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A Voice Of Reason

Speaking out for people with
intellectual & developmental disabilities

 







 VOR

836 S. Arlington Hts Rd.  #351

Elk Grove Village, IL  60007





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Donate to VOR today that we may continue to provide a voice for those who cannot speak for themselves.

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Many companies and employers match employee donations to non-profit organizations like VOR.

We now feature a quick and easy link on our Membership & Donation
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SAVE THE DATE!

VOR'S
ANNUAL MEETING & LEGISLATIVE INITIATIVE

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will be held at the

HYATT REGENCY CAPITOL HILL
in
WASHINGTON, D.C.

JUNE 8 - 13, 2018









































VOR Membership Drive:

  

A MEMBERSHIP LETTER FOR YOUR FAMILY GROUP


As part of our 2017-18 Membership Drive, we have created a letter that we hope you will send out to the members of your family organization. The purpose of the letter is to show the other families in your group who advocate locally that VOR can help them advocate nationally and unite with families in other states with shared experiences.


Please ask your family group to print copies of this letter and include them in their mailings. You may include this with your newsletters, advocacy campaigns, or post it to your group's website. You may also consider including this letter with the "Thank You" letters that go out to members to after receiving donations to your group.


Download the Membership Letter here



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Membership Matters!

We are only as strong as our supporters

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Please keep your membership current!



If you are unsure when your membership will expire, please write to
info@vor.net






























FREE OFFER
 


Exceptional Parent Magazine
(EP)
is now available for free to digital subscribers!

Click here to subscribe:
New.EP-Magazine.com



























Free One-Year Digital Memberships for Direct Support Professionals


We want to show our appreciation to the people who provide the long-term care for our loved ones with Intellectual and Developmental Disabilities.


We are offering 100 free one-year digital subscriptions to VOR's weekly newsletter and Action Alerts. The subscriptions are available to Direct Service Professionals and Nursing, Medical, or Dental Staff at state-run or privately operated Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID).


Members are encouraged to share this offer to caregivers in their loved one's facilities. There will be a limit of five subscriptions per facility. Subscriptions will be active until January 1, 2019.


To apply, simply send an email to info@vor.net with the subject line Free Digital Subscription and include:


1. The name, address, telephone, and email address of the applicant

2. The name and address of the facility at which they are employed

3. The name of the VOR member who has referred them.
































































































PRESS CONTACTS NEEDED!

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VOR's Marketing Committee is compiling a list of media contacts who are familiar with I/DD issues and understand the importance of ICF's, Sheltered Workshops, and other services that impact the lives of our family members.


If you know of any reporters or media outlets in your area, please send their name, the name of their organization, and contact information to us at info@vor.net















































VOR's
Website Features
Information and
Resources for
Dental Services
in several states throughout the country.

Click the button below to see VOR's Dental Resource Page

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WHAT'S HAPPENING IN YOUR STATE?
Share the news with us at 
info@vor.net
or call us toll-free at 877-399-4867

And of course, visit our website at:
www.vor.net












































Support VOR while you shop!


If you shop at Amazon, shop at AmazonSmile


AmazonSmile is a simple and automatic way for you to support VOR every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same prices, selection and shopping experience as Amazon, with the added bonus that Amazon will donate a portion of the purchase price to VOR.


To shop at AmazonSmile simply go to smile.amazon.com from the web browser on your computer or mobile device. Fill in the form and select "VOR - Elk Grove Village".


You may also want to add a bookmark to AmazonSmile to make it even easier to return and start your shopping at AmazonSmile.


















































Guardianship Resources

VOR understands the valuable role that guardians play in the emotional and physical well-being of people with intellectual and developmental disabilities (I/DD). We want to ensure that guardians, the majority of whom are family members or close friends of the person with I/DD, have all the information they need to make informed decisions about this vital part of the safety net. 

Attacks on guardianship have become more frequent, especially with the advent of funding to promote Supported Decision Making as a replacement for guardianship. For more information, see the links on the VOR Website:

http://vor.net/get-help/more-resources/item/guardianship

Many states have guardianship associations affiliated with the National Guardianship Association (NGA)


The NGA advocates for high quality standards in guardianship and certification of guardians and the protection of the rights of incapacitated adults. That said, as with any large advocacy organization, you may not agree with all their policy positions, but they are a good source of information and an avenue for family and friends who have taken on the responsibility of guardianship to make sure their perspective is represented in proposed policy changes.

