November 2, 2018
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

Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

VOR & You:


VOR is a national, nonprofit 501(c)(3) organization advocating for high quality care and human rights for all persons with intellectual and developmental disabilities. For 35 years, VOR has been the only national grassroots advocacy organization supporting a full continuum of care options for people with intellectual disabilities and developmental disabilities, and their families.

VOR is 100% privately funded and receives more than 95% of its financial support from families of individuals with intellectual and developmental disabilities.
VOR & You:

Notes from the Together For Choice Conference at Misericordia, Chicago - October 17 -19, 2018

A considerable number of VOR members attended the Together for Choice conference at Misericordia in Chicago last month.VOR's Pat Peterson and Hugo Dwyer have written up a few of their impressions of this event.
Please see the bottom of this email for the article.
National News:
Brothers With Special Needs Among Pittsburgh Shooting Victims
By Rob Amen and Aaron Aupperlee, Trib Live, October 28, 2018
Raye Coffey raised three children, but she could have been considered a surrogate mom, of sorts, for Cecil and David Rosenthal.

The brothers lived next door to the Coffeys in Stanton Heights and often could be found at the Coffey residence.

Cecil Rosenthal, 59, and David Rosenthal, 54, both of Squirrel Hill, were among the 11 victims of the synagogue shooting Saturday in Squirrel Hill.

“Cecil and David were in the house constantly,” said Coffey of Squirrel Hill, explaining that she had an open-door policy with the neighborhood kids. “We had the most marvelous relationship with their parents.

“Cecil was always a big brother. He was very warm and very loving. Whenever he would see us, he would always say, ‘Hi, Coffeys!’

“David was quieter. But both were … to die like this is horrendous.”

The Rosenthal brothers were affected by mental challenges, but that didn’t slow down the family, Coffey said.

Cecil was the oldest of Joy and Elie’s four children, David the third. The Rosenthals also have two daughters.
More recently, Cecil and David lived together in an apartment in Squirrel Hill, Coffey said. They were regulars at Tree of Life, where Cecil could be found serving as a greeter.

ACHIEVA, a group that works with people with disabilities, issued a statement mourning the loss of the Rosenthals.

“Cecil and David had a love for life and for those around them. As long-standing recipients of ACHIEVA’s residential and employment services, they were as much a part of the ACHIEVA family as they were their beloved neighborhood of Squirrel Hill.

“They loved life. They loved their community. They spent a lot of time at the Tree of Life, never missing a Saturday.”

Chris Schopf, vice president of residential supports at ACHIEVA, said the Rosenthals were “inseparable.”

“Cecil’s laugh was infectious. David was so kind and had such a gentle spirit. Together, they looked out for one another,” Schopf said. “They were inseparable. Most of all, they were kind, good people with a strong faith and respect for everyone around.”

States Cite Hurdles To Providing Community-Based Services
By Michelle Diament, Disability Scoop, November 2, 2018
States are facing challenges meeting their obligations to provide home and community-based services to people with developmental disabilities and other groups, federal investigators say.

A report examining 26 Medicaid offerings across five states reveals that everything from funding to the needs of beneficiaries are threatening access to community-based living.

The findings come from an audit conducted by the nonpartisan Government Accountability Office.
Investigators looked at home and community-based services in Arizona, Florida, Mississippi, Montana and Oregon, evaluating programs and interviewing state Medicaid administrators as well as managed-care providers.
Officials cited difficulty recruiting and retaining direct care workers due to low pay as well as trouble serving people with significant medical or behavioral issues in community settings, the report found. Additionally, administrators indicated that they’re working with limited funds to meet a growing population of people who need care in the community.

Meanwhile, factors like a lack of affordable housing and state pressures to limit per-person spending on home and community-based services present obstacles, GAO found.

State News:
New York - Follow up:
Sex offenders placed in homes for seniors and the disabled
By Anne McCloy, CBS TV Albany,
Monday, October 29th 2018
From nursing homes, to state-operated homes for the disabled, violent sex offenders have local group homes listed as their home address, and residents have no idea.

The New York Sex Offender Registry indicates a 58-year-old sex offender, who served his time after he was convicted of sexually abusing a 9-year-old girl, is now living at a Clifton Park group home on Lapp Road operated by the NYS Office for People with Developmental Disabilities.

“It's a predators dream, they can pray on the most vulnerable, and then you have a system that's all about hiding what's happening from the general public and the families,” Michael Carey said.
Michael Carey oversees the Jonathan Carey Foundation, an advocacy group for the disabled. The foundation is named after his developmentally disabled son who was killed by a care worker in 2007.

His team has spent weeks examining the sex offender registry. Far from done, they've already found 80 sex offenders who list a group home as their primary residence. He says mixing sex
Michael Carey - The Jonathan Carey Foundation

offenders in with disabled patients is a recipe for sexual assault.

