May 18, 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.
Saturday, June 9, 2018
Registration: Network with families from across the country
VOR Board of Directors Meeting & Report to Membership
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Time will be provided for member questions and comments
Installation of VOR 2017-2018 Officers and Board Members
Reports from the States

Sunday, June 10, 2018
Registration: Network with families from across the country
VOR Legislative Initiative 2018
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussion on State Advocacy – Liz Belile (TX). Susan Jennings (PA), Rita Winkeler (IL)
      Guest Speakers – Kate McSweeny, Vice President on Govt. Affairs & General Counsel at ACCSES
     (Other speakers TBA)
Legislative Briefing
           Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events

VOR’s Sunday Dinner at The Dubliner - 7:00 pm
Sunday Dinner at The Dubliner is optional. The price is $35 per person. Alcoholic beverages are available at an extra charge.
We ask that you make a reservation in advance.

Monday, June 11 – Wednesday, June 13, 2018
The Washington Initiative
Visits to Capitol Hill - Personal meetings with Members and Congress and their staff are the most effective way to educate and influence federal lawmakers. Join VOR members and advocates from around the country to convey the importance of residential choice and family decision-making to Members of Congress. Be sure to plan enough time to cover your state’s Congressional Delegation.
Monday, June 11                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm
Tuesday, June 12                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm

To register for the conference and legislative initiative or make a dinner reservation at the Dubliner, go to:


VOR Members: $110
Non-VOR Members: $150.00    (Fee includes 1 year membership)


Congressional Lists Are Available NOW!
It's time to start making appointments for with your legislators for
Hill Visits during the Legislative Initiative, June 11 -13

Announcing the Recipient of the 2019 Jordy Engels Award
Melanie Lewis

Longtime VOR members David and Leni Engels are proud to announce that the recipient of this years Jordy Award, Melanie Lewis, of the Arkadelphia Human Development Center (AHDC). The Jordy Award was created in memory of David and Leni's son Jordy and honors outstanding Direct Support Professionals for their outstanding devotion, care, and nurturing of our loved ones with I/DD.
Melanie was nominated for this award by Carole Sherman, another longtime supporter of VOR and parent of John, who resides at ADC.Carole wrote of Melanie:

" Melanie is one of the bright-star-constants in our experiences with AHDC. When I first met her, she was about our son's age: she had a cloud of brown hair, an indescribably beautiful smile and a gentle, and a patient, firm manner in carrying out her work. When she left for nurses training, we missed her in John's home and then were delighted when she returned. ("I always knew I would come back," she once told me).
Melanie's experienced, compassionate work is evident to all; her passion for our center's residents and our center's work and mission are inspirational.

Melanie Lewis began her career at the AHDC at the young age of 22 in 1989.

She worked for 8 years as a home staff and also attended LPN school during that time. In 1997 Melanie transferred to the Arkansas Health Center for one year to get her mandatory year of
experience as a LPN that was required at
the AHDC. Upon returning to the AHDC in 1998, she began her career as a LPN that spanned 12 years. During that time she attended RN school. She successfully completed the RN program and began her RN career in 2009 at the AHDC. 

Melanie has been a faithful and compassionate RN for 9 years at the AHDC. The clients love her and those she worked with years ago will forever have a special place in her heart and she in theirs.

Fitbit-Like Device Shows Promise in Predicting Autism Aggression
By Lindsay Kalter, Boston Herald via Disability Scoop, May 14, 2018
A system that uses a digital wristband and a mobile app could someday predict future outbursts among children with autism, allowing family members and helpers to prevent and prepare for episodes.

“One of the problems when someone can’t tell you they’re distressed is these behaviors feel like they come completely out of the blue,” said Matthew Goodwin, a behavioral scientist at Northeastern University. “It’s about quality of life.”

Goodwin’s system uses a Fitbit-like device to monitor changes in the body. Once the mobile app has tracked each episode of aggression, an algorithm is used to predict behavior a minute into the future.

