June 29, 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
VOR's 2018 - 2019 Board of Directors

July 1st begins VOR's new fiscal year, and we are happy to announce the names of our 2018-2019 Board of Directors. The information is available on our web site. Click here to read or download

We have two new Board members this year, Rita Hoover of Arkansas and Susan Jennings of Pennsylvania. Susan has been serving as an interim member of the Board since January.

We would also like to thank Marilyn Straw, who stepped up to fill another vacancy on the Board In January, and is stepping down this month. Marilyn has always been a solid supporter of VOR, and one of the first to volunteer when help has been needed. She will continue her work on the Membership and Development Committee. A very special thanks to you, Marilyn.
VOR's 2018 Annual Meeting & Legislative Initiative

We are still waiting for Rep. Bob Goodlatte to introduce his bill. We will keep you posted on the progress of this effort.

The bill is similar to the bill cosponsored by Barney Frank and Bob Goodlatte in the 111th and 112th Congresses. It would ensure that families receive sufficient notification about class action suits against the facilities their loved ones call home, and give them the opportunity to opt out of these lawsuits.

What you can do if you were unable to attend this year

  • Follow us on Facebook and Twitter. Re-post, Like, or Retweet our posts
  • Follow up with your senators and representatives this August, when they come back to their state offices. All of the materials from VOR's Legislative Initiative are available on our web site after the conference.
National News
Feds Urge Steps To Make Group Homes Safer
By Shaun Heasley, Disability Scoop, June 29, 2018

Five months after a scathing report found that injuries, serious medical conditions and even deaths of those with developmental disabilities living in group homes often go overlooked, federal officials are responding.

In a four-page informational bulletin issued this week, the Centers for Medicare and Medicaid Services’ Center for Medicaid & CHIP Services said that it “takes the health and welfare of individuals receiving Medicaid-funded Home and Community-Based Services (HCBS) very seriously.”

The agency described its new bulletin as the first in a series of guidance documents it plans to issue in response to a January joint report from the U.S. Department of Health and Human Services Office of Inspector General, Administration on Community Living and Office for Civil Rights.

That report found that state officials often weren’t told of or failed to respond to deaths and serious injuries like head lacerations at group homes for people with developmental disabilities.

The findings were based on an audit of emergency room visits from group home residents in a handful of states, but investigators said that media reports from across the country suggested the problems were widespread.

The Centers for Medicare and Medicaid Services is urging states to adopt a more standardized definition of what qualifies as a “critical incident,” or situations that warrant reporting. Currently the definition varies across the country and even from program to program within states, the agency said. “CMS strongly encourages states to define critical incidents to, at a minimum, include unexpected deaths and broadly defined allegations of physical, psychological, emotional, verbal and sexual abuse, neglect and exploitation,” the bulletin states.

States Aim To Halt Sexual Abuse Of People With Intellectual Disabilities
By Joseph Shapiro, NPR, Jun 25, 2018
Earlier this year, NPR reported that people with intellectual disabilities are victims of some of the highest rates of sexual assault. NPR found previously undisclosed government numbers showing that they're assaulted at seven times the rate of people without disabilities. Now states, communities and advocates, citing NPR's reporting, are making reforms aimed at improving those statistics.

In Pennsylvania, legislation passed the state House of Representatives earlier this month that would make it easier for people with intellectual disabilities to testify in court. The proposed law, introduced by Republican Rep. Garth Everett, would set out circumstances in which a judge could allow a person's testimony to be taken outside of a courtroom.

In Massachusetts, a proposed law would create a registry of abusive caregivers, even if the case isn't prosecuted. Currently, when an allegation of abuse emerges, a state agency investigates to see if the claim can be substantiated, but the names of alleged perpetrators are only made public if a prosecutor decides to take the case to trial. Advocates cited the NPR series in pushing for the law.

And in California, legislation was proposed — but ultimately stalled — that would have started a pilot program to give prosecutors extra money to
devote more staff and more time to prosecute these cases.

