July 6, 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
Good News for the Summertime
Arkansas - Conway Human Development Center residents enjoy fireworks
By Marisa Hicks, The Log Cabin Democrat, July 4, 2018
Conway Human Development Center residents were able to celebrate Independence Day alongside their caretakers and family members during a fireworks display held on campus Tuesday night.

Having the opportunity to provide residents with this inclusive event further allowed staff members to boost their morale and allow residents to enjoy a fun-filled, festive night just as any one else would on the Fourth of July.

“This is definitely an event that inspires and uplifts our residents,” Juan Alfaro, the facility’s total care team department head, said following the evening fireworks show.

Just as other families across the state, and across the nation for that matter, will be out enjoying cookouts and watching fireworks burst in the sky, Alfaro said it was import to CHDC and Department of Human Services staff to provide that holiday staple for CHDC’s residents.
Centered at the campus’s heart, fireworks shot off into the sky above the facility, leaving intricate varieties of color for the residents to watch and for many, to enjoy with their family members by their sides.

As the fireworks crackled off into the night sky, residents were posted at stations across the center, many watching in awe from their back patios.

The ability to host this performance for residents and their families helps the center’s staff further provide the residents a sense of belonging, CHDC Superintendent Sarah Murphy said, noting the fireworks display has been a campus favorite for many years. This year’s event, she said, was made possible through support from the Arkansas State Elks Association.

Pennsylvania - Sesame Place: The first theme park in the world to be designated a Certified Autism Center
Sesame Place® has partnered with The International Board of Credentialing and Continuing Education Standards (IBCCES), a global leader in online training and certification programs, to become the first theme park in the world to be designated as a Certified Autism Center (CAC). It is our goal to provide every family with an enjoyable and memorable visit to Sesame Place, and we are proud to offer specialized services to guests with autism and other special needs.

Nova Scotia - Girl with cerebral palsy saves baby brother from drowning in pool
CTV, July 3, 2018
A 9-year-old Nova Scotia girl with cerebral palsy is being hailed a hero for saving her baby brother from drowning in their family’s backyard pool.
“You don’t need to be able to walk and talk,” Lexie’s grandmother, Nancy Comeau-Drisdelle, told CTV Atlantic. “You can still make yourself heard and you can still help. And yes, she did save his life.”

Comeau-Drisdelle and Lexie’s mother, Kelly Jackson, had been getting ready for Lexie’s ninth birthday party at the family’s Dartmouth home while Lexie, who uses a wheelchair to get around, watched them work from the kitchen. When Lexie’s 18-month-old brother Leeland woke up from a nap, their mother went upstairs to get changed.

“Mum brought him downstairs for me,” Jackson, a mother of three, said. “We didn’t communicate about, oh the door isn’t locked.”

With Leeland in the kitchen, Comeau-Drisdelle turned around for a few seconds -- and that’s when the little boy slipped out the back door.

Realizing that her baby brother could be in trouble, Lexie started shrieking.

“She’s yelling and she’s pointing at the door, and I realize Leeland’s not with her,” Comeau-Drisdelle recalled.

“All of the sudden, I’m upstairs and I hear her screaming like bloody murder,” Jackson added. "We've never heard her scream like that."
Comeau-Drisdelle quickly rushed into the backyard.

“I took off outside and I’m not seeing him,” Comeau-Drisdelle said. “I ran, and he’s right by the edge (of the pool) and I took him out.”

National News
Department of Education delays equity in IDEA compliance date by two years
By Amelia Harper, Education Dive, July 3, 2018
The U.S. Department of Education (ED) is postponing until July 1, 2020 the date states need to comply with an Obama-era rule under the Individuals with Disabilities Education Act (IDEA) that would address whether minority students are disproportionately placed in special education. Secretary of Education Betsy DeVos's office has also announced postponing the date for including children ages 3 to 5 in the analysis of significant disproportionality from July 1, 2020 to July 1, 2022, according to a document released by the ED and published in the Federal Register today.

During the public comment period on the "equity in IDEA" rule, 390 parties submitted comments, with many commentators opposing the notion of postponement, arguing that the status quo is unacceptable, that states have failed to adequately solve the issue — which some regard as a civil rights problem — and that federal government needs to intervene.
However, the announcement says the ED does not feel that the causes and solutions for the problem have received sufficient study and believes “that the racial disparities in the identification, placement or discipline of children with disabilities are not necessarily evidence of, or primarily caused by, discrimination, as some research indicates.” The delay, the department says, will “also give states the opportunity to examine this issue through their own policies and procedures.”

The news that ED is delaying compliance of the Obama-era special education rule does not come as a shock to most educators. DeVos and her team have been proposing the delay for months.

Senator Ben Cardin Receives “Leading Light of Long Term Care Award” from AHCA/NCAL

AHCA Press Office, July 5, 2018

The American Health Care Association and National Center for Assisted Living (AHCA/NCAL) today awarded Senator Ben Cardin (D-Md.) with the “Leading Light of Long Term Care Award.” The association periodically gives this award to policymakers who demonstrate leadership by seeking positive solutions for the seniors and individuals with disability who rely on long term care.   
“Senator Cardin is not only a health care expert on Capitol Hill, he truly understands the issues we deal with in long term care,” said AHCA/NCAL President and CEO Mark Parkinson. “The permanent therapy cap solution would have never become law without his leadership, and we thank him for being a champion for the millions we serve.” 
Senator Cardin was a long-time advocate of finding a permanent solution to the therapy caps exception process. From his days in the House of Representatives in the early 2000s, he routinely introduced legislation to permanently end therapy caps, and worked tirelessly to get similar language in larger health and budget legislation. That problem was fixed earlier this year in the Bipartisan Budget Act, which repealed Medicare Part B outpatient therapy caps retroactively to January 1, 2018.
“Rehabilitation therapies are critical to helping millions of Americans recover from injuries and debilitating illnesses," said Senator Cardin, a member of the Finance Committee. “Now that the arbitrary therapy caps have been repealed, long-term care facilities will be able to provide seniors the necessary services to help them resume their normal lives without running into roadblocks. The work that AHCA and NCAL members do every day to improve the lives of millions of seniors and individuals with disabilities is essential and will not be hindered anymore.”

