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A Voice Of Reason

Speaking out for people with
intellectual & developmental disabilities



836 S. Arlington Hts Rd.  #351

Elk Grove Village, IL  60007

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Please 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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JUNE 8 - 13, 2018

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

VOR Membership Drive:



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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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 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.


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.


Exceptional Parent Magazine
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or call us toll-free at 877-399-4867

And of course, visit our website at:

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:

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:

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.

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

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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

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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, 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 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.

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

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February 9, 2018

VOR Weekly News Update
News and views for VOR Advocates

Washington-Winter 2


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 

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JUNE 9 - 13, 2018

Registration is Open!


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

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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:

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:

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!



2. Comments to the IACC from an MD Addressing Needs of People with Severe Autism IACC CommentsThe following are excerpts from comments from Lee Wachtel, MD, a child psychiatrist at the Kennedy Krieger Institute in Baltimore, MD to the Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD).

Hello, my name is Lee Wachtel, and I am a child psychiatrist working at the Kennedy Krieger Institute in Baltimore, where I run an inpatient unit for children, adolescents and young adults with autism who require hospitalization for severe, often life-threatening, and certainly life-limiting, challenging behaviors. I have been in this position for nearly 15 years, and would like to speak today on behalf of my patients, and their families, many of whom have remained under our care at KKI for years, right into adulthood.

The vast majority of our patients are significantly afflicted, and would be characterized in the DSM5 [Diagnostic and Statistical Manual on Mental Disorders] as having autism requiring extensive supports and with intellectual disability. They don’t come to KKI for their autism or ID, however, but rather for the severe self-injurious, aggressive and disruptive behaviors that they display, often within the context of further severe psychopathology that can run the gamut from anxiety, mood and psychotic disorders, and more. These kids are really suffering, and so are their families.

I encourage the IACC, and autism community in general to consider several things. First, the IACC needs to prioritize research on the treatment of self-injurious and aggressive behavior. These behaviors are highly prevalent — studies show about 1/3 of autistic kids engage in SIB and over half in aggressive behaviors, yet very little attention is paid to this devastating problem. The IACC should host a panel focused on these dangerous behaviors. Not only are these behaviors dangerous to the children and families involved, but they often preclude participation in inclusive, community-based educational and vocational programs. These behaviors are often physiological in etiology — typically from a co-morbid psychiatric disorder, and do not represent “communication” from non-verbal individuals. It is a medical problem that requires medical solutions.

Second, the IACC must promote a choice-based approach to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.

Finally, we need to invite more parents of severely affected autistic children to have seats on the IACC. These parents represent children who can’t represent themselves, and they require a voice.

Thank you.

Read the Dr. Wachtel's full comment here (courtesy of Jill Barker's DDNews Blog)

The comments are available for download here



3. Virginia - Lynchburg-area Legislators Eye Budget as Next Front in Fight to Keep Central Virginia Training Center Open

By Margaret Carmel, The News & Advance, February 6, 2018

While the package of bills proposed by Lynchburg-area legislators in both chambers to keep Central Virginia Training Center open has an uncertain future, all eyes are on upcoming budget deliberations where the fight to keep the facility’s doors open will continue.


Tuesday morning, the Senate Finance Committee voted unanimously to continue SB 835 — carried by Sen. Mark Peake, R-Lynchburg, and aimed at preventing the facility’s closure — to the General Assembly’s 2019 session with a nod from Committee Chair Sen. Emmett Hanger, R-Augusta, that discussions about the possibility of funding CVTC will be a factor in budget talks.

“We’re going to work on this in the budget and chart a course of action for CVTC and Madison Heights,” Hanger told the committee.

In a phone interview later Tuesday, Peake said the aim is to continue operations at the state-run facility for individuals with intellectual and physical disabilities on a limited basis. The number of residents being cared for at CVTC has been dropping steadily from 426 in March 2010 to 113 as of last month.

“We’re going to keep fighting to get the money necessary from the budget to keep it open,” Peake said. “We’re talking about the three or four buildings to house the current residents and some of the possible ones that might move over from Southwest Virginia Training Center.”

CVTC currently is slated for closure in 2020 as part of a 2012 settlement agreement with the U.S. Department of Justice that stemmed from an investigation by the department into the facility. As part of the agreement, the state decided to close four of its five training centers in favor of moving the majority of those under state care to community group homes. Southwest Virginia Training Center in Hillsville is scheduled to close July 1, 2018.



3. New Jersey - Democrats Call for NJ To Reopen Hagerdon Psychiatric Hospital

By Lilo H. Stainton, NJ Spotlight, February 9, 2018

New Jersey should reopen a Hunterdon County psychiatric hospital in order to properly treat hundreds of senior citizens with severe mental illness who are now living in facilities critics claim are overcrowded and potentially violent, according to a pair of Senate Democrats.

