December 14, 2018
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
This week's newsletter is long, but I urge you to read it through. It contains a naitional Action Alert and one specific to residents of New York State, a notice from the Federal Register for SSI Beneficiaries, a link to video presentations from the Together For Choice conference and important features from California, Maryland, Arkansas, Washington, Oregon, and Texas.

We will start with an update from the Ball v. Kasich case in Ohio, after this brief word from our sponsor.
Fundraising, 2018

Across the country, non-profit organizations have reported that donations are low this year.
We are sorry to say that donations to VOR this during our Winter campaign have been down, as well.

VOR receives 95% of our support from families and ICF Family Groups.
Please do what you can this year, to help us to continue to help you in the year to come.

Thank you!

Is investing in the future of their loved ones by offering to
match up to $10,000 in donations to VOR during our
2019 Winter Fundraising Campaign!

Please help us take advantage of their generous offer!

*Formerly the Woodbridge Developmental Center Parents Association

National News:
House Passes Money Follows the Person Renewal

In a last minute attempt to renew Money Follows the Person (MFP), Representatives in the House repackaged the ACES-Kids Act, a benign bill that would increase funding for children with medically complex conditions, and hid MFP and other less popular provisions under a new name, The IMPROVE Act (HR 7217). The bill summary reads:

"To amend title XIX of the Social Security Act to provide States with the option of providing coordinated care for children with complex medical conditions through a health home, and for other purposes . "

The bill has now moved to the Senate. We suspect that it is being put into place so that Senators may sneak this in during the final sessions of the 115th Congress, which will take place next week. VOR asks all of our members to fill out the form below to:

VOR opposes Money Follows the Person because it has been used to pressure and coerce individuals and their guardians to leave long-established ICF homes and enter the waiver system. This reduces the population at ICFs, many of which have been closed to new admissions. The diminishing of the population lowers the economy of scale that ICFs rely upon, and gives the one-size-fits-all advocates more reason to insist on closing the ICFs.
VOR asks your help in protecting a Full Continuum of Care and Family Choice.
Ohio - VOR Submits Amicus Brief Supporting Intervenors in Ball v. Kasich

VOR filed an Amicus ('friend of the court") Brief in the Ball v. Kasich class action in Ohio that seeks to wholly or in part remove funding from ICF care, and also attacks sheltered workshops and facility-based day programs.

The amicus was filed in support of intervening ICF guardians who filed crossclaims against the State and County Board defendants. Guardians' crossclaims outline how the State and County Boards of DD have hidden and denied the ICF entitlement to beneficiaries by not informing individuals and their families of their right to ICF care when they seek services.

For more information, please click here
To read the Amicus Brief, please click here
Ohio -
Guardians filed a response on Friday December 7th to State and County Board Defendants Motion to Dismiss crossclaims filed by Guardians in the Ball v. Kasich class action. 

Also on December 7th, Chief Judge Edmund Sargus issued an opinion rejecting Disability RIghts Ohios  third  attempt to certify a broad class. Judge Sargus wrote, "Plaintiffs arguments are not well taken." Arguably at this point, the case is more about Guardians' (ICF) claims against the State than it is DRO's claims. DRO originally sought to bring a case on behalf of 27,800 people. Now, it has been whittled down to maybe 400. At most. But, Guardians argue the class is  NIL  as there are  under-subscribed  exit waivers available to all ICF residents who may choose to move to waiver services.

Guardians believe our crossclaims are important and eminently necessary. Guardians are fighting back and standing up for the right of DD Medicaid beneficiaries to be informed of and ultimately access ICF care. Guardians' write in their response,

  • To be clear at the outset, Guardians are all for expanding choice. But the ICF choice – the entitlement from which people can then "waive" must actually remain a viable choice.
  • The gist of Guardians' Claims is simple: Defendants have systematically thwarted and denied the ICF entitlement to eligible residents. As a result today, thousands of eligible Ohioans sit on "wait lists" for "waiver" services not knowing they have an immediate entitlement to an ICF bed. This happens by design – the Defendants' design – not by accident. And it is illegal, meaning it violates both federal and state law.
  • All should wonder and ask: why have ICF services decreased from 100% to less than 15% today as the choice for beneficiaries? Is it because the vast majority of eligible Ohioans reject the ICF option, or instead, because they are kept ignorant of it? The answer to that question requires discovery, not dismissal at the infancy of the case.
  • Olmstead, of course, was simply one application of the ADA. It did not speak directly to Guardians' claims, although Justice Kennedy forewarned against the perverse result that has resulted in subsequent years from the misinterpretation of the holding when he wrote:  "It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision." Fast forward twenty years and Justice Kennedy's prescient analysis leads us, sadly, to Guardians' claims today.

