December 7, 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
Is investing in the future of their loved ones by offering to
match up to $10,000 in donations to VOR during our
2019 Winter Fundraising Campaign!

Please help us take advantage of their generous offer!

*Formerly the Woodbridge Developmental Center Parents Association

National News:
George H.W. Bush Remembered As Champion For Those With Disabilities
By Ron Southwick, PennLive Via Disability Scoop, December 4, 2018
Over decades of public service, President George H.W. Bush’s work to improve the lives of millions of Americans with disabilities may be one of his more overlooked accomplishments.

But it may be one of the most enduring legacies of Bush’s presidency. And it’s gaining fresh attention in the wake of Bush’s passing. He died Friday at age 94.

On July 26, 1990, Bush signed the Americans with Disabilities Act, a law which has helped millions of
people. The law prohibits discrimination against those with disabilities and helps ensure opportunities for employment. According to the Census Bureau, there are about 40 million Americans with disabilities.

Future Uncertain As Money To Move People Out Of Institutions Runs Dry
by Courtney Perkes, Disability Scoop, December 7, 2018

With time and money quickly running out, advocates are pushing for passage of a bill that would extend a federal program that moves people with disabilities from institutions to community living.

Congress is scheduled to recess for the year at the end of next week, while every state will run out of funds for the program known as Money Follows the Person by the close of the month, said Nicole Jorwic, director of rights policy at The Arc. “The holdup is really figuring out how to pay for it,” Jorwic said. “But the urgency remains clear to everyone we talk to on the Hill because the money will be out by Dec. 31.”

The bill, called the EMPOWER Care Act, or H.R. 5306, would reauthorize the program for one year at $450 million, but advocates said a short-term extension could be in the works so more time can be spent next year finding long-term funding.

Second Study Corroborates 1 In 40 Autism Rate
By Michelle Diament, Disability Scoop, December 4, 2018

For the second time in a week, new data from a national survey suggests that the prevalence of autism in this country is higher than previously thought.

An estimated 2.8 percent of children ages 3 to 17 have ever been diagnosed with autism and 2.5 percent — or 1 in 40 — currently have the developmental disorder, according to a study published Monday in the journal JAMA Pediatrics.

State News:
Disclaimer: The following article concerns people diagnosed with mental illness, not necessarily intellectual and developmental disabilities. Nonetheless, problems regarding a state's treatment of one group generally mirrors the problems in the treatment of the other.

We wish to warn our readers that the following article is graphic and disturbing.
New York - Living Apart, Coming Undone
Under a landmark settlement, an ambitious housing program promised a better life for mentally ill New Yorkers. But some of the most vulnerable slip through the cracks.
By Joaquin Sapien, ProPublica, and Tom Jennings for Frontline, December 6, 2018
The stench from Abraham Clemente’s apartment in Flatbush, Brooklyn, this summer was overwhelming. Maggot-infested scrambled eggs were strewn across the floor; a cantaloupe was so spoiled, it seemed to be melting. Feces were ground into the carpet. Clemente, who is 69 and has schizophrenia, kept the shower and sink running for the “oxygen.” He blamed a kitchen fire on a doll nailed to a cabinet. He believed he could crush and smoke his antipsychotic medication to achieve its intended effect.

Yet the state of New York determined Clemente was capable of living on his own.

He is one of hundreds of severely mentally ill New York City residents who have been moved out of institutions into private apartments over the past four years under a landmark 2014 settlement. The approach is meant to be a national model for the rights of the mentally ill to live independently.

It begins with the assumption that most people in adult homes — group facilities that often house hundreds of residents — can live on their own with the right help. Adult home residents are given a subsidized apartment, called scattered site supported housing, and assigned a team of social workers and others to help navigate bureaucracies, housing problems and everyday tasks.

But more than 200 interviews and thousands of pages of medical, social work and housing records reviewed by ProPublica and the PBS series Frontline, in collaboration with The New York Times, show that for some residents, the sudden shift from an institution to independence has proved perilous, and even deadly.

One man drank himself to death. Another suffered a fatal heart attack in the foyer of his building, during a blizzard, naked. One woman was choked and left dead in a bathtub last year; three people of interest in the murder are fellow supported housing residents. The family of another woman
believes her mental health declined when she moved into supported housing, contributing to her suicide.

Certainly, many people flourish when given the chance to live independently. A court-appointed monitor has interviewed more than 300 people who have moved out of adult homes and has said that for the most part, they are satisfied with the change.

“I’m sure some of them have their rough days because if you have serious mental illness, you have rough days,” said Cliff Zucker, a disability rights lawyer who led the court case that ended in the 2014 settlement. “But better to have it in your own home and live in freedom.”

David Lazarowitz, 45, said he takes his medication routine seriously and loves to shop and cook for himself, keep his apartment tidy and learn about gardening or auto mechanics on YouTube.
“This is a chance that otherwise, I would never have,” Lazarowitz said.

