February 21, 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:
Center for Medicare and Medicaid Services (CMS) Announces Changes to Rules Governing
Preadmission Screening and Annual Resident Review

CMS announced this week that they are making changes to the rules governing Preadmission Screening and Annual Resident Review for individuals with mental illness (MI) and intellectual and developmental Disabilities (I/DD). These revisions are currently open for comment.

While much of the 39 page document is mired in bureaucratic language ( i.e. "We propose to change the word pre-admission to preadmission," or "mental disorder to mental illness") VOR and other organizations have concerns about what these changes may or may not mean to persons with I/DD or their families and guardians. Among the proposals are:

  • Changes to the diagnoses of Intellectual Disability (p 7)
  • Changers to the reference materials used in making these determinations (DSM-5.. and AAIDD's manual (p 7).
  • Changes to the screening criteria for Level I sand Level II diagnoses (p p 12-13)
  • the determination of who is qualified to make such a diagnosis, (p 16-17)
  • Changes to rules for individuals placed in residential care in other states (p 10)

The proposed criteria would be subject to some degree of interpretation by different states, or by different assessors within each state. Your loved one may or may not be affected by these changes, depending on your state's determination to decrease the number of people receiving Level I or Level II services, the changes in evaluation criteria by including materials from the AAIDD manual instead of DSM-3-R, or due to the opinions of the "qualified individuals" assessing the level of need of your family member with I/DD.

National News :
CDC Finds Developmental Disabilities More Common In Rural Areas
By Michelle Diament, Disability Scoop, February 21, 2020
Children living in certain areas are more likely to have developmental disabilities, according to a new report from the Centers for Disease Control and Prevention, and where a child lives significantly impacts how much help they receive.

The report released this week from the CDC’s National Center for Health Statistics found that 19.8 percent of children ages 3 to 17 in rural areas qualified for a developmental disability diagnosis, compared to 17.4 percent of urban kids.

CDC researchers analyzed data on nearly 34,000 kids collected between 2015 and 2018 through the National Health Interview Survey, a routine government poll soliciting information about all types of health matters from individuals across the country. As part of the survey, parents were asked if their children had one or more of 10 different developmental disabilities: attention deficit hyperactivity disorder, autism, blindness, cerebral palsy, moderate to profound hearing loss, learning disability, intellectual disability, seizures, stuttering or stammering and other developmental delays.
The differences were most pronounced for ADHD — which affects 11.4 percent of rural children compared to 9.2 percent of urban dwellers — and cerebral palsy, which impacts 0.5 percent of rural kids versus 0.2 percent of others, according to the study.

Despite the increased prevalence, children with developmental disabilities in rural areas were “significantly less likely to have seen a mental health professional, therapist or had a well-child checkup visit in the past year” compared to those with similar diagnoses residing in cities. Moreover, rural kids were much less likely to receive special education or early intervention services, the report found.

Opinion: Trump Takes a Stand for the Mentally Ill
By D. J. Jaffe, Wall Street Journal, February 18, 2020

Hundreds of thousands of Americans with serious mental illness sleep in jails, shelters and prisons on any given night. Fewer than 40,000 are in state psychiatric hospitals. This is largely due to a federal policy, the Institutions for Mental Disease Exclusion, which created a financial incentive for states to kick the mentally ill out of hospitals. The White House’s new budget proposes easing the exclusion. It’s the most important thing federal government could do to improve care for the seriously mentally ill.

The IMD Exclusion, part of the 1965 law that established Medicaid, prevents the program from funding care for mentally ill adults while they live in hospitals or even adult homes with more than 16 beds. It was intended to prevent the federal government from taking on care of the mentally ill, which had historically been a state responsibility. Many mistakenly believed that newly developed antipsychotic drugs and community mental-health centers would obviate the need for institutions.

It’s been a disaster. Before Medicaid was enacted, states paid for psychiatric hospitalization, and it was readily available. But states soon realized that if they kicked patients out of hospitals, Medicaid would kick in and pay half the cost of care. This “deinstitutionalization” continues. The country has lost more than 450,000 mental-hospital beds since the 1950s, 12,000 of them since 2005.

Rep. Eddie Bernice Johnson (D., Texas), a former psychiatric nurse, has introduced a series of bills to abolish the IMD Exclusion. Like President Trump, Democratic candidates Amy Klobuchar and Pete Buttigieg support the idea. Despite this bipartisan support, the proposal has stalled in Congress because of opposition from civil libertarians and mental-health advocates who continue to argue, despite the evidence, that institutions aren’t needed because everyone with mental illness recovers with proper support and wellness initiatives. Bernie Sanders opposes easing the IMD Exclusion, even as he promises to provide free health care for all.

