March 8, 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


VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

Registration includes a one-year membership in VOR
$100 per person if paid by March 31, 2019
$125 per person if paid by April 30, 2019
$150 per person if paid after May 1, 2019

All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.
Tentative Schedule:

Saturday, June 8, 2019
Registration: Network with families from across the country                                       Noon
VOR Board of Directors Meeting & Report to Membership                                    12:30 pm
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Mentoring our next generation of advocates
          Time will be provided for member questions and comments
Installation of VOR 2019 - 2020 Officers and Board Members                                  3:30 pm
Reports from the States                                                                                             4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 9, 2019
Registration: Network with families from across the country                              11:30 am
VOR Legislative Initiative 2019                                                                                             Noon
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussions
      Guest Speakers - TBA
     (Other speakers TBA)
Legislative Briefing                                                                                                                3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events                                                                                                    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.

Monday, June 10 – Wednesday, June 12, 2019
VOR's Legislative 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 10               Informal De-briefing                       6:30 - 8:00 pm
Tuesday, June 11             Informal De-briefing                       6:30 - 8:00 pm

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

Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

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 $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.

To make your reservations online, go to:
If you do not have internet access, c all 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.
Breaking News:
Representative Debbie Dingell (D-MI) and Senator Rob Portman (R-OH) Introduce Money Follows the Person Renewal Bill in Congress

H.R. 1342 & S. 548 - These bill are expected to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities. MFP has been renewed for first three months of this year. The new bills has would renew it for another 5 years.
National News:
While VOR supports the goals of people with I/DD who wish to live in fully inclusive environments, we are disturbed by the article below, which once again paints all people with I/DD as a monolithic population.

The I/DD community is a diverse community. Campaigns such as the one below send a positive message, but only speak for a part of the I/DD community. It ignores the very real needs of people who are impacted with severe and profound Intellectual and developmental disabilities, severe autism, self destructive or threatening behaviors, and complex medical conditions.

We understand the aspirations of those who seek inclusion.We only ask that they stop excluding people with higher needs from the I/DD conversation.
‘R-Word’ Pledge Is No More
By Shaun Heasley, Disability Scoop, Mar. 7, 2019
Ten years in, an initiative aimed at stomping out use of the word “retard” is evolving to embrace a new focus.

Special Olympics and Best Buddies said this week that their “Spread the Word to End the Word” campaign will segue into an effort dubbed “Spread the Word: Inclusion.”

The new push will emphasize respect and inclusion rather than highlighting an end to terminology that’s considered offensive to many with disabilities.

“We know that exclusion persists beyond just language,” said Tim Shriver, Jr., co-founder of Spread the Word in a video posting about the changes. “Over 60 percent of people still believe that individuals with intellectual and developmental disabilities should be segregated in schools and the workplace. We need to create a new reality, one in which everyone — with or without an intellectual or developmental disability — is included.”
“Spread the Word to End the Word” originated in 2009 as a grassroots campaign. As a result of the group’s efforts, over 780,000 people have taken an online pledge to “support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.”

Rather than asking people to commit to a predefined pledge, the new incarnation of the initiative asks people to come up with their own commitment to help make inclusion a reality.

From our Friends at ACCSES:
Tell Congress to Vote NO on the Raise the Wage Act
In January, the United States House and Senate introduced companion bills to raise the minimum wage over time. The bills, H.R. 582 and S. 150 , The Raise the Wage Act, include language that would eliminate Section 14(c) of the Fair Labor Standards Act, which would eviscerate opportunities for people with significant disabilities who enjoy and want to keep their jobs. 


Go to the ACCSES Action Center RIGHT NOW and tell your Members of Congress to not let this Bill go to the House floor with this provision in it and, if it does, to VOTE NO.
Senators Look To Expand ABLE Program
By Michelle Diament, Disability Scoop, March 6, 2019

A proposal in the U.S. Senate would dramatically increase access to a newly-established program that allows people with disabilities a way to save money without jeopardizing their government benefits.
Legislation introduced this week by a bipartisan group of senators would raise the eligibility age for ABLE accounts.