But in addition to the deaths, ProPublica and Frontline identified more than two dozen cases in which people in supported housing were not able to care for themselves, leaving them in unsafe or inhumane living conditions. Most of those people moved back to an adult home, but others ended up in a nursing home or a psychiatric ward. One resident landed in jail. One is missing, according to the police.

More than 20 people who have worked on the transition, from social workers to nonprofit executives, said the ideology behind the lawsuit endangered scores of people who were not ready to live alone with only minimal support.

Massachusetts - Judge Joseph Tauro’s Landmark Rulings gave People more Rights
By Bryan Marquard, The Boston Globe, Dec. 1, 2018
Six months after being sworn in as a US District Court judge, Joseph L. Tauro hopped in his sports car and drove 90 miles west from his Boston courthouse to pay an unannounced visit to a state school for the developmentally disabled. A lawsuit had alleged unsanitary conditions, but he was unprepared for what he found.

“The horrors I saw were things I couldn’t imagine,” he later recalled of his May 1973 trip to Belchertown. The experience, he said, “was like getting punched in the stomach for nine straight hours.”

That visit led to the first landmark ruling by the jurist, who would go on to serve as chief judge of US District Court in Boston from 1992 to 1999.

Judge Tauro was 87 when he died of myelofibrosis Friday in his Marblehead home, and his passing was mourned throughout the judiciary.

“The bench has lost a terrific colleague, the bar has lost a remarkable mentor, and I have lost a truly great friend,” said Stephen Breyer, a US Supreme Court associate justice.
Presiding for two decades over the Belchertown case and its offshoots, Judge Tauro issued rulings that forced the state to spend millions more to care for the developmentally disabled and to create lifetime individual treatment plans for patients.

Judge Tauro “became a giant of the bench in pursuing justice for these children and people who have fewer rights in our society,” said Patti B. Saris, chief judge of US District Court in Boston.

In a career on the Boston federal court bench that had lasted a record 41 years when he switched to senior status in 2013, Judge Tauro crafted decisions that created national models not only for the care of the developmentally disabled, but also for the rights of the mentally ill to refuse unnecessary medication and avoid solitary confinement except in emergency situations.

Iowa - IA Let Major Medicaid Provider Keep $2.4M in Overpayments
By Ryan J. Foley, Associated Press via Sioux City Journal, Dec 6, 2018
After a major provider agreed to stay in Iowa's troubled Medicaid program, a top aide to Gov. Kim Reynolds quietly signed a deal letting its hospitals and clinics keep $2.4 million in mistaken overpayments, according to records released Thursday.

UnityPoint Health threatened to quit Iowa's Medicaid program a year ago, saying it was at an impasse in contract negotiations with the managed care organization AmeriGroup. Its departure would have disrupted care for 54,000 Medicaid recipients statewide beginning April 1. But UnityPoint and AmeriGroup reached a last-minute agreement to keep the provider network in the program, a political victory for Reynolds.

Weeks later, Iowa Department of Human Services Director Jerry Foxhoven cut UnityPoint a break that allowed it to keep more than half of the overpayments that had been identified by a Medicaid audit, according to records obtained by The Associated Press.

The payments in question were incentives for using electronic health records that Iowa Medicaid had awarded to providers using federal funding earmarked for that purpose. Medicaid awarded UnityPoint hospitals and clinics $19.2 million between 2011 and 2015, but auditors last year found that was an overpayment of nearly $4.4 million due to miscalculations relating to the number of services provided.

The program sent letters to UnityPoint's affiliates demanding repayment in full, including from hospitals in Des Moines, Waterloo, Cedar Rapids and Rock Island, Illinois. But the settlement, signed April 25 by Foxhoven, said UnityPoint would only have to refund half of the overpayments after appeals, up to a maximum of $2 million. DHS acknowledged in the agreement that the overpayments weren't due to any "intentional misconduct" by UnityPoint.

Iowa - REM Iowa Acquires St. Luke's New Horizons Program, Prevents Closure

The Gazette, November 30, 2018
REM Iowa has acquired a long-term care program for individuals with intellectual and physical disabilities, a move that will prevent the only such program in Cedar Rapids from shutting down.

REM Iowa, a Hiawatha-based provider of services for those with intellectual and developmental disabilities, announced this week it has reached an agreement with UnityPoint Health-Cedar Rapids to purchase the hospital’s New Horizons program.

The 26-bed program houses individuals with moderate to severe and profound disabilities who require nursing services in a group living environment.

The New Horizons program was set to discontinue operations early next year, forcing the families of 25 residents to move their loved ones to other facilities across Eastern Iowa. The closest location is in DeWitt, about 60 miles away.

The transaction with REM Iowa is expected to be completed Feb. 1.

