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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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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
Dental Services
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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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 23, 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. Illinois - Reforms Promised, But Group Homes Still Suffering From Problems

By Michael J. Berens, The Chicago Tribune, February 23, 3018

Editor's Note: This article is a long awaited follow up to the Chicago Tribune series, "Suffering in Secret" from December 2016 - January 2017

Despite Illinois’ promise to reform troubled group homes for disabled adults, allegations of abuse and neglect have risen, staffing levels have fallen and state oversight has been sluggish, the Tribune has found.

At the same time, some vulnerable adults who failed to thrive in group homes have been quietly granted admission at a state facility, marking a dramatic shift in state policy. Previously, state officials emphasized closing those facilities and moving residents to group homes.

Tribune Feb 23 2018

One of those residents arriving from a group home was near death from disease. Others were victims of suspected sexual assault or suffered unexplained injuries, state records obtained by the Tribune show.

A 2016 Tribune investigative series, Suffering in Secret, exposed how Illinois cloaked evidence of harm and death at group homes as part of a botched cost-cutting plan to steer adults with disabilities away from state facilities. State officials and legislators vowed to fix the system at the time, but many group homes remain dangerously unprepared today to shelter adults with profound disabilities, state enforcement records shows.

Problems are exacerbated by inadequate state funding for community-based services, among the lowest levels of support nationally, group home industry leaders said. And staffing shortages continue to plague the industry, which marked up 50 percent turnover rates, according to some group home owners. Allegations of abuse and neglect reached a record high last year – more than 3,600 cases in fiscal year 2017, according to the state’s Office of Auditor General.


State oversight remains inconsistent, a follow-up Tribune investigation found. Some abuse and neglect victims waited weeks before they were interviewed by state investigators, audit records from fiscal year 2017 show. Suspects were not questioned for more than a month in other cases.

A gubernatorial-appointed board tasked with safeguarding residents failed to meet multiple times last year, state records show. Five of seven seats remain empty, including a mandatory position for a person with disabilities.

The Tribune also found that more than half of group homes are not wheel-chair accessible, undercutting state assertions that private residences offer more freedom. Overall, more than 1,600 homes are not compliant with the American Disabilities Act, inspection records show.

Please continue to article and video



3. Federal Program That Moves People Out of Institutions In Jeopardy

By Courtney Perkes, Disability Scoop, February 19, 2018

Editor's Note: VOR supports a full continuum of care, including Intermediate Care Facilities (ICF's), HCBS waiver homes, own home, intentional community, and other residential options. While we do not oppose the movement of people from ICF's to group homes if that is their preference, we do feel that Money Follows the Person has been used to damage the ICF system, and that the system misrepresents how much money does follow the person, wherein some services available in the ICF are not available or covered by Medicaid in the new facility. 


Funding is quickly running out for a popular Medicaid program that transitions people with disabilities from costly institutions to home and community-based living. Disability advocacy groups are urging constituents to call lawmakers to voice support for bipartisan legislation that would reauthorize the Money Follows the Person program. Since inception more than a decade ago, it has helped roughly 75,000 people leave nursing homes or intermediate care facilities in favor of their own apartment or a small group home.

Money Follows the Person was established in 2005 and has provided nearly $3.7 billion to 44 states, according to a 2017 report from the U.S. Department of Health and Human Services. States have used the funds to hire housing specialists, modify homes or vehicles for accessibility and provide visits from nurses or personal care attendants.

The program officially expired in September 2016 and Berland said six states have already run out of money and the others will all run out by the end of the year. But states that still have available funds can’t use them to modify their programs or serve new clients, making it essential to re-fund the program as quickly as possible, he said.

“We really are down to the very last dollars,” said Alison Barkoff, director of advocacy for the Center for Public Representation in Washington D.C. “States are having to start dismantling some of their infrastructure and will be ending their programs if it isn’t re-funded soon.”