“Many of them can absolutely never tell their parents because they're non-verbal. This is an emergency situation, this is something the governor should be immediately putting a stop to. It’s beyond outrageous, it's unconscionable and it's also illegal,” Carey said.

Carey believes knowingly placing a sex offender in the same home as a disabled patient is a violation of the state law, Endangering the welfare of a disabled person, and also puts care staff at risk.
“There are no cameras, and the staff aren't properly trained,” Carey said.

Massachusetts - Rotenberg Center: ‘Culture of Abuse’ or Miracle Worker?
By Jenifer B. McKim / New England Center for Investigative Reporting, The Patriot Ledger, October 29, 2018

Gilberto Toro – 22 years old and severely disabled – was repeatedly whipped by a belt-wielding caretaker two years ago in a group home run by the Canton-based Judge Rotenberg Educational Center, prosecutors say.

The worker, Mohamed Tarawally, was supposed to keep Toro safe overnight at his group home run by the school. But Assistant District Attorney Philip Burr says instead Tarawally assaulted him, and it was caught on video.

“As soon as he walked in the room, he takes off his belt and wraps it around his hand with the belt buckle dangling,” Burr said during a September hearing at Norfolk Superior Court in Dedham. “This is a case where the victim was whipped because he got out of bed.”

Tarawally pleaded not guilty to criminal charges. But the alleged assaults are not the only mistreatment reported at the Canton-based institution best known for being the only school in the United States to use electric shocks to control its special needs students.

The Rotenberg Center has been frequently cited by state agencies for allegedly abusing and neglecting some of its 270 adult and juvenile wards diagnosed with major mental illnesses, autism and other developmental disabilities, state records show.

During 2016 alone, the school was cited 27 times by two state agencies that monitor the care of adults and children at special education schools for violations mostly related to abuse and neglect. That was more than any other school of its kind that year, according to records obtained by the New England Center for Investigative Reporting.
Students were allegedly hit, kicked and neglected by staff, according to state records.
Incidents include the alleged assault on Gilberto Toro and the beating of three residents at a group home in Norton that led to 90 days of jail time for Andre Scott, a former staff member who pleaded guilty to criminal charges.

Rotenberg executive director Glenda Crookes said allegations of abuse are “devastating” to staff and the school does everything it can to protect its residents. The school and its 45 residential group homes are equipped with surveillance cameras, she said, but monitors are not able to watch every room at every minute.

Crookes said caring for disabled residents, ages 10 to 59, can be challenging. Many display severe aggressive and self-injurious behaviors including head-banging, punching and biting off their own fingers or pulling out their own teeth. The school has 1,000 staff members who receive ongoing training, she said, but that doesn’t always stop bad things from happening.

“Sometimes people don’t react the way they should,″ Crookes said. “We self-report everything and we have the surveillance to catch things.”
But some critics say mistreatment at the Rotenberg Center is a natural extension of a culture that espouses the use of painful stimulus as a way to control students. Shain Neumeier, a Springfield-based disability rights lawyer and longtime opponent of the center, is representing a California family that claims a 17-year-old relative was punched in the eye by a caregiver during a scuffle on a bus in February.

“People focus on the shock aspect of it. But well before, they were doing other things that are abusive,″ Neumeier said. “It’s a culture of institutional abuse.”

Massachusetts - Advocates Push For Mass. Legislators To Create Registry To Guard Against Abuse By Caregivers

By Colin A. Young, State House News Service, October 30, 2018

Family members of people with disabilities who have been abused by caregivers called on the Massachusetts House Tuesday to follow the state Senate's lead and pass a bill to create a registry of individuals found to have abused people they were supposed care for.

The Senate in mid-July unanimously approved the bill ( S 2606) that would direct the Disabled Persons Protection Commission to maintain the "Massachusetts Registry of Abusers of Persons with Intellectual or Developmental Disabilities" and add to the list any care provider against whom the commission substantiates a claim of abuse -- even if the claim is not prosecuted in court.

The Department of Developmental Services and employers would be required to check the registry and prohibited from hiring or contracting with any caretaker named on it.

"I can tell you without hesitation that the systems that are in place are not working and we are failing to protect people with developmental disability in Massachusetts from sexual and other forms of abuse," said Anna Eves, whose son was the victim of abuse in 2017. She serves as vice president of Massachusetts Coalition of Families and Advocates and spoke during at an oversight hearing of the Department of Developmental Services on Tuesday.

Eves said that abuse claims were substantiated against seven people who worked with her son, and that, as of a month ago, at least two of them were still working in the same jobs. If the registry bill were in place, those workers would not be allowed to work for DDS or for DDS-funded programs.

"I am shocked it is taking this long to pass a bill that would prevent known abusers access to new victims," she said. "People with developmental disabilities need and deserve protection. Every day that passes without this bill allows abusers to continue to abuse. Pass this bill as it is."

