June 13, 2019
US Capitol - June 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

Report from VOR's 2019
This year's conference was simply amazing.

We enjoyed the highest number of attendees in the last four years. Volunteers came from across the country to share their personal stories and political struggles with one another, and to bring these concerns to their legislators on Capitol Hill.

On Saturday, the Board of Directors held its annual open meeting. Board members reported on the organization's fiscal health and the status of its various committees. We discussed bills we are watching, and ideas to increase membership and interstate participation. Ann Knighton presided over the swearing in ceremony for the 2019-2020 Board of Directors.This was followed by an extended session for State Reports, where attendees shared their state's history, current events, and strategies. That evening, everyone crowded into the Executive Director's suite to enjoy hospitality and share goodies from each state. The Georgia peaches were especially good this year, and disappeared in record time.

We'd like to wish a very special thanks to everyone who brought food to the event, and to thank the Pearson Family, at Pearson Farms, for their donation of peaches, to the Georgia Peanuts Commission for keeping us in peanuts throughout the conference.

Sunday began with three incredible presentations, from three outstanding speakers.

Melissa Ston e , Director of the Division of Developmental Disabilities Services of the Arkansas Department of Human Services, shared with us her work in maintaining a full continuum of care for persons with I/DD in Arkansas.

Dr. James Edmondson educated us all on the dangers and problems of different types of Managed Care programs being adopted by various states, and warned us of the ways in which managed care providers could cripple Medicaid services for people with intellectual and developmental disabilities.
Amy Lutz shared her family's journey, her work with the EASI Foundation, and the development of the National Council on Severe Autism. Each of these speakers brought warmth, humor, and personal experience to their presentations.

For the second half of the Sunday's Legislative Initiative, Executive Director Hugo Dwyer presented the materials we would bring to Capitol Hill. Attendees were given time to digest the issues, ask questions, and share their thoughts on how best to present these issues, in the context of their personal stories. Debbie Cates engaged in an interactive presentation of how to speak to legislative aides about the conference materials.

On Sunday night, we enjoyed each other's company at the annual "Dinner at the Dubliner".

Monday, Tuesday, and Wednesday were devoted to our Hill visits. Members reported back that they felt that they had been effective in communicating our concerns, especially in showing our opposition to the Disability Integration Act and the bills that would endanger Work Centers and 14(c) Wage Certificates., Several members of VOR's Executive Committee, past Board members, and Executive Director Hugo Dwyer attended meetings with the Department Of Justice, DOJ Georgia, and the Administration for Community Living. While nothing concrete ever comes directly from these meetings, it is important to keep our presence known and our issues alive in these agencies.

The materials that we shared with Congress are available for download on our website.

Most of the State Reports will be posted there this weekend.

We expect to have videos of the conference speakers available online
in the near future.

For pictures of the conference and our members' visits to Capitol Hill,
please visit our Facebook page: /vor
National News:
Report Alleges ‘School-To-Guardianship Pipeline’
By Michelle Diament, Disability Scoop, June 11, 2019

Note: The following article reflects the views of the National Council on Disabilities (NCD). While VOR supports some of the policies of the NCD, we disagree with their cavalier attitude towards guardianship. VOR supports guardianship for people with intellectual and developmental disabilities, and has written to the NCD in opposition to their views on guardianship, supported decision making, and the "Dignity of Risk".

Too many people with developmental disabilities are being funneled into guardianships rather than exploring less-limiting options, a new government report suggests, and schools may be to blame.
A report out this week from the National Council on Disability finds that schools often provide biased information leading many parents to pursue guardianship, creating a “school-to-guardianship pipeline.”
As a result, 58 percent of people with intellectual and developmental disabilities ages 18 to 22 have guardians. And, once established, the council said many people remain under guardianship for decades.

