July 26, 2019
United States Capitol, Washington, D.C. - July 15, 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

VOR and YOU:
New on VOR's YouTube Page!
VOR's Sue Jennings, Founder of KIIDS (Keeping Individuals with Intellectual Disabilities Safe - https://thekiids.org) speaks to the Interagency Autism Coordinating Committee (IACC, a division of the National Institute of Health) at their "Workshop on Addressing the Housing Needs of People on the Autism Spectrum".

While most of the conference was directed to community-based options, Susan spoke to the importance of ICFs as part of the continuum of care, and their role in meeting the needs of individuals who are underserved by waiver services, like her son Joey.

The conference also featured comments from our friends Amy Lutz and Jill Escher, of the National Council for Severe Autism. NIH posted 5 hours of video from the conference.

Earlier this week, we posted 3 videos from Rebecca (Becky) Japko, the new Chair of VOR's Communications Committee. Becky's videos feature interviews with her sister Linda, whose home is the Brenham State Supported Living Center in Texas.

To view Becky's videos, please visit our YouTube page "VOR - A Voice of Reason"

National News:
House Passes Autism CARES Act
By Michelle Diament, Disability Scoop, July 25, 2019
Federal legislation allocating over $1.8 billion in government spending on autism efforts is one step closer to being approved.

The U.S. House of Representatives passed the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act, by a voice vote Wednesday.

The legislation, H.R. 1058, would renew a federal law that originated in 2006 and ensures support for research, prevalence tracking, screening, professional training and other government activities related to autism.

As it stands, the current version of the Autism CARES Act is set to expire at the end of September, meaning that without action from Congress, programs established through the act will come to a halt.

“Renewal is critically important because Autism CARES is vital to pursuing research and high-quality services for people with autism,” said Stuart Spielman, senior vice president of advocacy at Autism Speaks.

Under the measure approved by the House this week, the federal government would spend $369 million on autism efforts annually through 2024.

Senators Slam Abuse in Nursing Homes; Criticize CMS Over Reporting Requirements
By Elizabeth Newman, McKnight's Long-Term Care News, July 23, 2019
If there’s anything that will bring a bipartisan group of U.S. senators together, it’s the topic of abuse in nursing homes and a hearing Tuesday was proof yet again.

Abuse deficiencies cited in nursing homes more than doubled in four years, increasing from 430 in 2013 to 875 in 2017, a Government Accountability Office report released Tuesday found. The most common physical and verbal abuse was by staff, at 58%, investigators said.

Members of the Senate Finance Committee, however, directed much of their ire not at providers but rather at the Centers for Medicare & Medicaid Services.

“Not only have abusive incidents doubled in recent years, but the GAO has found that CMS – the agency charged with ensuring that these facilities meet federal quality standards – often cannot access information about abusive incidents after they occur and, therefore, cannot take the necessary steps to remedy the situation,” said Sen. Thomas R. Carper (D-DE).

“CMS needs to ramp up its oversight efforts and fix the problems identified by the Government Accountability Office,” added Sen. Charles Grassley (R-IA), the chairman of the committee.

Common ground

All parties at the hearing — which included American Health Care Association’s President and CEO Mark Parkinson — stressed a need and commitment to reducing abuse and neglect in nursing homes. They all also found common ground on better background check practices. 

“Our members need access to the National Employee Data Bank so we can learn when potential employees with criminal backgrounds have moved across state lines. We don’t have this information and we need it,” Parkinson said. 
Ranking committee member Sen. Ron Wyden (D-OR) expressed surprise that 13 states have no background check process for nursing home employees. 

There are inconsistencies and loopholes throughout the country when it comes to nursing home oversight, including about providers having to self-attest their ownership, testified Megan H. Tinker, Senior Advisor for Legal Review of the Office of Counsel to the Inspector General, Health and Human Services.

Additionally, a provider can be eligible for Medicaid if it is already in the Medicare program, even if there hasn’t been a background check through Medicare, Tinker added.

“That leaves open a possibility a provider could be a provider for Medicaid with no background check,” she said, adding that CMS did not concur with that recommendation to close that loophole.

VOR sincerely hopes that the Senate will look at abuse and neglect in HCBS (Home and Community Based Service) settings for people with Intellectual and Developmental Disabilities, as well.