These reforms are all aimed at making it easier for police and prosecutors to investigate cases and take them to trial. It can be difficult to do that, in part because people with intellectual disabilities may have difficulty speaking, remembering details or recalling a time sequence. One result: perpetrators often go unpunished, and are free to assault again.

In the U.S. Congress, legislation was introduced that would guarantee the continuation of existing federal funding to address the sexual assault of women with intellectual disabilities. The money is currently authorized in the Violence Against Women Act, which is set to expire at the end of this year. When Republican Rep. Ken Calvert of California introduced the CARE Act in April, he noted the NPR reporting and statistics: "It is absolutely shocking and disturbing that these individuals are targeted so often and I wholeheartedly believe we must do more to protect them."

Fearing Deportation, Parents Declining Benefits For Kids With Disabilities
By Ashley Lopez, Kaiser Health News via Disabiility Scoop, June 26, 2018

The fear of family separation is nothing new for many immigrants already living in the U.S. In fact, that fear, heightened in recent weeks, has been forcing a tough decision for a while. Advocates say a growing number of American children are dropping out of Medicaid and other government programs because their parents are not citizens.

Marlene is an undocumented resident of Texas and has two children who are U.S. citizens who qualify for Medicaid, the federal-state program for low-income people. (Kaiser Health News is not using Marlene’s last name because of her immigration status.) One of her children has some disabilities.

“My son is receiving speech therapy,” she said in Spanish. “But it’s been difficult.”

It was a long journey to get the right evaluations and diagnoses, and her son is finally making progress, Marlene said. But she braces for a day when he might have to do without this therapy and others that are paid for through Medicaid. Because she’s undocumented, she’s extremely nervous about filling out applications for government programs like this.
Already, she has decided to stop receiving food stamps, now known as SNAP, which her children, as citizens, are entitled to based on the family’s income.
She dropped it because the application to receive those benefits changed, she said.
“They are asking a lot of questions,” she said. “They are investigating one’s life from head to toe.”
Marlene said she was nervous, in particular, about being asked to provide years of pay stubs and other eligibility requirements she had not experienced before. Marlene said the application alone made her “sick from stress.”

Repeated calls and emails to Texas health officials to ask about the changes in the benefits application process went unanswered.

Marlene’s son has Medicaid for the next several months. But she is worried how that application will change, too, next time she has to apply.
Health care groups say they’ve observed other immigrant families making similar choices, and they think it will accelerate if a proposed change to green card eligibility becomes law. Under the proposed change, if family members receive government services — even if those family members are citizens — it would ding the applicants’ chances of approval for permanent residency.

Approximately 10 million citizen children in the U.S. have at least one non-citizen parent.

ABLE Programs In Jeopardy, Disability Advocates Warn
By Michelle Diament, Disability Scoop, June 28, 2018
Without a big change, advocates are warning that a recently-established vehicle to help people with disabilities save money without risking their government benefits could be unsustainable.
ABLE programs across the country desperately need an infusion of more account holders, according to a letter sent to congressional leadership this month from over 150 disability advocacy groups.

Established under a 2014 federal law, ABLE accounts allow people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is in the accounts.

To date, 37 states offer ABLE programs, though many are open to those with disabilities nationwide.
Under the law, however, ABLE accounts are only available to people with disabilities that onset prior to age 26. Now, advocates are calling on Congress to pass a proposal known as the ABLE Age Adjustment Act that would increase the cutoff age to 46, dramatically expanding the number of potential account holders.
“Simply put, without increasing the ABLE eligibility criteria for age of disability onset from prior to age 26 to prior to age 46 in order to significantly expand the pool of individuals who can open ABLE accounts, the entire ABLE program nationwide is in jeopardy,” the letter states.

State News
California - Temecula Caregiver Shot 3 Developmentally Disabled Men before Setting Home on Fire, Coroner Records Show
By Brian Rokos, The Press-Enterprise, June 22, 2018
A drunken James Steven Jennex sent a text message to a friend apologizing in advance for his actions and then fired a bullet into the heads of each of three developmentally disabled men in his care before setting his Temecula-area home ablaze and killing himself with a .357 revolver blast to the head.