But Goodwin hopes to develop the project into a more sophisticated tool using a new three-year U.S. Department of Defense grant of $775,000.
“We’ll look at more people for longer, and that’ll enable us to see if we can go further into the future,” said Goodwin, who has joint appointments at Northeastern’s Bouve College of Health Sciences and the College of Computer and Information Sciences.
The project has been about 15 years in the making. Goodwin started on it back when monitoring bodily activity meant using cumbersome electrodes and sensors.

Once technology caught up with Goodwin’s vision, he and his research team observed 20 children with autism over 87 hours, capturing 548 outbursts.

With the Department of Defense money, Goodwin and his team will use the technology to study about 200 children with autism.

Worries Abound Over Medicaid Mandate That Caregivers Check In
By Courtney Perkes, Disability Scoop, May 18, 2018
Federal officials this week issued long-awaited guidelines to help states comply with an upcoming Medicaid requirement that service providers electronically check in when providing in-home care to people with disabilities.

But advocates say there still isn’t enough time for states to implement the program by January 2019, while grappling with concerns about privacy and costs. They are calling on Congress to extend the deadline, noting that states will lose federal funds if they don’t comply.

“This is happening too quickly and the stakes are so high,” said Esme Grewal, vice president for government relations at the American Network of Community Options and Resources, or ANCOR, a nonprofit trade association representing service providers.
The 21st Century CURES Act was enacted by Congress in December 2016 and included a provision for “electronic visit verification,” or EVV, in order to prevent fraud. The scope of who the program would apply to was unclear until Wednesday when the Centers for Medicare and Medicaid Services said the requirement excludes people living in group homes or other 24-hour facilities but does cover personal care and home health services provided in any other type of home.

Ohio - The State of Ohio has been Quietly Trying to make it Easier for Abusive Caregivers to Harm Again
By Ron Regan, Samah Assad, News5 Cleveland
May 10, 2018
The Ohio agency responsible for protecting the health and safety of people with disabilities quietly floated plans to allow abusive caregivers easier access to thousands of children and adults.
It’s a plan that was abruptly dropped just weeks after News 5 Cleveland began raising questions about abusive treatment of people with disabilities across Ohio.

The Ohio Department of Developmental Disabilities (DODD) is charged with “protecting the health and safety” of 96,000 people with disabilities in home settings, as well as private- and state-operated facilities across the state.
On March 29, the agency quietly announced “its intent to rescind” a key rule and make it easier for abusers to strike again. 

The rule change would establish “new procedures” that would allow abusers to remove their names from the department’s public abuser registry, which identifies more than 800 abusive caregivers whose cases were substantiated.
It also shows whether or not they’ve been convicted of a crime. The registry is meant to prevent abusers from working with people with disabilities in the future.

But on May 3, the DODD abruptly cancelled proposed hearings. The agency told News 5 Cleveland in an email that it “withdrew the Abuser Registry rule in order to evaluate recently received feedback.”

Specifically, the change would have permitted abusers to remove their names from the registry after only one year instead of the current five-year period, which bars them from being able to work as caregivers, according to disability rights advocates.

Delaware - Support those with Intellectual and Developmental Disabilities through the McNesby Act
By The Delaware Catholic Advocacy Network, 17 May 2018
Please help Delawareans with intellectual and developmental disabilities by asking your representatives in Dover to support HB 104 – The McNesby Act.

Please ask the Governor and your representatives in the Delaware General Assembly to pass House Bill 104 – now known as the Michael McNesby Full Funding for Adults with I/DD Act. The McNesby Act will deliver $9 million in state funding to programs for adults with intellectual and developmental disabilities in the next state budget.

The Michael McNesby Full Funding for Adults with I/DD Act (HB 104) will ensure that funding for services is brought up to levels recommended by the Department of Health and Social Services over the next 3 years. Currently, funding is inadequate, which stresses the entire system and could put
adults receiving services in danger. The lack of proper funding means that the Direct Support Professionals that deliver services are underpaid, which leads to employee turnover, which can diminish the quality of the care.

Michael McNebsy was born in 1960 with Down syndrome. It was a time when society was unsure of what to do with people with intellectual and developmental disabilities. Michael’s parents chose inclusion for Michael, and he had a rich, happy life. He passed away on March 26th of this year, surrounded by loved ones. Hundreds of people attended his funeral.