Under the plan known as the ABLE Age Adjustment Act, S. 651, individuals with disabilities that present by age 46 could open the accounts. Current law limits ABLE accounts to those with disabilities that onset prior to age 26.

“Since the passage of the ABLE Act, families across the country have benefited from the opportunity to better plan for the future of their disabled loved ones. This legislation will build on the foundation of the ABLE Act and expand access to these accounts to more families,” said Sen. Chris Van Hollen, D-Md., who introduced the bill along with Sens. Bob Casey, D-Pa., Jerry Moran, R-Kans., and Pat Roberts, R-Kans.

ABLE accounts were created under a 2014 federal law and permit people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is saved in the accounts.

State News:
New Jersey - Is NJ Prepared For More Developmentally Disabled Adults Living Into Their Senior Years?
By Briana Vannozzi, NJTV News, March 7, 2019
At age 57, Ellen Warshaw is finally living her dream. She’s preparing to move into a new home for aging adults called the Michael Och House at JESPY, a South Orange-based nonprofit dedicated to individuals with developmental and intellectual disabilities.

“There’s going to be eight other people plus me. And I get to pick out my room, and I’m excited because I have my own bathroom and I don’t have to share,” Warshaw said.

But research shows that Warshaw’s welcomed situation is the exception.

“There has to be more choice. There’s this idea in some people’s head that there’s one size fits all with folks with disabilities. It’s just not the case,” said Paul Aronsohn, ombudsman for the New Jersey office of Individuals with Intellectual Developmental Disabilities and Their Families.
It’s estimated that over the next decade, more than 1 million intellectually and developmentally disabled adults will live into their senior years. Aronsohn says that’s good news, but it presents a new slate of challenges for a state already struggling to offer support.

“You’re talking about housing, you’re talking about employment, you’re talking about any of the service supports. We need to make options available. Integration into the community is a wonderful goal for most people, but it’s not for everybody in all situations,” he said.

New Jersey - Murphy Pitches More Money to Serve People with Disabilities, Mental Health Conditions
By Kim Mulford, Cherry Hill Courier-Post,
March 7, 2019
In his budget proposal this week, Gov. Phil Murphy announced he wants to pour $22.5 million in new funding to care for people with developmental and intellectual disabilities, including $9.5 million in state and federal funding to serve residents with special needs and mental illness. 

Advocates are urging legislators to approve the plan. Affected families have long complained about difficulties finding proper psychiatric care, in-home behavioral services and medical treatment, leading to lengthy hospital stays and frequent trips to hospital emergency departments. 

Suzanne Buchanan, executive director of Autism New Jersey, called the governor's proposal "encouraging."
"Parents across the state are lost when trying to identify and access effective treatment for their loved ones with autism and severe challenging behavior," said Buchanan, a psychologist and behavior analyst. "We strongly recommend the Legislature approve this funding and look forward to working with the administration to ensure the most effective use of these critical resources to promote safety and basic quality of life for our most vulnerable families."

Since the Department of Human Services' Dual Diagnosis Task Force issued recommendations to overhaul the system more than a decade ago, New Jersey has done little to address the growing number of adults with disabilities and mental health problems, advocates say. 

Virginia - A Caregiver Raped Two Intellectually Disabled Women, Police Say. Both Gave Birth to Children.
By Justin Jouvenal, The Washington Post,
March 2, 2019
The mission of the center in Fairfax County is to “employ and support” people with disabilities, but a prosecutor said a worker sexually assaulted a 29-year-old woman with Down syndrome in its offices.
Police began an investigation in October 2017 after a doctor made a disturbing discovery: The woman was five months pregnant, authorities said.

She later gave birth.

The pattern played out again nearly a year later. Police say another client at the MVLE Community Center, a 33-year-old woman with intellectual disabilities, was raped. The case was reported to police in August 2018 after her doctor discovered she was pregnant. She also gave birth.

Last month, Bernard Betts-King, 60, a behavioral specialist at MVLE, was charged with sexually assaulting both women. DNA tests showed he was likely the father of the second woman’s child, court papers say. DNA results are pending in the other case.
Betts-King was held without bond last week after a Fairfax County prosecutor outlined some of the allegations at a Wednesday hearing. Betts-King’s attorney said his client denies the allegations.

