April 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
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!

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

Lawmakers Band Together to Defend ADA

By Michelle Diament, Disability Scoop, April 6, 2018

U.S. Senate Democrats are vowing to block legislation that would dramatically alter the Americans with Disabilities Act.

A letter signed by 43 Democratic senators urges Senate Majority Leader Mitch McConnell, R-Ky., not to bring forward a bill known as the ADA Education and Reform Act, or H.R. 620.

The measure, which was approved by the House of Representatives in February, would require individuals who experience accessibility barriers at public businesses to submit written notice of the issues. Then, businesses would have up to 60 days to respond and another 60 days to start improvements.

Proponents of the legislation say that it would protect businesses from opportunistic lawsuits while giving proprietors time to correct problems.

Disability advocates counter, however, that to access stores, restaurants, movie theaters and
other spaces for months after flagging an accessibility violation.

“No American should be forced to endure discrimination for any length of time so that places of public accommodation may learn how to follow a seminal, bipartisan civil rights law that was enacted in 1990,” reads the Democrats’ letter sent to McConnell late last month. “Respectfully, we urge you to join us in supporting the rights of Americans with disabilities by making clear that H.R. 620, or similar legislation, will never receive a vote in the United States Senate during the 115th Congress.”

Ohio - Judge Grants Class-Action Status to Developmental Disabilities Lawsuit Against Ohio
By Rita Price, The Columbus Dispatch, March 30, 2018

A 2-year-old court battle between the state of Ohio and legal advocates for Ohioans with developmen tal disabilities can proceed as a class-action lawsuit, a federal judge in Columbus ruled Friday.

Chief Judge Edmund A Sargus Jr. of the Southern District of Ohio granted the request in part, but also imposed a somewhat tighter definition of the class than the one sought initially by plaintiffs.
Disability Rights Ohio filed the lawsuit in 2016 on behalf of six people who said the state’s disabilities system violates the federal Americans With Disabilities Act by leaving them and thousands of others stuck in institutions — or at risk of moving to one — because they can’t get the services they need to live and work in their communities.

According to the decision, Sargus certified a class of “All Medicaid-eligible adults with intellectual and developmental disabilities residing in the state of Ohio who, on or after March 31, 2016, are qualified for home and community-based services, and, after receiving options counseling, express that they are interested in community-based services.”

Disability Rights and its legal partners said the
judge’s ruling means that the five remaining plaintiffs now represent the interests of thousands of Ohioans.

Class-action status has been an emotional issue for families who don’t want the lawsuit to speak for them. They fear that loved ones could be forced to leave high-quality residential centers and move into unsafe community settings, where their complex needs won’t be met.

Dozens of them fought for a voice and Sargus granted them a seat at the table in July.
The class-action ruling is disappointing, said Caroline Lahrmann, whose two children live in a residential center known as an “intermediate care facility.”

Families will continue to push for the ICF choice, Lahrmann said in an email. The bottom line, she added, is that, “All choices — ICF and community options — should be communicated to individuals and families and adequately funded.”

Georgia - Orange Grove Research Center Aims to Educate about Dementia, Disabilities
By Elizabeth Fite, The Times Free Press, April 4, 2018

Patti Wade remembers John Goodlet as her loving, independent friend who idolized Elvis Presley. "We called him 'John Elvis,' 'cause he always liked to dress up like Elvis and play Elvis music," she said.

Goodlet had Down syndrome, a genetic disorder caused when a person is born with extra genetic material from chromosome 21. Today, he's remembered as the inspiration for the Orange Grove Center on Aging, Dementia and Longevity, an education, advocacy and research center in Chattanooga focused on the needs of older adults with intellectual and developmental disabilities.

Officially established in March, the center teaches evidence-based caregiving strategies to family members, medical professionals, students and
anyone interested in learning to better care for seniors with dementia or disabilities.

One of the features is a "virtual dementia tour," which simulates the distortion and disruption of dementia, an umbrella term for conditions like Alzheimer's characterized by progressive mental decline, most commonly, memory loss.

"We don't want folks feeling sorry for people with dementia. We want them to understand what's going on," said Dr. Rick Rader, director of habilitation at Orange Grove. "It totally changes your perspective when you can't rely on your sensibilities and your senses."

In recent decades, the life expectancy of people with intellectual disabilities, such as cerebral palsy, Down syndrome and autism, has increased tremendously. But with aging comes the risk factor of Alzheimer's disease and related dementia.

Moreover, the risk of developing Alzheimer's is six times higher in people with Down syndrome, and 75 percent of individuals with Down syndrome who live past 65 with develop the disease, according to a 2012 study in the European journal of neurodegenerative disease.

