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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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Membership Matters!

We are only as strong as our supporters

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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.



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JUNE 8 - 13, 2018


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
is now available for free to digital subscribers!

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Share the news with us at
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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Information and
Resources for
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in several states throughout the country.

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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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".

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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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February 16, 2018

VOR Weekly News Update
News and views for VOR Advocates

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US Capitol, February 15, 2018


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. House Lawmakers Approve Changes to Americans With Disabilities Act 

By Michelle R. Davis, Disability Scoop, February 15, 2018

Amid vocal protests from disability rights activists, the U.S. House of Representatives approved the ADA Education and Reform Act Thursday on a vote of 225 to 192.

Critics say the controversial legislation, also known as H.R. 620, would severely damage accessibility protections laid out in the 27-year-old landmark Americans with Disabilities Act. The vote was split mostly along party lines with a dozen Democrats joining nearly all House Republicans voting in favor of the bill.


The legislation would require people facing accessibility barriers at public businesses — whether that means a lack of wheelchair ramps, special parking or bathroom facilities — to provide written notice of their concerns. Businesses would have up to 60 days to respond and then an additional 60 days to begin improvements.

Proponents of the bill say frivolous lawsuits around ADA compliance have created significant problems for small businesses, but disability advocates say the language in the ADA Education and Reform Act would essentially allow businesses to take no action on accessibility until a complaint is filed.



Further Reading from the Washington Post

Further Reading from The Hill


3. 2017 Report on Direct Support Professionals Released

By Dana Halvorson, American Health Care Association, February 14, 2018

According to a February 14, 2018, press report from the Administration for Community Living, The President’s Committee for People with Intellectual Disabilities (PCPID) recently released its 2017 report, America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy
2017 PCPID Full Report_0-1
People with an intellectual and developmental disabilities (ID/DD) rely on Direct Support Professionals (DSPs) for daily support that enables them to live in U.S. communities. 
The report describes the current state of the DSP workforce as a "crisis," noting that the average DSP wage is $10.72, most work two or three jobs, and the average annual DSP turnover rate is 45%. 
The full report can be viewed here.

Trump Budget Draws Strong Opposition From Advocates 

By Michelle Diament, Disability Scoop, February 16, 2018

President Donald Trump is calling for modifications to Medicaid and Social Security alongside cuts to federal spending on many programs that benefit people with disabilities.

The president’s annual budget proposal released earlier this week includes cuts to the U.S. Centers for Disease Control and Preventions’ Center on Birth Defects and Developmental Disabilities, reductions in housing assistance, wiping out spending on Special Olympics and supported employment and slashing funds for state councils on developmental disabilities.


“There are no winners in the president’s budget,” said Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network. “The president’s budget came with huge cuts in health care, housing, education and other important disability related programs.”

Funds for special education would go up slightly under the $4.4 trillion budget request for 2019 even as overall spending on education would drop. Given that the federal government has traditionally failed to meet its obligation to fully fund special education, Buehlmann said the small increase for the program is unsatisfactory.  “This just perpetuates a system that does not provide all the needed services and supports for students with disabilities,” he said.

Meanwhile, Trump continues to press for a fundamental restructuring of Medicaid. Instead of providing matching grants to help states pay for whatever services are provided through the entitlement program, the president wants states to get a set amount of money from the federal government each year. Under the plan, states could choose between receiving a certain amount for each beneficiary — an approach known as per capita cap — or receiving a block grant, essentially a lump sum from the federal government.

Disability advocacy groups have spent much of the last year opposing such changes to Medicaid, which they say would pinch states and compromise funding for everything from health care to home and community-based services for those with developmental disabilities.



5. Study: Many Parents of Children With Disabilities Don't Make Care Plans

By Sharita Forrest, Medical Press, February 9, 2018

Fewer than half of parents of children with intellectual and developmental disabilities make long-term plans about who will take over their child's care if the parent or other relative providing care dies or becomes incapacitated, a new study suggests.

More than 380 parents - primarily mothers - of individuals with disabilities participated in a web-based national survey about planning for their children's care. The parents who responded to the survey ranged in age from 40 to 83, and their offspring with disabilities were ages 3 to 68.

Parents in the study were asked whether they had completed 11 items related to planning for their child's long-term needs, such as identifying a successor to the current family caregiver, researching residential programs or establishing a special-needs trust.

More than 12 percent of the parents who participated reported that they had taken none of these actions to ensure that their child's needs would be met if the parent or other caregiver died or was otherwise unable to continue assisting the adult or minor child with disabilities.


Because people with disabilities are living longer, they are increasingly outliving their parents, and planning for their future care should begin as early as possible, said the study's lead author, Meghan Burke, a professor of special education at the University of Illinois.




6. Hawaii - Another Delay Sought For Surprise Home Inspections 

By Nathan Eagle, Honolulu Civil Beat, February 12, 2018

State health officials want the Hawaii Legislature to delay by two years a law requiring unannounced inspections of care facilities for the elderly and disabled, saying they may disrupt the lives of the residents and home operators.

Advocates for the elderly slammed the recommendation, which the Department of Health submitted in its annual report to lawmakers.

