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Inclusion Desk

The Inclusion Desk is a multi-platform reporting effort by WXXI News to inform and transform attitudes and behavior about inclusion. The Inclusion Desk grew from the Move to Include partnership between WXXI and the Golisano Foundation. Through programming and special events, WXXI and the Golisano Foundation look to build a more inclusive community by inspiring and motivating people to embrace different abilities and include all people in every aspect of community life.

Carlene Knight would love to do things that most people take for granted, such as read books, drive a car, ride a bike, gaze at animals in a zoo and watch movies. She also longs to see expressions on people's faces.

"To be able to see my granddaughter especially — my granddaughter's face," said Knight, 54, who lives outside Portland, Ore. "It would be huge."

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Laura Tobia held up a photo of her two brothers, John and Billy, during a Zoom press conference Friday.

“I want to put a face with their names because they're real people,”  Tobia said.

Both of her brothers live in a group home, and are fully vaccinated.  Billy, however,  has a severe case of cerebral palsy and cognitive impairment, along with a very complex seizure disorder. 

Tobia said, due to the state’s delay on updating group home COVID-19 guidelines, Billy still isn't able to attend his day-hab program.

GiGi's Playhouse

GiGi’s Playhouse Rochester has received a $74,000 grant from the Golisano Foundation to expand its Amina Grace speech and language program. The program helps young people and adults with Down syndrome refine their language skills by providing free one-on-one speech pathology services. 

Vice President Kim Guerrieri credits the foundation for the program’s success. She said a $50,000 grant from the Golisano Foundation helped launch the program in 2019. 

A Rochester organization that provides programs and services for individuals with developmental and intellectual disabilities is raising its base wage for front-line workers.

Heritage Christian Services is raising the pay scale for those employees to $15 an hour for all positions, effective May 9. Heritage officials said that their residential staff, which is the majority of jobs at the organization, will now start at $15.75, with more money for certain shifts.

Heritage Christian said that is a 20% increase for all frontline positions since the start of the year.

Jennifer McDonald

When Leilani McDonald was 2 years old, her mom became concerned about some of her behaviors.

Jennifer McDonald said her daughter wasn’t talking and would only make certain noises. Leilani would often marvel at her hands, and clap while walking in circles.

"I let it go for a little bit, but then I was like, let me just bring her in and get her evaluated just in case,” McDonald said.

Leilani was diagnosed with Autism Spectrum Disorder, or ASD.

According to the Centers for Disease Control and Prevention, ASD is a developmental disability often detected in early childhood that can cause significant social, communication, and behavioral challenges. 

RIT and its National Technical Institute for the Deaf have been awarded a $470,000 federal grant to help deaf and hard of hearing students learn technical skills to better prepare them for the workforce.

The grant from the National Science Foundation will fund a pilot program called DeafTec Ready, according to Rep. Joe Morelle (NY-25).

Max Schulte/WXXI News file photo

A pop-up clinic Saturday will focus on vaccinating Rochester’s deaf refugee population.

The clinic, hosted by the nonprofit Deaf Refugee Advocacy, will offer first and second doses of the Pfizer vaccine to deaf, hard of hearing, and deaf-blind new Americans. 

When COVID-19 vaccines first became available, a local doctor noticed a gap in access when it came to people with disabilities. Dr. Tiffany Pulcino and her team work with people who have intellectual and developmental disabilities and complex medical conditions. They set up mobile vaccine clinics throughout Rochester for their patients. So far, they have helped more than 2,000 patients receive vaccines.

This hour, we discuss the challenges the pandemic has presented for people with disabilities – from access to health care and vaccines, issues related to isolation from support systems, and more. Our guests: 

  • Tiffany Pulcino, M.D., assistant professor of internal medicine and pediatrics at the University of Rochester Medical Center, and medical director of the UR Medicine Complex Care Center 
  • Michelle Labossiere-Hall, associate vice president of customized support at Heritage Christian Services 
  • Stephanie Ramos, advocate and patient of Dr. Pulcino

This story is produced by WXXI's Inclusion Desk, focusing on disabilities and inclusion.

Center for Disability Rights

While additional funding for home-based services was excluded from the first two coronavirus relief bills, people with disabilities and their families will finally see some relief in the new stimulus package.

The package includes $350 billion in aid to states and localities to provide services to people with disabilities. 

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It's been tough for a lot of people to get  a COVID-19 vaccine - with challenges like finding out where it’s available and getting an appointment and even determining whether you are eligible to get the shot.

Having a disability can make the process even more complex.

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