Massachusetts - Donald Vitkus Presented Posthumously with Benjamin Ricci Award

By Dave Kassel, The COFAR Blog, April 2, 2018

Donald Vitkus, who survived a traumatic childhood at the former Belchertown State School and then went on to earn an associate’s degree and to become a direct caregiver, was posthumously presented with the 2018 Benjamin Ricci Commemorative Award late last month.

The presentation was made by Department of Developmental Services Commissioner Jane Ryder at a March 28 ceremony at the State House in Boston. The annual award celebration recognizes the accomplishments of individuals served by DDS, and the dedication of caregivers and advocates.

Ryder will attend Vitkus’s memorial service, which is planned for June 23 at the Warner Pine Grove Cemetery Belchertown, where many of the school’s former residents are buried.

Benjamin Ricci, who died in 2006, had been thelead plaintiff in Ricci v. Okin, the historic federal consent decree case in Massachusetts in the 1970s and 1980s, which resulted in major upgrades in care at Belchertown and other
institutions for the developmentally disabled around the state.
Donald Vitkus died last January at the age of 74. His life at Belchertown and afterwards was chronicled in a 2016 book, You’ll Like it Here, by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for persons with developmental disabilities and their families in western Massachusetts.

Orzechowski accepted the award on Vitkus’s behalf at the March 28 State House event.

Among those attending the event were Benjamin Ricci’s son, Bobby, who was a Belchertown resident, and Bobby’s brothers, Jim and Tom.

New Mexico - Critics Say Insiders Dominate Committee Working on Guardianship Reforms
By Colleen Heild, Albuquerque Journal, April 1, 2018
With a new law taking effect July 1, the state Supreme Court has appointed a rules committee to get down to the details of reforming the state’s adult guardianship system – but the group’s composition is drawing criticism for including guardianship professionals but excluding critics and family members of incapacitated people.

Of the 22 people who applied to serve on the rules committee, the Supreme Court appointed eight members – two judges, five attorneys and a professional court visitor who advises judges in guardianship cases. The court visitor was the sole non-attorney appointed.

“Having seen the list, it looks like more of the same going on with the courts,” said Emily Darnell Nunez of Albuquerque, whose family was embroiled in a controversial guardianship case, beginning in 2010. “Some of these people make their living out of being attorneys for guardianship cases. So it looks like insiders.” ddddddddddddddddddddddddddddddddddddddddddddddddddddd Jorja Armijo-Brasher

One non-lawyer who applied, but wasn’t appointed, is Jorja Armijo-Brasher, former director of the city of Albuquerque’s Department of Senior Affairs. She has been a vocal critic of the current system and servedon the guardianship commission appointed by the Supreme Court to recommend improvements. That commission’s work ended Jan. 1, with a slate of reforms proposed.

“The hope was when it (the rules committee) went forward that there was potential and there would be some real scrutiny of the processes and procedures being used,” Armijo-Brasher said last week. “There’s always the concern when the people working for that industry may be the only ones looking at themselves. It is hard to always look at yourself without having other eyes to help you see clearly.”'

Chairing the rules committee is Gaelle McConnell, an Albuquerque lawyer, who also served the Supreme Court commission last year. McConnell has a background in guardianship and conservatorship law.

Seattle Has Rapid Elimination of Sub-Minimum Wage

Because We Care - Beyond Inclusion, April 3, 2018

Councilmember Teresa Mosqueda – thank you for the concern you have for our community members with disabilities. While I understand this has just passed into law, I believe there was some very critical information that was left out, not addressed and misrepresented by members of the Seattle Commission for People with disAbilities.

The first issue is that these certificates are not “general purpose” to allow any employer to pay a person less than the minimum wage just because that person has a disability. They were for specific employers for specific employees for specific jobs. Generally, they are used for people with complex and often intellectual disabilities. It is an fact that those with intellectual disabilities, just be definition of the disability itself, may not be as productive as a person with a different type of disability – such as autism. Autism is NOT an intellectual disability but it is a developmental disability. This issue is one that the Seattle Commission for People with disAbilities has failed to acknowledge and understand. (Particularly co-chair Shaun Bickley)

The second thing is that for people working in these job, they tend to work 10 hours or less a week and most often have a job coach to assist them in their job. The job coach may be 1:1 or only check in occasionally – depending on the support needs of the disabled person. The funding for the job coach is typically paid for through the Developmental Disabilities Administration through the counties. Without a job coach, many of these people would not be able to get and maintain employment.

One example of this is the issue of my son. He does work in a supported integrated employment setting within Seattle. He does earn a bit more than the minimum wage and works 9 hours a week with a 1:1 job coach. The vocational vendor agency is paid $2700 per month to provide the job coach for his 9 hours of work a week. If for some reason a job coach is sick or on vacation and they cannot get a sub, my son is not able to go to work that day.

