January 11, 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

Thank You!

To all who joined, renewed, gave gift memberships, and donated to VOR during our Fall/Winter campaign, we would like to express our gratitude for your generosity and your faith in our mission.

Your support helps improve the lives of thousands of individuals with
Intellectual and Developmental Disabilities.

The Winter 2018 Edition of the VOR Voice
is available in full color on our website at:

International News:
Saving the UN Convention on the Rights of Persons with Disabilities – From Itself
By Paul S. Appelbaum, World Psychiatry, January 2, 2019

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is a problem child of international human rights law. Like the girl with a little curl right in the middle of her forehead, immortalized in rhyme by H.W. Longfellow, when it's good, it's very, very good, and when it's bad it's horrid. In embodying the rights of people with disabilities to accessibility, education, health, privacy, and other conditions likely to encourage their flourishing, the CRPD offers hope to people around the world whose disabilities have been the basis for their exclusion from the usual aspirations of life. However, in promoting restrictions in Article 12 on governments’ abilities to intervene to protect the interests and rights of disabled persons, the CRPD – at least as interpreted by the UN Committee on the Rights of Persons with Disabilities (the Committee), set up to oversee its implementation – may end up hurting the very people it purports to help.

As Szmukler notes in his thoughtful essay in this issue of the journal, the CRPD is being interpreted by the Committee as precluding any involuntary intervention targeted at people with disabilities. Thus, under this view of the CRPD, elderly persons with dementia, no longer able to care for their own needs but unwilling to accept management of their finances, health, or living situations by a guardian, could not be compelled to do so. People intending to end their lives as a result of major depression could not be hospitalized against their will, nor could persons suffering from psychosis who are refusing to eat because they believe their food is poisoned. Someone in the manic stage of bipolar disorder would be free to dissipate his family's savings or wreck her business. In the name of protecting all these people from discrimination, they would be free to destroy their own lives and ruin the lives of their loved ones.

National News:
Wearable Device May Be Able To Predict Autism Aggression
MaineHealth leading study of potential ‘game changer’ for families affected by autism
By Joe Lawlor, Portland Press Herald, December 26, 2018
Ethan Datsis examined what appeared to be a watch, turning it over a few times before agreeing to have a health professional attach it to his wrist. He seemed to forget about it while anticipating a spaghetti dinner, one of his favorite meals.

Ethan, 17, who is autistic, nonverbal and staying temporarily at Spring Harbor Hospital in Westbrook, is part of a $3.1 million national study headed up by Maine Behavioral Healthcare that will research how wearable technology could help autistic children and their families.

The three-year study that started this fall will track 200 children and their families in Maine, Rhode Island and Pennsylvania. The goal is to see whether the devices can predict aggressive episodes, alerting caretakers such as nurses, aides and parents. If the caretakers receive
warnings, they can try to calm down or divert the attention of the children, avoiding assaults or self-injury.

Dr. Matthew Siegel – director of developmental disorders for Maine Behavioral Healthcare, which is part of MaineHealth, the parent company of Maine Medical Center – said the devices, which utilize technology similar to a Fitbit or an Apple watch but are more complex, have great potential. A pilot study by Maine Behavioral Healthcare in 2017 with 20 autistic children showed that the devices could predict with 74 percent accuracy whether a child would have an aggressive episode within 60 seconds.

Trump Administration Rescinds Guidance Amid Objections From Disability Advocates
By Michelle Diament, Disability Scoop, January 7, 2019
Guidance issued during the Obama administration, which was aimed at ensuring that minorities and students with disabilities weren’t unfairly disciplined, is no more.

The U.S. Department of Justice and the Department of Education indicated in late December that a 2014 “Dear Colleague” letter informing schools of their responsibilities when meting out discipline has officially been rescinded.
The move came just days after a federal school safety panel chaired by Secretary of Education Betsy DeVos recommended abandoning the guidance.

