July 29, 2022
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Your Members of Congress will be back home, in their district/state offices. This is a great opportunity for you to meet directly with your representatives and/or senators!

If you would like to know what issues VOR has been presenting to Members of Congress, and maybe print up a few copies to share with your elected officials, please click here.

August is a great time to donate to VOR! It's often a slow month for donations, but our advocacy and expenses remain high, regardless.

Please consider making a quick show of support for our team here
A Nice Story to Share
To The Mom Who Invited My Autistic Son To A Birthday Party
Dear Super Cool Mom,

You don't know me and I don't know you, but my son, Timothy, sometimes sits beside your son at school. Timothy is a great kid. He's curious and smart and is the kindest child I know.

Unfortunately, other kids can't seem to see that.
Timothy has severe autism spectrum disorder. He's also a seven-year-old little boy who loves and plays with all of his heart. He needs a lot of extra help at school and sometimes seems just plain oblivious to what's happening right underneath his nose. But do not be mistaken, he can do anything once he puts his mind to it.

He wants friends but sometimes doesn't know how to make them. He wants to play but sometimes doesn't know how to ask. He wants to be included but sometimes doesn't know how.

We parents of children with special needs know only too well the hurt our kids feel when they're left out of social gatherings. Organized sports, play dates, sleepovers, and yes, the dreaded birthday parties. 

I can say wholeheartedly that my son hasn't attended a single one. We've received countless invitations in the past few years but mostly by kids who mercilessly invite the entire class.

Don't get me wrong, I'm grateful. But I wonder if the parents know what would happen if I brought Timothy? The interruptions, the meltdowns. How I would hate to take the spotlight from the birthday child.
So we politely decline. Every single one. Until your invitation arrived in the mail with a special note.

It read: "Carter sat beside Timothy at school and he always talks about him. I really hope he can come. We are renting a bounce castle that we can attach a small bounce slide to at the bottom. We will also have water balloons and water guns. Maybe Timothy can come earlier in the day if it would be too much with the whole class. Let me know how we can make it work."

You wrote exactly what I needed to see that day and didn't even know it. Because of your son, he's included. Because of your son, he feels wanted. Because of your son, he has a voice.

And I want you to know that because of you, I can get through another day. 

Because of you, I can get through another appointment. 

Because of you, I can take more stares and more questions. 

Because of you, I have hope for Timothy's future.

By Trish Klein, YourTango, July 25, 2022

National News:
New Push Underway To Train Doctors, Dentists On Developmental Disabilities
By Michelle Diament, Disability Scoop July 29, 2022
Groups representing the nation’s doctors and dentists are committing to better prepare students in their fields to treat those with intellectual and developmental disabilities in a move that could lead to major improvements in care for people in this population.

The presidents of the American Medical Association and the American Dental Association said that they would work to expand disability training for medical and dental students during an appearance earlier this summer at the American Academy of Developmental Medicine & Dentistry’s One Voice Conference in Orlando, Fla.

People with disabilities have long faced disparities in health care and the situation is often exaggerated by the fact that many doctors and dentists receive little to no training in how to meet the needs of such patients. Research shows that doctors overwhelmingly harbor negative views of those with disabilities and more than a third of physicians don’t know what their obligations are under the Americans with Disabilities Act.
Disability advocates have pressed in recent years for a requirement that all medical schools include specific training on treating people with intellectual and developmental disabilities, but that effort has so far been unsuccessful.

The pledge from leaders of the American Medical Association and the American Dental Association was short on specifics, but officials with the American Academy of Developmental Medicine & Dentistry — which represents health professionals focused on caring for those with developmental disabilities — say the groups are meeting to push things forward. They indicated that they expect to establish a timetable for training to be in place and said they believe it needs to be mandatory for future doctors and dentists.