If you should wish to contribute to Guardians' legal defense,
State News:
New York - Reps. Zeldin, King, Stefanik, Reed Call For Federal Investigation of NYS Justice Center for the Protection of People with Special Needs
Long Island News & PR, Dec. 10, 2018
Today, Congressman Lee Zeldin (R, NY-1) was joined by Reps. Peter King (R, NY-2), Elise Stefanik (R, NY-21) and Tom Reed (R, NY-23) requesting that the Department of Justice investigate the New York State Justice Center for the Protection of People with Special Needs’ failure to protect individuals with disabilities and Medicaid recipients who have died under state care, including nine who died while in state care in Suffolk County since 2013. 

Dozens of allegations related to staff abuses, patient neglect, sexual assaults and even patient deaths have been reported over the last few years, yet the New York State Justice Center, which is authorized to investigate all reports of abuse and neglect, pursue administrative sanctions against staff found responsible for misconduct, and prosecute criminal offenses through its Special Prosecutor/Inspector General sharing jurisdiction with local district attorneys, has consistently failed to perform these responsibilities and continues to operate without any added oversight or scrutiny. Since its inception in 2013, the Center has failed to take meaningful steps to address systematic failures, and as such, it is critical the Department of Justice investigate.   
“Individuals with disabilities deserve full and equal protection under the law. However, in the State of New York, abuses have been ignored and swept under the rug due to the lack of action taken by the New York State Justice Center for the Protection of People with Special Needs,” said Congressman Lee Zeldin. “It is unacceptable that the State of New York continues to pocket billions of federal tax dollars to care for these patients while
neglecting to investigate suspicious deaths of patients that happen in their very facilities, and it is clear the State of New York refuses to hold itself accountable. It is critical that there is a thorough investigation to finally secure justice for individuals with disabilities who have died in state care as a result of criminal misconduct.”
President of the Jonathan Carey Foundation Michael Carey said, “The NYS Justice Center is ensuring that staggering numbers of sexual assault crimes and deaths of children and adults with disabilities are covered-up internally and never prosecuted. This corrupt agency is not protecting people with special needs, but instead obstructing justice by purposefully keeping most reported crimes from the local police and county district attorneys. Federal authorities must intervene swiftly to stop the criminal cover-ups and to end the wide-scale discrimination in which the disabled are denied their 14th Amendment right to ‘equal protection of laws.’ The Justice Center must be stopped, it is directly involved in a massive Medicaid fraud scheme by protecting dangerous facilities that are misappropriating massive amounts of federal tax dollars.”

New York State Residents Only:
New York - OPWDD Head Departing Cuomo Administration
Commissoner to Accept CEO job with Health Care Provider
By David Lombardo, Albany Times-Union, December 12, 2018
The head of the state's Office for People with Developmental Disabilities is leaving to run a health care provider that the agency oversaw, according to a person familiar with the matter.

Kerry Delaney, acting-commissioner of the department since 2014, is accepting the CEO position with Partners Health Plan, a not-for-profit managed care organization.

Officials with PHP did not respond to requests for comment.

Delaney previously served as general counsel before being appointed executive deputy commissioner of the agency. As head of OPWDD, she has headed a workforce of more than 22,000 direct-support professionals at an agency that provides services to more than 130,000 New Yorkers.

Delaney's acting commissioner title was never removed and she had therefore been able to receive a higher salary — $169,903 — than the statutory salary for the commissioner that is capped at $136,000.
New York's lobbying restrictions for former state employees prevent Delaney from appearing before her former department for the next two years, and bans her from interacting with the state on issues where she was directly involved.

In 2015, the state announced PHP was selected for a special demonstration program designed to coordinate care for people with developmental disabilities who were eligible for Medicaid and Medicare services. OPWDD was one of two state agencies involved in the partnership.

The initial demonstration program was part of a $6.1 million contract, but the follow up arrangement is worth more than $2 billion, according to records maintained by the state comptroller's office. The latter contract was signed by then-Medicaid Director Jason Helgerson.