For the report, the federal agency tasked with advising Congress, the president and other government officials on disability issues, looked at data on guardianships, information collected from stakeholders across the country and examined the experiences of people with intellectual and developmental disabilities in Washington, D.C. both before and after guardianship reforms took effect in the city in 2015.

School officials often ask parents about guardianship when students with disabilities turn 18, and in many cases educators do not present other options because they are unfamiliar with alternatives, the report found.

Families told the National Council on Disability that they were informed by schools that guardianship was the only way that a student with an intellectual or developmental disability could continue having a family member or friend assist at individualized education program, or IEP, meetings.

“Youth with ID/DD are ultimately disempowered by schools actively encouraging guardianship to the exclusion of less-restrictive alternatives, and not providing families and students in special education with sufficient information about the availability of a full continuum of decision-making supports,” the report found.

Push To Require Disability Training For Doctors Meets Resistance
By Courtney Perkes, Disability Scoop, June 13, 2019
Disability advocates are pushing for a requirement that all medical schools specifically train future doctors to treat people with intellectual and developmental disabilities, but they’re hitting roadblocks.

Two proposals to establish a mandate as part of the standard curriculum that medical schools adhere to were rebuffed earlier this year by the Liaison Committee on Medical Education, or LCME, a group jointly sponsored by the Association of American Medical Colleges and the American Medical Association that accredits medical schools in the U.S. and Canada.

But the committee, which is responsible for setting minimum curriculum standards, is now set to discuss a revised version of one of the recommendations — sought by the National
Council on Disability, or NCD — at a meeting later this month.

The council has called for instructing students in “basic principles of disability competent healthcare.” Medical students would be required to demonstrate proper clinical practice skills and sensitivity, including respectful nomenclature, supported decision-making and knowledge of living arrangements that might affect compliance, according to letters sent by the National Council on Disability to the committee.

State News:
Residents Cowered While Workers at a Group Home Smacked and Pushed Them
By Benjamin Weiser and Danny Hakim, The New York Times, June 9, 2018
The people who worked at the brick building that housed 24 developmentally disabled residents called it the “Bronx Zoo.”
One worker regularly hit a resident while he ate, making him cower in fear at mealtimes. Another worker would repeatedly “smack, punch and push” a female resident, sometimes when she tried to watch staff members cook. A female worker sat in the lap of a male resident who used a wheelchair, placing his hands on her breasts and moving provocatively while other employees laughed and cheered, according to records and depositions.
Darlene Ruffin, an employee turned whistle-blower, told state investigators that she saw bruising every day. “I couldn’t keep up,” she said.

The abuse first came to light five years ago, leading to a public outcry and an investigation by the state, which runs the facility, called the Union Avenue I.R.A., in the Bronx. But in a new review of the case, The New York Times found that when officials tried to fire 13 employees for abuse or neglect at the home, they failed each time.

The workers were shielded by the state arbitration process, whose shortcomings — a focus of earlier Times reporting — often return abusive employees to the job.

The Bronx case is emblematic of a larger problem across New York. Hundreds of pages of disciplinary records from 2015 to 2017, obtained by The Times under the state open-records law, show that more than one-third of the employees statewide found to have committed abuse-related offenses at group homes and other facilities were put back on the job, often after arbitration with the worker’s union.

“They’re not hiring the right people,” said Keith Parks, Ms. Roselli’s stepfather, in an interview. “You have to be a caring, compassionate individual to be in these settings. These are not machines; these are not shelves you are stocking. These are human lives.”

The residents in the state’s far-flung network of more than 1,000 group homes are particularly dependent on their caregivers. In many cases, they are unable to communicate and live in group homes almost their entire lives. Some are also immobile, while others have been all but abandoned by their families.

Recycling abusive employees has long been an endemic problem. Eight years ago, The Times reviewed thousands of pages of disciplinary files for 233 workers. In a quarter of substantiated abuse cases, employees were transferred to other homes rather than fired, including in cases involving sexual assaults.

