WXXI AM News

Inclusion Desk

More than 100 concerned community members, consumers and former employees of the Center for Disability Rights and the Regional Center for Independent Living are speaking out about alleged mismanagement, malfeasance and xenophobic remarks made by the organization’s founder, president and CEO, Bruce Darling.

They wrote and signed an open letter calling Darling’s leadership “calamitous.” It said there’s a “lack of accountability,” “nonexistent governance,” and alleges malfeasance and "unethical conduct.” 

Philipe Rivera is sitting in his powered wheelchair on the Monroe County Department of Human Services campus.
Max Schulte / WXXI News

Philipe Rivera goes by "Flip." He's 34 years old and has cerebral palsy. He has a tattoo on his arm, uses a wheelchair, and communicates through a device called a DynaVox. 

"I also use a head pointer for my personal PC," Rivera said. "I cannot use my hands. I rely on people to help me with getting dressed, feeding, bathing, etc."

He's been at Monroe Community Hospital since he was 20. Before that, he lived with his mom who was struggling with substance abuse. She couldn't care for him, so he was placed in the nursing facility owned by Monroe County. He said it's never felt like a home. For 10 years, he's been trying to get out. 

Here's something you may not know: People with disabilities are not guaranteed the right to live in the community.

Jerri Lynn Sparks

UPDATE: The New York State Office of People with Disabilities announced Friday that starting on July 15, 2020 in regions of the state that are in Phase Four of the reopening plan, home visits may resume for individuals living in OPWDD certified residences.

The home visits are subject to COVID-19 safety guidelines that include social distancing, face coverings, hand washing, and proper cleaning and disinfection.

The office is urging families to use caution and to limit group home residents' exposure to members of different households and public places.

provided photo

Monroe County Executive Adam Bello has signed legislation that will require there be an American Sign Language interpreter at all county government press conferences that are held during emergency situations.

Bello was joined Thursday by deaf and hard of hearing advocates from IGNITE Deaf Advocacy, MCDHub, Partners in Deaf Health and Rochester School for the Deaf to commemorate the approval of the local law.

University of Rochester Medical Center

The University of Rochester Medical Center’s neuroscience laboratory has received a $6 million grant from the National Institutes of Health to study intellectual and developmental disorders.

URMC’s Del Monte Neuroscience Institute is one of 14 institutions in the country to receive the grant and be named an Intellectual and Developmental Disabilities Research Center by the NIH.

The director of URMC’s institute, John Foxe, said the grant will fund research into common developmental disorders, like autism, and much rarer conditions like Batten disease, which occurs in only about three of every 100,000 births.

The state’s ongoing fiscal crisis due to the COVID-19 pandemic has led to temporary funding reductions for some cities and postponed planned pay raises for state workers. It’s also led to reductions to some smaller programs, including a key organization that has helped New Yorkers with intellectual disabilities navigate the pandemic. The program is slated for significant cuts this month.   

Center for Disability Rights

Monday marked the 21st anniversary of the Supreme Court decision that allowed people with disabilities the right to live in their community and not be subject to unjustified isolation.

But advocates said much more must be done, especially in the age of COVID-19.

The Center for Disability Rights hosted a webinar Monday that looked at the impact of the Olmstead v. L.C. decision, and attendees discussed ways to ensure that everyone has a right to live and participate in the community.

golisanofoundation.org

The Golisano Foundation has awarded $416,000 to 11 organizations in western New York and southwest Florida in another round of grants designed to help people with intellectual and developmental disabilities.

The foundation has now issued three rounds of grants to help agencies that have urgent needs due to the COVID-19 pandemic. That brings the total COVID-19 response grant funding to date to $1.1 million.

Grants announced on Monday include those going to the Arc agencies in Ontario, Wayne, Genesee and Orleans counties.

Luticha André Doucette

 

When the pandemic reached Rochester, equity coordinator with the city government Luticha André Doucette says that she was concerned for her safety. Doucette has a disability and is immunocompromised.

However, amid the pandemic there was a silver lining. Doucette along with so many others began working from home. Her cats have made regular appearances on ZOOM calls. She said that while it’s comfortable, it’s also brought up frustration. 

www.sunshinecampus.org

There will be no Rotary Sunshine Camp this year. Officials with the Rochester Rotary say that it was an emotional decision, but with the concerns about the coronavirus they didn’t feel it was safe to hold the summer camp in the Town of Rush as it normally does.

Tracey Dreisbach is the Executive Director for Rochester Rotary. She said it was an emotional decision to make, since so many people enjoy the camp which has a focus on providing fun for kids with disabilities.

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