For people like my son, they are not working at these jobs for their sole income and they all tend to live in poverty. They most likely receive SSI which will be reduced from the $750.00 to something less based on their earned income. Due to the earned wages my son makes, his SSI is reduced to $532.00. He then needs to pay rent, utilities, food, household necessities, clothes, healthcare supplies not covered by insurance, and other necessities of daily life out of his SSI and earned wages.

Intentional Communities:
Don't Let My Son Fall Off the "Disability Cliff" When I'm Gone
By Michael Bérubé, USA Today, April 2, 2018
My adult son has intellectual disabilities and needs lifelong support systems. For now he has us, but we also need solutions like intentional communities.

Imagine you're driving 80 miles per hour. The road ahead ends in a precipitous descent. What lies beyond the cliff's edge, you can't see. You only know that you're going to fall, hard and fast. And you desperately hope that someone or something will cushion the terrifying drop.

It's a dramatic metaphor. But, figuratively speaking, it's not far from the reality of what happens to people with disabilities and their families when they fall off the so-called "disability cliff." That's how we describe what ensues when an individual with disabilities turns 21 and ages out of the support systems that have sustained him or her from infancy through adolescence. It’s where the law ends and a dark, uncertain wilderness begins.
Maybe you and your child can find a congenial employer, and a workplace where he or she will be welcome and supported — never mocked or humiliated. Maybe not.

Maybe you and your child can devise a quasi-independent living arrangement, in which he or she has an ideal balance of privacy and ready help whenever necessary. This might mean assistance with getting from place to place, for example, if your child can’t drive or if public transportation doesn't suffice.

But what if your child can’t take public transportation? Or make dinner? Or balance a checkbook? What if you work full-time and can't take time off to care for your child during the hours he or she used to spend at school? Maybe you can work out an arrangement with close friends or extended family. Maybe that's not an option.
The Bérubé Family

Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.

Most would agree that every reasonable accommodation should be afforded to people who need a ramp or a van or an assistive device to be a capable engineer, city planner, counselor, accountant or zookeeper. But for people with intellectual disabilities, especially those who require assistance with most life tasks, it’s a different story. When accommodations mean hands-on supervision or support, the public is far less encouraging.

Intentional communities hold great promise for families seeking to steer clear of the disability cliff. They bring together individuals with intellectual disabilities, and caretakers and assistants who are not disabled.

Call For Entries! 2018 Application Period Now Open for Disability Reporting Contest

Posted on March 22, 2018 by
The National Center on Disability and Journalism

The National Center on Disability and Journalism is accepting entries for the 2018 Ruderman Foundation Awards for Excellence in Reporting on Disability.

This award is the only journalism contest devoted exclusively to disability coverage.

The Ruderman Foundation Awards for Excellence in Reporting on Disability recognize the best reporting on disability issues and people with disabilities that is being done in the U.S. and abroad.

More than $20,000 in cash awards will be given to first-, second- and third-place winners in large media and small media categories.

There is no entry fee for the competition, which is open to digital, broadcast and print media outlets.
Contest entries are due by midnight on Aug. 6, 2018. Entries must have been published or aired between July 1, 2017, and July 31, 2018. Entries are accepted from outside the U.S., although the work submitted must be in English. Awards are given to individuals or teams.

The 2018 winners will be recognized at a fall 2018 ceremony in Washington, D.C., featuring a keynote speaker on disability coverage as well as a disability reporting workshop for journalists.


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 mmmmmmmmmmmm Noon
VOR Board of Directors Meeting & Report to Membership mmmmmmmmmmmmm 12:30 pm
          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 mmmmmmmammmmm 3:30 pm
Reports from the States mmmmmmmmmmmmmmmmmmmmammmmmmmmmm 4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 10, 2018
Registration: Network with families from across the country mmmmmmmmmmmm 11:30 am
VOR Legislative Initiative 2018 mmmmmmmmmmmmmmmmmmmmmmmmmmm Noon
      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 mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 5:00 pm

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:
____       $90 per member if paid by April 30, 2018
____      $110 per member if paid after May 1, 2018
Non-VOR Members:       (Fee includes 1 year membership (Reg. $45)
____       $125 per person if paid by April 30, 2018
____       $150 per person if paid after May 1, 2018

Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001
We have a bloc of rooms available for conference attendees.
The VOR Group rate is $279 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.
To make your reservations online, go to: https://aws.passkey.com/go/AnnualVORConference2018
If you do not have internet access, c all 1-888-421-1442 and mention “VOR’s Annual Conference” when making your reservation.
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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