The newly obtained disciplinary records involved 120 employees. They show that while the transfers appear to have decreased, the state still keeps problematic workers at their jobs.
The findings are the latest sign that attempts to change the oversight of care for the developmentally disabled by Gov. Andrew M. Cuomo’s administration has stumbled.

“Eight years have passed, and there have been no significant reforms to stop or prevent physical abuse,” said Michael Carey, an advocate since his son Jonathan died in state care, and the most outspoken critic of the governor’s reform efforts.

Mr. Carey has lamented that the developmentally disabled are largely cut off from the mainstream justice system, and has long backed a bill in Albany that would require group homes to call 911 to report assaults and serious injuries.

Questions of appropriate discipline extend across the state, the new case files show. One group home employee in the state’s Finger Lakes region was returned to work in 2016 even after being found to have pulled the hood of a garment over a resident’s head before smacking the resident repeatedly.

An employee in the Hudson Valley was transferred from one group home to another in 2017 after pinching a resident’s arm so many times that it caused bruising. An employee in Brooklyn who pushed a resident to the ground, causing a head injury, kept his job, even though in 2015 an arbitrator found his testimony “rambling at times and evasive at others.” A worker near Buffalo was also retained that year after sleeping on the job and throwing a shoe at a resident, striking the person in the back.

Some confrontations with staff members turn deadly. Heather Roselli, 35 but with the mind of a child, feared she was going to die at her group home near Rochester. In 2017, she pleaded to be moved out and said she was “concerned that she will be killed there,” according to a state record of an emergency call she placed.

Later that year, she was fatally injured when she was pinned to the floor; two workers pleaded guilty in connection with her death. One of them, Sarah DiLallo, was “very close to being fired” before Ms. Roselli’s death and had been demoted for “her failure to follow numerous agency rules,” the state said in court records.

In 2013, in response to The Times’s articles, the Cuomo administration created the Justice Center for the Protection of People With Special Needs to investigate abuse. Critics have said it was poorly conceived, and judges have repeatedly challenged its power to prosecute cases. The center said it had an 85 percent conviction rate in the 174 cases it prosecuted over half a decade.

In its Bronx investigation, the center substantiated allegations of physical abuse or neglect against 13 employees, but the state failed to persuade arbitrators to fire any of them. The center and the Bronx district attorney each said recently that they lacked sufficient evidence to bring criminal charges. Ten of the employees still work for the state.

Missouri - Parents Fight To Record IEP Meetings
By Roger McKinney, Columbia Daily Tribune via Disability Scoop,| June 14, 2019

Nearly a dozen parents and others told the Columbia Board of Education this week that they favor changing the board policy to allow parents to record the meetings in which their child’s special education or disability plan is decided.The board is expected to make a decision on the issue at its September meeting.

As he introduced the recording policy, Superintendent Peter Stiepleman said there were 10 states in which the law allows recording of the special education meetings, including Kansas. He could find no school district in Missouri with a policy that allows recording of the meetings.

He said parents in Camdenton filed a lawsuit against the school district there, seeking permission to record the special education meetings, but the court ruled in the school district’s favor.

“State law doesn’t make it a right to record, it is just not illegal to record,” Stiepleman said. Missouri is a one-party consent state, meaning only one party in a conversation needs to consent to a recording.

Stiepleman presented results of an anonymous survey of teachers in which the teachers overwhelmingly opposed allowing recording of the meetings by a margin of 45 opposed and six in favor.

“This makes me uneasy,” read one response. “I can’t think of a reason why a parent would want to record a meeting other than something malicious.” Some others wrote that they thought recording the meetings would stifle open discussions.

Parents who spoke said the meetings are overwhelming, that it’s difficult to take notes when the meetings are happening and that they sometimes miss important details.

Chad McLaurin said the current policy is in conflict with state law. “Parents have the right to record — period,” he said. “It’s already state law.”

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


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).


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. Bot issues deserve clean, stand-alone bills.
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