June 8, 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
VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
VOR 2018 Annual Conference and Washington Initiative
June 9 - 13, 2018
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.


VOR's 2018 Annual Meeting & Legislative Initiative:
What you can do if you are not attending this year

Unable to come to D.C. this year? We understand, of course. But there are still things you can do to support VOR from the comfort of your own home.

  • Follow us on Facebook and Twitter. Re-post, Like, or Retweet our posts
  • Follow up with your senators and representatives this August, when they come back to their state offices. All of the materials from VOR's Legislative Initiative will be available on our web site after the conference
State News
The Preventable Tragedy of D’ashon Morris
When a Giant Health Care Company wanted to save Money, a Foster Baby Paid the Price
(Part 1 of a series on Medicaid Managed Care)
By J. David McSwane and Andrew Chavez, Photos and video by Tom Fox, Dallas Morning News, June 3, 2018
He was born three months too early, unable to breathe or eat on his own. But after a year of intense care in a foster home in Mesquite, D’ashon Morris had grown into a bright-eyed toddler who loved to cuddle and crawl.He was still very sick. But he was giggling, babbling, grabbing for toys. Doctors described him as “happy and playful” and told his foster mother he would be healthy by the time he went to kindergarten.

That was before a giant health care company decided he didn’t need round-the-clock nursing care to keep him from suffocating. The decision would save Superior HealthPlan as much as $500 a day — and cost D’ashon everything.

“He would have lived a perfectly good life,” says Linda Badawo, the foster mother who adopted D’ashon. “If only they were paying attention to what I was saying.”

Texas pays Superior and other companies billions of dollars every year to arrange care for tens of thousands of kids like D’ashon: foster children, disabled children, chronically sick children. The companies promise to improve the lives of these kids, as well as adults with severe medical conditions and disabilities.

But under a system set up by the state, every dollar the companies don’t spend on health care they can use instead to hire high-powered lobbyists, pay millions in executive bonuses, and buy other businesses.
The state knows some companies are skimping on care to make profits but has failed to stop it.

The Dallas Morning News spent a year investigating the way Texas treats fragile and ailing residents who rely on Medicaid, the government insurance program for the poor and disabled.

We reviewed more than 70,000 pages of documents, including patient medical records and material that state officials and the companies tried to keep secret. We crunched financial and insurance-industry data and talked to hundreds of families, doctors and policy experts.

We found that state officials are protecting a booming multibillion-dollar industry while the most vulnerable Texans wait in vain for wheelchairs, psychiatric drugs and doctors’ appointments. That system has failed countless disabled adults and sick children who can’t advocate for themselves.

Because of the recent resignations of its top officials, the state health commission said it could not make anyone available to discuss problems with corporate management of Medicaid. In a lengthy statement, it acknowledged many of the problems we found.

For Some With Autism, Stopping Seizures May Aid Development
By Rita Giordano, Philly News via Disability Scoop, June 4, 2018

It’s been long known that many children with autism also have epilepsy or some form of seizure disorder. Not so well understood was the relationship between the two.

But a new study suggests that early life seizures may switch on synapses in the brain that can lead to further development delays in children with autism and other intellectual disorders, including language and learning deficits.

The good news is that aggressively treating those seizures — with medicines that already exist or new treatments being developed — may keep those synapses “silent” and allow the brain to develop more normally.

“We now have evidence that seizures appear to be worsening the developmental disorder, and when you block those seizures, you reverse that,” said senior author Frances Jensen, chair of neurology at the University of Pennsylvania’s Perelman School of Medicine.

Hawaii - Accountant Pleads No Contest to Stealing $7M from non-Profit (The Arc)
From the Honolulu Star-Advertiser via the San Francisco Chronicle June 7, 2018

A former accountant accused of stealing nearly $7 million from an Oahu nonprofit organization has pleaded no contest to the charges.Lola Jean Amorin entered her no-contest plea Wednesday to 18 criminal charges, including first-degree theft, computer fraud, money laundering and tax evasion, the Honolulu Star-Advertiser reported .

Amorin, 70, had worked as the bookkeeper for about 30 years for The Arc in Hawaii, an organization that serves children and adults with intellectual and developmental disabilities.

Amorin was arrested last year and charged with stealing millions of dollars from her employer over two decades. While authorities linked nearly $7 million to Amorin through existing bank records, Deputy Prosecutor Chris Van Marter said the actual amount she stole could be higher. Financial institutions are only required to maintain records for up to seven years, he said.

"There were additional losses that we just couldn't get the record for, but I'm confident that the losses exceed $8 million," Van Marter said.

New York - Bill would give 911 Rights to OPWDD Residents
By Aaron Cerbone, Adirondack Daily News, June 7, 2018

Since the turn of the millennium, more than 90 percent of Americans have had access to 911 services, but Michael Carey, an advocate for people with developmental disabilities, says that more than 1 million New Yorkers living in OPWDD facilities are left out.

On Tuesday, the parents of a 34-year-old man who died at a Franklin County facility for the developmentally disabled met with legislators in Albany to call for the passage of a “911 bill” in the state Senate.

The 911 bill would make employees of the Office for People With Developmental Disabilities, like Sunmount in Tupper Lake, mandatory reporters, required by law to call 911 and the county district attorney when they see or hear of medical emergencies or allegations of abuse of residents.

Employees who do not report emergencies or abuse would be guilty of a class E felony and civilly liable for the damages caused by the failure to report.

Disability Rights New York, which sits on the OPWDD mortality review process identified telephone triage as the number one cause of untimely deaths for residents. When a resident is having a medical emergency, employees are required to call a nurse triage hotline out of Syracuse instead of 911.

