September 20, 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
National News:
Congress Passes $1.8 Billion Autism Bill; Seed was Planted by Brick, New Jersey Parents in 1990s
By Jerry Carino, Asbury Park Press, September 20, 2019
As the Autism CARES Act goes to President Trump's desk, sponsor Rep. Chris Smith recalled the Gallagher family's key role in launching federal research.

One day in 1997, two parents from Brick met with Rep. Chris Smith for three hours to discuss a growing but poorly understood health issue.
Bobbie and Billy Gallagher were raising two toddlers with autism, and their concerns prompted Smith to examine how the federal government was addressing the disorder. 

“Nothing was being done for autism — $287,000 was being spent,” recalled Smith, whose Congressional district covers part of Monmouth, Ocean and Mercer counties. “That doesn’t even buy a desk with a person behind it.”

Times have changed. On Thursday the U.S. Senate unanimously approved the Autism CARES Act, sending the $1.8 billion package to President Donald Trump, who is expected to sign it into law.
In 2014, Bobbie Gallagher of Brick speaks about raising two children with autism. Rep. Chris Smith is in the background. (Photo: Tanya Breen)

Smith was the prime sponsor of the House of Representatives’ version of the bill, his fourth autism-related measure to pass through Congress since that meeting with the Gallaghers. Fellow New Jerseyan Robert Menendez sponsored the Senate version.

The bill will authorize funding for programs at the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration over five years, reauthorizing a similar bill from 2014. It will fund a combination of research, detection and intervention programs, and cover the expansion of autism-related activities.

Administration for Community Living presents webinar on Protection & Advocacy Systems
The Administration for Community Living, Administration on Disabilities funds Protection and Advocacy Systems (P&As), In this recorded webinar, ACL's Jennifer Johnson and Ophelia McLain provided an overview of the P&As designed to advocate for persons with disabilities.

While the ACL is careful only to paint a rosy picture of P&As, and many families have had good reason to disagree with such an assessment, we urge our members to watch this to see how the administration portrays their program.
Families Of Children With Special Needs Now Face Deportation
By Jeff Gammage, The Philadelphia Inquirer, Via Disability Scoop, September 19, 2019

At age 5, Kevin Marín doesn’t speak.He needs help to eat, hearing aids and support from orthotic devices to help with walking.

Besides having severe autism, Kevin has a rare disorder called agenesis of corpus callosum, in which the fibers that connect the two hemispheres of the brain are either missing or only partially intact.

He and his older brother, 12-year-old Luis, who has his own myriad health problems, see neurologists, pediatricians, orthopedists and physical therapists about 20 times a month.

Only the intricate, advanced care of the American medical and therapeutic systems — and the devotion of their undocumented immigrant parents — enables Kevin and Luis, both American citizens, to live semblances of normal lives.

Now, a Trump administration policy change threatens to drive the family out of the United States to a country that lacks crucial medical and social supports for the boys.

“What do you think our children will suffer out there?” asked their father, Pedro Marín Álvarez. “In places with more crime and less education than here?”

Álvarez, 32, crossed the border from Mexico in 2003, while Velveth Román Girón, 36, came here from Guatemala in 2005. Both their children were born in America.

They say they are not asking for citizenship, or permanent residency, or any special status — only the ability to stay and care for their sons, a challenging, round-the-clock endeavor. Technically, only the parents are at risk of removal, since the boys are U.S. citizens, but it’s unclear how the children could survive without the support and advocacy of their mother and father.

“I don’t need privileges,” Román Girón said. “I just need my children to have me, and that I can guarantee their rights as citizens of this country. … We are people who fight for our children.”

Democratic Senators Introduce Bill to Block Trump 'Public Charge' Rule
By Chris Mills Rodrigo, The Hill, September 17, 2019
Sens. Mazie Hirono (D-Hawaii) and Richard Blumenthal (D-Conn.) on Tuesday introduced legislation that would block the Trump administration’s new “public charge” rule, which allows the government to deny entry or green cards to immigrants based on their use of public programs like food stamps and Medicaid.

The Protect American Values Act would block the enforcement of the rule by immigration authorities.
“The true intent of the public charge rule is to create a climate of fear among immigrant families, and sadly its working,” Hirono said at a press conference Tuesday.

Twenty-seven senators already support the bill, Hirono said.

State News: Pennsylvania ICF Closure Update
Opinion: Don’t Close White Haven, Polk Centers

By Gregory Smith (Former director of White Haven Center and former CEO of the Harrisburg, Mayview and Allentown State Hospitals), Citizen's Voice, September 20, 2019

On Aug. 14, the Pennsylvania Department of Human Services announced its plan to close the Polk and White Haven centers over the next three years. Within minutes of Secretary Teresa Miller’s call, the lives of more than 1,000 families of people who live and work within these communities were sent into the turmoil of uncertainty and fear of what the future may bring.