“It’s amazing how often the Department of Health puts the safety of our kupuna somewhere at the bottom of their priority list,” state long-term care ombudsman John McDermott said Thursday. “This is a very depressing report.”

McDermott and others fought for nearly two decades to get the law requiring unannounced inspections passed, which finally happened in 2016. Most other states already have this mandate.

A last-minute amendment inserted by Rep. Della Au Belatti, who chaired the House health committee at the time, delayed the start date for three years, making it effective July 1, 2019. The rationale was that this would give the department time to collect additional data and better understand how this would actually work.

Belatti did not respond to messages seeking comment about the latest proposed delay.


7. Ohio - State Program Aims to Help People with Disabilities to "Speak Up, Stay Safe"  

By Charita Goshay, CantonRep, February 11, 2018

In 2016, a 75-year-old bus driver was sentenced to three years in prison for sexually assaulting a woman while working for a nonprofit agency that serves people with developmental and intellectual disabilities.

Olivia Caldeira is working to put an end to such crimes. She is program director of the Columbus-based Center for Disability Empowerment, which recently launched “Speak Up/Stay Safe.”

The program, which is contracted by the Ohio Department of Developmental Disabilities, is designed to educate those with disabilities about boundaries and healthy relationships, and how to recognize and report abuse.

“The reason this was developed was because, as we are moving toward inclusion, and segregated settings such as workshops are being closed, and because everybody has the right to be in the community, there are concerns about health and safety,” she said. “How do we address some concerns? How do we teach people about their rights and help empower people so they can stay safe and as healthy as possible?”

Topics to be covered include: Healthy self-image, healthy relationships, boundaries, dating and sexuality, abuse, bullying and harassment, online safety, alcohol, tobacco, weapons and drugs, human trafficking and pedestrian safety.

Caldeira said people with disabilities must become more aware of their rights. She cited a 2012 Disability Abuse Project, which found that seven in 10 people reported being abused, with 90 percent stating they had been victimized on numerous occasions. Half of those surveyed said they’d been victimized more than 20 times.

“There are a lot of different kinds of abuse,” she said. “But with each trauma and abuse event, you become more predisposed to abuse, as boundaries and self-esteem are eroded. That’s why we talk about different kinds and how to recognize it.”



8. Connecticut - #Relationships: Teaching Sex to Students with Disabilities

By Vanessa De La Torre, CT Public Radio, February 12, 2018

The title for today’s lesson is written on the whiteboard of this Hartford classroom: #Relationships.

The youngest student, Rory, is 17 and in a wheelchair. The other young men — Edwin, Joath, and William — are sitting at a table with a few helpers. When the topic turns to strangers, there’s a bit of levity because they know the answer. Growing up, students have learned that strangers might have bad intentions.

Then the sex ed teacher presents this scenario: What if you’re at a bus stop and meet someone who seems really “nice”? So nice that they invite you to go for fries and a soda?

“William, what do you think?” asked Katie Hanley, who runs Oak Hill’s Center for Relationship & Sexuality Education. “You think it’s OK? Tell me more about that.”


At Oak Hill in Hartford, a not-for-profit agency with services for people who are developmentally or intellectually disabled, teaching students about boundaries and consent — along with the so-called birds and the bees — has become a critical part of the curriculum.

An NPR investigation last month found that people with intellectual disabilities are especially vulnerable to sexual abuse. Using unpublished data from the U.S. Department of Justice, NPR revealed that people with intellectual disabilities are sexually assaulted at a rate that’s at least seven times higher than for people who aren’t disabled.

Abusers see these victims as easy targets — some have trouble speaking, and perhaps they won’t be believed. Abusers can be acquaintances, strangers, friends in a group home, or caretakers they know and trust. And yet, classes where students can learn about consent and recognizing signs of abuse aren’t always offered to this population.



9. New York - Letter: Direct Support Professionals Should be Paid a Living Wage

By Joseph Mangio, The Buffalo News, February 12, 2018

I am exceptionally concerned about the workforce shortage facing nonprofit service providers and the 130,000 New York State citizens they serve with intellectual and developmental disabilities. Nonprofit agency administrators, while advocating for the individuals and families they serve, echo that a crisis is at hand. Individuals with developmental disabilities, their families and New York State have greatly relied upon these nonprofit service providers since the Willowbrook tragedy in the 1970s.

Minimum-wage regulations affording greater compensation in other professions have placed nonprofit service providers in crisis as they attempt to obtain and retain direct support professionals (DSPs). Data from 155 responding nonprofit agencies in 2017 reveal that 14 percent of all DSP jobs were vacant; staff turnover is at 27 percent; 33 of DSPs plan to leave their job within 6 months; and more than 10 million hours of overtime hours were accumulated by existing staff.

New York State legislators display bipartisan support for the #bFair2DirectCare campaign advocating for nonprofit agency DSPs to be compensated fairly for their critical training and services. Gov. Andrew Cuomo is to be commended for the budgetary commitment for DSPs to reach a living wage by 2022. However, this goal must be reached by 2020 in order to avert a catastrophic system collapse and keep nonprofit service providers viable. Given the critical nature of this staffing crisis, #bFair2DirectCare advocates are asking Cuomo to hasten the ability for DSPs to earn a living wage.




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JUNE 8 - 13, 2018
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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:

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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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