A good starting point would be the 2018 Joint Report from the Office of the Inspector General of the Department of Health and Human Services, the Administration for Community Living, and the Office of Civil Rights for the Department of Health and Human Services.

Trump Administration Cautioned Against Changing IDEA Policy
By Michelle Diament, Disability Scoop, July 22, 2019
Disability advocates and former federal special education officials are warning of possible Trump administration moves to alter policy related to a central tenet of the Individuals with Disabilities Education Act.

Advocates met with top officials at the U.S. Department of Education last week after receiving what they called “credible information” indicating that the agency planned to change or reinterpret policy on IDEA’s requirement that students with disabilities be served in the least restrictive environment, or LRE.

IDEA states that students with disabilities should be taught alongside children without disabilities to the “maximum extent appropriate.” Advocates said they are worried that the Trump administration is looking to change the law’s presumption that “all children with disabilities will be educated in the general education classroom; except in the rare circumstance that the student cannot get a satisfactory education in that environment even with supplementary aids and services.”

At the meeting, the advocates said they were told by Department of Education Chief of Staff Nate Bailey that “there would be no such
reinterpretation of LRE in the immediate future” and he committed to upholding the law.

But, Bailey along with the agency’s Acting General Counsel Reed Rubenstein and Office of Special Education and Rehabilitative Services Assistant Secretary Johnny Collett indicated that “nothing was off the table as part of the department’s rethink framework,” referring to a broad department agenda announced last fall to reconsider everything about how the agency administers special education.

“We are shocked that the department even considered pursuing this course,” read a joint statement from the coalition involved in the meeting, which included representatives of 11 advocacy groups as well as nine former government special education officials who served under Presidents Bill Clinton, George W. Bush, Ronald Reagan and Barack Obama.

State News:
New York - Why New York Says Parents Weren't Told of Incidents at Group Homes
By Chad Arnold, The Democrat & Chronicle, July 23, 2019
The state's Office of Mental Health failed to properly notify parents of incidents of abuse at several facilities despite a law requiring timely notifications, according to a new audit from the state's Comptroller's Office.

New York adopted "Jonathan's Law" in 2007 to expand the access to information regarding allegations of neglect and physical, sexual and psychological abuse at state-operated or licensed facilities to parents, guardians and other qualified persons.

The law was named after Jonathan Carey, a 13-year-old non-verbal and developmentally disabled child from the Albany area who died while in state care in 2007. His parents made several attempts to obtain information regarding several injuries he sustained during his time at the facility to no avail.
A review of 210 incidents across eight facilities between April 2015 and Jan. 9, 2018, found 42 incidents with no evidence to support a telephone communication was ever made within the required 24-hour window, the audit from Comptroller Thomas DiNapoli found.

Some facilities also failed to provide requested information to a qualified person within the required timeframe, the audit said. 

“Vulnerable patients are at greater risk when their parents and family members are kept in the dark,” Thomas DiNapoli, the state's comptroller, said in a statement. "State officials must do more to ensure facilities are meeting requirements.”
Requirements under Jonathan's Law

Jonathan's Law requires facilities to provide a telephone communication to a qualified person within 24 hours of a reported incident.

Facilities are also required to provide an full incident report within 10 days should one be requested and offer to hold a meeting with a child's guardian to further discuss the incident.

From there, the facility has 10 days to provide an Actions Taken Report, a written report showing what steps the facility has taken in the wake of the incident.

Qualified persons may also request any documents pertaining to an incident and should receive them within 21 days after an investigation has been concluded, according to the law.

The law was spurred by a series of reports of abuse at the state's group homes and prompted New York to create Justice Center for the Protection of People With Special Needs to oversee the facilities.

See related article on NY State's Justice Center, and comments by Michael Carey below
New York - Motion to Dismiss Rape Charges Granted
Albany News Channel 10, July 11, 2019
A motion to dismiss rape charges against a counselor who works with young boys dealing with drug addiction has been granted.

The Justice Center was established as a state agency by Governor Andrew Cuomo to investigate abuses against children and people with special needs.

The agency has a special prosecutor, but in a ruling on Thursday by the Supreme Court Appellate Division, it has no authority to prosecute criminal cases. The state requires criminal prosecutors be elected into the position, but the special prosecutors in the Justice Center are appointed.

