March 6, 2020
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 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR's Annual Meeting and Legislative Initiative will be held on June 6 - 10th this year.

Details will be forthcoming.

If you are planning on creating a crowdfunding campaign, now is the time to begin!

Our room reservation block at the Hyatt won't open for several weeks, but it's not too early to start planning your stay and making reservations for air or train travel.
VOR and YOU:
March is
Developmental Disabilities Awareness Month
National News :
Hassan Bill would Help Recruit More Professionals to Care for Disabled
By Michael Cousineau, New Hampshire Union Leader, February 29, 2020

Maggie Hassan, D-N.H., and Susan Collins, R-Maine, plan to introduce a bill Monday to aid in hiring more direct-support professionals (DSPs) who work with people with disabilities.

“Our bipartisan legislation will help address this workforce shortage, and I will continue working across the aisle to ensure that people with disabilities have the support that they need to thrive,” Hassan said in a statement.

The bill calls for a better way to count the number of people serving in such roles. That will help identify where to start targeted workforce training programs to help tackle workforce shortages, according to Hassan’s office.

Hassan pointed out she is “the mother of a son who experiences severe disabilities,” and she knows how much such professionals can help people with disabilities.
Local service providers applauded the measure.

“This bill would help to provide DSPs with some well deserved recognition, help professionalize the role and hopefully shine a light on the invaluable and necessary services they provide every day,” Michelle Donovan said in an email Friday. Donovan is president of the Private Provider Network, a group of private agencies that provide support and services to individuals with intellectual and developmental disabilities through contracts with the 10 area agencies.

“Direct support professionals are the most essential part of the service system for people with intellectual and developmental disabilities,” said Donovan, who also is state director for Living Innovations, which assists people who have disabilities.

“Due to the extreme shortage of people providing these valuable services, many of our most vulnerable citizens go without adequate and vital support — real people who are able to work and participate in the life of their communities but are not able to do so without the support of a DSP,” Donovan said.
The bill would change the way the Bureau of Labor Statistics system classifies direct-support professionals to better count and track those workers.

FDA Bans Electrical Shock Devices Used on People with Developmental Disabilities
By Gina Yu, CNN, March 5, 2020
Electrical shock devices meant to interrupt self-injurious or aggressive behavior have been banned by federal officials in a rare move.

The only facility known to use these devices in the US is the Judge Rotenberg Educational Center, according to the FDA. The school, based in Canton, Massachusetts, is for people age 5 to adults with behavior issues and intellectual disabilities. The FDA estimates 45 to 50 individuals are exposed to devices there.

The US Food and Drug Administration published a final rule Wednesday to ban the devices after years of pressure and complaints from advocacy groups and family members of people who've been treated with shock therapy.
The electrical shocks were also an attempt to condition people to stop engaging in self-harming behavior.

"Many people who are exposed to these devices have intellectual or developmental disabilities that make it difficult to communicate their pain.

Evidence of the device's effectiveness is weak and evidence supporting the benefit-risk profiles of alternatives is strong," the FDA said.

State News:
Arkansas - "Good News" Comes to CHDC Employees
By Hilary Andrews, Log Cabin Democrat, March 2, 2020
Employees of the Conway Human Development Center received good news during a visit by state leaders on Monday.

CHDC employs around 1100 employees and provides residential treatment services to 500 individuals with intellectual and developmental disabilities.

Department of Human Services Division of Developmental Disabilities Services (DDS) Director Melissa Stone, CHDC leaders and superintendent Sarah Murphy, members of the DDS board and state officials including Sen. Jason Rapert and house representatives Stephen Magie, Stephen Meeks and Spencer Hawks were all present for the announcement.

“Today, we announced direct care employees, who take care of our most vulnerable, will receive free training that will let them get a certified nursing assistant certificate and[,] once complete[,] they will get an accompanying pay raise,” Rep. Stephen Meeks posted to his Facebook after the event.

Superintendent Sarah Murphy said the announcement is the first time in 40 years that DDS has taken a look at pay structure for staff and
found a way to increase pay.

“One of the initiatives I launched was to get agencies to make better use of their data,” Meeks said via Facebook. “DHS has started doing that for the first time in 40 years and found if they provide better training they can reduce turn-over, which reduces training cost and overtime. This will be reinvested in their employees. Giving employees a pay raise and better training at no additional cost to tax-payers.”

Murphy added they can start moving employees into the higher-graded positions by July 1, as part of the plan, all must become certified by Dec. 31 and any employee making minimum wage will get an increase to $11 an hour when state pay goes up Jan. 1, 2021.

