January 18, 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

Introducing the National Council on Severe Autism
A new organization has entered the disability advocacy arena. The National Council on Severe Autism announced their formation last week. Many VOR members are already familiar with several of the advocates who make up this new group.

Many of NCSA's policies align with those of VOR. We are delighted to see the emergence of this new voice, and look forward to working with them to protect our vulnerable family members.
NCSA's Board of Directors is comprised of President Jill Escher (Autism Society of San Francisco), Vice President Feda Almaliti (Mental Health & Autism Insurance Project), Secretary Ami Lutz (EASI Foundation, Contrubutor to Psychology Today), Treasurer Alison Singer (Autism Science Foundation).

Founding members include Lisa Parles, Judith Ursitti (Autism Speaks), Frank Campagna (aka the “Autism Daddy”), Gloria Satriale and Matthew Siegel.

For more information:

Thank You!

To all who joined, renewed, gave gift memberships, and donated to VOR during our Fall/Winter campaign, we would like to express our gratitude for your generosity and your faith in our mission.

Your support helps improve the lives of thousands of individuals with
Intellectual and Developmental Disabilities.

National News:
Note: Last Friday, Politico reported news of a plan by President Trump to bypass Congress' 2017 decision on health care and encourage states to initiate block grants in their application of Medicaid. In consideration of the fact that this has been a hot-button issue in this country and among VOR members, we think the following article shows the least bias in reporting. Links to the original Politico article and further perspectives appear at the end of this piece.
Report Revives Potential for Massive Medicaid Cuts Through Block Grants By Alex Spanko, Skilled Nursing News, January 15, 2019

A plan to fundamentally change the way the federal government funds Medicaid — which could lead to hundreds of billions in cuts — may be back on the table after seemingly dying two years ago. The Trump administration is currently mulling ways to convert Medicaid to a block-grant system, Politico reported late last week, reviving a fight that caused a serious backlash from skilled nursing and other long-term health care providers over the summer of 2017.

Three sources told Politico that officials are currently working to devise guidelines for a switch to block grants, which the political news site said would achieve “a longstanding conservative dream” of reducing overall Medicaid outlays.

Unlike the purely federal Medicare program, Medicaid functions as a hybrid in which states receive money from Washington but have more leeway over how their individual programs are run. Under a block-grant model, states would see a set amount of Medicaid funding per year — a serious contrast from the current model, in which state-level Medicaid programs receive open-ended reimbursements based on actual care needs.

If this sounds familiar, it’s because Congressional Republicans attempted to institute such a change during a legislative fight over the Affordable Care Act (ACA) two years ago. A proposal to convert states either to block grants or per-capita caps — set reimbursement amounts for each Medicaid recipient — would have slashed Medicaid funding by upwards of $770 billion.

This set off loud rebuttals from the American Health Care Association (AHCA) and other provider groups. Despite public perception of Medicaid as a social safety net program for low-income adults, the benefit actually forms the bedrock of most nursing homes’ financial stability, covering 62% of all residents according to 2017 statistics from the Kaiser Family Foundation.

While the ACA reform eventually died amid a public backlash, AHCA executive vice president of government relations Clifton Porter last fall classified 2017 as the toughest year of lobbying the trade group had ever experienced, and emphasized the dire nature of plans to cut Medicaid.
“We came pretty close to have $800 billion sucked out of the Medicaid program. I don’t care how you cut it, how you package it … at the end of the day, there would have been problems,” Porter said at AHCA’s annual convention in San Diego last October.

A spokesperson for AHCA reiterated that sentiment this week.
“Medicaid benefits for long term care are already insufficient in most states. Under block grants, some people who receive long term care may have their Medicaid benefits cut or lose them entirely,” the spokesperson said. “Vulnerable groups will be forced to compete for federal Medicaid dollars as well as state Medicaid matching dollars.”

Girls On The Spectrum Often Go Unnoticed
By Rita Giordano, The Philadelphia Inquirer, via Disability Scoop, January 15, 2019

Nichole Lowther has heard the word her whole life.

Bright, even charming, she nonetheless never felt comfortable in groups or making small talk. A hard worker, she had a tough time finding or keeping a steady job. Could it have been her unvarying wardrobe, her lack of eye contact, her encyclopedic knowledge of “Star Trek?” Then there were the times in public when a loved one would pull her aside and plead, “Be normal.”

But a few years ago, when her son Matthew, now 6, wasn’t meeting developmental milestones despite early intervention services, Lowther took him to a specialist. The doctor noted certain telltale behaviors of autism — walking on his tiptoes, rocking, wiggling fingers near his eyes.