Read the full article here


4. Behavior Therapy Services In Limbo For Military Families 

By Diana Cahn, Stars & Stripes, via Disability Scoop, February 23, 2018

The letters, as if coordinated, began going out the third week in January.

First Anchorage, Alaska, then Jacksonville, Fla. Soon military families in Texas and Alabama hubs received notices too.

Despite months of preparation, the 2018 overhaul of the military health insurance company Tricare was not going smoothly, the letters from service providers explained. Tricare’s new management companies were not reimbursing providers and not responding adequately to phone calls, emails or online submissions.

So therapy clinics like Bloom Behavioral Solutions in Jacksonville, Integrated Solutions in San Antonio and A Perfect Fit, AK near Anchorage, which offer behavioral therapies for children with autism and other challenges, were finding themselves without recourse — unable to cover the costs of the expensive therapies for children of military families. Services would have to be slashed, each letter said.

“Despite all our efforts to maintain services without Tricare reimbursement, we are at a point at which we can no longer continue to provide ongoing services for Tricare beneficiaries for which we are not paid,” Bloom Behavioral wrote on Jan. 19. “Beginning on Wed. Jan. 24, we will have to put all services for Tricare beneficiaries on hold.”

For parents, the news was stunning. These therapies were not simply beneficial; they give their children skills to cope with everyday life. Losing them could be devastating for a child’s progress.

“I walked into the clinic room and there were parents in tears,” said Mary Nelson, a Coast Guard wife whose 7-year-old receives hours of behavioral therapy each week at Bloom. “Everything changed so abruptly. This is life-altering for these kids.”




5. Maine - Group Homes for Intellectually Disabled Face Acute Staffing Shortage
By Joe Lawlor, Portland Press-Herald, February 20, 2018

The group home system that cares for adults with intellectual disabilities is on the verge of a major workforce crisis, advocates and leaders of nonprofit agencies say, despite a temporary measure approved by the Legislature last year.

Reimbursement rates from Medicaid, which pays for the group home care, have fallen over the past 10 years under Democratic and Republican administrations. Medicaid is a blended program using federal and state dollars, and states have flexibility to set rates to reimburse the nonprofit agencies that provide services.


In Maine, those rates have spiraled downward and made it difficult for group homes to compete for workers. The jobs of caring for adults with intellectual disabilities are demanding, stressful and sometimes require overnight shifts. If those jobs are essentially minimum wage jobs, advocates say they are competing with employers that pay the same or better for jobs that are easier to do.

Advocates for group homes say the reimbursement rates need to increase in order for many of them to survive, and a bill to ramp up rates is pending in the Legislature.

Karen MacDonald, executive director of Port Resources in South Portland, which operates about 20 group homes in Cumberland and York counties, said it’s “make or break time” not only for Port Resources, but for many group home operators. “If we don’t have changes, we would need to make painful decisions about whether we can afford to operate all of our group homes,” MacDonald said. “If we could at least stay above minimum wage, people would feel more comfortable choosing this career path over Walmart. This is critical.”



6. Arkansas - Health Centers Across Arkansas Turn Away Mother and Autistic Son  

By Alex Caprariello, KNWA Homepage, February 21, 2018

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There's a saying that "parenting is a full-time job." For one Rogers mother, it's even more than that.

She's become desperate to find care for her autistic child.

"I am desperate, I am tired and I need help. My son needs help," said Zaikia Earl, whose son is autistic. Earl says she's running out of options. "I am always guarded, on edge and protective at the same time," Earl said.

For 14 years, the single mother has searched for help for her son, Donovan, who is autistic.

Donovan is prone to "meltdowns" -- temper tantrums where he'll become aggressive, violent and sometimes dangerous. "I've had to stop him from running into traffic because he has meltdowns," Earl said.

"It's almost like winding a spring when he starts getting upset, and if he doesn't find a way to release that, he is going to have a meltdown and lose it," said Dr. Digie Neaville, Donovan's pediatrician.