Georgia - Proposed Ban on Organ Transplant Discrimination Clears the House
By Jill Nolin, Georgia Recorder, February 29, 2020
A bill that would protect Georgians from being passed over for an organ transplant because of their disability cleared the House Friday.

The bill – called Gracie’s Law for an 11-month-old Washington County baby with Down syndrome – easily moved through the House without opposition. It now moves to the Senate.

“This bill prevents any discrimination from anyone for receiving an organ or tissue transplant, irregardless of developmental or physical disability,” said Rep. Rick Williams, a Milledgeville Republican who is the bill’s sponsor.

Federal law already protects people with intellectual and developmental disabilities from organ discrimination, but a recent study found that they still lack equal access to organ transplants.
The bill’s namesake, Gracie Nobles

The bill proposed under the Gold Dome seeks to help address that disparity by creating a state-level ban, which would open up state courts for claims of such discrimination. These cases would also have priority status in the courtroom.

And under the proposal, insurers also could not deny coverage for an organ transplant because of a person’s disability.

Minnesota - Advocates seek to Abolish Subminimum Wages for People with Disabilities
By Chris Serra, Star Tribune, February 27, 2020

Note from VOR: We are reprinting this article in spite of the obvious bias of the author and publisher.
Minnesota would become the fourth state in the nation to prohibit employers from paying people with disabilities less than the state’s minimum wage, under a proposed measure that would phase out the decades-old practice by 2024.

The legislation, which passed a state House committee this week, would force dramatic changes at approximately 100 centers across the state, known as sheltered workshops, that benefit from a loophole in federal labor law that allows them to pay people with disabilities based on their productivity, rather than a fixed hourly rate. In many cases, their pay amounts to just cents an hour for basic tasks, such as packaging merchandise, scrubbing toilets and shredding paper. These state-subsidized workshops, which provide a broad range of support services, employ nearly 10,000 people with disabilities — among the most of any state, according to Minnesota workforce officials.

The practice of paying subminimum wages began in the Great Depression as a way to give people with disabilities a chance to learn job skills. But in recent years, the practice has come to be seen as discriminatory, exploitative and a violation of civil rights under the landmark Americans with Disabilities Act. A Star Tribune investigation in 2015 found that many of those in Minnesota’s workshops spend years toiling in poverty and isolation with little hope for advancement. A growing number of cities and states have banned or restricted the practice of paying sub­minimum wages, in the hope of integrating thousands of people with disabilities into the general workforce at competitive wages. Two states, Oregon and Rhode Island, have been forced to shutter workshops under legal settlements with the U.S. Department of Justice.
Proponents of the legislation maintain that a gradual phasing out of subminimum wages would enable the state to avoid costly sanctions and would give state workforce officials and families time to develop alternative employment options in the community.

Still, the measure faces vigorous opposition from many parents of people with significant intellectual and developmental disabilities, who fear their adult children will lose support services and have nowhere to go if the local workshops close. In many smaller towns, these parents maintain, the workshops — sometimes called “day activity centers” — are the only option for community engagement and employment. In some rural communities, workshops are also the primary source of transit, shuttling people to and from work and activities in the community.

They also provide a vital source of social interaction for people who would otherwise be stuck spending their days at more isolating group homes, parents maintain.

At a contentious legislative hearing Wednesday, a number of parents spoke passionately in defense of the workshops and cautioned against hasty action that would force them to close.

“Working for less than minimum wage is a choice,” said Dawn Kovacovich, a retired educator from northern Hubbard County. She has a 28-year-old daughter with autism who attends a day activity center in Park Rapids. “If we take away that choice without first providing an alternative, we are destroying the quality of life for thousands of people.”

New Jersey - Governor’s Budget Plan Would Hike Aid for Those with Developmental Disabilities
Press Release, Cape May County Herald, March 5, 2020