“I said those weren’t autistic behaviors, because I do them,” Lowther, of Burlington County, recalled telling the doctor. “She said, ‘Have you ever been tested?'”

So, at age 42, Lowther was tested. Textbook autism, she was told.

“It was such a relief,” Lowther said. “I was like, ‘OK. Now a whole lot of my life makes sense.'”
For women and girls living on the autism spectrum, diagnosis too often comes late, if at all. Though boys with autism spectrum disorder (ASD) — the country’s fastest-growing developmental disability — are estimated to outnumber girls by 4-1, experts now say that may be because many females are overlooked, their symptoms dismissed or misread.

“If girls are chronically diagnosed later than boys, they’re missing that most valuable treatment time,” said Diana L. Robins, head of the A.J. Drexel Autism Institute’s Research Program in Early Detection and Intervention. Research has shown that children who get treatment before age 2 or 3 show the most improvement.

But for many females, diagnosis often doesn’t come until they are well into adulthood. That can mean decades of social rejection, depression, anxiety and unrelenting confusion.

Feds Weigh Changes To Work Rules For People With Disabilities
By Michelle Diament, Disability Scoop, Jan. 14, 2019
The Trump administration is planning to rethink existing regulations that radically altered the transition from school to work for people with disabilities. The U.S. Department of Education is expected to issue a proposal this month changing how the federal Workforce Innovation and Opportunity Act is implemented.

The 2014 law requires that individuals with disabilities age 24 and younger pursue competitive integrated employment before they can work in jobs paying less than minimum wage. Those already working for what’s known as subminimum wage can continue to do so, but must receive regular career counseling and information about training opportunities.

Regulations spelling out the rules were finalized and took effect under the Obama administration. However, last year the Education Department signaled that it would issue a notice of proposed rulemaking in September 2018 to “amend” the regulations. Nothing materialized at that time, but a fall agenda for the agency indicated that the new proposal is now slated for January.

Qualms with the regulations emerged in a 2017 letter from a group of Republican members of Congress who worried that the rules were leading state vocational rehabilitation agencies to no longer refer individuals with disabilities to the federal AbilityOne Program which provides employment opportunities for those who are blind or have significant disabilities, typically in segregated settings.
The letter indicated that the current regulations are limiting “the ability of individuals with disabilities to find and keep employment.”

Kate McSweeny, vice president of government affairs and general counsel for ACCSES , a Washington, D.C. organization that represents disability service providers across the country, said her group believes that the current regulations are too narrow.

Since the rules took effect, McSweeny said that about 20 states stopped referring people with disabilities to AbilityOne jobs, many of which pay at least minimum wage and offer full benefits. At issue is what’s considered an integrated setting. For example, she noted that some vocational rehabilitation agencies may not be referring those with disabilities to a building maintenance position in a courthouse because the crew is exclusively comprised of workers with disabilities even though the work is conducted in a public setting and might offer interactions with judges, lawyers and others.

“We just support keeping a full array of options,” McSweeny said. “We don’t want to see options taken away.”



Tell Congress to Support AbilityOne Contractors
At this moment, thousands of people with disabilities are subject to stop work orders because of the partial government shutdown, and they may never be reimbursed for the lost time. You can help fix that. Stop what you are doing and take one minute to urge Congress to fully open the federal government and to ensure contract employees, including people with disabilities working through the AbilityOne Program, are given the same consideration for back pay as their federal employee counterparts. The numbers of people affected are growing. A worker without a paycheck may not have the means to pay bills or pay rent or feed their families. Please stand with them. Go to the  ACCSES Action Center  right now and tell Congress to act.

Education Department Initiative to Combat ‘Inappropriate’ Restraint, Seclusion of Students With Disabilities
By Mark Keierleber, The 74, January 17, 2019
Several months after a Kentucky sheriff’s office reached a court settlement with two students with disabilities who had been handcuffed above the elbows at school, the U.S. Department of Education announced on Thursday an initiative to address the “possible inappropriate use” of restraint and seclusion in schools.

That initiative will include compliance reviews by the department’s Office for Civil Rights to explore whether district seclusion and restraint practices violate federal law. Those reviews, according to a department media release, will focus on whether the use of seclusion and restraint affects schools’ obligation to provide special-needs students with a “free appropriate public education” as required by the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. The Office for Civil Rights will work with districts found to be out of compliance to address the issues, the department said.

“The only way to ensure the success of all children with disabilities is to meet the needs of each child with a disability,” Education Secretary Betsy DeVos said in the release. “This initiative furthers that important mission.”