Massachusetts - DDS appears to look the other way as Provider Illegally Bans Guardian from Daughter’s Group Home
By Dave Kassel, COFAR Blog, May 14, 2018

Despite a broadly worded state regulation that gives residents of state-funded facilities the right to be visited, a human services provider agency is upholding a directive barring a guardian of a developmentally disabled woman from entering her group home.

Yet, the Department of Developmental Services does not appear to be pushing the provider to rescind its months-long ban. Instead, the Department appears to have decided to ignore the fact that the ban exists.

The August directive from the provider, Toward Independent Living and Learning, Inc. (TILL), stated in writing that the guardian, Susan Fernstrom, “will not go into the residence” even to bring food or other items to her daughter, Holly. “Anything you need to deliver to the residence must be given to the staff or the manager and they will see that it is properly put away,” the directive stated.
In their most recent exchange about the situation, Susan emailed Jennifer Killeen, DDS area director, on May 4, stating that the ban was restricting her ability to serve as Holly’s guardian. In an email in response to Susan on May 8, however, Killeen did not address that concern or mention the ban.

Instead, Killeen’s email described the TILL directive as simply “calling for coordination and notice of any visits to the home…” As such, Killeen said, the directive was “reasonable and compliant with DDS regulations concerning visitation.” This was exactly the same language used by DDS Regional Director Kelly Lawless in an email to Susan in April regarding the TILL directive.

Killeen had also advised Susan in an email on May 2 to establish “regular discussions with TILL and the DDS Service Coordinator about your concerns.” But when Susan raised the issue of the ban in a phone call with Dafna Krouk-Gordon, TILL’s president, two days later, she said Krouk-Gordon flatly refused to rescind the ban.

It is abundantly clear that the TILL directive goes further than calling for coordination and notice of visits. It bans Susan outright from entering the home.

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!
Canada - Families Demanding to Keep Sheltered Workshops Alive take message to Toronto’s Queen’s Park
By Caryn Lieberman, Global News, May 16, 2018
Chanting “meaningful work for meaningful lives,” several dozen parents and their young adult children marched at Toronto’s Queen’s Park Wednesday.

The group came by bus from Guelph to deliver a message to the candidates vying for the Premier’s office.

“We keep talking about equal pay for equal work but they are doing equal work in their own environment and that’s what we keep forgetting,” Dawn Fairbanks said. Her son, 31-year-old Evan, is hearing impaired and developmentally delayed, she explained, and so he would be unable to be a part of the workforce.

“If they have a bad day or if there’s a little issue with any of their health or mental issues, a like-minded environment like a sheltered workshop they understand that and they can deal with that. I don’t think that Evan would be able to cope,” she said.
Ontario is eliminating provincially-funded sheltered workshops, mostly run by not-for-profit organizations, where people with intellectual disabilities do basic tasks for minimal pay.

Opponents of the program, originally created as a temporary place for people with disabilities to learn job skills, said it exploits individuals by paying them far less than minimal wage.

Susan Wahlroth, whose son Duncan McDonald has Down Syndrome and attended Torchlight Services, a sheltered workshop in Guelph, calls that view “misguided.”

“Our kids are happy when they go to these workshops, they feel proud, they feel empowered,” she said, adding that removing the program has “taken away their right to work, it’s taken away their choice of where and who they work with, it’s taken away their respect and dignity.”

Wahlroth said it has been difficult trying to explain to her son why his work has been taken away.

VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
The conference will be held at the Hyatt Regency Capitol Hill again this year. This is a very nice hotel and it is only a short walk to the Capitol and the Senate and House Office Buildings. We have reserved a bloc of rooms at the hotel for the event.

We are also accepting reservations for our Sunday Dinner at the Dubliner . This is an added event, with a $35 Prix-fixe menu that includes salad, entree, dessert, and non-alcoholic beverages (alcoholic beverages are available at an additional cost). This event has been popular in past years, so make sure to reserve your seat when you register. Space is limited, and this event has reached capacity in recent years, so make sure to reserve now!
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 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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