September 28, 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
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.

Please Support H.R. 5658
Congressman Glenn Grothman (R-WI-06) recently introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act (H.R. 5658). This bill will restore common sense to the definition of competitive integrated employment and provide increased employment opportunities for people with disabilities. People with disabilities across the country have been denied placements in high-paying jobs because of the regulations that implement the Workforce Innovation and Opportunity Act (WIOA). ACCSES supports expanding opportunities and keeping a full array of options available. We were honored to work with Congressman Grothman and his staff to help draft this legislation. Go to the ACCSES Action Center and tell your Members of Congress to cosponsor and pass this important bill to increase employment opportunities for people with disabilities!

VOR Supports H.R. 6611
individuals with intellectual and developmental disabilities a medically underserved population. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.


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National News
Special Ed, Disability Programs Spared In Government Budget Deal
By Michelle Diament, Disability Scoop, September 28, 2018
The federal government will increase funding for special education and allocate money to address the needs of caregivers as part of a spending bill that’s expected to be signed by President Donald Trump.

The legislation to fund federal labor, education, health and defense programs for the government’s next fiscal year — which begins in October — passed the U.S. Senate last week and was approved by the House of Representatives on Wednesday.
Trump has indicated that he will sign the measure.

The move — along with passage of a separate short-term bill to fund other agencies — would avert a government shutdown when current funding expires at the close of September.

The Centers for Medicare and Medicaid Services:
Remarks by Administrator Seema Verma at the 2018 Medicaid Managed Care Summit

On Thursday, September 27th, CMS Administrator Seema Verma addressed the 2018 Medicaid Managed Care Summit in Washington, D.C. The summit included Medicaid leaders from states and health plans, as well as government leaders and policymakers.

CMS Medicare Compliance Proposal Addresses Emergency Preparedness
By Patrick Connole, Provider Magazine, September 26, 2018
A proposed rule by the Centers for Medicare & Medicaid Services (CMS) aims to reduce Medicare and Medicaid compliance requirements for health care facilities, which the Trump administration says will save all providers $1.12 billion annually.

Within this proposal, advocates for long term and post-acute care providers say are important provisions affecting emergency preparedness and hospice care for nursing facilities.Titled “Medicare and Medicaid Programs; Regulatory Provisions to Promote Program Efficiency, Transparency, and Burden Reduction,” the CMS plan includes two central issues of importance to skilled nursing facilities (SNFs) and intermediate care facilities for individuals with intellectual disabilities (ICF/IID).

Federal Proposal Would Limit Immigrants With Disabilities
By Michelle Diament, Disability Scoop, September 25, 2018
The Trump administration is proposing a new rule that would make it harder for immigrants with disabilities and their families to get a visa or obtain permanent residency in this country.
The U.S. Department of Homeland Security said over the weekend that it will officially propose a regulation to “ensure that those seeking to enter and remain in the United States either temporarily or permanently can support themselves financially and will not be reliant on public benefits.”
Under the plan, receiving certain public benefits — including Supplemental Security Income and most Medicaid benefits — above particular thresholds now or in the past would be a “heavily weighed negative factor,” the agency said.

State News
New Jersey - State Taps National Expert to Monitor Troubled Bellwether Homes
Lilo H. Stainton, NJ Spotlight, September 25, 2018
New Jersey has picked a nationally recognized leader to monitor the state’s largest provider of group homes and services for disabled individuals, Bellwether Behavioral Health, a facility that became the subject of news reports regarding abuse and neglect of its residents.

The Department of Human Services told NJ Spotlight that Cathy Ficker Terrill had been hired — at Bellwether’s expense — to review the private, for-profit company’s system of care, services, and supports — including staffing and accountability practices. She will stay on the job as long as needed, the DHS said.

Ficker Terrill has served on a presidential advisory committee and oversaw a federal court settlement with Oregon to ensure proper implementation of community services for individuals with disabilities.

In July, the DHS took the unusual step of suspending admissions at Bellwether facilities
here — dozens of group homes and day programs that serve nearly 500 people with developmental and intellectual disabilities, including some of the most clinically complex individuals in the state.

The department has also stepped up regular inspections of these sites and assigned a quality-management team of its own to oversee the work done by Bellwether, a Delaware-based company previously known as Advoserv. The state also ordered the organization to immediately address any gaps in care, including staffing shortages and safety lapses.

Georgia’s Separate and Unequal Special-Education System
By Rachel Aviv, The New Yorker, October 1 Issue
A statewide network of schools for disabled students has trapped black children in neglect and isolation.