Seclusion refers to the practice of confining a student alone in a room that he or she is not allowed to leave. Restraint refers to the practice of restricting a student from moving parts of the body, such as with handcuffs.

Beyond compliance reviews, the initiative seeks to provide technical assistance to school districts on federal disability rights laws and their relationship to seclusion and restraint. The department will also work with districts to ensure they’re reporting accurate data on their use of such practices. The Office of Special Education and Rehabilitative Services will provide districts with resources on how to implement student interventions that reduce the “reliance on less effective and potentially dangerous practices.”

During the 2015-16 school year, students with disabilities represented about 12 percent of the total student population but accounted for 71 percent of children subjected to restraint and 66 percent of those who were secluded, according to the most recent federal data. That school year, nearly 86,000 children were restrained and more than 36,000 were secluded. Black students are disproportionately affected by the practices. Though black children account for 15 percent of America’s K-12 student population, they represented 23 percent of students secluded and 27 percent of those restrained during the 2015-16 school year.

However, disability-rights advocates have long contended that schools chronically underreport seclusion and restraint incidents.

Eye On Congress:
Despite the ongoing government shutdown, the 116th Congress has been working on issues affecting VOR families. Unfortunately, most of their work has been aimed at further weakening the presence of ICFs in a full continuum of care and override family choice for residential services.

H.R. 259 - Money Follows the Person Renewal Passes House, Senate, Headed to the President for Signature

H.R. 259, the Medicaid Extenders Act of 2019, passed the House and Senate by a voice vote with no amendments this week and is headed to the White House for the President's signature. The bill includes a $112 million renewal of Money Follows the Person (MFP) for FY 2019. VOR expects further bills to come to extend the MFP program soon.

VOR opposes MFP as it has been used by many states to move individuals with I/DD out of their homes in Intermediate Care Facilities and into HCBS waiver settings against the wishes of their parents and guardians, often with tragic consequences.


S-119, HR 555 - Schumer and Sensenbrenner Re-introduce Disability Integration Act

Senator Chuck Schumer (D-NY) and Representative Jim Sensenbrenner (R-WI) have simultaneously introduced bills to the 116th congress, both entitied, " To prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes."

While text of the new bills has not yet been posted online, it is expected to be a reiteration of the Disability Integration Act that each legislator sponsored in their chamber in the 116th Congress. VOR has opposed the many forms that this bill has taken for the last two decades, as the underlying assumption of the bill reads as a gross misrepresentation of the Supreme Court's decision in Olmstead.

The Winter 2018 Edition of the VOR Voice
is available in full color on our website at:

State News:
Virginia - Opinion: Stand Up For the Residents of CVTC
The News & Advance, January 15 2019
In August 2008, the U.S. Justice Department under Attorney General Michael Mukasey began an investigation of the Central Virginia Training Center in Madison Heights. The probe was launched under the Civil Rights of Institutionalized Persons Act to ascertain whether the commonwealth was doing all it could to provide community-based care for the most severely intellectually and physically disabled Virginians.

That investigation soon expanded to include the entire state system of training centers that were home to thousands of severely disabled individuals. In February 2011, the Justice Department informed Virginia of the results of its investigation, concluding the commonwealth was not doing enough to promote community-based, group home care for these persons. A month later, settlement talks between the parties began.

In January 2012, the administration of then-Gov. Bob McDonnell reached a settlement with the Justice Department, agreeing to transition its care system from one of institution-based care to small group homes integrated into the greater community.

That became the basis for Virginia’s fateful decision to close all but one of the state’s residential institutions. The plan was to use proceeds from the sale of the sites and savings from the closed facilities to fund additional Medicaid waivers to pay for the community-based care. CVTC would be the last to close in 2020.

Today, there are just 60 or so individuals still living at CVTC, along with about 300 staff employed to care for them. These individuals are the most profoundly challenged — physically, developmentally and intellectually — and require highly specialized care around-the-clock.
After Tyler Bryant, a lifelong resident of CVTC was — transferred against his family’s wishes — to the Petersburg facility in January 2017, he soon developed medical complications and died.

Sen. Mark Peake, R-Lynchburg, has stepped in as an advocate for the families and their loved ones. He has reintroduced legislation tabled in the 2018 General Assembly session that would keep CVTC open as a care facility for these physically fragile individuals. Under his legislation, the definition of a training center would change, with the result being that CVTC would remain open and become the state’s main facility for the highly specialized care these individuals require.

Senate Bill 1071 and 1072 are currently on the docket of the Senate Committee on Rehabilitation and Social Services. Peake knows the bills face an uphill fight, but it’s a battle worth waging.