Massachusetts - Opinion:
Committee Airs Testimony on Sexual Abuse of the Disabled; Offers Little Indication of its Next Steps
By Dave Kassel, The COFAR Blog, November 1, 2018
While members of a legislative committee heard testimony on Tuesday about sexual abuse of the developmentally disabled in Massachusetts, the state lawmakers on the committee gave little indication as to what they plan to do with the information.

COFAR was one of several organizations invited by the Children, Families, and Persons with Disabilities Committee to testify. The committee members asked no questions of any of the three members of COFAR’s panel, who testified about serious and, in one case, fatal abuse of their family members in Department of Developmental Services-funded group homes.

COFAR President Thomas Frain, Vice President
Anna Eves, and COFAR member Richard Buckleyalso offered recommendations to the committee, including establishing a registry of caregivers found to have committed abuse of disabled persons, and potentially giving local police and district attorneys the sole authority to investigate and prosecute cases of abuse and neglect.

Following the hearing, Frain said he was glad to get the opportunity to testify, but frustrated that the members of the committee seemed to lack interest in what he and COFAR’s other panel members had to say.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

Notes on the Together for Choice Conference,
Oct. 17 - 19, Chicago, IL

Nearly 200 advocates for individuals with disabilities from 30 states came together for the 2 nd annual Together for Choice Conference held at Misericordia, a non-profit organization in Chicago Il. Among them were about a dozen members of VOR. There was a notable lineup of speakers at the conference. Here are just a few:

Sister Rosemary Connelly, Executive Dir. (Misericordia, Chicago Il.) delivered the welcome and opening statements She specifically exposed the “one size fits all” philosophy that has been going on since the 1970’s in which larger facilities are threatened with closure, simply because they are bigger. Sister said: “our purpose is to redefine what community really means. Within that definition, individuals and their families should have choice of where to live, where to work, and who their friends are.” As one of the leaders of Together for Choice, Misericordia led a group of providers, families and self-advocates to D. C. in November of 2017 to meet with their Il. Congressional delegation. One of the self-advocates in the group had previously lived in the larger community, but made the choice to return to a campus setting because she felt isolated. She asked one of the legislators: “How can I make you understand that we are not an institution, we are a community!” Sister Rosemary summed up her comments: “our families asked their elected officials to come and tour Misericordia. When they come, their response is: the bureaucrats don’t like you? You should be a model for the country!” In 2017, due their persistent legislative efforts, Misericordia received a continuum of care license from Springfield.

Melissa Harris traveled by train from her Baltimore office so that she could speak on behalf of Centers for Medicare and Medicaid Services.  She told the family members in the audience: “My goal is to answer your questions or take them back and get an answer.” She also said: “you won’t hear from any of us that we know better than you.” Ms. Harris explained the Home and Community-Based Settings Regulation and she left her e-mail for further questions.

Bill Choslovsky gave an inspired presentation on the history of I/DD services from 1960 to present. He spoke of the early progress in development of ICFs and the problems that have arisen since the waiver was introduced. He noted that we should not balk at the definition of an ICF as an institution, that institutions are good, despite how our adversaries debase them. His Olmstead presentation was the centerpiece of his narrative, including Judge Kennedy’s prescient comment, “It would be unreasonable, it would be a tragic event, then, were the American with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” Olmstead, at 610.
Mr. Choslovsky singled out VOR’s Caroline Lahrmann as a shining example of advocacy at its best for her countersuit against Disability Rights Ohio for trying to close down ICFs in her state.

Rodney Biggert, of Seneca Re-Ads Industries, detailed the Kafkaesque persecution initiated by Disability Rights Ohio and the Department of Labor against his company for paying specialized wages under the 14(c) certificate. The judge in this case made some unbelievable pronouncements, including the determination that the workers must be proven “disabled for the work to be performed”, a concept that is literally impossible to prove in accordance with the judge’s own criteria.

Other speakers included Douglass O’Brien, the regional director for the Chicago area for the U.S. Dept. of Health and Human Services , David Axelrod, former campaign adviser to President Barack Obama, and Phil Peisch and Chris Lowther, lawyers who worked with TFC and others in standing up to CMS’ Settings Rule for the limits it imposes on choice in community settings. Representatives from Noah Homes and the Arc of Jacksonville spoke of their work in building intentional settings that stand up against the “Heightened Scrutiny: requirements of the Settings Rule. Congressman Peter Roksam of Illinois’ 6 th Congressional District gave encouragement noting the importance of 1:1 visits to legislators and their staff. He said: “personal anecdotes are powerful; continue to build a network, and get them (the legislators) on campus.” 

The true highlight of the conference was the guided tour of the Misericordia campus, wherein attendees were shown an amazing array of services, residential models, and employment opportunities. Misericordia is a model for services for individuals with I/DD. Our warmest congratulations to Sister Rosemary and the thousands of family members, volunteers, Direct Support Professionals and donors who have made this facility such a beacon of hope for so many.

-Patricia Peterson and Hugo Dwyer
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VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Plan now!
This will be an important year for I/DD advocacy
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