The NGA lists affiliate organizations for 25 states:

www.guardianship.org/
state_affiliates.htm


If your state is not listed or you know of other local or state guardianship organizations, send VOR an email and we will add a link to our Website.









































February 2, 2018

VOR Weekly News Update
News and views for VOR Advocates


Washington-Winter 2

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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

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VOR's
ANNUAL MEETING & LEGISLATIVE INITIATIVE
 
HYATT REGENCY CAPITOL HILL
 WASHINGTON, D.C.
  
JUNE 9 - 13, 2018

Registration is Open!
~~~~~~~~~~~~~~~~~~
  
CLICK HERE TO REGISTER FOR THE EVENT
   
CLICK HERE TO RESERVE ROOMS AT THE HYATT

   
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Saturday, June 9:
Board of Directors Meeting, Committee Reports, State Coordinators' Reports on the State of our States,
Legislative Committee Reports

Sunday, June 10:
Panel Discussion: Engaging Advocacy in Your State, Guest Speakers (TBA), Legislative Agenda: Review of the materials we are presenting on Capitol Hill
Optional - Sunday Dinner At The Dubliner

Monday - Wednesday, June 11-13:
Hill Visits w. Members of Congress and Legislative Aides

MORE DETAILS TO COME!
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VOR and YOU

1. Registration and room reservations are open for VOR's 2018 Annual Meeting and Legislative Initiative

In case you missed the notice above, we are proud to announce that registration is open for the 2018 Annual Meeting and Legislative Initiative.


We hope that you will register early, which allows us the flexibility to add more rooms to our room bloc and to make better estimates of the materials we will need for the conference. Early registrants get a discount rate, with three tiers of pricing for both members and non-members (whose enrollment in the event comes with a one-year membership).


Pricing for registration is:

 

VOR Members:

$75 per member if paid by March 18, 2018

$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 (Regularly $45)

$105 per person if paid by March 18, 2018

$125 per person if paid by April 30, 2018

$150 per person if paid after May 1, 2018


To register, please click here, or paste this link into your browser:

 https://interland3.donorperfect.net/weblink/weblink.aspx?name=E140301&id=7


The event 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. The price is $279 per night, a rate that is actually quite reasonable for Washington, D. C. at that time of year. To reserve your accommodations at the Hyatt for the event, please click here or paste this link into your browser:

https://aws.passkey.com/gt/215147596?gtid=c2fe90a300e2dd9f397f1a8de2f51707


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!


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2. VOR - A VOICE OF REASON


You may have noticed that we have made a change to our branding. We have added the line "A Voice Of Reason" to our logo.


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Our name has not changed. Our mission has not changed. We are still VOR. We are still pronounced VEE-OH-ARR. Our name does not rhyme with four, and we do not refer to ourselves as "A Voice of Reason". This is just a change in our branding, as approved by our Board of Directors at the request of numerous VOR members over quite a number of years.
The next time someone asks you what V-O-R stands for, you can say, "We stand for high quality care and human rights for all people with intellectual and developmental disabilities." And you can add, "We like to think of ourselves as a voice of reason."


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NATIONAL NEWS

3. Medicaid Transportation at Risk in Some States
 
By JoNell Allecia, Kaiser Health News via Disability Scoop, January 30, 2018


Unable to walk or talk, barely able to see or hear, 5-year-old Maddie Holt waits in her wheelchair for a ride to the hospital.

The 27-pound girl is dressed in polka-dot pants and a flowered shirt for the trip, plus a red headband with a sparkly bow, two wispy blond ponytails poking out on top.


Her parents can’t drive her. They both have severe vision problems; and, besides, they can’t afford a car. When Maddie was born in 2012 with the rare and usually fatal genetic condition called Zellweger syndrome, Meagan and Brandon Holt, then in their early 20s, were plunged into a world of overwhelming need — and profound poverty.


“We lost everything when Maddie got sick,” said Meagan Holt, now 27.


Multiple times each month, Maddie sees a team of specialists at Seattle Children’s Hospital who treat her for the condition that has left her nearly blind and deaf, with frequent seizures and life-threatening liver problems.


The only way Maddie can make the trip, more than an hour each way, is through a service provided by Medicaid, the nation’s health insurance program started more than 50 years ago as a safety net for the poor.


