September 13, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
September 8-14 is Direct Support Professionals Week!
New Jersey Human Services Announces Wage Increase for Professionals Who Support Individuals with Developmental Disabilities
InsiderNJ, September 12, 2019
The New Jersey Department of Human Services Commissioner Carole Johnson announced today that wage increases totaling $36 million have taken effect for direct support professionals who work with individuals with intellectual and developmental disabilities to help them live successfully in communities across New Jersey.

The announcement comes during Direct Support Professional Recognition Week, which runs from Sept. 8 to 14.
This is the second consecutive year reimbursement rates to community providers of developmental disability services have been increased to raise wages for direct support professionals. The wage increases were included in the state budget signed by Governor Murphy and approved by the Legislature.

National News:
100 years ago, at the height of eugenics and Southern/Eastern European immigration, Congress created a “public charge” law intended to people who were unlikely to be self-supporting from becoming US citizens. Since the 1970s, it has been little enforced.

Last month, the Trump Administration issued a new charge rule, aimed at limiting immigration. The new “public charge” rule could make it more difficuilt for legal immigrants to get green cards if they have used an array of puvlic benefits, including Medicaid, potentially making it harder for many to gain legal status and become citizens of the United States.

The new charge rule would directly affect individuals with intellectual and developmental disabilities and their families. Every one of our loved ones with I/DD would be denied citizenship if they had not been born in the US.

Two days after the new rule was announced, thirteen states joined together to file a lawsuit in the Eastern District of Washington (state). This month, a coalition of disability and civil rights groups filed an Amicus brief in the case, supporting the rights of people with disabilities and their families to pursue legal immigration status.

(Note: VOR was not asked to sign on to this brief. Nonetheless, we remain true to our Mission Statement. which states that VOR supports high quality care and human rights for all people with intellectual and developmental disabilities.)

Ed Department Wants Input On Improving Transition Services
By Michelle Diament, Disability Scoop, September 13, 2019
Federal education officials are asking for ideas as they work to strengthen transition services for students with disabilities.

The U.S. Department of Education’s Office of Special Education and Rehabilitative Services is asking for feedback from parents, states, school districts, vocational rehabilitation providers and other stakeholders on how the agency can best use technical assistance to guide states on improving “postsecondary transition services to all students and youth with disabilities.”
In addition, the agency wants input on how its Parent Training and Information Centers — a network of centers in each state that help parents navigate special education — can better coordinate with other relevant technical assistance centers.

The agency is accepting feedback through October 2nd.

State News:
Pennsylvania: Hundreds Show Up for White Haven Center Public Hearing
From PAHomePage, September 12, 2019
The desperate fight to save a facility for people with intellectual disabilities continues.People rallied outside Saint Patrick’s Church in White Haven where the Department of Human Services held a public hearing. Thursday evening’s hearing allowed people to voice their concerns on the planned closure of the White Haven Center. Comments made Thursday will help guide DHS during the transitional process, but for many, that’s not enough.

Tom Kashatus’ daughter has lived at the center for 40 years. He had a message for Governor Tom Wolf.
“Come to White Haven Center and take the tour and see the kind of individuals that are provided services here and the wonderful services they get,” Kashatus said.

“The commonwealth keeps saying all about choice, but they can’t choose to live at home,” Bill Hill, president of AFSCME Local Union, White Haven Center said.

“I implore you to ignore the capricious political trends of Harrisburg and keep White Haven Center open. Thank you very much,” Senator John Yudichak, D-Carbon/Luzerne counties said.

At least 500 people showed up to the meeting and more than 100 spoke. The state plans on closing the center in 2022, saying residents would be better served in private facilities.

South Carolina - Parents Club Posts Video Supporting Their Loved Ones and their home at the Whitten Center
Please view and share this video from the families and friends of the Whitten Center in South Carolina. They speak of the high quality of care and the sense of community that enriches the live of the residents of their center.
Washington - Contempt Orders, Fines as Developmentally Disabled Patients Languish in Local Hospitals
By Austin Jenkins, NW News Network, September 9, 2019
In recent months, court commissioners on both sides of the Cascades have found the state of Washington in contempt, and even imposed fines, over access to state psychiatric care for people with severe developmental disabilities.

The cases involve people who’ve been found to pose an imminent risk to themselves or others, but are languishing in local hospitals.

Their plight has become the latest legal front in a years-old battle over the availability of beds at Western and Eastern State Hospitals, the state’s two psychiatric facilities.

For families, the delays in access to care and the ensuing legal battles have been anguishing.

Last October, Dawn Akerman moved her 51-year-old brother Fred to Washington from Texas in hopes he’d get better care for his severe intellectual disabilities.

But in November, Fred violently lashed out at Akerman and her husband. The police were called. With no crisis intervention beds available,
Fred was taken to the emergency room at Providence St. Peter’s hospital in Olympia.

There, Fred was found to meet the criteria for involuntary commitment at a state psychiatric hospital. But because of the long waitlist to get into Western State Hospital, Fred remained at St. Peter’s. First he was boarded in the emergency room. Eventually he was admitted to the hospital.

As the days passed, Fred’s behaviors intensified and the hospital had to take steps to protect its staff.

“It was scary, I think, for the staff and they put a 24-7 security guard on him and they also had a CNA [certified nursing assistant] in the room, so they had two fully staffed, 24-7 people in his room,” said Akerman, who is also her brother's legal guardian.