California - Is CA Failing Its Most Vulnerable Adults?
Thousands of allegations of abuse and neglect have been made against the programs that care for people with developmental disabilities.
By Justine Calma, The Investigative Fund in partnership with FiveThirtyEight, Dec. 11, 2018
As she waited for her meal during a routine trip to a fast-food restaurant in Northern California’s Bay Area in July of last year, a woman with a developmental disability was lured away from her adult day care group. The staffer overseeing the group ordered food, but it wasn’t until after he ordered that he realized the woman was missing. C1, as she is identified in state investigation records, was found 30 minutes later in the back seat of a car with a registered sex offender who was later charged with sexual battery, according to the investigation report.

Patricia remembers that day. Her daughter, Jackie, attended the same program. When a staff member dropped off Jackie and told Patricia what had happened, Patricia called in a complaint to the agency that referred her to the day program. A few months later, Patricia made another complaint, this time for her own daughter, fearing that she too had experienced sexual abuse at the day care.
At Patricia’s request, FiveThirtyEight agreed not to use her and her daughter’s real names, both to protect Jackie’s privacy and because Patricia is afraid that coming forward might dissuade other programs from admitting Jackie.

Though they are anonymous, they are not alone.

A joint investigation by The Investigative Fund at The Nation Institute and FiveThirtyEight has found that from 2013 to 2017, there were at least 2,400 reported allegations of abuse and neglect in the more than 4,500 day programs like Jackie’s in California.

C1 and Jackie, who has Down syndrome, are among the people most vulnerable to sexual, physical and emotional abuse. People with intellectual disabilities are seven times more likely
to experience sexual assault than people without any disabilities, according to the U.S. Justice Department. A nationwide movement has increasingly held people in authority accountable for sexual abuse. But people with developmental disabilities — particularly those whose disabilities affect communication — encounter many additional hurdles before their cries of “me too” are heard.

As part of the Lanterman Act, California established 21 nonprofit regional centers connecting individuals with state-vetted services, including day programs. From 2008 to 2016, the number of people attending day programs grew from roughly 51,000 to nearly 70,000 people, according to the State Council on Developmental Disabilities. Clients must receive services through the regional centers to qualify for state and federal funding that will cover the cost of attending a day program.

Some of those clients and their family members have reported dangerous conditions. Hundreds of allegations of abuse and neglect at adult day programs are reported to the state each year.
There are a couple of ways that the state can be notified about an incident. One is by the day programs themselves. When there is suspected abuse or neglect at an adult day program, the program is required to submit a report to the regional center that verified the program meets state requirements and standards. The regional centers, in turn, pass along the reports to the California Department of Developmental Services, which contracts with the regional centers.

California - Protesters Demand Closure of School where Teen with Autism was Restrained, Later Died
By Sawsan Morrar, The Sacramento Bee,
December 10, 2018
A small group of former students, advocates and parents gathered in front of the California Department of Education Monday to demand the closure of a school where a teen with autism stopped breathing and later died after being restrained by staff.

Nearly a dozen protestors said they were demanding the immediate closure of Guiding Hands School in El Dorado Hills. Those gathered also said they believed state regulators didn’t do enough to prevent the death of Max Benson, 13, who died Nov. 29, a day after school staff put him in a face-down restraint for an extended period of time.

The California Department of Education found “sufficient evidence” in a preliminary inspection of Guiding Hands that the facility had violated multiple state rules governing how and when
Melissa Lasater, protesting on Monday, Dec. 10, 2018 against Guiding Hands School in El Dorado Hills, says she pulled her son out of the school on Friday after learning of Max Benson’s death. She describes how the school restrained its students.

physical restraints can be used on students, according to a letter sent to the school obtained The Sacramento Bee through a California Public Records Act request.

The DOE also ruled that unnecessary force had been used when implementing the restraint on Benson. Monday, DOE spokeswoman Cynthia Butler said it was conducting a further investigation.

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]
Maryland - Therapy Pool to Make a Splash in Local Community
By Brooke Butler, WMDT-47, December 12, 2018
For years, the Holly Center, a facility for the developmentally disabled, has faced financial struggles that have made it hard for them to keep certain services available.At one point, the Center was at risk of closing, but thanks to the State’s plan to “re-imagine” the Holly Center, it’s been able to stay open, and on Wednesday, one very important resource was reintroduced, the therapy pool.

Years ago, the therapy pool at the Holly Center encountered serious mechanical issues and was forced to close down as a result.

Dr. Katherine L. R. Jones, the Executive Director for Bay Area Center for Independent Living said, “It’s my understanding that it was due to financial constraints.”

The closure left the community devastated.
Dr. Jones said, “The pool was the heartbeat of the
Center, and it’s part of the heartbeat of our community.”

A little over a year ago, Maryland’s Department of Health and Mental Hygiene released plans to “re-imagine” the Holly Center. The day after that announcement, Dr. Jones decided to get involved by getting the pool reopened.