“We have to look out for the families,” he told The News & Advance. “I still think there’s a certain population of people who cannot safely reside in group homes.”

We concur and hope the Assembly and Gov. Ralph Northam will join Peake in standing up for these most vulnerable of their fellow Virginians.

Illinois - Group Home Closures and Other Chaos for Disabled Adults
By Leslie Renken, GateHouse Media Illinois, Jan 13, 2019
About two weeks before the corporate caregivers of 45 developmentally disabled adults announced they were leaving Peoria, Jean Henning started receiving emergency calls from her 24-year-old daughter Kaitlyn, who was living in a group home in Peoria.

“Over Labor Day weekend all of a sudden we’re getting panic calls from Kaitlyn,” said Henning, who lives in Rochelle. “She said she wasn’t getting her medications, and she knows the voices, the hallucinations will start if she doesn’t get her meds.”

Kaitlyn’s grandmother, who is her guardian, was told that Kaitlyn’s medications were lost when the home’s coordinator left. Kaitlyn has autism and schizophrenia. She can’t miss a dose of her medication without risking a psychotic event, her mother said. “She’s on several psychotropic drugs — there’s only a 15 minute window that she can be without them, as prescribed by her psychiatrist,” Henning said.

When the situation continued into the next day, Henning and her mother made the 100-plus miles trip from Rochelle to Peoria.
“We were going take her to the emergency room,” said Henning.

By the time the family arrived, Kaitlyn had been medicated and she continued to receive her medicines after the family left, though the timing was not as precise as Kaitlyn’s psychiatrist had ordered, Henning said.

About two weeks later, Community Alternatives Illinois, formerly known as ResCare and owned by the Kentucky-based BrightSpring Health Services, announced the impending closure of its Peoria and Pekin facilities, including the home Kaitlyn lived in.
The announcement disrupted the lives of 36 people living in group homes, and nine people living with host families in central Illinois, according to information GateHouse Media Illinois received through a Freedom of Information request to the Illinois Department of Human Services, which regulates group homes in Illinois.

Illinois - How a South Side Dental Clinic is Serving Chicago’s Most Vulnerable Patients
By Cindy Dampier, Chicago Tribune, January 16, 2019
In a sunlit room down a white hallway in St. Bernard Hospital on Chicago’s South Side, Francine and Rodney Mitchell are waiting. Their teenage son, Andy, lies on an operating table not far away, asleep amid the beeps of monitors, the hiss and thump of an oxygen machine, and the unmistakable, high-pitched whir of a dental drill.

Andy is intellectually and physically disabled, not easily able to communicate or control his own body, and though he has survived and even thrived under the care of two dedicated parents, routine dental care has been difficult to obtain.

Like many people with special needs in the U.S., Andy has suffered with untreated tooth decay. He has been in pain and now has cavities in 23 teeth, bone loss around his front teeth, and eight teeth that will need to be extracted before his treatment today is over. “He can’t really tell you when something hurts,” says his father. “He’ll just ball up and cry.”

The Mitchells knew that Andy’s teeth needed care but struggled to find dentists who were willing or able to help. “We tried to take him to a neighborhood clinic,” Rodney says, “but they didn’t want to touch him. A lot of dentists won’t touch special-needs people.” Rodney also took Andy, in his wheelchair, to an open clinic day at the University of Illinois at Chicago, one of the few places that is known as a treatment option for patients with special needs. They left home at 6 a.m., but when they arrived, he says, the line was like Disney World — hourslong. They gave up and went back home.

Finally, through staff at La Rabida Children’s Hospital, the Mitchells heard about a dental clinic at St. Bernard.

‘There is nowhere else for them to go’
Monique Davis, the office manager for the dental clinic, steps into the room, and the Mitchells eye her somewhat warily. Davis beams – it’s just what she does. She spends her days bustling through the hospital hallways, keeping the clinic on track, but her main job, as she sees it, is to reassure and
make comfortable people whose everyday struggle has honed their tenacity to a sharp edge.

Her mission is clear: She is here to help. “We specialize in special-needs patients,” she tells the Mitchells. “There is nowhere else for them to go, so even if insurance becomes a problem, we will work with you. We are just a small community hospital, but we see everybody here. We do everything.” The Mitchells are quiet, but they nod, ask a couple of questions, relax a bit. Davis smiles her huge smile again. “Don’t worry,” she says. “We’re taking care of him now.”

A year and a half ago, Dr. Mary Joyce Gomez gave up a comfortable private practice in the Loop to become dental director at St. Bernard because, she says, she realized she had found a place where she could finally realize that dream.