State News:
New York - Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy
By Benjamin Weiser, New York Times, February 21, 2020
Children with developmental disabilities were held under brutal conditions at a notorious New York facility. Decades later, they still face abuse and neglect.

When the abuse began, Migdalia could not call for help. She was 57 but with the mind of a child. She had never spoken and could not form words. She lived in a Bronx group home with two dozen other adults who also were mostly nonverbal and helpless. Bruises started appearing on her arms and legs. What looked like a shoe print on her belly.

A state investigation later concluded that she and other residents had been beaten by some of the home’s employees, the people who had been entrusted with her care. In Migdalia’s case, the abuse represented an especially deep betrayal.
Migdalia and thousands like her had grown up in the Willowbrook State School, a notorious institution on Staten Island. For decades, the state used the facility as a warehouse for children and adults with developmental disabilities. They were left unattended, naked or in rags. Some were strapped in beds or chairs; others were left to rock endlessly on filthy, locked wards.

Exposure of these conditions led to a landmark 1975 federal court settlement in which New York agreed to move Willowbrook’s residents into small group homes. The state pledged that each individual had a “constitutional right to protection from harm.”

But that vow has been broken: Many of the institution’s 2,300 alumni who are alive today still suffer from mistreatment, a New York Times investigation found.

Last year alone, there were 97 reported allegations of physical abuse by group home workers against Willowbrook alumni, according to internal state data obtained by The Times.
There also were 34 allegations of psychological abuse and hundreds more of neglect and other mistreatment, like improper use of restraints or seclusion, medication errors and theft, the data shows.

Negligence may have contributed to the death of one disabled woman in Brooklyn and the loss of another woman’s finger in a Long Island group home, interviews showed. One man placed in a scalding bath or shower went to the hospital with second-degree burns.

Even critics agree that large numbers of the surviving alumni are in a better situation today than they were in the harrowing conditions at Willowbrook, but they say the homes are still short-staffed and the employees do not have sufficient training and oversight.

The Bronx group home where Migdalia lived, on Union Avenue, offered a clear example of the problem. Of more than a dozen residents found to have been abused or neglected in the state-run facility, at least five of the victims were Willowbrook alumni.

“Now we have small Willowbrooks,” said Ida Rios, 86, a retired teacher whose late son Anthony was at Willowbrook and who now runs an association for Bronx families with relatives in group homes. “As much as things have changed,” she said, “they don’t change.”

Watch a Times investigation of abuse at state-run group homes on “The Weekly,” Friday at 10 p.m. on FX and streaming Saturday on Hulu .
Michael Carey, a long-time advocate for reforming laws to better protect people with I/DD and Autism, and author of New York's Jonathan's Law , urges the state to adopt a law requiring all incidents of abuse or neglect be reported using the state's 911 service, as opposed to the current system which requires reporting to the state's Justice Center.

"[P]roviding people with disabilities living in group homes and mental health facilities equal access to immediate 9-1-1 medical & police first responder services will dramatically reduce these crimes and ensure that those that abuse our most vulnerable will be held accountable by law. Bypassing 9-1-1 call systems, criminal investigations, laws, district attorneys and courts is wide-scale discrimination in civil rights which denies people with disabilities their 14th Amendment right to 'equal protection of laws' and justice."
- Michael Carey - Civil Rights and Disability Rights Advocate 
Maine - Justice Department Finds Maine in Violation of Law for Limiting Disability Services
By Erin Rhoda, Bangor Daily News, Feb. 19, 2020
The U.S. Department of Justice has determined that Maine has been violating federal law for years by not providing a man who has several disabilities and medical conditions with the help he needs in his home to go about his daily life, in a finding that could have ramifications for many more people with disabilities.

The state must grant him the services he is eligible for, and protect the civil rights of other people with disabilities who need support services, or else potentially face a lawsuit, according to a Feb. 10 letter from the Justice Department to the Maine attorney general’s office.

The letter could have major implications for where people with intellectual and developmental disabilities who require around-the-clock care can live. Currently, the state requires those with higher needs who are receiving Section 21 services to live in group homes, instead of allowing them to live at home with family members and have support staff come to them.

Now, the federal government is asking that Maine make it possible for them to receive services at home.

“I think it will just give people a much broader array of options and choices of where to live,” said Staci Converse, an attorney with Disability Rights Maine, which was not involved in the Justice Department’s investigation.

A spokeswoman for the Maine Department of Health and Human Services said it is reviewing the Justice Department’s letter “in close consultation with the attorney general’s office to determine next steps” and that its goal is “always to ensure that
adults with developmental disabilities and autism receive the necessary services that best meet their needs.”

Others who care for people with disabilities questioned how the state will be able to meet the demands laid out by the Justice Department, given an ongoing struggle to find workers.