Dr. Jones said, “Bay Area CIL is very fortunate. The Rural Maryland Council actually granted us $60,000 towards the operations of this pool and the other money we’ve been raising as a Center over the past year and a half to keep it sustainable for the first year.”

Arkansas - Proposal to Cut Medicaid Payments to Assisted Living Facilities, Limit In-Home Help Advances
By Andy Davis, Arkansas Democrat-Gazette, December 11, 2018

A proposal to cut Medicaid payments to assisted living facilities and limit the help the program provides to elderly and disabled Arkansans in their homes cleared the Legislature's public health committees on Monday.

The changes, affecting the 8,800 Arkansans served by the ARChoices program and 1,200 Medicaid recipients in assisted living facilities, are part of the state's efforts to slow the growth of Medicaid spending by enough to save $835 million from the fiscal year that started July 1, 2017, through fiscal 2021.

The proposal would reduce the rates paid to assisted living facilities by nearly 22 percent and set annual, per-person caps on the in-home help provided to participants in the ARChoices program.
The House and Senate Public Health, Welfare and Labor committees' vote during a joint meeting came despite complaints from providers and beneficiaries that the changes will cause assisted living facilities to go out of business and more disabled residents to end up in nursing homes, where the cost of their care will be higher.

"I'm coming here today to beg you to have a heart and get rid of this [proposed] system, because I'm afraid it's not going to allow enough hours [of care] to meet the needs of the disabled community," said Ann Ledgerwood, reading a statement written by her son, Bradley, a 37-year-old ARChoices recipient who lives in Cash and has cerebral palsy.

ARChoices provides in-home help with daily living tasks and other needs for low-income people with disabilities severe enough to qualify for placement in a nursing home.

The Department of Human Services proposal would cap ArChoices benefits at $30,000 a year for recipients with the greatest needs -- those who require total or extensive assistance with moving from one place to another, eating and using the bathroom. Enrollees requiring assistance with only two of those activities would be eligible for up to $20,000 of care. The annual cost for those with less extensive needs would be capped at $5,000 each.

Arkansas - Suit is Filed in Medicaid Rule Change
By Andy Davis, Arkansas Democrat-Gazette, December 11, 2018

Hundreds of children and adults with developmental delays or disabilities will be left without transportation to their treatment programs on Jan. 1 under a new state policy, according to a lawsuit by treatment providers and families of several Medicaid recipients.

The lawsuit, filed late Friday in U.S. District Court in Little Rock, asks for an "emergency" order forcing the state Medicaid program to continue paying for recipients' transportation to the programs.

The lawsuit was filed by two provider associations and seven parents or guardians of participants in the Early Intervention Day Treatment and Adult Developmental Day Treatment programs. The programs were created July 1 to replace the Child Health Management Services program and the Developmental Day Treatment Clinic Services program, which had served adults and children.

Current rules allow Medicaid recipients to use services that provide nonemergency medical transporation to get to treatment centers if the facilities do not offer transportation, the lawsuit says.

After Jan. 1, recipients won't be able to use nonemergency medical transporation, according to the lawsuit. The Department of Human Services notified the centers on June 25 about the rule change, the plaintiffs wrote.

Recommented: Bill Choslovsky, Rodney Biggert, Melissa Harris, and if you have time, watch them all...
Washington - Woman Slams Mom Of Girl Needing Around-The-Clock Care
By Craig Sailor and Sean Robinson, The News Tribune, December 11, 2018
A Tacoma, Wash. woman has caused a social media firestorm after telling the mother of a child with a disability to put her girl “out of her misery.”

The controversy has drawn the attention of a celebrity, exposed women who share the same name to harassment and gotten the poster fired from one job.

The events unfolded Wednesday last week when Natalie Weaver of Cornelius, N.C., posted a Christmas photo of her family on Facebook. It included her 10-year-old daughter Sophia, who has facial, hand and feet deformities.

“We are grateful for another beautiful holiday season with Sophia,” Weaver wrote. “She continues to overcome & fight every daily challenge & difficulty she faces. She does it with so much sweetness, laughter and positivity. She is the definition of strength. I’m so proud of my girl.”
Weaver is a well-known advocate for children with disabilities. CNN profiled her in February. She is the founder of Sophia’s Voice, a nonprofit that helps people with chronic illnesses and disabilities get their medical needs met.

Sophia has Rett syndrome, a neurological disorder that affects one in 10,000 female births. It can affect brain function and other systems.
Kelsey Monahan Saum responded shortly after.