This system, Carey says, led to the death of Christopher Blair, a resident in the Valley Ridge Center for Intensive Care in Chenango County.

From our Friends at ACCSES:
Please sign on!
  • 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!
Ohio - Renovation to Canton Care Center Forces Patients Out
By Edd Pritchard, Gatehouse Media, June 7, 2018

The move at Canton Healthcare Center means about 100 patients will have to find a place to stay.

Three months after taking over management of Canton Healthcare Center, CommuniCare Health Services has decided the facility will close temporarily for major renovations.

The decision means 80 to 100 patients must find a new facility before Sept. 1. Options include moving to other CommuniCare centers in the area.

About 100 employees of Canton Healthcare, at 1223 Market Ave. N, will be offered a chance to work at other CommuniCare facilities in the area.

Fred Stratmann, spokesman for CommuniCare — based in Blue Ash, north of Cincinnati — said the residents will be discharged before renovations begin. The company doesn’t want residents to face distractions because of noise, work crews at the site or changes affecting their daily routine, Stratman said.

The company is working on a plan that will cause minimal disruption to the residents, he said.

Georgia Couple Loses Custody of Son after Giving Him Marijuana to Treat Seizures
CBS News, Jun 1, 2018
A Georgia couple who says they gave their son marijuana to treat his seizures, is fighting to regain custody of him. The state took custody of Matthew and Suzeanna Brill's15-year-old son, David, in April when he tested positive for marijuana. They are charged with reckless conduct and facing jail time.

The Brills say their 15-year-old son David went from having up to 10 seizures a day to being seizure free for 71 days after he began smoking marijuana, reports CBS News' Omar VIllafranca. The couple said he's never gone that long without a seizure before. 

"For our son, it was a miracle for him," Matthew said.

Currently, medical marijuana is legal in 29 states and Washington, D.C. Nine states and D.C. allow for legal recreational marijuana. But Georgia has some of the strictest marijuana laws in the country.

Physicians are not allowed to prescribe marijuana for medical use and it's illegal to sell or possess it. But the law does allow those with a state-issued medical card to possess low THC oil.

"The only way he could get a medical card would be a six-year waiting list," Suzeanna said.

Massachusetts - Mother Wages Uphill Battle Against Time for Work Opportunity Bill for her Developmentally Disabled Son

By Dave Kassel, the COFAR Blog, June 6, 2018

Barbara Govoni personally lobbied for months before a bill was finally filed in the state Legislature that would ensure that developmentally disabled individuals who are unable to function in mainstream work environments are provided with employment opportunities within their existing community-based day programs.

Govoni would now love to see H. 4541 move forward in the current legislative session. She believes it would ensure that meaningful activities are provided for her son, Danny Morin, and for many others like him.

But even though the bill has close to two dozen co-sponsors, time does not appear to be on Govoni’s side.

With the current two-year legislative session drawing to an end, a staff aide to Representative Brian Ashe, who filed the bill on Govoni’s behalf, acknowledged that the chances for passage of H. 4541 this year are slim. The bill was referred last month to the Children, Families, and Persons with Disabilities Committee.
Last September, we reported on Govoni’s efforts to reintroduce steady piecework activities in day programs for those who desire it. Danny had enjoyed the work he did in his Agawam-based sheltered workshop before that program and all other remaining workshop programs in the state were eliminated in 2016. After that, Danny was offered only day program activities in the same location, most of which he couldn’t relate to.

In recent months, Danny has been working once a week for about two hours at a time at an assembly and packaging company in Holyoke. It is a pale substitute for the steady work he enjoyed when he participated in the sheltered workshop.

“People are suffering with not having enough work,” Govoni said. “This bill would have a monumental impact on the lives of these people if it were to pass.”

Texas - TX spends $30M on Overtime, Contract Labor at Homes for Disabled
By Andrea Ball, Austin American-Statesman, Tuesday, June 5, 2018

The Texas Health and Human Services Commission spent almost $30 million in seven months on overtime and contract labor at its institutions for people with disabilities because the state can’t find enough people to work at them.The cost of overtime pay and contract labor will likely hit $50 million this fiscal year, for the third year in a row. Union officials say that raising wages for entry-level workers who now make about $11 an hour would help tamp down turnover and reduce costs.

“It goes to show the state wastes a lot of money making people work so much and burning them out,” said Seth Hutchinson, an organizer with the Texas State Employees Union.

Between Sept. 1, 2017, and March 31, 2018, taxpayers paid $13 million in overtime to employees at the 13 state supported living centers. Most of the employees who received overtime were direct care staff, whose work includes feeding residents, bathing them, teaching them life skills or taking them to activities.

An additional $16 million during the same period went to staffing companies, mainly for medical care providers such as psychiatrists and nurses.

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

Indiana - Task Force to Examine Support Needs for Hoosiers with Disabilities

A state plan for the support needs of Hoosiers with intellectual and developmental disabilities will get an update soon for the first time in 20 years. A new state task force aimed at helping the estimated 100,000 Indiana residents has scheduled meetings across the state.

The link to the livestream can be found here.
Dates, times and location for each meeting of the task force are as follows:
  • Wednesday, June 27, 2018, 10 a.m.--2 p.m. CT, Valparaiso
  • Wednesday, Aug. 22, 2018, 11 a.m.--3 p.m. ET, New Albany
  • Wednesday, Oct. 17, 2018, 11 a.m.--3 p.m. ET, Columbia City
All meetings are open to the public and will be streamed live. Public comment will occur prior to the start of each meeting to provide input regarding services and supports for people with disabilities. Requests for accommodations for meetings of the task force should be made by contacting Kristina Blankenship at Kristina.Blankenship@fssa.in.gov at least 48 hours in advance of the task force meeting.
For more information, visit:

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