State News
Ohio - Turnover rate for those aiding disabled clients rivals retail, fast-food industries
By Rita Price, The Columbus Dispatch, July 3, 2018
Although their chronically low wages showed modest gains last year, frontline workers who provide support and care to Ohioans with disabilities still left their jobs in droves.

A new survey by the Ohio Provider Resource Association found that employee turnover in 2017 climbed to 61 percent — a staggering rate that compares with the churn of the retail and fast-food industries.

“I hope some legislator will look at this and see what’s happening,” said Sandy Staton, a 63-year-old retiree who cares for a brother severely affected by cerebral palsy.

Staton would like to work less and hand over some of the duties to a direct-support worker. But she and her family have all but given up on finding dependable, long-term help.

“The problem lies in consistency,” said Staton, who lives in South Point, a Lawrence County village along the Ohio River in southern Ohio. “To get to know my brother, to understand him, is very difficult. It takes time.”

The task essentially dwarfs the compensation, Staton said, and many employees walk away.

The association received survey responses from private-sector agencies representing more than 8,000 direct-support workers and found that the average hourly wage rose by about 9.7 percent from 2015 to 2017, to $11.23 an hour, said Mark Davis, president of the provider association.
That’s good news, but it doesn’t appear sufficient to attract and retain desperately needed workers during a time of low unemployment. The spike in turnover was far greater, increasing some 20 percent over the same time period.

Davis and others are trying to analyze some of the ways in which a robust economy drains the pool of potential direct-support workers, many of whom are able to find different jobs that pay more and demand less. “When times are good, they’re bad for us. When times are bad, they’re good for us,” Davis said of the seeming pattern. “You can make donuts and make more money than working with people with disabilities. Cage-cleaners at a zoo can earn more. That’s hard to hear, but it’s true.”

Few industries have turnover rates anywhere near as high, said Robert Gitter, an Ohio Wesleyan University economics professor who has written workforce reports for the Ohio Department of Medicaid. Since the recession ended and job-hungry Ohioans began to find better-paying work, “The story has gotten worse,” he said. “There’s evidence that turnover affects the quality of care.”

Gahanna resident Larry Koebel said the nonprofit agency that runs the residential center that is home to his 47-year-old son, Doug, sometimes has to turn to temporary staff to get by. “When you have heavy turnover, the new staff doesn’t know the routines,” Koebel said.

COFAR renews request for DPPC report on woman’s death in wake of Boston Globe court ruling
By Dave Kassel, The COFAR Blog, July 2, 2018

Although the state’s Public Records Supervisor ruled in April that the state Disabled Persons Protection Commission (DPPC) can keep all investigative reports on the sudden death of a developmentally disabled woman secret, we believe a recent state Superior Court ruling has provided a basis for renewing our request for the records.

The decision by Superior Court Judge Douglas H. Wilkins in December 2017 upheld an appeal by The Boston Globe, which has been seeking mug shots and incident reports of police and other public officials who have been arrested on various criminal charges.

In our view, the Globe’s argument that the records it is seeking are public applies equally to the DPPC report and related records in the case of Karen McGowen, which COFAR has been seeking.

Ms. McGowen was killed in an apparent accident last November. She reportedly fell from a wheelchair lift while getting out of a van at her Pittsfield-based day program funded by the Department of Developmental Services.

The DPPC, which is charged with investigating or supervising investigations of abuse and neglect of disabled adults under the age of 60, confirmed it was investigating Karen McGowen’s death. On February 13, the DPPC denied COFAR’s request for the records in the case.

In her decision on our records appeal on April 20, Rebecca Murray, the state public records
supervisor, focused on one exemption to the Public Records Law [known as “Exemption (a)”], which appears to give blanket authority for the enactment of statutes and regulations that can potentially exempt all records of particular state agencies from disclosure.

We are arguing in our renewed bid for the DPPC records that the DPPC’s enabling statute does not actually explicitly state that all of the Commission’s regulations are exempt from disclosure.

In her April 20 determination, Murray focused on the DPPC’s regulations, which, contrary to the enabling statute, do explicitly state that the Commission’s records are not public. The regulations would therefore appear to exempt all or most of the Commissions records from public disclosure.

But that apparent inconsistency between the DPPC’s enabling statute and regulations was not noted in Murray’s determination.

That appears to be the crux of the matter because a similar apparent inconsistency between a statute and regulations regarding the state’s CORI law is the basis of Judge Wilkins’ December decision in the Globe’s public records case. In his ruling, Wilkins upheld the Globe’s argument that the CORI law does not permit public officials to block the release of mug shots or police reports.

Wilkins also upheld the Globe’s argument that a regulation issued by the state agency that administers the CORI law is inconsistent with the law in that the regulation appears to justify withholding the records from disclosure.

“The regulation is invalid because ‘its provisions cannot in any appropriate way be interpreted in harmony with the legislative mandate,'” Wilkins’ decision stated.

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!
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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