New Mexico - Lawmakers Grapple With Sub-Minimum Wages For Workers With Disabilities
By Hannah Colton, University of New Mexico, September 13, 2019
People with intellectual and developmental disabilities often get individualized support in order to hold a job. Many work for regular pay, but a nearly century-old federal labor law allows some employers to pay these workers less than minimum wage.

Lawmakers called a task force to study this issue earlier this year. The Legislative Health and Human Services' Disabilities Concerns Subcommittee heard arguments Wednesday for and against the controversial practice.

The U.S. Department of Labor program allows employers to adjust wages based on how a person’s disability affects their work productivity. Critics say that's discriminatory and exploitative, while proponents say it’s a good option for folks who might not otherwise get hired. 

Wendy Corry, the consultant who headed the study, told lawmakers Wednesday that all the task force members agree on one big idea: “Everybody, regardless of their severity of disability, has the ability to work, given the right supports, the right
creativity, the team. Everybody has the ability to work."

Six states -- Vermont, Maine, Washington, Maryland, Alaska and New Hampshire -- have banned sub-minimum wage practices. Corry said there’s not good research out there about what happens to people after those programs go away.
During public comment, Molly Madden said her daughter has intellectual disabilities and has been happily employed for less than minimum wage for more than a decade, with the help of a job coach.

She worries that opportunities for someone like her daughter could vanish if the state outlaws the program. "We just need to make sure there’s something in place to take care of individuals who are currently served by it," said Madden, "because we don’t want to have a whole bunch of unintended consequences."

Falling Through the Cracks in the DD System and Into the Criminal Justice System:
New York - Father: Son with Autism was Wrongfully Imprisoned after Arson Indictment
By Blaize Gomez, News12 Westchester, September 6, 2019
An Ulster County father says his son with autism was wrongfully imprisoned for the past five months and is telling his side of the story.

Vincent Carozza, 25, of Milton, was indicted in April for attempted arson after allegedly trying to set fire to a group home in Dutchess County and assaulting a staff member.

“Everybody figured that eventually the charges would be dismissed or turned into a misdemeanor," says his father, Joseph. "He put a battery and spoon in the microwave...There was no fire, no damage, no harm."

Carozza says his son didn't commit a crime and that his disability wasn't considered when he was charged and eventually found unfit to stand trial.
Vincent Carozza was kept in custody at Sunmount, a state facility for people with disabilities.

Joseph Carozza says his son was surrounded by “rapists, pedophiles and molesters” at the facility. He also claims his son was sexually assaulted by an inmate in custody. News 12 has not been able to confirm that allegation.

On Thursday, Dutchess County District Attorney William Grady announced that the criminal charges against Carozza are being dropped because the New York State Office for People with Developmental Disabilities is the better agency to address Carozza's needs.

Though the charges will be formally dropped next week, the DA is not saying he won’t need supervision. For now, he remains at Sunmount.

Illinois - When People with Intellectual Disabilities Are Punished, Parents Pay the Price
By Chiara Eisner, The Marshall Project, September 13, 2019
Carol Nesteikis, 66, has never committed a crime.
But for two years, from six in the evening to six in the morning the next day, she lived under de facto house arrest with her 32-year-old son, Adam. It wasn’t because she wanted to. The home itself was a kind of punishment, she says.

Adam was sentenced to 10 years on the sex offender registry and two years of probation in Illinois for exposing himself to a neighbor,
something Nesteikis says he was coerced to do by a man who was abusing Adam. Since the victim of Adam’s offense lived nearby, Adam was required to move out of his family’s house the same day he pleaded guilty—and for two years was ordered to remain inside his new quarters during the evening.

Adam has an intellectual disability, however, and functions with the mind of a 10-year-old. He would starve on his own, Nesteikis says. She and her husband had to move away with him, and spent $150,000 to find and maintain a home that meets
another requirement of Adam’s probation: he must live at least 500 feet away from school property and daycare centers. His curfew, Nesteikis says, became their curfew.

“The dream is gone,” Nesteikis said. “We’re living in our own little prison.”

It’s a fate shared by many parents of people with intellectual disabilities and sexual convictions across the country. Because the children often can’t understand and comply with the rules and restrictions of their sentences, it falls on their guardians to suffer the financial, social and psychological burdens of the crimes.

In Memoriam:
Marca Bristo, Influential Advocate for the Disabled, Dies at 66
By Glenn Rifkin, The New York Times, September 8, 2019
When she was 23, Marca Bristo, a nurse in Chicago, was sitting with a friend on the shore of Lake Michigan. Her friend’s dog accidentally knocked a prized pair of Ms. Bristo’s shoes into the water and, without a second thought, she dived in to retrieve them.

Striking her head, she broke her neck and was paralyzed from the chest down. In that instant, Ms. Bristo’s life changed forever in ways she could never have anticipated. She lost her job, her health insurance, could no longer use public transportation and had no access to many public places.

But rather than dwell on her misfortune, she became a powerful advocate for people with disabilities, spending her life working to change perceptions and the rules in a world that had traditionally ignored the needs of the disabled.
She was a key player in the passage of the Americans With Disabilities Act of 1990, which outlawed discrimination against the nearly 50 million Americans with disabilities.

After a long battle with cancer, Ms. Bristo died on Sunday at 66 in her home in Chicago. Her death was confirmed by her husband, J. Robert Kettlewell.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

What's Happening In Your Community?

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