Advocates say the case underscores a problem that has received less attention in the #MeToo era: the sex assault of the intellectually disabled.

Numbers produced by the federal Bureau of Justice Statistics for an NPR investigation last year found those with intellectual disabilities are sexually assaulted at seven times the rate of people without disabilities.

Arizona - Former Hacienda HealthCare Board Member Says Rest of Board Should Quit
By Stephanie Innes, Arizona Republic,
March 2, 2019
A former Hacienda HealthCare board member is speaking out about a patient rape case that he says has turned into a "political circus" and says the remaining board should resign.

In order to restore public trust, Phoenix pediatrician Dr. Kevin Berger, who was the only physician on the board, says Hacienda HealthCare's remaining five board members should step down.

"I think the structure of the board and its functioning has been set in its ways for many decades," Berger told The Arizona Republic.
"While I think there has been a time where they served Arizona very well, we are at a different time now and I think that needs to be recognized. ...
"I think that the board governance needs to be redone. I think that the mission statement needs to be redefined. I think that the ethics, policies, committees — everything — needs to be redone."

Adult-Sized Changing Tables A Basic Need, Families Say
By Patty Machelor, Arizona Daily Star, via Disability Scoop, March 5, 2019

For many families, having a clean, discreet place to change a child’s diaper is what makes it possible for them to be out in the community.For those raising children challenged by disabilities, that need might not end when the child is too big to fit on a conventional changing table.

That’s why Tucson moms like Marianne Scott and Amy Weaton want to see Arizona pass a law this legislative session requiring newly constructed public buildings, or a public building doing a bathroom makeover of $10,000 or more, to put in changing tables an adult can fit on.

“For us, it’s a basic human need,” said Scott, whose teen daughter has to wear a diaper due to her disabilities.

“Whenever we leave our home, this is a concern that comes up.”

State Rep. Richard Andrade, a Glendale Democrat, said he sponsored HB 2529 because it seemed a simple fix, a “no-brainer.”

Caring for a teen or an adult child with certain disabilities, or an elderly parent with incontinence, is challenging enough for families, he said. This proposal is a simple way to make things a bit easier, he said.

Andrade said the bill received unanimous, bipartisan support during hearings last week, but it is now stuck because Rep. Anthony Kern, a Glendale Republican, doesn’t agree with it. Kern, the rules committee chairman, decides which bills move forward.

Michigan - Group Living in Ann Arbor: OK for Young Professionals and Students, but not for Adults with Disabilities???
By Jill Barker, The DD News Blog, March
This is about an article in the Ann Arbor News, “Group-living townhouses with co-working space will target young professionals in Ann Arbor” by Ryan Stanton, 2/23/19. 

You may detect a note of sarcasm on my part, when I describe what is being proposed here in Ann Arbor to much acclaim. If this were proposed by families of adults with intellectual and developmental disabilities, as a housing and service solution for their family members, some advocacy groups would denounce the effort as an attempt to re-institutionalize people with IDD and segregate them from society by providing services where they live targeted to their specific needs. 

Because this project is designed for young professionals, with the idea of helping them save money and share services with other like-minded adults, we are unlikely to hear cries of righteous indignation and accusations that it is just a scheme to oppress and infantilize young professionals. This is a complaint you would inevitably hear if this was built for people with disabilities. I think it would be a fine idea to have an option like this for people with disabilities who prefer group living and can benefit from it.

To be clear, housing people with disabilities was not an issue in this article, and I don't mean to imply that there was any hint of discrimination by the city or developer against any particular group of people. This is just me, struck by the contrast in how we think about non-disabled people just living their lives, and people with disabilities being caught up in controversies over other people wanting to decide for them how they should live.

A developer will build 11 six-bedroom units, that city officials initially assumed was for students used to dorm-like living:
“This is emphatically not a student housing project,” said developer Heidi Mitchell of Prentice Partners of Ann Arbor. “It is actually a co-living, co-working space with (shared) vehicles targeted toward young professionals.” 