The Justice Department said that the “Dear Colleague” letter was one of 69 guidance documents being revoked because they were deemed “unnecessary, outdated, inconsistent with existing law, or otherwise improper.” The agency said the decision was in line with a 2017 executive order from President Donald Trump calling for federal entities to identify regulations for “repeal, replacement or modification.”
DeVos was more specific, however, citing concerns that the guidance put too much emphasis on statistics.

“Every student has the right to attend school free from fear of discrimination,” DeVos said. “In too many instances, though, I’ve heard from teachers and advocates that the previous administration’s discipline guidance often led to school environments where discipline decisions were based on a student’s race and where quotas became more important than the safety of students and teachers.”

Rescinding the guidance “makes it clear that discipline is a matter on which classroom teachers and local school leaders deserve and need autonomy,” DeVos said.

ANCOR Unleashes Anti-ICF Public Relations Campaign

ANCOR, a national advocacy group promoting inclusion for all individuals with intellectual and developmental disabilities, has set out a powerful nationwide campaign to spread its 'One size fits All' message. Described by one VOR state coordinator as 'blatant propaganda', the group has rated states that support ICFs as failing at supporting the goals of people with intellectual disabilities. Likewise, they praise states that spend less on ICFs. Their study is called "The Case for Inclusion".

We do not wish to promote their campaign, but we do want to inform our members that the campaign exitsts. They have articles in Forbes Magazine, Disability Scoop, and newspapers across the country. A sampling of links to the articles appear below, but we would caution our readers against clicking on them, as it might just increase the success rating of their campaign.

Proceed with caution, or just take our word for it.

Trump's Medicaid Director Leaves to Join Incoming Florida Governor's Office
By Jessie Hellmann, The Hill, January 4, 2019

The Trump administration's Medicaid director is leaving after less than three months on the job. 
Mary Mayhew announced Friday her resignation as the director of the Center for Medicaid and CHIP Services (CMS).

Mayhew said in an email to staff she has accepted a position with Florida Gov.-elect Ron DeSantis.
“I appreciate her efforts at CMS and I look forward to continuing to work with her as she uses her many talents to help the state of Florida create a healthcare system that serves the needs of its citizens,"
Centers for Medicare & Medicaid Services (CMS) administrator Seema Verma said in a statement Friday.
Mayhew joined the administration in October to run Medicaid, the nation's health insurance program for low-income Americans. 

She was previously the commissioner of Maine's Department of Health and Human Services, where she oversaw changes to the state's Medicaid program, including requiring monthly premiums and co-pays for services. 

She opposed Medicaid expansion in Maine, and will likely push against any attempts in Florida to expand eligibility to more low-income adults.

State News:
Arizona - State Officials Investigate After Patient in Nursing Facility Gives Birth
By Mary Jo Pitzl and Stephanie Innes, Arizona Republic, Jan. 4, 2019
Hacienda HealthCare in Phoenix is under heightened security after a patient with intellectual disabilities reportedly became pregnant and gave birth Dec. 29.

Azfamily.com on Thursday reported that a woman who was left in a vegetative state after a near-drowning more than 10 years ago became pregnant while she was a patient at Hacienda HealthCare in south Phoenix.

The Arizona Department of Health Services on Friday confirmed that the patient who gave birth was a resident at Hacienda de los Angeles, 1402 E. South Mountain Ave. State licensing records describe the facility as a 60-bed intermediate care facility for people with intellectual disabilities.
Officials with the state health department say that in the wake of the report, the facility is required to have heightened security measures to ensure the safety of its patients. That heightened security includes increased staff presence during patient interactions, increased monitoring of patient care areas, and increased security measures with respect to visitors to the facility, state health officials said.

"We are aware of this situation and are actively working with local law enforcement in their criminal investigation," a department statement says.

Kentucky - Another Disabled Student Dragged at School. Four Incidents Recently Reported
By Valarie Honeycutt Spears, Lexington Herald-Leader, January 08, 2019
Yet another report of a disabled Kentucky child being dragged at school received national media attention Monday, and a state advocate said it’s at least the fourth incident since the school year started last fall.