“If you TRULY loved her, you’d go the selfless & empathetic route by putting her out of her misery,” Saum wrote on Facebook.

In her message, Saum called Weaver a “Sick & twisted self righteous Christian.” She ended it with: “I hope you got sterilized so you can’t produce anymore defective offspring.”

In an interview with The News Tribune, Weaver said, “I was shocked at how vile and hateful these remarks were. Once I got home from picking my kids up from school, I went to the bathroom so my kids wouldn’t see me cry.”

Saum was contacted by The News Tribune and confirmed she had written the post but declined an interview.

Oregon - Federal Judge Grapples With How To Handle Defendant With Intellectual Disability
By Maxine Bernstein, The Oregonian, December 13, 2018
A federal judge didn’t equivocate Wednesday, declaring Lawrence Collins, a 40-year-old accused of federal tax fraud, unable to assist in his own defense because of his intellectual disability.
The next questions proved more difficult: What does the court do with Collins now?

Should he be committed to the federal Bureau of Prisons? Or should he be allowed to remain in the community to continue to receive local treatment, counseling and other support services?

The case is rare because of a combination of factors: Collins faces charges in a nonviolent crime. He’s already been out of custody for more than two years on pre-trial supervision. And, perhaps most unusual, Collins suffers from a cognitive disability that may not be treatable.

His case, as well as one involving a defendant in Arizona who has gone to the 9th U.S. Circuit Court of Appeals to challenge his commitment, highlight how the federal system deals with people who have intellectual disabilities.

What the courts decide in these cases could have implications for others with similar disabilities.
Collins can’t read or exercise independent decisions, an evaluator found. In the Arizona case, the defendant was found to have a very low IQ and unable to assist in his own defense.
At a hearing before U.S. District Judge Marco A. Hernandez in Portland, prosecutor Quinn Harrington argued that federal law governing a defendant’s competency is unambiguous and urged adherence to its strict language: Commit Collins to the custody of the attorney general.

He said the Bureau of Prisons would determine the most suitable facility for Collins’ care in a quick, efficient way. The law doesn’t require a “suitable facility’’ to be one close to the defendant’s home or his preferred location, the prosecutor said.

Removing Collins from the community with the hope of restoring his competency by locking him up in an out-of-state prison would not only harm him but discriminates against him and violates his constitutional rights, said Collins’ lawyer Amy Baggio and Emily Cooper, a lawyer for Disability Rights Oregon.

Baggio said Collins would be destined for one of seven maximum-security federal medical centers, located more than a thousand miles away either in North Carolina, Massachusetts, New York, Kentucky, Missouri or Forth Worth or Carswell, Texas.

Texas - Report: Thousands of Autistic Adults in Bexar County Go Without Services
By Lauren Caruba, San Antonio Express-News, December 12, 2018
It was not easy for Irma Canfield to get her son everything he needs.

Steven Canfield was born with Down syndrome, and by middle school he had also been diagnosed with severe autism. With great effort, Irma Canfield secured critical services for her son through Medicaid.

When Steven’s health deteriorated several years later, she was able to leave her job to take care of him while her husband, Jim, continued to work. Today, Canfield remains her son’s caregiver and his biggest advocate.

Despite the family’s challenges, in many ways Steven, now 30, is one of the lucky ones.

Thousands of other adults in Bexar County with autism spectrum disorder or intellectual and developmental disabilities likely lack access to services, according to a report released Wednesday.

The study is the first known attempt to quantify the number of adults in the San Antonio area who have autism or an intellectual or developmental
Tullos Wells, managing director of the Kronkosky Charitable Foundation, which co-commissioned the report on autism, said the findings, while incomplete, are “horrifying.” Thousands of adults in Bexar County with autism spectrum disorder or intellectual and developmental disabilities likely lack access to services

disability, according to the Kronkosky Charitable Foundation and the nonprofit Autism Lifeline Links. The foundation commissioned the study, which also tried to measure the services available.

It estimates 21,600 adults in Bexar County have autism or an IDD, and only 10 percent were receiving services as of last year through the Alamo Area Council of Governments, the local authority to assist adults with disabilities. The report focused on adults because their needs differ substantially from those of children and get less attention.

Notice from the Federal Register:

The Social Security Administration has announced that it will take comments on thei r Review and
Reassessment of the Social Security Administration’s (SSA) Representative Payee
Selection and Replacement Policies.
For more information, go to:

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

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VOR's 2019

June 8 - 12, 2019
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