The fire, on Aug. 29, 2016, at the Renee Jennex Small Family Home, killed a fourth developmentally disabled man and burned all five people beyond recognition. Investigators pulled a gas can from the rubble.
Those facts, never before revealed by the Riverside County Sheriff’s Department, were included in autopsy reports obtained from the Coroner’s Office by this news organization through a Public Records Act request.

The Sheriff’s Department disclosed that this case was a murder-suicide two months after the slayings. Even then, investigators declined to say who fired the shots, who had been shot and who set the fire.

As Phil Murphy warns of huge budget cuts, N.J. Senate president shows what they'd look like, up close
By Samantha Marcus, NJ Advance Media, June 26, 2018
At 11:45 a.m. a bell rings, and an employee at Abilities Solutions in Westville jumps up from his station and darts to the door, eager for lunch.
Shauna Hilbmann stays perched on her stool, methodically affixing price tags to plastic Crayola thermoses, a dozen per box.

And just a few stations away, state Senate President Stephen Sweeney, locked in a state budget battle with Gov. Phil Murphy, greets employees holding signs urging continued funding for this south Jersey vocational program that provides employment for 185 people with developmental disabilities.

The employees know Sweeney, whose daughter has Down Syndrome, and he knows them.
Sweeney, D-Gloucester, coupled his praise for the workshop with harsh criticism for Murphy, whose proposed budget cuts $5 million of $43.8 million the state is spending on these "sheltered workshops."

"You see people feel a sense of purpose and pride, and they want to be employed. They want to
be part of the economy. They don't want to be sitting at home. They want to be able to do something with their lives," Sweeney, New Jersey's top lawmaker, said Tuesday. "And they are," he continued. "They're producing. They're part of society this way."

Sweeney's visit was his turn to show what Murphy's budget would do. 

Sweeney escorted then-candidate Murphy on a tour of the facility in September, which he says means there's no denying Murphy knew just what he was cutting and that he was sending a message.

They can disagree over numbers, Sweeney said, but "what Democrat cuts funding to a program like this?"

California - (Opinion) Close to Home: A last hike to Fern Lake
By Ana Mettler, The mother of a Sonoma Developmental Center Resident, The Press Democrat, June 24, 2018
As my son, a client of 12 years at the Sonoma Development Center, and I walk through the soon-to-close campus, I keep thinking of the fervent mothers who — 128 years ago — secured this land and intended it to be there in perpetuity for those with special needs.

A van drives by slowly. The driver waves to my son, and says, “Hello there, Carsten. How are you?” My son beams. We pass by the swimming pool, now closed. We cross over Arnold Drive toward the hill. We meander by what still is or used to be the store, the upholstery shop, the laundry, the bakery, the paint place, the coffee shop, the shoemaking workshop, the tailoring place, the adaptations shop, the framing workshop, the nursery, the school, the gymnasium, the auditorium, the sensory therapy/activity place, the on-site hospital and many other buildings. This used to be a village that provided both services and work opportunities, including farm and dairy, for its villagers.

I keep thinking of Julia Judah and Frances Bentley who fought for this place so it could be there in perpetuity for those who needed it.

A fire engine returns to the station. The firemen greet Carsten. He waves back enthusiastically. He understands the tremendous and courageous effort they put forth to save the Sonoma Developmental Center from the October fires.

Shaded by magnificent magnolias and oak trees, we make our way up the hill toward Fern Lake. It is deliciously quiet and peaceful; the only sounds we hear are birdsong and a light breeze. We encounter just one other person on the path, who
also knows my son by name. Soon we pass by the campground where clients used to enjoy camping experiences. At Fern Lake we pause, we picnic, and we savor the view.

I keep thinking of these two mothers who made it their lives’ work to secure the 1,500- acre-property so it could be there in perpetuity for those who needed it.

Has my son’s Sonoma Developmental Center experience been perfect? No. Many things could have been improved. The creation of the crisis house Northern Star was an excellent example of how the aging buildings could have been converted into smaller homes — moving from an institutional paradigm to a village paradigm.