Do I detect a whiff of discrimination here, not to mention segregation? Definitely not! This is for normal people choosing to live together who also lead their own lives and find it easier and less expensive when so many of their needs can be met in one place.

But six bedrooms in one townhome??? That sounds suspiciously like a group home, congregate living, an intolerable predicament if the people who were living there were disabled. And there is no doubt about it, 11 town homes in close proximity to each other with six people living together in each unit definitely makes it an institution. 

Oh, the horror! Bring on the Young Professional Self-Advocates who know exactly how every young professional should live and will work tirelessly to stop this project in its tracks!

New York - Direct Support Professionals Deserve to Make a Living
By Deziar Whitlock, The Buffalo News,
March 1, 2019
Direct support professionals who support people with disabilities are underpaid, plain and simple. I worked in the fast food industry for five years before deciding to move on and work with the Cantalician Center. I’ve seen how both jobs operate and it’s unfair that those that work in the fast food industry can make more than a DSP.

The work that we do to support people with their everyday life is a colossal job. I continually worry about people’s safety. I worry about making sure people get their medication in the right dosage and at the right time. I worry about making sure people eat healthy and at the right time so it doesn’t conflict with any medications they may take so that they do not become ill and have to trek back and forth to the doctor’s office or worse the hospital.

The responsibility I have in my job as a DSP far outweighs any job responsibility I had working in the fast food industry.

Unfortunately for me, my co-workers and the people we serve, the person serving the fries
earns more that the dedicated support professionals who are making sure an individual doesn’t choke on them. We strive to ensure people are treated with dignity and that they have the best quality of life possible, because that is what every person deserves.

Making ends meet as a DSP is hard. I also work at a group home making less than $12 per hour. A fast food restaurant would be paying me over $13. In order to pay for my apartment, car and college tuition, I have to work my regular scheduled hours, which is 24 hours a week and 16-hour shifts on the weekends. This is on top of my full-time job.

At one point, I was offered a job working elsewhere for more money. It was so tempting. I really had to think about what would be best for me as a college student who also has to have time to study, but I remembered the ladies I work with. I love them like family. I was devastated at the thought of leaving the “ladies” who are sassy and so happy all the time.

The truth of the matter is I shouldn’t have to think about whether I should move on and leave them. DSP’s like myself have people’s lives in their hands. So I choose serving people over serving cheeseburgers even though it means I have to work for less pay. It will never make sense to me that I have to make that choice.

VOR Bill Watch:
There are currently seven bills in Congress (four in the House of Representatives with three companion bills in the Senate) that would discriminate against the more disabled members of the IDD community. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (Click on each bill to view details)

H.R. 1342 & S. 548 - This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities. MFP has been renewed for first three months of this year. The new bills would renew it for another 5 years.

H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care".

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. Bot issues deserve clean, stand-alone bills.
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]
Notice: Meetings of the President's Committee for People with Intellectual Disabilities (PCPID)

The Administration for Community Living announced earlier this week that there will be two meetings in March to prepare their 2019 report to the President. Currently, the report is a self-congratulatory piece on their work to move all individuals with IDD to full integrated employment, close sheltered workshops, eliminate 14 (c) wage certificates.

In their discussions, one member of the committee have raised the matter that some individuals will never be able to participate in competitive integrated employment and that the opportunities for work that these individuals currently enjoy will be taken away from them, resulting in their spending hours every day on the sofa watching television or being driven in a van to the mall. Nonetheless, the committee plans to move ahead with the elimination of these programs.

What has happened to our system, that the people charged with protecting and providing services for the IDD community have turned their backs on the most severely disabled members of that community?

The PCPID meetings are open to the public, though the public is not allowed to comment. The schedule for these meetings is:

Thursday, March 21, and Friday, March 22, from 9:00 a.m. to 4:30 p.m. (EST) (same time both days)
Hubert H. Humphrey Building, 200 Independence Ave. SW, Room 800, Washington, DC 20201 . The public is invited to attend, but not comment, or to listen in remotely, at (888) 949–2790 using the pass code 1989852.

The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Plan now!
This will be an important year for I/DD advocacy
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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