According to court documents, only the district attorney or the attorney general has that authority.

“They were founded with this idea that they would be a specialized prosecutor or responding to what was a very important need in the State of New
York, a lot of abuse and neglect claims,” Attorney Lee Kindlon said.

“But what was more concerning to defense attorneys and constitutional scholars was [that] you can’t just create state agencies and then they have their own prosecutors because, before you know it, the DMV, the environmental people, will say, now wait a minute. Now we get prosecutors.”

This is not the first time charges were dropped in a sex abuse case being prosecuted by the Justice Center.

Below are excerpted comments from Michael Carey, father of Jonathan Carey and author of Jonathan's Law, in relation to the above ruling concerning the lack of jurisdiction for the NY State Justice Center for the Protection of People With Special Needs, regarding crimes of abuse and neglect:

The NYS Constitution is very clear in Section 13 of Article 13 that county elected prosecutors must prosecute all crimes that occur within their county and if they fail to do so they can be removed. The Supreme Court, Appellate Division has deemed that the Justice Center does not have “concurrent authority with district attorneys” meaning practically every case, if not all, that they have touched can be thrown out. Three rape cases have been tossed to date because of the simple defense that the Justice Center has no authority. They never had the authority this entity was set up to cover-up.

The Justice Center under the Cuomo administration has been operating illegally and unconstitutionally for over six years. Staggering numbers of reported crimes committed against people with disabilities have been purposely kept from county elected district attorneys allowing most assault crimes to never be prosecuted, ultimately protecting dangerous predators.

The Justice Center’s illegal actions of obstructing justice and criminal conspiracy all hinged on keeping these crimes from the 911 call centers so local police cannot respond. [The Justice Center's cases were] kept from criminal investigations with proper evidence collection and retention and kept from county elected prosecutors that have the constitutional authority and responsibility to prosecute all crimes within their county. DA’s cannot prosecute crimes that they were never notified of or that were purposefully kept from local authorities and from criminal investigations.

One of the main motives for this cover-up scandal is to protect the state and its sub-contracted private providers from damaging lawsuits. In light of the Child Victims Act the state and private organizations are accountable for their actions and the crimes occurring within their facilities and group homes. Former AG Schneiderman acknowledged that the Justice Center was operating unconstitutionally, yet failed to take immediate emergency actions to stop the Justice Center from the ongoing obstruction of justice and the systemic protection of predators.

[T]he Justice Center must be shut down and the individuals responsible for protecting predators must be held accountable.

Michael Carey - Civil Rights & Disability Rights Advocate

Virginia - State Responds to CVTC Feeding Lawsuit, Claims Resident Can’t Ask for Enforcement of Settlement
By Rachel Mahoney, The News & Advance, July 20, 2019
Virginia officials have responded to a lawsuit over the transfer and feeding of a Central Virginia Training Center resident, saying she can’t ask for the court’s enforcement of a settlement agreement requiring her to be moved from the center.

The Rutherford Institute is pursuing a lawsuit against Gov. Ralph Northam, state health officials and CVTC Director Dick Roberts on behalf of Alisha Gupta. Gupta has a disability that prohibits her from caring for herself and has lived at CVTC for 17 years.

She’s among the last of CVTC’s residents who are in the process of transferring to other living arrangements, as per a 2012 settlement agreement between the U.S. Department of Justice and the state which requires them to be moved to homes that are closer to the community.

Gupta’s parents agreed to have her transferred to Hiram Davis Medical Center in Petersburg, where other CVTC residents with severe disabilities have ended up. According to numbers from the Virginia Department of Behavioral Health and Developmental Services, a total of 26 residents from training centers statewide have moved to Hiram Davis since October 2011.

Gupta’s father, Atul Gupta, initially filed the suit in April. In his complaint, he said staff at the centers said they’d be changing his daughter’s diet from a “natural food diet” CVTC had been feeding her without mechanical assistance to a “synthetic formula” given to her using a feeding machine.
The proposed new diet, the lawsuit claims, goes against Alisha Gupta’s Jain Hindu beliefs, which her parents have raised her on. Those beliefs include traditions of “a strict lacto-vegetarian [diet]” and consumption of food by hand, not machine, according to an amended complaint from the Guptas.