There is hardly a staff or family member who doesn’t grieve over this lost haven. Many of us have spoken at forums and hearings initiated by the state Department of Developmental Services. We were encouraged to share our experiences and views, but we were hardly listened to. I wonder what Julia and Frances would have done to save this land. I wonder if I could have spoken out even more loudly or found other ways to be heard. It is too late now, I guess, and I watch sadly as this stunningly beautiful, spacious and sacred land is being pulled away from my son and all of his peers.

Massachusetts - Judge Sides with School that uses Electric Shocks on its Students
By Mike Beaudet, WCVB TV, June 28, 2018
It is a major victory for the only school in the country that uses painful electric shocks on its disabled students.

A Bristol County Probate and Family Court judge has sided with the Judge Rotenberg Center in Canton, allowing the school to continue administering electric skin shocks.

The administration of former Gov. Deval Patrick tried to put a stop to the practice, which is known as an aversive treatment, in 2013, months after video surfaced of 18-year-old Andre McCollins receiving dozens of electric skin shocks at the center in 2002.

But Bristol Probate and Family Court Judge Katherine Field denied the motion in a ruling that came after a 44-day evidentiary hearing that ended in October 2016.

“(The state) failed to demonstrate that there is now a professional consensus that the Level III aversive treatment used at JRC does not conform to the accepted standard of care for treating individuals with intellectual and developmental disabilities," Field wrote in her June 20 ruling.
The decision was hailed by parents with students at the Judge Rotenberg Center, where 58 students were approved to receive electric skin shocks as of August 2017.

“As parents whose children attend and received treatment at the Judge Rotenberg Educational Center (JRC) we welcome the court’s ruling and repudiation of Massachusetts government officials at the Department of Developmental Service (DDS), who acted in bad faith and impermissibly made treatment decisions for JRC Clients - our children, just as officials within the agency had done in the 1980s and 1990s,” reads a statement from the JRC Parents Group.

Massachusetts Health & Human Services Secretary Marylou Sudders must now decide whether to appeal.

Massachusetts - Former state school resident gets his wish to be buried on the institution grounds
By Luis Feldman, Daily Hampshire Gazette, June 24, 2018
Donald Vitkus’ final act of advocacy is being buried at the Warner-Pine Grove Cemetery among his “brothers and sisters” of the former Belchertown State School.

On Saturday, Vitkus, 74, who spent more than two decades helping the developmentally disabled, had his dying wish granted. His cremated remains were lowered to his resting place alongside the people he grew up with at the institution where allegations of neglect and abuse prompted a class action lawsuit.

Vitkus, who died in January, was placed at the state school as a 6-year-old foster child and lived there until he was 17. He died in January. His is the first burial at the cemetery, where there are 204 other gravesites, in nearly a decade.
Nearly 70 of Vitkus’ friends, family members and people touched by his work gathered for an emotional memorial service in the secluded, wooded area off Turkey Hill Road.

“For those of you who knew him, you knew he was a humble guy just talking to him,” said his son, David Vitkus. “He was not only humble, but he was extremely grateful for his family, his friends, and for the opportunities he received that his brothers and sisters hadn’t. He was always keenly aware of the opportunities he received that others simply didn’t.”

From our Friends at ACCSES:
Please sign on!
  • Congressman Glenn Grothman (R-WI-06) recently introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act (H.R. 5658). This bill will restore common sense to the definition of competitive integrated employment and provide increased employment opportunities for people with disabilities. People with disabilities across the country have been denied placements in high-paying jobs because of the regulations that implement the Workforce Innovation and Opportunity Act (WIOA). ACCSES supports expanding opportunities and keeping a full array of options available. We were honored to work with Congressman Grothman and his staff to help draft this legislation. Go to the ACCSES Action Center and tell your Members of Congress to cosponsor and pass this important bill to increase employment opportunities for people with disabilities!
Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)
Invite you to attend the
2018 Convention
October 7-10
San Diego, CA

Tuesday, October 9 is ID/DD Day
For more information go to

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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