Seth Murrell, a four-year-old boy with dreadlocks to his chin, moved with his family to Atlanta in the fall of 2015. On his first day at his new preschool, he cried the whole morning. He wouldn’t sit still in his chair. He’d pop up and snatch the glasses off a classmate’s face, or spit at the teacher. When he was tired, he waved his arms in the air, begging his teacher to hold him. On the rare occasions that his teacher complimented him, he shouted “Yay!” too loudly.

His mother, Latoya Martin, a hair stylist, had moved with her husband and three children from Donalsonville, a rural town in Seminole County, in the southwest corner of Georgia, to be closer to psychiatrists and neurologists who would understand why her son was developmentally delayed. He couldn’t string words together into a sentence. His teachers called Latoya nearly every day and told her to pick him up early, because he was disrupting the class. When Latoya resisted—she was busy looking for a new job—her friends warned her that the school might call child-protective services if she couldn’t pick up Seth promptly. Latoya sensed that the teachers were accusing her of being a bad parent, so she informed the school’s principal that she had never done drugs and that in high school her G.P.A. had been 4.0. Latoya’s sister Anita said, “They kept saying we needed to work with him more at home. I’m, like, we work with him—that’s not the problem. This is part of his disability!”

After a month, Latoya was told that Seth would be sent to a school twenty minutes away, in the Georgia Network for Educational and Therapeutic Support, a constellation of schools, known as GNETS, attended by four thousand students with emotional and behavioral disabilities. Anita, a public-school teacher in Atlanta for nearly two decades, said, “I was just trying to figure it out in
my head—we already have special-ed classes in the schools, so why is there this second system?”

GNETS has a ten-per-cent graduation rate, compared with seventy-eight per cent for other public schools in Georgia.

Seth, who at twenty-one months had been given a diagnosis of pervasive developmental disorder—a loosely defined diagnosis often given to toddlers when their condition is not understood—was assigned to the Ash Street Center, one of a hundred and seventy-nine sites in the GNETS network. The school is surrounded by a gated fence. Latoya said that the next-youngest student in Seth’s class was nine. The year before, a teaching assistant at Ash Street had been arrested after knocking a fourteen-year-old boy to the floor, choking him, and shouting, “I will kill that little ***!” [Note, this article does contain an obscenity]

Latoya said that, when she walked into her son’s class, “I did not see one white child. All I saw was black boys.” Seth’s “target behavior,” according to the center’s intervention plan, was to “comply with adult directives.” Latoya demanded that Seth be returned to his neighborhood school, but she was told that first he had to meet his performance goals, which included following instructions seventy per cent of the day. “You all know this is against the law, right?” she said to Seth’s teacher.

The federal Individuals with Disabilities Education Act, passed in 1975, states that children with disabilities must be educated with their nondisabled peers to the “maximum appropriate extent.” They can be removed from their classrooms only if their disabilities are so severe that they can’t learn in a less restrictive setting.

Arkansas - Ascent to Shut 3 Care Centers in Arkansas in Next Month
By Jeannie Roberts, Arkansas Democrat-Gazette, September 21, 2018

More than 400 children with special developmental or medical needs must now find new therapeutic day care programs after Ascent Children's Health Services announced it is closing the doors of three of its facilities on Oct. 17.

The care of children at the closing centers -- located in Arkadelphia, North Little Rock and West Memphis -- was funded by Medicaid under the state's new Early Intervention Day Treatment program and the Outpatient Behavioral Health Program.

"The closure will not change or disrupt a child's eligibility to remain in the EIDT program, even if the child was grandfathered in when EIDT launched earlier this year," said Amy Webb, a spokesman with the Arkansas Department of Human Services.

Multiple calls to the corporate office of Ascent Children's Health Services were unanswered Thursday afternoon.

The facilities provide outpatient occupational therapy, physical rehabilitation, speech and language therapy and mental health services to children with developmental disabilities, including autism, Down syndrome or cerebral palsy.

Two of the facilities that are closing were in the news last year over incidents involving children. On June 12, 2017, 5-year-old Christopher Gardner died after he was left in a van at the company's West Memphis facility. In late July 2017, a child at the North Little Rock facility was left unattended outside.
Both facilities were placed on a one-year probation status by the state.

A 2017 investigation by the state Division of Child Care and Early Childhood Education showed lifesaving alarm systems meant to prevent children from being left in hot day care vans were found inoperable, disabled or otherwise flawed in Ascent Children's Health Services locations throughout the state.

The Arkadelphia facility had several incidents last year with children being improperly handled by the staff, resulting in caregivers being fired after two incidents and behavior guidance training for the staff after a third instance, according to Marci Manley, another spokesman for Human Services.

