapiro joins us in studio. He’s in Rochester to speak at the American Academy of Developmental Medicine & Dentistry Conference. We talk to him about the state of journalism, and his work covering issues that impact people with intellectual and physical disabilities. In studio:

  • Joe Shapiro, NPR investigations correspondent
  • Dr. Steve Sulkes, M.D., professor of pediatrics at Golisano Children's Hospital at Strong
  • Dianne Cooney Miner, associate vice president for community engagement, and dean at the Wegmans School of Nursing at St. John Fisher College

This story was produced by WXXI’s Inclusion Desk, focusing on disabilities and inclusion.

We get an update on the “Spread the Word to End the Word” campaign, which seeks to eliminate the use of the "r" word and end discrimination against people with intellectual disabilities. The campaign has evolved to become "Spread the Word: Inclusion." 

Local organizers share their perspectives on the campaign's success, and discuss efforts to promote inclusion in our community. In studio:

  • Lindsay Jewett, area director for Best Buddies Rochester
  • Amy Cawley, sophomore at Webster Thomas High School and Best Buddies Chapter President
  • Rebecca Ritter, Best Buddies Global Ambassador, and student at Hobart and William Smith Colleges
  • Jaxon Smith, senior at Nazareth College and Best Buddies Chapter President

This story is reported from WXXI’s Inclusion Desk

New York State has launched new, optional ID cards for people with intellectual and developmental disabilities. The goal is to help law enforcement and first responders better interact with people who may not be able to effectively explain the situations they are in.

The cards come with mixed reviews, especially on how effective they may be. We explore the issue with our guests. In studio:

We're joined by former Senator Tom Harkin of Iowa, who authored the Americans with Disabilities Act. 

Research shows that among similarly sized cities, Rochester is the single worst in the country when it comes to employment and poverty for people with disabilities. 

Harkin is the keynote speaker for the upcoming ROC EmployABILITY conference, which is focused on increasing employment opportunities and reducing poverty among people with disabilities. We preview that conference. In studio:

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:

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

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