Called non-emergency medical transportation, or NEMT, the benefit is as old as Medicaid itself. From its inception, in 1966, Medicaid has been required to transport people to and from such medical services as mental health counseling sessions, substance abuse treatment, dialysis, physical therapy, adult day care and, in Maddie’s case, visits to specialists.


“This is so important,” said Holt. “Now that she’s older and more disabled, it’s crucial.”


More than 1 in 5 Americans — about 74 million people — now rely on Medicaid to pay for their health care. The numbers have grown dramatically since the program expanded in 32 states plus the District of Columbia to cover prescription drugs, health screening for children, breast and cervical cancer treatment and nursing home care.


With a Republican administration vowing to trim Medicaid, Kaiser Health News is examining how the U.S. has evolved into a Medicaid Nation, where millions of Americans rely on the program, directly and indirectly, often unknowingly.


Medicaid’s role in transportation is a telling example. Included in the NEMT coverage are nearly 104 million trips each year at a cost of nearly $3 billion, according to a 2013 estimate, the most recent, by Texas researchers.


Continued


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4. HCBS Enrollment is Up, but Expenditures per Participant are Down
 
By Lisa A. Bowers, McKnight Senior Living, January 29, 2018

The number of participants and overall expenditures for state Medicaid 1915(c) waiver programs increased from 2013 to 2014, but average expenditure per participant decreased during that time, according to a report on Medicaid home- and community-based services released this month by the Henry J. Kaiser Family Foundation.


Fifteen states allow for the provision of Section 1915(c) services at residential care, foster care and assisted living facilities, the report noted. Arizona, Rhode Island and Vermont do not offer any Section 1915(c) waivers.


Overall in 2014, according to the report, Section 1915(c) waivers represented half of total Medicaid HCBS enrollment across the three main Medicaid programs — the mandatory home health services state plan benefit, the optional personal care services state plan benefit and optional Section 1915(c) HCBS waivers. Seniors and adults with physical disabilities were 54% of all Section 1915(c) waiver enrollees, followed by people with intellectual or developmental disabilities (I/DD, 42%).


Read the full article here


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STATE NEWS

5. Texas - Pressure from Feds May Have Led to Special Ed Enrollment Cap

By Aliyya Swaby, The Texas Tribune, February 1, 2018

In the wake of a scathing federal report last month blasting Texas for excluding thousands of students from special education, a wave of accusations has rolled through the state’s education community.


The federal government admonished the state for creating the exclusionary policy and charged state officials with cleaning up the mess. Gov. Greg Abbott then blamed school districts for shirking their responsibility to teach kids with disabilities.


In retaliation, school administrators and teachers pointed fingers at former Texas legislators for first suggesting a cap on special education to cut costs. Amid the political infighting, parents held both state leaders and school officials accountable for perpetuating a system that kept so many children from accessing special education for more than a decade.


As the hunt continues for the ultimate culprit, some Texas educators and officials are now pointing back at the federal government.

They said the current narrative — that Texas leaders cut costs by capping the percentage of students who could receive the specialized tools and assistance they needed to learn — ignores the effect of changing federal policy on local actions. The federal government, they argue, had a big part in creating the problem it’s now hammering Texas to fix.


The Texas Tribune recently spoke with more than a dozen people who were in federal, state or local education leadership positions in the early to mid-2000s. They described a fierce battle between federal and state education officials on how and whether to test students with disabilities, resulting in mixed messages for school administrators and ultimately leaving thousands of kids without the tools they needed to learn.


The state and local leaders say the U.S. Department of Education pressured Texas to decrease the number of students in special education, especially in the early 2000s.


Continued


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6. Maine - Bills to Increase Maine's Accountability for Intellectually Disabled Get Strong Support

By Noel K. Gallegher, Portland Press-Herald, January 31, 2018

Parents and caretakers said Wednesday they strongly support two bills to increase the accountability and transparency of the Department of Health and Human Services’ role in overseeing care for people with intellectual disabilities and autism.