State centers are all intermediate care facilities for people with intellectual disabilities. They are communities whose mission is to provide care and support to our most vulnerable citizens. The only difference between these centers and the 165 private intermediate care facilities statewide is that they do not get to say no to an admission.

Comparing Polk or White Haven today to the past is just wrong. People hold jobs, vote, manage their money, shop, go on trips and enjoy the “everyday life” that we all want. In the 1990s, there was a couple with ID who met at White Haven, got engaged and married. If people want to leave they are supported in that decision. Before deciding the future of these communities, the state should have discussed this possibility with individuals, their families and staff. Secretary Miller and Gov. Tom Wolf have yet to do this.
In addition to their intellectual disabilities, many of the people served at Polk and White Haven have complex, life-threatening medical conditions including visual impairments, respiratory conditions and seizure disorders. Most have spent the majority of their lives within these communities that have an average length of residence of more than 45 years and an average age of 62. Some are in their 80s and 90s.

Many people admitted to the centers in recent years have been ejected from their community-based program for behavioral reasons that in many cases could have led to criminal charges. Most were previously served in a local psychiatric facility. Today, centers are an important, but under-utilized safety net for people who have coexisting, behavioral challenges.

Cost is the real reason for these closures. Its likely two to three people can be served in group home settings for the cost of one person in an intermediate care facilities for people with intellectual disabilities. However, center costs reflect the complex needs of the people they serve.

Families, Staff Denounce White Haven Center Closure; Yudichak Announces Harrisburg Hearing
By Roger Dupuis, The Times Leader, September 12, 2019
Is the closure of White Haven State Center a done deal?

One state official told a parish hall packed with staff and relatives of center residents Thursday evening that it is.

Another took the floor with news that state lawmakers aren’t ready to accept that answer.

State Sen. John Yudichak, D-Plymouth Township, came to the podium during a formal public hearing at St. Patrick’s Parish Center to read out testimony on behalf of himself and Sen. Lisa Baker,
R-Lehman Township, in opposition to the closure, which was announced by the state Department of Human Services last month.

Before he did, however, Yudichak announced to the room that there will be a Sept. 24 hearing before the Senate Health and Human Services committee in Harrisburg on the administration’s decision to close White Haven and the Polk State Center in Venango County.

State News:
Nebraska - Parents of Disabled Children Plead with Lawmakers to Restore Aid
By Andrew Ozaki, KETV-7, September 19, 2019
Emotions and frustrations ran high as dozens of parents pleaded with lawmakers to save their disabled children's health care.
"This is literally life or death," said Melanie Kirk.

Her 13-year-old son, Logan, has a rare lung disorder that affected his brain. Kirk told lawmakers on the Legislature's Health and Human Services committee Friday a recent change by the state will strip her son of the Medicaid assistance he needs.

"This is like a carefully balanced Jenga game for parents. And when you take away the waiver program, you're not removing one brick, one block," Kirk explained. "You're moving the table on which we are balancing our children's health."

KETV Newswatch 7 Investigates revealed the Nebraska Department of Health and Human Services recently changed its criteria for who qualified for the state's Age and Disabilities Waiver. The program helps working parents care for their child with disabilities at home instead of at a nursing home or care facility.

Under the new criteria, nearly 200 children would no longer be eligible.

Vermont - State Overhauls Disabilities Services
By Lola Duffort, VT Digger, Sepember 15 2019
Vermont is restructuring the system for managing and delivering community-based services to people with developmental disabilities. While state officials and advocates say substantial reform is necessary, many service providers and families are worried that the final product could hurt benefits.

“I’m afraid that in trying to fix some of the things that are a problem, we are going to end up messing up a very good system,” said Susan Yuan, whose 45-year-old-son, Andreas, receives in-home support.

The changes represent the largest overhaul the system has seen in decades. The reforms under consideration will change who manages cases, what the state pays for care, and how a client’s needs are assessed. About 3,000 Vermonters currently receive services, which range from job support to round-the-clock care.
Ten independent nonprofit designated and five specialized services agencies provide direct services for Vermonters with developmental disabilities. The system is overseen by the Developmental Disabilities Services Division at the state’s Department of Disabilities, Aging and Independent Living. 

“It literally is going to change most every aspect of what we do and how we do it,” said Bill Ashe, executive director of Upper Valley Services, the designated agency for Orange County.

Oregon Supreme Court To Review Sentence For Murderer With Intellectual Disability
By Rebecca Ellis and Rob Manning, Oregon Public Broadcasting, September 13, .2019

Micus Ward was convicted three years ago for murdering an elderly woman in her sleep in 2013. He was 22 in June 2016, when he was sentenced to life in prison without the possibility of parole.
Ward has an IQ of about 59, according to court filings.

The Oregon Supreme Court has agreed to look into Ward’s case, offering a high-stakes examination of the legal rights of violent suspects with intellectual disabilities.

The high court said it’s looking at two main issues: whether the U.S. Constitutional allows for someone with an intellectual disability to get a sentence of life without parole, and how an intellectual disability affects suspects’ rights at the time they’re arrested. 