Doctor Neaville has been Donovan's primary care provider since he was six. She's reached out to hospitals, state departments, mental health centers and even elected officials, begging for help. But because Donovan poses both developmental and behavioral challenges, they've often been stonewalled.

"Many mental health centers refuse to take him in because of his developmental levels. And the developmental disabilities teams did not feel that he was appropriate for their program because of his aggression," Dr. Neaville said.

The family [tells me] there's been an opening for him at the Conway Human Development Center, but not until the summer. Even so, there's still one child in front of him, so there's no guarantee Donovan will be able to even take it.

Read the full article here

7. California - San Joaquin Activity Center Closure Leaves Some Scrambling For Options 

By Carlos Correa, CBS 13 Sacramento, February 16, 2018

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By the start of the summer, more than 100 children and adults with developmental disabilities in San Joaquin County will be forced to find new service providers.

County leaders have announced they are discontinuing the program that has offered social skills and job training to clients for close to 60 years.

By now, clients who come here to the activity center have been notified of the change. Now, comes the tough job of transitioning those patients to new programs. Leaders with the Valley Mountain Regional Center in San Joaquin County will soon be meeting with more than 100 clients, individually. They will be assessing each of their cases carefully as they prepare to close the activity center.

“That’s what’s really making everybody upset, and our social workers and everybody feels that pain. You can’t help but feel that because the routine is very important and when you have to disturb it like this you have to be very careful,” said Tony Anderson, executive of the Valley Mountain Regional Center. Valley Mountain partially funds the activity center, and so does the county. Earlier this month, leaders decided it would shut down the program to help save money.

“Providers are going out of business throughout the state, so this is really a systemic problem we’re having, but you know the state isn’t paying more to regional centers to pay the providers more so there is really nothing we can do,” he said.

The activity center can serve 140 people with developmental disabilities, but those numbers have gone down in recent years. It now serves 128 clients. Each person will be transferred to new programs.



8. Georgia - GA General Assembly Considering New Background Check Legislation

JD Supra, February 21, 2018

The Georgia General Assembly is considering new legislation that would implement a comprehensive program of national fingerprint background checks for Georgia long-term care facilities. If passed, Senate Bill 406, the “Georgia Long-Term Care Background Check Program,” will consolidate three existing background check statutes and replace them with a single, comprehensive background check law applicable to all owners, applicants, and employees of long-term care facilities. The new Bill will implement a national fingerprint-based background check system through the FBI database for long-term care employees, applicants, and owners. Existing owners and employees would have until January 1, 2021, to submit a records check application to the department or submit evidence of a satisfactory background check.

Provider Types Included:

SB 406 will implement and update background check programs for personal care homes, assisted living communities, private home care providers, home health agencies, hospice providers, nursing homes, skilled nursing facilities, intermediate care homes, and adult day care facilities licensed pursuant to DCH regulations. The Bill will require background checks on applicants and employees who have routine contact with patients or their financial information and owners who actively participate in operations.



9. Kentucky - Bill To Update Guardianship Laws Clears Senate Panel 

By Bruce Schreiner, Associated Press via Richmond Register, February 22, 2018

A bill aimed at easing the state's growing burden as guardian of vulnerable elderly and disabled people moved a step closer to clearing the legislature Wednesday.

The measure, which seeks to ease the strain by ensuring that more relatives take on guardianship roles, won unanimous approval from the Senate Health and Welfare Committee, without any changes.

The bill — House Bill 5 — goes next to the full Senate. The House approved it by a vote of 79-3 early this month.

It comes as the state struggles with growing caseloads of people who become wards of the state. The state is currently guardian for 4,448 wards, said Tim Feeley, deputy secretary of the Cabinet for Health and Family Services. "We have a system where our guardianship program continues to grow and grow and grow, and we can't keep up with it," he told the committee.