“I would feel better,” Darla Stimpson Chafin told the Legislature’s Health and Human Services Committee at a public hearing for L.D. 1676.


“Parents of adults in the system want to know that these people we love will be treated with the same respect and basic safety that we all expect in our lives,” said Chafin, whose 50-year-old daughter is autistic.


The bill would create an independent panel to review deaths and serious injuries, and would also require DHHS to hire a full-time registered nurse to review reports and work with the panel, and make annual reports to the committee.


The bills come in the wake of a scathing federal report released last fall that found the department neglected to investigate 133 deaths and did not properly report critical incidents including sexual assault, suicidal acts and serious injuries over a 2½-year period.


“The report was very troubling, but even more alarming was the silence that followed. The fact that there was no oversight body to catch this failure is almost unbelievable,” said bill author Rep. Dale Denno, D-Cumberland.


A second bill, L.D. 1709, seeks to bolster the role of an existing but anemic oversight board – the Maine Developmental Services Oversight and Advisory Board.


Terri Earley said a review of deaths by an independent panel might have helped her get answers about her healthy, 21-year-old autistic son, who died of a seizure six months after moving into a group home. He was discovered in the morning, not by overnight caretakers who were supposed to check on him every 20 minutes and listen all the time.


“We really were left with lots of questions,” Earley told the committee: Were the employees awake? Was the baby monitor on? “These are answers we’ll never know.”


Continued



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7. Indiana - Mother Makes Plea to Include Disabled Children in Silver Alert Updates

By Erica Irish, The Statehouse File, January 30, 2018

In 2016, Jennifer Dawson said her worst fears as a parent came true.
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The Brookston mother told lawmakers in a House Family, Children and Human Affairs Committee Tuesday that her then 15-year-old autistic son, Brock Dawson, wandered away from his Terre Haute residential care facility’s campus.


For several days, the Dawson family had no trace of their son. But, when they tried to get the word out, they soon learned that Indiana’s missing child notices would not apply to him.


When a child is abducted in Indiana, the Indiana State Police issue an Amber alert using the Emergency Alert System (EAS). Smartphones, televisions and other devices linked to the EAS all receive notice of the missing child.


Because Brock left of his own free will, however, the state could not issue an EAS-level alert.

“As a mom, as a parent, I didn’t really care what statutes were at that point,” Jennifer said.


Rep. Sharon Negele, R-Attica, has partnered with Jennifer Dawson to update how and when the public is told about missing children. Her bill, House Bill 1248, expands silver alerts, now used for elderly citizens who wander from their homes or care centers, to include children with developmental disorders who leave an area and lack the skills to find their way back.


“This isn’t an autistic issue,” Jennifer said. “This is an issue of any child who is diagnosed with a disability. Those kids can easily be manipulated and caused to trust somebody.”


HB 1248 also removes a mandatory 24-hour waiting period before the alert is sent out.


Brock Dawson was found four days after he went missing. That was four days without his medications, his mother testified. His family also learned that he had been picked up by a woman, who he traveled with to Illinois and who used him to solicit money, Jennifer Dawson said. At that point, her son was legally abducted and would have been eligible for the Amber alert.


Continued


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8. Delaware - New Director to Lead Division of Developmental Disabilities Service

Delaware State Govt. Website, January 30, 2018

Department of Health and Social Services (DHSS) Secretary Dr. Kara Walker announced the appointment of Marie Nonnenmacher, a former deputy director of the Division of Developmental Disabilities Services (DDDS), to lead the division. She will begin her duties Feb. 5.

“I am thrilled that Marie is rejoining our Department as director of DDDS,” Secretary Walker said. “Her strong experience working with individuals with developmental disabilities and their families will serve her well in this new role, as will her more than 35 years of public service across many departments in state government. With her Medicaid, budgeting and financial background, she understands how we can leverage federal and state resources to best support the more than 4,000 Delawareans we serve in the Division.”

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Nonnenmacher served as deputy director of the Division of Developmental Disabilities Services from November 2012 until her retirement in August 2017.