Ward’s intellectual disability was raised during his 2016 trial, but so were Ward’s alleged gang affiliations and his apparent lack of remorse after the murder.

According to an article in The Oregonian at the time, prosecutor Allison Brown downplayed Ward’s low intelligence in her statements to jurors. 

“I’m not saying that he’s a mental giant,” she said. “But most of the population in prison are not mental giants.”

In an interview with OPB this week, Ward’s attorney for the appeal, Bear Wilner-Nugent said his argument is in line with recent U.S. Supreme Court precedent. “Just as juveniles can both not be executed and given life without parole so too people with intellectual disability should not be given life without parole,” Wilner-Nugent said.

New Jersey - Alert System For Missing People With Disabilities Is Going Unused
By Amanda Hoover, via Disability Scoop, September 17, 2019

Between 14,000 and 16,000 people go missing for all kinds of reasons in New Jersey each year.

The last time anyone reported seeing Robert Nicholson alive was on Dec. 10, 2018. It was 39 degrees, with a low forecast of 19. He sat at a cafeteria table inside the REM Day Center in Vineland around 1:15 p.m., waiting to board a bus for a day trip.It was only his second day there.
But by 1:40 p.m., when the bus pulled up, no one could find Nicholson; not in the building, not in the surrounding area.

The lead worker told police that was his first day supervising Nicholson, and he knew little about the 28-year-old’s needs. But his group home manager said she had provided the necessary information: Nicholson had a “line of sight” classification, meaning he should not go unsupervised — ever.
Officers searched the area from Boulevard, South City Line to North, according to a missing persons report from the Vineland Police Department obtained by NJ Advance Media. They found no trace of Nicholson, who had serious intellectual disabilities.

On December 26, more than two weeks later, a landscaper found Nicholson about 3.5 miles away, frozen to death with just his baseball cap, hooded sweatshirt, jeans and backpack.

Nicholson was one of three men with disabilities in New Jersey who got lost late last year and later died in the cold. The other two, Juan Garcia and Joseph Brockington, were friends who lost their way while walking to a Wawa in Burlington County.

Between 14,000 and 16,000 people go missing for all kinds of reasons in the Garden State each year. Some are runaways, others are victims of crime or accidents, and more and more, casualties of the opioid crisis. But when it comes to adults with intellectual disabilities in full-time care facilities, balancing their autonomy with an immediate response becomes another obstacle for authorities.

In recent years, legislators unveiled a new tactic inspired by the Amber and Silver alerts. It’s called the MVP alert, but none of these tragic cases triggered it. In fact, it hasn’t been issued once since the law establishing it passed in 2016.

New York - Court: Flawed System Left Disabled Teen in Hospital for Weeks
By Mike Goodwin, Times Union, August 9, 2019
A teenager with profound developmental disabilities languished in a hospital emergency room for five weeks because a school district and state agency couldn't find her a residential school, a state appeals court wrote.

The decision laments a flawed system and a shortage of temporary housing for people with disabilities.

The Appellate Division of state Supreme Court in Albany ruled they could not intervene in the case of a Plattsburgh teenager who spent five weeks at the Champlain Valley Physicians Hospital after her mother said she could not care for her and the local school district said it could no longer handle her behavior.
The ruling found that the state Office for People with Developmental Disabilities had no way to provide the teen with temporary housing while the search for a residential school dragged on for more than a month.

The justices wrote state lawmakers or OWPDD will have to change the way the state agency handles people who need placement in residential schools.

The decision suggests the situation faced by the girl, identified only as "Olivia" in court papers, is not unique.

Georgia - Woman Pleads Guilty To $1.2M Medicaid Fraud Scheme
By Zachary Hansen, The Atlanta Journal-Constitution via Disability Scoop, September 20, 2019

The owner and operator of a Buckhead-based health care company pleaded guilty to a $1.2 million Medicaid fraud scheme, authorities said.Diandra Bankhead, 42, used her company, Elite Homecare, to submit thousands of fraudulent claims for Medicaid services that were never provided to children considered medically fragile, the U.S. Attorney’s Office for the Northern District of Georgia said this month.

Between September 2015 and April 2018, Elite Homecare submitted more than 5,400 claims as a Georgia Pediatric Program (GAPP) provider, the release said. Most of the claims were found to be fraudulent by investigators.

GAPP is an in-home nursing program that serves Medicaid-eligible children under the age of 21. Through the program, participating children are supposed to receive in-home skilled nursing services on an individual basis.

The children who qualify under GAPP typically have autism, blindness, cerebral palsy, Down Syndrome, epileptic seizures, paralysis or other disabilities requiring around-the-clock supervision.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 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.


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. On September 19, 2019 the Senate Passed the bill and sent it to the president to sign into law.

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).

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]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
If you would like to receive VOR's Action Alerts, General Announcements, or information about your membership but not receive the Weekly Newsletter, please select "Update Profile" below.

If you select "Unsubscribe" you will be removed from all of these lists.