Gov. Phil Murphy’s proposed state budget for the Department of Human Services would increase support for individuals with developmental disabilities by $62 million, including $42 million in new funding for the developmental disabilities’ frontline workforce and $20 million in new resources for day program services for adults with intellectual and developmental disabilities. 
According to a releasea, the proposed $42 million would increase wages for the workforce that supports individuals with intellectual and developmental disabilities living in the community, including direct support professionals and group home managers. Together with wage increases included in the previous two budgets signed by Murphy, if adopted, this investment would mark $110 million in additional funding for the developmental disabilities workforce under the governor’s tenure. 
The budget also includes $20 million in new funding to support community-based day programs.
“A strong and caring workforce and robust daily programming are essential for individuals with intellectual and developmental disabilities to thrive in our communities,” Human Services Commissioner Carole Johnson stated. “Our budget prioritizes these critical services by increasing wages for the professionals who support individuals in the community and by increasing investment in the day programs that provide individuals’ community engagement opportunities. We look forward to working with the Legislature to advance these proposals and to the benefits that these initiatives will bring to individuals and families throughout New Jersey.”
New Jersey Human Services’ Division of Developmental Disabilities provides supportive services to about 24,000 adult individuals with intellectual and developmental disabilities, including employment, housing and community engagement. 
To thrive in the community, many individuals depend on the support provided by direct support professionals (DSPs) who ensure that individuals with intellectual and developmental disabilities are achieving their personal goals. 
“Direct support professionals play a crucial role in helping individuals with disabilities live successfully in our communities,” Human Services Deputy Commissioner Sarah Adelman stated. “Their dedication leads to better lives for so many New Jerseyans, which is why we continue to recognize their commitment and value their work and all that they do for individuals with disabilities.”

New Jersey - After 4 Traffic Deaths, Town wants Residential Facility Shuttered. But the State Says That’s ‘Unrealistic.’
By Rebecca Everett, NJ Com, February 23, 2020
For six years, officials in this Monmouth County town have repeatedly sounded alarms about conditions at Manalapan Manor, a residential care home that houses low-income people with mental and physical disabilities, calling it dirty, rundown and even dangerous.

The facility’s inadequate food and supervision, along with a total lack of anything to do at the home, means that residents cross a busy highway to go to Wawa or CVS, the township says. In the last five years, four residents have been killed crossing Route 33. The most recent, Phillip Baines, 39, of Newark, died a week ago.
The death has rekindled the three-way feud between Manalapan Manor’s owners, the township and state inspectors at the Department of Community Affairs. The dispute has been going on since 2013 and predates the current owners who bought it in 2017. The state DCA declined again this week to revoke its license as the township had requested.

At the heart of the issue is a profound disagreement about what a facility like Manalapan Manor should be and what standard it must live up to.

“If there were animals in that facility, cats or dogs, people would be out there protesting,” Deputy Mayor Susan Cohen said Thursday.
In letters begging the state to revoke the facility’s license, Cohen has described past issues ranging from bedbug infestations to clogged toilets and plumbing problems, and so many incidents that police are often called there multiple times a day.
But the state agency in charge of inspecting the facility maintains it is in compliance and past violations — 182 in 2019 alone — have been addressed. Two inspections in the last week found no further violations, the state told Cohen Wednesday.
She doesn’t put much stock in what they say, however. After an inspection Nov. 7 found the facility compliant, Cohen sent photographs of the interior to inspectors. As a result, they came back a week later and found 21 violations, ranging from a malfunctioning fire alert system to broken furniture, toilet and windows, records show. All were soon fixed, the state said.

A damaged door, broken window and dirty mattress cover were photographed by a volunteer in Manalapan Manor in November 2019, according to Deputy Mayor Susan Cohen.Provided
While there are strict rules about the quality of care and living conditions in group homes and nursing homes, the state’s expectations for facilities like Manalapan Manor — though they are classified as residential health care facilities — are not the same.

“While this facility has been characterized as a ‘mental health’ or ‘senior’ facility, it is not. It is a boarding home that houses low-income individuals with physical and mental illnesses,” Edward Smith, director of the Department of Community Affairs’ Division of Codes and Standards, said in a letter to Cohen in November. “It is unrealistic to expect that any facility of this class would be fully compliant for any length of the time considering the population it is serving.”

The state describes a residential care facility as a place providing “sheltered care and services, in a homelike setting, to residents who do not require skilled nursing care, in order to assist residents to maintain personal interests and dignity as well as to protect their health and safety.”

Resident of group home was sickened by an inappropriate anti-psychotic medication as prescription was increased by 500%
By Dave Kassel, COFAR Blog, March 2, 2020

A group home administered an inappropriate and unnecessary anti-psychotic drug to an intellectually disabled woman and increased the dosage by 500 percent last year, according to the woman’s sister.
The 57-year-old woman, who we are referring to as C.J. for privacy reasons, developed tardive dyskinesia after being administered the anti-psychotic drug, Latuda, for nine months, according to her sister, Ellen O’Keefe, who is also an advocate for her.

The staff of the Canton-based group home also left the woman alone on two occasions last June and in January of this year in apparent violation of regulations of the Department of Developmental Services (DDS). The group home is operated by Delta Projects, Inc., a corporate provider to DDS.