During her tenure, her accomplishments included producing the 2014-2019 renewal of the DDDS federal Medicaid Home and Community-Based Services (HCBS) waiver that received federal approval in less than 90 days. She also amended the DDDS HCBS Medicaid waiver to double the number of recipients and all individuals living in the family home enrolled for waiver benefits. And working with colleagues across DHSS, she developed a cross-disability employment program for young people age 14-25 called Pathways to Employment, funded by Medicaid.


Continued



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IN MEMORIUM

Donald Vitkus, Inspirational Survivor of The Belchertown State School, Dies at 74

By Dave Kassel, The COFAR Blog, January 26, 2018

Donald Vitkus, a survivor of the former Belchertown State School, whose life became an inspiration to many in the disabled community, died Wednesday of complications from a brain tumor.

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Many of VOR's members will remember Donald Vitkus. A long-time member of our organization, Donald attended several of our Annual Meetings in D.C. Donald's own personal story resonated with us all, and we remember him fondly as we grieve his passing.



Vitkus was the subject of a book published in 2016 by Ed Orzechowski, vice president of COFAR and a founding member of the Advocacy Network, an organization for families and persons with developmental disabilities in western Massachusetts.


Orzechowski’s book, “You’ll like it here,” chronicled Vitkus’s childhood at Belchertown in the 1950s, and his life afterwards in which he dealt with lasting emotional effects of his experiences in the institution. After an initial failed marriage and a literal search with his son for his past among Belchertown records, he found his calling in recent years as an advocate for persons with developmental disabilities.


Vitkus’s wife, Patricia, said there will be a memorial service in Massachusetts at a later date.


Vitkus was sent by a foster family to Belchertown in 1949, when he was six years old.  He had a tested IQ of 41 and was labeled “a moron” in the state school records, according to Orzechowski’s book.  In fact, that assessment of Vitkus cognitive ability and similar assessments of many of his peers at Belchertown proved to be wrong. He and many of his fellow “inmates” had to use their wits to survive there.


Continued


Donations in Donald Vitkus' Memory may be sent to the Advocacy Network, PO Box 2071, Amherst, MA 01004-2071


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CALENDAR EVENTS:


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VOR'S
ANNUAL MEETING & LEGISLATIVE INITIATIVE
 
will be held at the

HYATT REGENCY
CAPITOL HILL
in
WASHINGTON, D.C.

JUNE 8 - 13, 2018
VOR Logo No By Line
=============================


AHCA’s ID/DD Hill Fly-in Event March 7, 2018

AHCA’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington DC for AHCA’s annual Hill Fly-In event on Wednesday, March 7, 2018.  Participants will hear from Congressional speakers and others.  The event runs from 8am – 10:30am 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 register (it is free to attend, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services, Dana Halvorson.
 
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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:

  • Friday, Feb. 23, 2018, 10 a.m.--2 p.m. CT, Boonville
  • Wednesday, April 18, 2018, 11 a.m.--3 p.m. CT, Lafayette
  • 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:

www.in.gov/fssa/ddrs/5455.htm.



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If you have a conference or group event that you would like posted here, please write to info@vor.com with a description
of your event.


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MEMBERSHIP MATTERS


There is Strength in Numbers. 
Keep VOR Strong!
 
The size of our membership base makes a noticeable difference to legislators, grant foundations, private donors - and to the advocacy organizations that share or oppose our views.

YOUR MEMBERSHIP COUNTS!


TO BECOME A MEMBER OF VOR

or to

RENEW YOUR MEMBERSHIP

Please click here:

Join-Renew Blue


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Volunteers Needed! Volunteers are needed for several committees and specific tasks. VOR relies on its members to perform many of its key responsibilities. Please join us, and help us to continue our mission.


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Please remember to "like" VOR on Facebook, and to follow us on Twitter. Every time you share our posts or re-tweet our tweets, you are helping VOR to reach a wider audience.

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VOR   836 S. Arlington Heights Rd. #351   Elk Grove Village, IL   60007 

Email: info@vor.net           Call toll free: 877-399-4867

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836 S. Arlington Heights Rd.
#351
Elk Grove Village, Illinois 60007
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