Sens. Richard Codey (D-Essex), a longtime advocate for individuals with mental illness, and Joseph Vitale (D-Middlesex), the health committee chairman, introduced a resolution earlier this week calling on the new administration to put the Hagedorn Gero-Psychiatric Hospital back into use to improve care and reduce the strain on other state hospitals. The proposal does not include a price tag.

The measure blames former Gov. Chris Christie for closing the Glenn Gardner facility in 2012 as part of an ongoing effort to shift patients into less restrictive facilities, a decision that required 255 residents to be moved to community settings, nursing homes, and other state hospitals. Codey made a similar request to Christie in August, to no avail.

"While it is appropriate and desirable that patients with mental illness be treated in the least-restrictive setting possible, there will always be some patients whose illness prevents them from living safely and fully in the community, whose age or condition render them particularly vulnerable if they were to be hospitalized with other mentally ill patients, or whose illness requires stabilization that only a specialized psychiatric hospital can provide," the resolution reads, according to an early draft of the proposal.


The Senator Garrett W. Hagedorn Gero-Psychiatric Hospital first functioned as a tuberculosis hospital until it was converted in the late 1970s to treat seniors with mental illness. Four decades later, it began accepting patients of all ages; the population peaked in April 2010, with nearly 300 patients, according to the Senate resolution. Christie closed the facility in 2012.

That decision required some patients to be relocated to other hospitals and, according to a list of concerns filed with the state in December by Greystone board members, added 100 elderly individuals annually, on average, to the population at the Glenn Gardner facility. Christie also presided over the closure of two state-run developmental centers, in Woodbridge and Totowa, which shifted an average of 35 patients a year to Greystone's census, the board said.

Read the full article here

4. Ohio - Developmental Disabilities Board Faces Deficit in 2019
By Hasan Karim, The Marion Star, February 3, 2018

A Marion County agency that provides programs for people with developmental and intellectual disabilities faces a potential budget shortfall as the need for services increase amidst financial constraints.

By 2019, the Marion County Board of Development Disabilities Services is projected to operate in a deficit. The shortfall could impact hundreds of local residents with disabilities and their families, said Nicole Workman, director of communications for the board.

In coming years, it could mean the cut of services not mandated by the state, such as an early intervention program that provides at-home services for toddlers with disabilities.

Workman said the potential deficit stems from a lack of new funds. A large chunk of local funding comes from a five-year renewal levy originally passed in 1996. Along with two other smaller renewal levies, it generates approximately $3 million.

Workman said the looming deficit comes at a time when the board coordinates services for more than 800 county residents, taking in 103 new clients in 2017.

"This is really 20 years in the making," she said. "When the need for your services grows and you can't obtain more funding, at some point you simply run out of money."

Fifty-two percent of the board's total operating budget comes from local taxpayers, with the rest coming from state, federal and miscellaneous funds.

While the existing levies continue to be renewed by taxpayers, attempts to generate new funds have been rejected by voters 10 times. The last new levy placed on the ballot by the board in November 2016 was defeated by a margin of 4,783 votes.




5. Florida - First Orlando-area Housing Complex for Adults with Developmental Disabilities Opens. 

By Clay LePard, ClickOrlando, February 8, 2018

Those with developmental disabilities finally have a place to live designed specifically for them in the Orlando area. 

A ribbon cutting for Quest Village in the Waterford Lakes area took place Thursday. The 40-unit complex houses only tenants with developmental disabilities.

"This is the only community of its kind in central Florida," Quest CEO John Gill said. The project was created through Quest Inc., a nonprofit that helps those with developmental and intellectual disabilities. 

"I like it that people are looking out for me," resident Alex Fitzgibbon said. Fitzgibbon lives his life on the autism spectrum, but appreciates that the new housing development is tailored for residents like him.

"You don't have to your parents to tell you what to do, how to do it, when to do it," he said. "You can wake up and do it on your own and how you want to do it."

So far, 30 residents have already moved in. "There are 50,000 individuals with a developmental disability turning 18 each year," Gill said. "Just like typical people, they want to live on their own. But they need a little help." 


6. Michigan - Creating a Community For People with Developmental Disabilities

By Doug Tribou, National Public Radio, February 4, 2018

Most of the 4.5 million adults with intellectual or developmental disabilities in the U.S. live with their parents. As everyone ages, finding long-term housing can pose big challenges.

Saline is in Southeast Michigan, not far from the University of Michigan campus in Ann Arbor. Patty and Karl Rabe's house is in a quiet subdivision here. Patty's a nurse anesthetist, and Carl is an IT manager. And they've got a small, friendly dog named Sherlock. The Rabes' son Bill is 28. He's friendly and social, but his mom says he functions at about the level of a 6- to 10-year-old. Still, he holds down two part-time jobs, is a Special Olympian and likes to play video games.

DOUG TRIBOU: What kind of games do you like?

BILL RABE: Hockey.

TRIBOU: (Laughter) You watch movies in here, too?