The complaint is broken into four counts. One asks for “enforcement of the settlement agreement” that the state reached with the U.S. Department of Justice.

The suit claims Alisha Gupta’s proposed diet change and transfer not only violate her religious beliefs, they “fail to conform to the standards set forth in the said Settlement Agreement.”

In its response, filed by an assistant attorney with the Virginia Attorney General’s Office earlier this month, the state cites the settlement agreement that “precludes any person or entity [from] assert[ing] any claim or right as a beneficiary or protected class under this Settlement Agreement in any separate action.”

Virginia - Virginia Behavioral Technician Guilty of Raping, Impregnating 2 Clients With Mental Disabilities
By Julie Carey and Andrea Swalec, NBC 4 Washington, July 23, 2019
A man whose job was to help adults with disabilities has pleaded guilty to raping two clients in Fairfax County, Virginia, leading to pregnancies for both women.

Bernard Betts-King, 60, pleaded guilty Tuesday to the attacks. 

In one case, the woman was unable to say who assaulted her. In the second case, the woman identified Betts-King as her attacker.

Prosecutors said that when Betts-King was confronted with the evidence, he claimed the women "came on to him." Attorneys said both women had the intellectual ability of children and neither had been taught about sex.
DNA tests conducted on the second victim's baby show a 99 percent chance that Betts-King is the father, court documents say. Fairfax County police believe he fathered the child of the first victim as well.

Both women, who police did not identify, were clients of MLVE Community Center in Springfield, Virginia. The organization provides therapeutic and work opportunities to disabled adults.

Betts-King worked with both women in his position as a behavioral technician, prosecutors said.

Washington, D. C. - Backlash Intensifies over D.C. Plan to End Disabilities Services Contract
By Peter Jamison, The Washington Post, July 25, 2019
Backlash intensified this week to the D.C. government’s effort to end a 14-year-old partnership with Georgetown University that provides a range of medical and social services for people with disabilities.

The District’s Department on Disability Services has announced that it will end its contract with Georgetown in August, moving the services currently offered by the university in-house or replacing them through another contractor.

City officials say the move has been in the works for years and will maintain the same services now offered while shifting some costs to the federal government.

But the decision has sowed panic among advocates and at least some disabled District residents, who say the city is squandering the relationships and expertise that Georgetown has built over more than a decade. After hearing those concerns at a well-attended hearing this week, D.C. Council member Brianne K. Nadeau (D-Ward 1) said she will ask Mayor Muriel E. Bowser (D) to extend the contract to allow for a smoother transition.

It is a resonant issue in Washington, where people with intellectual and developmental disabilities have endured a long history of neglect and mistreatment, first at the notorious Forest Haven asylum and then at dangerously mismanaged group homes.
It was only two years ago that the District was released from federal oversight as part a decades-old class-action lawsuit brought over substandard treatment of disabled residents.

Georgetown University, through a health initiative at its Center for Excellence in Developmental Disabilities, was a key player in the improvements that ultimately ended that litigation. A team of medical professionals and social workers at the university aids disabled residents through a range of supports, such as helping hospital patients obtain the care and discharge services they need or offering guidance for new parents.

University officials said that they work annually with more than 800 residents with intellectual or developmental disabilities. Ricardo Thornton, who was committed as a child to Forest Haven and met his wife at the facility before it closed, said Georgetown provided vital coaching in parenting skills he never learned while institutionalized.

“People like me, who have disabilities, who needed guidance and needed training on how to raise my son — they gave me tools that would help them,” said Thornton, a 60-year-old District resident. “There’s a lot of families that depend on Georgetown for that kind of outreach.”

VOR Bill Watch:

The good news this week is that the Autism Cares Act passed the House and is headed for the Senate. The bill will renew funding for programs for people with autism, allocating $ 1.8 Billion.

The bad news is that the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019, which contains a $1.992 Billion reathorization of Money Follows the Person, passed the House by voice vote, passed the Senate by voice vote with a recommendation, and is headed back to the House. This bill will likely pass and head to the President for signature.


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. 3253 & S ??? - Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 - This bill would authorize nearly two billion dollars over four years for the Money Follows the Person Demonstration Program.

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. Both issues deserve clean, stand-alone bills.
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