State guardians are juggling caseloads of 65 to 70 wards apiece, about three times more than that recommended by national guidelines, Feeley said.

Under the current system, when families are fighting over who will serve as a relative's guardian, judges sometimes resolve the matter by appointing the state as guardian, the bill's supporters said.

Under the bill, judges would have to determine that "exceptional circumstances" exist to appoint the state as guardian.

The bill "makes the family have to work it out," said main sponsor Republican Rep. Daniel Elliott of Danville.




10. Pennsylvania - Rep. Baker Accepts Presidential Appointment, Resignation from the House Effective Feb. 19

The Wellsboro Gazette, February 19, 2018

VOR PA State Coordinator Susan Jenning's Note: PA House Health Committee Chairman Matt Baker was instrumental in preventing Pennsylvania's HB #1650 from being voted on and was very much in favor in keeping the PA State Centers.

Rep. Matt Baker announced he will be resigning from the Pennsylvania House of Representatives effective, Monday, Feb. 19. The decision comes after the 25-year House veteran was offered a presidential appointment to serve his country.


“It is with great sadness that I am leaving the House of Representatives sooner than I would have desired; however, I have been given the opportunity to serve the people of the 68th District and beyond in an even greater capacity than my current position allows,” said Baker. “I am honored to have been offered this opportunity and feel it is the right time in my career to make the transition.”

Baker has accepted the position of Regional Director of the Office of Intergovernmental and External Affairs, Office of the Secretary of the Department of Health and Human Services.

He will be one of 10 HHS regional directors across the country whose region includes Pennsylvania, Delaware, Maryland, Virginia, West Virginia and the District of Columbia. His many new responsibilities will include ensuring HHS maintains close contact with federal, state, local and tribal partners and addresses the needs of communities and individuals served through the numerous HHS programs and policies.




11. Oregon - Effort to Send Portland Teacher, Supplies to Bangladesh Could Have Lasting Impact on Nation's Special Education

By Shasta Kearns Moore, Portland Tribune, February 20, 2018

A Portland Police Bureau program to send officers to train in Bangladesh has grown into an educational partnership no one could have imagined.
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And when 2014 Oregon Teacher of the Year Brett Bigham heads there next month, some hope it could even spark a nationwide change in attitudes there against children with disabilities.

"In Bangladesh, they don't educate children with special needs, so it's groundbreaking," Bigham said of the inclusive school in Rajshahi, where he will go in March. "They are the only ones in Bangladesh who are doing this."

The journey to this point started in 2011, when longtime police bureau volunteer Dave Smith went to Bangladesh with four Portland police officers as part of a U.S. Department of Justice grant. The International Criminal Investigative Training Assistance Program paid for dozens of Portland police to promote community policing in the Southeast Asian country. Smith was selected because he founded and still coordinates a Portland Police Bureau community policing arm called East Portland Involved Citizens (EPIC).

Ashfaque Kabir, director of the Tauri Foundation, started a school in 2003 out of the belief that children like his daughter, a bright girl with cerebral palsy, should have the opportunity to learn. Kabir partnered with the Smiths to open the Tauri Foundation All-Inclusive School in 2014 and manages its daily operations. He explained to an Asha board member that though his teachers were well qualified and cared deeply about their students, they had no culture of special education nor institutional knowledge of best practices.

TRIBUNE PHOTO: JAIME VALDEZ - Founder and director of the Tauri Foundation, Ashfaque Kabir (back left, in red jacket) poses with students and teachers at the All-Inclusive School of Rajshahi, Bangladesh.

They needed a specialist.

Enter Bigham, a Portland teacher who has become a nationally recognized expert on special education since his 2014 selection as Oregon Teacher of the Year.

Bigham said throughout his career he's had to learn and relearn how to adapt his teaching to the vast range of needs his students had, but he was lucky to be able to call up colleagues, research on the internet or rely on his degree. The teachers in Rajshahi have none of that, he says.




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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:

  • 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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