The Justice Department began investigating in May 2018 after receiving a complaint from a parent on behalf of an adult son who needs help with “all daily life activities,” according to the department’s letter. He is not named. After receiving Section 21 services for five years, in 2014 the state limited his assistance to 84 hours per week, while acknowledging that he actually needed 168 hours of services per week, according to the letter.

Section 21 pays for workers to help people with intellectual disabilities and autism perform the daily tasks of life, such as eating, dressing, going to appointments, volunteering, socializing and working. It’s funded through Medicaid with state and federal dollars.

Having the man receive reduced care “is not sustainable,” the letter states. “Although his parents assist as much as they can, both are aging and have physical limitations that render them unable to consistently or effectively assist their son.”

Pennsylvania - As state Prepares to Close State Centers for Intellectually Disabled People, Nearly 13,000 on Waiting List for Services
By Paul Von Ostof, Pittsburgh Action News TV-4, February 19, 2020
Action News Investigates has learned that nearly 13,000 Pennsylvanians with intellectual disabilities are on a state waiting list for services.
Now, some families on that list worry they could be forced to wait even longer.

That’s because the state is closing Polk and White Haven centers and moving about 300 residents to community group homes.

Teneille Schwab, 18, of Mercer County, has been on the waiting list for more than a decade.
Her mother, Tammy Schwab, said Teneille has a chromosomal disorder. She cannot speak or feed herself.

When Schwab is at work, her insurance pays for a nurse to be with her daughter. But when the single mother of four is not at work, said she gets no help.

“People think they're handing you money hand over fist when you have a special needs child with all these programs. Well, the programs aren't there, the help's not there and the money’s not there,” Schwab said.

She said she was forced to miss her other children's sporting and scouting events while caring for Teneille. “I see other adult children spending time with their parents and I think, my kids don't even know me.”
Pennsylvania State Human Services Secretary Teresa Miller

Ever since Teneille was a child, Schwab has worked at group homes and other facilities for intellectually disabled clients, hoping she might find a place for Teneille when she grows older. But she said she has not seen a single community program where she would be comfortable placing her.

“I'm sitting her at 55 years old thinking, dear God, I'm going to get to the point where I can't take care of her and my kids are going to go through the same hell that I went through," Schwab said. "I don't want that."

Eight years ago, Schwab took a job at Polk Center, hoping it could eventually be a home for Teneille. But now that Polk is closing, she worries that Teneille will have to live with her other children.
“They love Teneille, but I don’t want her to be a burden to them,” Schwab said.

Her daughter is one of 12,700 intellectually disabled people on the state waiting list for services.

Pennsylvania - Yudichak says NEPA Legislators will keep Fighting State Facility Closures
By Jim Dino, Citizen's Voice, February 21, 2020

Two state facilities have never closed at the same time in the same county.That’s why state Sen. John Yudichak, I-14, Swoyersville, told the Greater Hazleton Chamber on Thursday morning that he will continue to join with other Northeast Pennsylvania legislators in Harrisburg to fight the closures of the White Haven State Center and the State Correctional Institution at Retreat.

“The closures are devastating to families who depend on these facilities, to the employees who work at these facilities and to the communities of Luzerne County that support these facilities. When the facilities close, Luzerne County stands to lose 800 jobs and an annual economic loss of over $108 million,” Yudichak said.

The latest volley is a new bill Yudichak and state Sen. Lisa Baker, R-20, Lehman Twp., are introducing called the Community Recovery and Reinvestment Act.

Yudichak said when the state Legislature reconvenes March 16, there will be a “discussion” about trying to override the governor’s veto of Senate Bill 906, which would have kept the two facilities open.

Yudichak said that bill was approved by the state House and Senate by overwhelming margins. A two-thirds majority in both houses would be needed to override the veto.

“You have to understand there were opponents of Senate Bill 906,” the senator said. “Many of them are from community-based care advocacy groups that have worked for the last 30 years to close down these state centers. They want every state center closed in Pennsylvania. ”

Closing White Haven hits home with Yudichak, because his mother worked there as a dietary aide for many years.

“It breaks my heart, the closure of White Haven,” he said. “My mother loved the people she served, and she loved her co-workers. As a young boy when I would go up to White Haven to see my mom, I recognized very clearly this was a family setting. It was a community setting. ”

North Carolina - ’We Are In A Mess’: Meck County Considers Cutting Ties with Cardinal Innovations
By Joe Bruno, WSOC TV, February 20, 2020
County leaders are questioning Cardinal Innovation’s service as a managed care organization. Tuesday night at a county meeting,

Assistant County Manager Anthony Trotman described Cardinal’s service as not adequate."This is really bad," Commissioner Trevor Fuller said after Trotman's presentation. "We are in a mess and I fear that people's lives are being put at risk because of this."

Cardinal Innovations has served as Mecklenburg County's managed care organization since 2014. Cardinal coordinates mental and behavioral health treatment for the county. Cardinal receives funding from the state and federal level.