“REM Iowa is delighted to welcome the individuals served by UnityPoint Health-Cedar Rapids to our residential programs,” said REM Iowa Executive Director Lisa Pakkebier in a news release.

What's Happening In Your Community?

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Texas - Cuts to Funding for Texas Babies with Disabilities
By Ashley Goudeau, KVUE-TV, December 3, 2018
The non-partisan, non-profit organization Texans Care for Children released two reports this week with concerning findings: The Texas Legislature has cut funding for programs to help babies and toddlers born with disabilities and developmental delays. And Texas has the highest rate of uninsured children in the nation.

In Texas This Week, Ashley Goudeau sits down with Peter Clark, Communications Director of Texans Care for Children, to talk about the reports.

Ashley Goudeau: Texans Care for Children recently released a report about the Early Childhood Intervention funding. Talk to me about what you guys found.

Peter Clark: "Sure. So first of all, this report is available on our website if people want to learn more. Our report focuses on the decisions the Legislature has made to cut funding for Early Childhood Intervention, also known as ECI. What is ECI? ECI is a great program. It focuses on kids that are under age three, so our babies and toddlers in Texas that have developmental delays or disabilities.

So that might be Autism, that might be Down Syndrome, it might be speech delays, or other challenges babies and toddlers in Texas face. Through this program, the state contracts with community organizations like Easter Seals, Any Baby Can is one of the organizations here in Austin, and these organizations do a great job of providing services to these babies and toddlers to help them meet their developmental goals.
And that's going to depend on each kid. It might be learning to communicate with their family, it might be learning to walk, for a lot of these kids this is about getting them ready to start school a few years later. So our report, unfortunately, found that the Legislature has been cutting funding for this program over the last several years and that's had real consequences. One of the most concerning results of those cuts is that programs are shutting down around Texas. And this is something that the state's Health and Human Services Commission has recently warned the Legislature about."
Goudeau: When you talk about a reduction in funding, how much money are we talking here?

Clark: "Great question. And there's been reductions in multiple ways. So this report looked at the amount of funding provided by the legislature per child enrolled in ECI. And we found a 15 percent reduction over the last several years. If you look at funding, the direct dollar amount provided to ECI by the Legislature, without accounting for the number of kids, that has also declined over the last several years. We'll give the Legislature a little bit of credit, they did make a small increase last session, but overall the funding has declined for ECI in terms of the direct funding provided by the Legislature.

Tennessee's DIDD Commissioner Debra K. Payne Announces Retirement
By Natalie Neysa Alund, Nashville Tennessean, Dec. 5, 2018
After more than 40 years with the agency, The Tennessee Department of Intellectual and Developmental Disabilities commissioner will retire next year, state officials announced Wednesday.

Debra K. Payne will retire effective Jan. 19, the agency that supports people with intellectual and developmental disabilities reported.

“I have been honored to serve the state as Commissioner, and been able to witness the tremendous improvements made in the quality of care for people with intellectual and developmental disabilities across Tennessee,” Payne said. “This has been a team effort that couldn’t happen without the hard work and dedication of DIDD employees, our provider network, advocates, and
most importantly, the people we support and their families.”

Payne began her career with the state more than four decades ago as a direct support professional at Clover Bottom Developmental Center. According to the agency, Payne held support and leadership roles at both Clover Bottom and the DIDD Middle Tennessee Regional Office.

Tennessee - Commissioners, Education Officials Want GVDC To Become TCAT Campus
By Bianca Marais, The Greenville Sun, Dec.4, 2018
The Greene County Commission’s Education Committee is urging the state to transform the former Greene Valley Developmental Center property into a Tennessee College of Applied Technology campus.

At their regular meeting Monday, the committee heard from Greene Technology Center Principal Randy Wells. Though the reports were positive, committee members agreed that more could be done on their part to create more learning opportunities in Greene County.

Greene Valley, which closed as a center for patients with intellectual and developmental disabilities in 2017, still houses some offices and facilities for the state Department of Intellectual and Developmental Disabilities. Local officials and lawmakers have proposed several different uses for the facility and grounds, but the state has made no announcements about its next chapter.

Blog Report:
VOR, "a Voice Of Reason", Comments on a National Council on Disability Report on Guardianship
By Jill Barker, December 6, 2018

The National Council on Disability (NCD) Report, "Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”, is over 200 pages long and contains historical as well as current information on guardianship. To simplify and focus VOR's response, VOR comments on the seven findings from the report.

The NCD admits from the outset that there is a lack of reliable and comprehensive data on guardianship that makes it impossible to know for sure whether systemic reforms are necessary. This caveat, however, does not prevent the NCD from making recommendations for reform. Part 3 of The DD News Blog comments on the report will cover more information about the NCD and the philosophical underpinnings of the movement to replace guardianship with Supported Decision Making and other alternatives.

VOR Comments on the Seven Findings of “Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities”

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

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