In one instance, C.J. was admitted to a hospital for treatment of pneumonia after she was left alone by the staff in the residence, O’Keefe said. She was later admitted to the same hospital for treatment of symptoms of the tardive dyskinesia, her sister said.

Tardive dyskinesia is a serious disorder that caused further cognitive impairment in C.J. and involuntary, repetitive body movements, O’Keefe said. She said her sister has also begun to need a walker. O’Keefe, at COFAR’s suggestion, reported the use of the medication on C.J. to the Disabled Persons Protection Commission (DPPC).

O’Keefe said C.J., who has moderate intellectual disability, can’t read, but has very good communication skills.

Last week, O’Keefe and her family moved C.J. to a new group home run by a different provider, South Shore Support Services. O’Keefe said she was not offered an option by DDS of placing C.J. either in a state-run group home or a residence closer to her family; but the family accepted the placement DDS offered because they wanted C.J. removed from Delta Projects’ care as soon as possible.

New York - NYC Special Ed 'Crisis' Draws Attention of State Education Officials
By Nick Niedzwiadek, Politico, March 2, 2020
The New York City school system is failing thousands of students who need special education services, according to lawmakers, advocates and multiple lawsuits . And a six-story brick office building in downtown Brooklyn has become a microcosm of its dysfunction.

Parents and guardians trek to the building, a Department of Education site at 131 Livingston Street, when seeking to force the city to provide services required in a student’s individual education plan or to pay for a child’s tuition at a private school if the public school system cannot meet those needs.

But that process has been beset by a host of problems, ranging from insufficient space to hold hearings, too few people willing to adjudicate these matters, packed calendars that too often fall hours behind schedule, facilities that lack privacy and rooms that are either overheated or too cold, according to a damning report commissioned by the State Education Department last year.

And so, according to parents and others navigating the system, a space intended to offer relief to families seeking special education services has instead become another part of the problem.

“They’re not providing a professional environment,” said Steven Alizio, a Manhattan-based attorney who specializes in special education law.

This week the SED is expected to present the Board of Regents, the powerful body that steers education policy in New York, with a list of actions the agency and the city DOE are taking to tackle the issue. The Regents will also consider a slate of potential regulatory changes, including allowing video conferencing and permitting out-of-state attorneys to serve as hearing officers and non-attorneys to handle these cases.

The city says it has added more staff and programs to build out its services, and that it is committed to continually improving the public school system, which serves roughly 200,000 special education students.
“We are working closely with the State to make this process better for families including updating the pay policy for impartial hearing officers, adding staff to process cases faster, completing more settlements, and eliminating case processing backlogs," DOE spokesperson Danielle Filson said in a statement. "We recognize we have more work to do to serve every family quickly and thoroughly but we are glad we have made so much progress over the past year and a half.”

Complaints against the DOE have surged in recent years, swamping the dispute-resolution system with cases that administrators have neither the capacity nor personnel needed to keep pace, leading to delays that have exasperated parents, attorneys and special education advocates and left students without critical special education services for months on end.

“A lot of times it feels like you’re smacking your head into the wall," Alizio said. “It is baffling. There needs to be some very comprehensive reform, but it’s not clear how to do that.”

More than 7,600 due process complaints were lodged in New York state during the 2017-2018 school year, an indicator of parental dissatisfaction with the provision of special education services that makes the state a glaring outlier nationally, according to data presented to the Board of Regents in January. By comparison California, Florida, Illinois, New Jersey, Pennsylvania and Texas combined for fewer than 8,000 such complaints.

New York City is home to about 40 percent of the state’s schoolchildren overall but accounts for more than 96.4 percent of complaints across the state between the 2014-2015 school year and mid-January, 2020.

“Make no mistake: this is a civil rights crisis,” said New York City Council Member Mark Treyger, who heads the chamber's education committee. “The whole point of these early intervention processes is to provide children with the support they need.”


Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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?

Contact us at [email protected]
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
VOR Bill Watch:
Click on blue link to view information about the bill


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. 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. Both issues deserve clean, stand-alone bills.

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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.

Money Follows the Person Renewal (Authorization and Appropriations) - Money Follows the Person (MFP) has been a popular program that has helped many people to move from congregate care into smaller, settings. Unfortunately, it has been used by some states to force the closure of ICFs and move people into "integrated" settings without their consent. We ask that MFP not be renewed until this and other shortcomings have been remedied. MFP has passed through Congress by voice votes, without discussion of these problems.


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. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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