The St. Bernard dental clinic, founded in 2007, treats a patient population that is largely insured by Medicaid. Under Gomez’s leadership, the clinic expanded its mission. Though services were available for children with special needs, she added care for adults with special needs — a group that finds dental care extremely hard to access.

Though there is little data on patients with special needs, specifically, “anecdotally,” says Koppelman, “we have seen that the issue for special-needs populations is particularly acute.” Patients with special needs are often unable to sit in a dental chair for routine care or longer procedures, and thus are more apt to need general anesthesia, which few dental offices can provide. In addition, special-needs populations may have a greater barrier to transportation and other basic concerns involved in getting to a dentist. Among the subset of dentists who treat patients with special needs, many treat only children, meaning that even those patients who can get care may age out of access to that service.

Arizona - Follow up: Regulators Advised Pulling Patients from Hacienda HealthCare During 2016 Fraud Investigation
By Robert Anglen and Stephanie Innes, Arizona Republic, January 12, 2019
The Phoenix facility where a comatose patient was raped and gave birth faced a criminal investigation two years ago over allegations it billed the state more than $4 million in bogus charges.

Regulators with Arizona's social-welfare agency wanted to remove developmentally disabled patients from Hacienda HealthCare in 2016 and terminate contracts that allowed the facility to provide services for the state.

But the criminal case was dropped in 2017, and no charges were filed. The state's Medicaid agency later sought an order to force Hacienda to turn over financial records – a battle that continues in the courts.

The Arizona Attorney General's Office accused Hacienda's former chief executive officer in 2016 of refusing to turn over financial documents required by law even as he demanded the state pay higher fees for services.

Despite the court fight, state officials did not sever ties with Hacienda and continued placing patients at the facility. After the rape victim gave birth, they cut off new admissions.
Any action to cut state funding in 2016 would have stripped Hacienda of its key revenue stream. The non-profit facility gets more than $20 million annually in taxpayer funds for taking care of extremely ill people, many of whom are incapacitated and on ventilators.

Former DES Director Timothy Jeffries and chief law enforcement officer Charles Loftus, who were forced out by Ducey in 2016, say their investigation of Hacienda was clouded by politics and contributed to their ousters. Both have filed lawsuits against the state.

Jeffries said if the Ducey administration had followed through with his efforts to terminate Hacienda's state contracts and pursued criminal charges against Timmons, the rape never would have occurred.

“The heinous rape of a vulnerable and defenseless San Carlos Apache woman at Hacienda is absolutely disgusting and detestable," Jeffries said Friday. "Hacienda should have been terminated two years ago per my plan ... Hacienda should have been criminally investigated in 2016, vigorously prosecuted in 2017 and prudently terminated in 2017."

Florida - Lawsuit claims disabled woman was raped, impregnated at Pensacola adult care facility
By Annie Blanks, Pensacola News Journal, January 17, 2019
The family of a developmentally disabled woman is suing a Pensacola adult care facility after the nonverbal, immobile woman was allegedly raped and impregnated early last year. 

The 23-year-old woman suffers from "profound mental retardation" and has several developmental and intellectual disabilities to the point where she can't move her hands or fingers and has to be fed through a tube, according to a civil lawsuit filed Tuesday in Escambia County. 

She was being cared for at Pensacola Cluster, a 24-bed intermediate care facility for children and adults with developmental disabilities. 

The lawsuit notes that due to the woman's multiple disabilities, she "was and is totally and completely dependent upon and at the mercy of National Mentor staff." National Mentor is the company that operates Florida Mentor which, in turn, operates Pensacola Cluster. 

A person who answered the phone at Pensacola Cluster on Wednesday afternoon said that the organization had no comment on the lawsuit.
The lawsuit alleges that in January 2018, the woman was attending Westgate School on weekdays, a school for children and young adults with intellectual and physical disabilities.

Westgate employees observed behavioral changes in the woman and noticed bruising on her hip when changing her diaper, according to the complaint. 

Westgate staff alerted the woman's caregivers at Pensacola Cluster several times throughout the month of January, but the caregivers declined to seek medical treatment for the woman, investigate the cause of the injuries or notify the Florida Adult Abuse Hotline, according to the complaint.

According to a separate Agency for Health Care Administration report that was not part of the initial complaint, the Westgate staffers alerted the Department of Children and Families to the suspected abuse. 

In February, a doctor at the Pensacola Cluster facility ordered an X-ray of the woman's hip and determined it was broken, according to the lawsuit. The next day, she was transported to Baptist Hospital for hip surgery. During a routine pre-surgical pregnancy screening, doctors learned the woman was pregnant.

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]
The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Plan now!
This will be an important year for I/DD advocacy
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