On Tuesday, Kentucky State Police Trooper David Boarman said that Greenup County teacher Trina Abrams, who he confirmed was shown in a video dragging a student at Wurtland Elementary in October , had been charged with fourth degree assault of a victim under 12 years old. The child’s mother in a Facebook post had also identified Abrams as the teacher in the video.

Abrams appeared in court Wednesday and pleaded not guilty, according to the Associated Press.

Abrams had been removed from the elementary school as a result of the incident, according to a statement from the school district given to WSAZ-TV in Huntington. Specifics of what that means were unclear.
And Lucy Heskins, an attorney supervisor for Kentucky Protection and Advocacy said while she can’t provide specifics, she is also aware of an incident involving a school child being dragged in Jefferson County.

“I’m not surprised,” Heskins said about the four incidents, “Restraint is an intervention that is much misused across the state. We have been, and remain, concerned with the inappropriate use of restraint in schools across the state.”

The incidents point out the need for “a call for more training,” for school staff, said Heskins, and the need for a cultural shift in schools that “laying hands on a child isn’t OK and should only be reserved for those extreme situations in which a child poses a risk to himself or others.”

New York - New Minimum Wage Strains Workers who Support New Yorkers with Developmental Disabilities
By Nancy Cutler, Rockland / Westchester Journal News, January 9, 2019
State leaders are reveling in New York reaching the vaunted $15 minimum wage — even though that's now just for NYC (it's $12 in Westchester and $11.10 in Rockland). But state officials have yet to say if they will fulfill another wage promise — to increase pay for Direct Support Professionals, the workers who provide daily care for New Yorkers with intellectual and developmental disabilities. 

At least in the Senate, the DSP pledge looks promising. Sen. David Carlucci, who was recently named chair of the Senate's Mental Health and Developmental Disabilities Committee, said that he supports DSP funding efforts.

The New City Democrat made those comments on Tuesday, as he took his oath of office at Jawonio, one of the nonprofit agencies that provides lifespan services for the most vulnerable New Yorkers.
Another good sign: Senate Majority Leader Andrea Stewart-Cousins joined Carlucci, a show of support for the former member of the Senate's breakaway Independent Democratic Conference, and for Jawonio. "He will be a direct conduit for the good things needed here," the Yonkers Democrat told the crowd. "His responsibility will be all of you."

Gov. Andrew Cuomo pledged two years ago to increase pay for DSPs over a six-year period. So far, though, it's not clear whether his next budget plan, due at the end of the month, will keep apace with that promise. (Considering that nearly three-quarters of the state's 90,000 DSPs are women and more than half are black or Hispanic, a fair wage certainly fits into the governor's much-touted "Justice Agenda.")

Virginia - Horizon offers to lease CVTC buildings; plan would provide care for some residents
By Justin Faulconer, The News and Advance,
Jan 8, 2019
Horizon Behavioral Health, a Lynchburg-area provider of mental health, substance use and intellectual disabilities, has made an offer to lease a portion of the Central Virginia Training Center in Madison Heights.

A nonprofit that serves as Horizon’s fundraising arm submitted the unsolicited proposal to lease five buildings at CVTC, an Amherst County facility that serves individuals with intellectual and physical disabilities, according to Maria Reppas, a spokeswoman for the Virginia Department of Behavioral Health and Developmental Services.

The offer is for Horizon to provide a range of
behavioral health and developmental disability services by leasing the center’s five “Lower Rapidan” buildings from DBHDS and providing services including intermediate care facilities, residential substance use, ambulatory services, intensive outpatient services and case management services, according to a statement from Horizon Behavioral Health.

It comes as CVTC is transitioning toward closing its doors in 2020 after more than 100 years of operating, in accordance with an agreement with the U.S. Department of Justice, a measure that has led to a gradual relocation of residents and employees in recent years.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

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The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

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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