B. RABE: Yep.

TRIBOU: Karl's 58. Patty's 61. For years, they've searched for a long-term housing solution for their son. Patty says he can do some things himself but needs to have someone around.

PATTY RABE: When it comes to any kind of emergency or unusual situation, he couldn't be trusted to make good decisions about what to do.

TRIBOU: The Rabes found other local families in a similar situation. Eventually, they began planning a building with four condominiums for their children with a common area for a caregiver. Then they met developer Bill Godfrey, who started thinking a little bigger.

BILL GODFREY: We came back with this idea that what was really needed was just to build a regular neighborhood for the general public and include housing for people with special needs it and design that housing with them.

TRIBOU: Godfrey's team bought land from the city with enough room for two condo buildings for those with disabilities and 26 single-family homes and townhouses anyone can buy. Planned communities for the disabled aren't a new idea, but they are unusual. The site plan shows a tree-lined cul-de-sac. The public library and middle school are across the street. The condo started at $180,000, houses at $250,000 - attractive prices in a tight market. And most have already sold. The Rabes bought one to be near their son's condo. And Patty's excited about her future neighbors.

P. RABE: A lot of times, when people with disabilities want to come into a neighborhood, there's a lot of pushback, and the people are afraid. That really gives me a lot of peace of mind that people know that these guys will be here.

TRIBOU: While most advocates agree that integrating people with disabilities into society is crucial, there's debate over how best to do that. Desiree Kameka is with the Madison House Autism Foundation, based in Maryland. We spoke by Skype. Kameka says, unlike in traditional group homes, these families are in control.




7. New Mexico - Senate Approves Guardianship Reform  

By Colleen Heild, Albuquerque Journal, February 7, 2018

The New Mexico Senate on Wednesday approved a two-pronged measure to provide “immediate relief” to those who have struggled for years with the abuses of a closed legal guardianship/conservator system, while creating the framework for a comprehensive system overhaul by 2020.


The unanimous vote, which sends the legislation to the House of Representatives, comes after what one senator called a “Herculean” effort to address failings of the current system – as evidenced by the recent embezzlement of millions of dollars from guardian or conservator clients of two now-defunct Albuquerque firms.

Under the measure approved Wednesday, court hearings that are now closed would be open to the public as of July 1. Family members would have more access to guardianship records and visitation wouldn’t be as easily thwarted by commercial guardians, who also have been accused in some cases of profligate spending and excessive fees. Nonfamily conservators would have to post bonds in case financial impropriety occurred.




8. Washington - SAIL (Self Advocates In Leadership) is The Arc - Washington State

From Because We Care - Beyond Inclusion, February 4, 2018

I have had issues with the group SAIL – Self-Advocates in Leadership (Washington) for some time since I have witnessed this group dis-regard self-advocates who may not agree with the agenda of this group.  SAIL has typically had a representative testify every year to various committees in Olympia claiming that all institutions should be closed. SAIL has had consistent messages that oppose person-centered planning with regards to choice of residential setting.  This group claims to represent ALL people with disabilities and fails to understand the heterogeneous make up of this population.

This past year the previous Self-Advocacy Coordinator  who actually worked for the Arc of Washington (Noah Seidel) took a position in the Washington State Developmental Disability Ombudsman Office. SAIL did not renew their non-profit status with the Washington State Secretary of State and the organization non-profit status expired February 28, 2017 and  SAIL administratively Dissolved  as of July 3, 2017. SAIL is now run by The Arc – Washington State and the new Self-Advocacy Coordinator is Cheryl Monk.  SAIL is not an independent organization managed and lead by people with developmental disabilities as many are led to believe but is some sort of committee within The Arc- Washington State.

There are other Self-Advocates in our state that do not promote the same agenda as the members of The Arc – SAIL.  These self-advocates have a variety of experiences and want to preserve choice for everyone.

One such self-advocate is a young man who lived at Fircrest for 6 years.  He moved to supported living during March 2016.  Even though he has a guardian, it was his choice to move and he has worked with his residential team, community, family, friends, employer, job coach and healthcare providers to make this transition a success.  The supports are critical for him to remain in supported living and the collaboration is essential to make it all work.

Read the blog here



9. First Baby with Down Syndrome Wins Gerber "Baby of the Year"

By Ashley May, USA Today, February 7, 2018

A 1-year-old from Georgia is the first child with Down syndrome to become a Gerber baby. 

Lucas Warren from Dalton, Ga., was chosen from more than 140,000 constants as the winner of Gerber's 2018 Spokesbaby contest.


“Lucas’ winning smile and joyful expression won our hearts this year, and we are all thrilled to name him our 2018 Spokesbaby,” Bill Partyka, president and CEO of Gerber, said in a statement. “Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby, and this year, Lucas is the perfect fit.” 

Lucas is the first child with Down syndrome to win the title since the contest began in 2010.




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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.

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 at least 48 hours in advance of the task force meeting.

For more information, visit:

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



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.



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