Ohio - Families Sue to Keep Loved Ones with Disabilities in Care Centers
By Rita Price, The Columbus Dispatch, Updated September 24, 2018

Families fighting to preserve the rights of Ohioans with developmental disabilities to live in residential care centers equipped to meet their needs have filed a lawsuit against the state and other groups in federal court in Columbus.

The dozen families named in the case say the push toward policies that promote home- and community-based services could force their loved ones into apartments, group homes and other settings not suitable for people with complex disabilities and medical conditions.

“We’re trying to maintain the continuum of care,” said Upper Arlington resident Caroline Lahrmann, one of the plaintiffs. “People want to have choices. We are afraid that there aren’t going to be places left that can appropriately serve our loved ones.”

Lahrmann, mother of teenage twins with profound disabilities, said the action filed Sept. 14 is another response to the still-pending lawsuit brought two years ago against the state by the legal advocacy group Disability Rights Ohio. In that suit, Disability Rights accuses the state of violating the Americans with Disabilities Act by leaving thousands of people in so-called institutional settings because they can’t get the services they need to live and work in their communities.

Some families have been pushing back against the case ever since, saying that Disability Rights is not representing their interests. They also say state and county boards of developmental disabilities are failing to inform people that the residential centers — known as intermediate care facilities (ICFs) — are an option.

“We take no joy in filing these claims,” Lahrmann said. “We did not start this suit — DRO did — but we can’t sit back and let our loved ones be torn from their communities of care. The state, county boards, and DRO are killing ICFs as well as other supported living options.”
The suit names the state, Ohio Association of County Boards of Developmental Disabilities and the Disability Rights Ohio group as defendants.

Nicest News Story of the Week
The Town that gave the world Spam is Proud to be Autism-Friendly
By Amy Ellis Nutt, The Washington Post, September 23, 2018
The tall teenager with the buzz cut opened the museum door, extended a large hand and said cheerily, “Welcome to the Spam Museum.”Samuel Ehret is an official “Spambassador”at the museum, a hot spot for tourists who have a taste for the much-mocked canned meat that has been made here by Hormel Foods for 81 years.

Samuel is also autistic, and he got this job because he loves all things Spam — its taste, its history, and especially the museum’s showpiece: a motorcycle that runs on bacon grease.

He also landed the job because Austin is an autism-friendly town. Ten years ago, it became one of the first in the country to launch a community-wide effort both to reduce the disorder’s stigma and make local businesses
aware of the special needs of autistic customers. It is also probably the only small town in America to employ a community autism resource specialist.

The mission was “a grass-roots effort to improve our community,” said Mary Barinka, an employee of the nonprofit Hormel Historic Home, where she serves as an autism resource liaison for Austin. She is also a former Hormel marketing executive, and the mother of a 16-year-old daughter with autism.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
Help Needed: Caring for the Forensic Population

Dear Fellow Members of VOR,

I am a parent and a member of the Governor’s Advisory Board at Porterville Developmental Center in California. The Special Treatment Program serves people with intellectual disabilities who are Regional Center clients. Our residents have been involved in a crime, are submitted through the courts because they are incompetent to stand trial. The clients are forensic clients.

The Special Treatment Program services include an array competency training for court appearances and testing, vocational, educational training, medical, dental, and recreational services in addition to individualized services as needed for the client and his family. The program, through professional support, deals with emotional, self-confidence, anger, drug addiction, and other physical issues.

Porterville Developmental Center Special Treatment Program is unique in the state and supported only with state funds. California does not receive Federal Funding for this program.  

Jails are not suitable for our clients. Jails do not provide proper care or individualized programs and can be very dangerous for a person with developmental disabilities. The need is obvious and many family members of people with developmental disabilities, as well as the judges and people in law enforcement, can relate to the security, safety, supports and services this program provides. The Porterville Developmental Center staff are licensed, professional, creative, and trained to work with this special population. Federal funding would allow this program to serve more clients. Currently, we are limited to serve only 211 persons in the program. The program is full and there is a waiting list. 

Please contact me if you are aware of similar programs in your state. I would like to compare funding sources. Email is preferred. I would like to hear from family members, advocates, and staff persons.  Thank you, I look forward to knowing more about the special programs for this very special population in other states.
Sunny Maden
2345 N. Cameron Ave.
Covina, Ca. 91724
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Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)
Invite you to attend the
2018 Convention
October 7-10
San Diego, CA

Tuesday, October 9 is ID/DD Day
For more information go to

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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