At Tuesday's meeting, Trotman highlighted numerous problems the county is having with Cardinal.

The problems include 43 children in an emergency residential placement were delayed or denied access to Cardinal’s network of care. A spokesperson for Mecklenburg County said it is difficult to provide a cost estimate to taxpayers
based on those denials, but the county paid $1 million in ongoing care related to those youth. The county said 127 children experienced county-funded emergency placements in 2019.

Trotman said changes in funding to Mecklenburg’s Mobile Crisis team resulted in 52 missed calls for service since December 2019. The cut in funding resulted in Mobile Crisis having to cut mobile clinicians from eight to three.

The county also said it has encountered issues with Cardinal in the Services for Adults Guardianship Unit, Criminal Justice Services and in juvenile court.

“I was stunned, I can say I am extremely concerned,” Commissioner Susan Harden said. “It’s unfair to the patients, it is unfair to the families and it is unfair to the taxpayers.”

Maryland - Bowen Levy Went to School One Day and Never Came Home
By Donna St. George, The Washington Post, February 15, 2020
Bowen Levy was a boyish-looking teenager with curly brown hair who was diagnosed with autism at an early age. He was gentle and spirited, his family said — laughing infectiously when his sister danced with him or when he thought he might get tickled.

One day in November, he went to school and never came home.

Bowen boarded a school bus in his Annapolis neighborhood, riding it to the public school he had attended for more than a decade — Central Special in Edgewater, Md., where most of the students have severe disabilities.

That afternoon, Bowen choked on a thin rubber glove and lost consciousness. Family members say the doctors and nurses who treated the teen told them he was probably without oxygen for 10 minutes or more.

The teenager’s death Nov. 10 came amid long-standing concerns nationally about the care and education of some of the most vulnerable students in schools.

It shook the disability community and sparked concerns among family members and advocates about school staffing levels and supervision practices, and whether other children could be at risk. One major issue for Bowen’s family is whether he had the one-to-one aide they say he was supposed to be assigned that day.

Educators and advocates nationally point to the critical importance of aides when safety is at issue, as it was for Bowen; the teen was nonverbal and had pica, a propensity to chew or eat nonfood items. Training and support for aides vary widely, they say.
“They are some of the lowest-paid members of the educational team, often with the least amount of formal education, and there are no national licensing standards,” said Emily Nusbaum, a researcher who has long worked in special education and teaches in the field.

In Maryland, Bowen’s family members say that much about the day he choked remains unclear — how closely he was monitored, how quickly his distress was noticed, how soon 911 was contacted — and are calling for answers. They say they want to make sure what happened to Bowen never happens to another child with special needs.

School system officials say the death is under investigation, describing the loss of a child as anguishing but declining to discuss specifics.
The teenager died at Johns Hopkins Children’s Center in Baltimore on Nov. 10, eight days before his 18th birthday.

“How long did he suffer before someone noticed?” Bryan Levy, his father, asked. “That’s what keeps me up at night.”

Special Education in California in Need of Overhaul, Researchers Say
By Carolyn Jones, Lake County Record-Bee, February 20, 2020
Special education in California should be overhauled to focus on the individual needs of students, with better training for teachers, more streamlined services and improved screening for the youngest children, according to a compilation of reports released today.

Those were some of the recommendations proposed in “Special Education: Organizing Schools to Serve Students with Disabilities in California,” a package of 13 reports and a summary produced by Policy Analysis for California Education, a nonpartisan research and policy organization led by faculty from UC Berkeley, UCLA, University of Southern California and Stanford University.

“By almost every indicator you look at, special education in California is in dire need of improvement,” said Heather Hough, PACE’s executive director. “We need to rethink the way we organize schools, so students with disabilities are at the center and not at the fringes.”

The research papers looked at dozens of ways to improve special education, including how to recruit and train teachers, better ways for schools and other agencies to coordinate services for disabled young people and how schools can help special education students with career and college planning.

Funding shortfalls are a major concern in special education, especially as the number of students in
special education increases, but the report did not look closely at financial matters because that topic was partly addressed in a recent PACE report called Getting Down to Facts, Hough said. In addition, West Ed, a consulting firm, is working on a separate report on special education funding in California, she said.

Researchers praised districts such as Sanger Unified in the Central Valley and the Orange County Office of Education that are already taking steps to improve special education services and can serve as models for the rest of the state.

Their recommendations come after years of concern about the state of special education in California, which currently serves more than 725,000 children with a range of physical and intellectual impairments, including autism and specific learning disabilities like dyslexia.

In his proposed budget last month, Gov. Gavin Newsom described the state’s special education system as “a crisis.”

“I try not to use that word or overuse that word, but it’s a crisis and it’s a real shame,” he said.


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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