Again, VOR would like to recognize the work of one of our members of our Board of Directors, Mary Kay Cowen, who created the Louisiana Dental Task Force and, along with fellow advocate Kathy Dwyer and LA State Representative Rhonda Butler passed legislation making Louisiana the first state with laws ensuring access to high quality dental care appropriate to the need of people with I/DD in both group homes and ICFs throughout the state!
PBS Documentary Explores Shortcomings Of Disability Support System
By Shaun Heasley, Disability Scoop, July 26, 2022

What happens when a family is left to care for an adult who is deaf, blind and has autism without support? That’s the focus of a new documentary that’s set to premiere on national television.

The 60-minute film “He’s My Brother” follows co-director Christine Hanberg and her family as they look at what their future holds with her brother Peter, 31, who has multiple disabilities.

Until five years ago, Peter attended a day center, but when it closed, his care fell completely on his family. Peter’s mother quit her job to care for him full time while his father works and Christine helps as much as she can.

“Weeks and months went on, so I grabbed the camera and started filming because I could not comprehend how much responsibility we as relatives have to take when the system fails,” Christine Hanberg said. “Now, seven years have gone by and we still haven’t gotten any help at all. Not even one offer for day care for Peter and I see so many people struggling with the broken system.”

“It happens all over the world,” she said. “I hope that our film can start a discussion about basic human rights for people with disabilities and about how big a responsibility we as relatives should take. For my part, I will be there for my brother anytime. But what about those who do not have the opportunity or the time in their lives? If the system doesn’t help. Who will, then?”

“He’s My Brother” will have its national broadcast premiere Aug. 1 on POV on PBS and will stream for free at pbs.org and on the PBS Video app until Sept. 1.

Federal Disability Employment Program Bans Subminimum Wage
By Michelle Diament, Disability Scoop, July 25, 2022

A major federal program that facilitates jobs for people with disabilities working on government contracts will soon no longer allow them to be paid less than minimum wage.

Under a rule finalized this month, the AbilityOne Program will prohibit payment of what’s known as subminimum wage.

Current law allows employers to obtain special 14(c) certificates from the U.S. Department of Labor to pay people with disabilities less than the federal minimum of $7.25 per hour, but increasingly cities and states are barring the practice.

The new rule, which takes effect Oct. 19, will ban the use of 14(c) certificates to pay employees working on new AbilityOne contracts as well as extensions or renewals and when exercising options on existing contracts. However, nonprofit agencies working with AbilityOne are being given the option to request an extension of up to a year to come into compliance.

State News:
Iowa - Concerns Raised about ‘Aggressive’ Timeline for Glenwood Resource Center Closure
By O. Kay Henderson, RadioIowa, July 26, 2022
The leaders of two Iowa health care groups say they’re concerned about the pending closure of the state-run Glenwood Resource Center for residents with profound disabilities.

After a federal investigation of how residents were being treated, state officials announced the facility would close in 2024.

Di Findley is the founder of Iowa CareGivers, an advocacy group for health care workers and those who receive care. While Findley understands ending institutional care is a priority, she says transferring Glenwood residents to community or home-based care will be difficult.

“I don’t know who’s going to do that work,” Findley says, citing existing workforce shortages in health care.

Findley says many of the families of Glenwood residents will not be equipped to provide direct care. “I have serious concerns about how people are going to be able to access good care in the home,” Findley says, “(to) keep them safe.”
Brent Willett is president and CEO of the Iowa Health Care Association, which represents nursing homes — the primary destination as al Glenwood Resource Center residents are transferred by the end of 2024.

“The priority is being on placing them in the community, which we absolutely support,” Willett says. “The concern that we have is that the infrastructure is not there and the timeline is aggressive just for these folks.”

Willett’s association would like to see “deep new investment” in the facilities and services that are caring for frail and elderly Iowans.

Caregiver of Glenwood Resident Defends Long-Time Staffers after Facility Cited
KCCI TV, Via YouTube, July 24, 2022
in this video, a caregiver of a Glenwood resident defends long-time staffers after facility cited.

Illinois - Springfield to Pay $293K for Trying to Close Group Home
By WRSP/WICS Staff, News Channel 20, July 27, 2022

The City of Springfield has been ordered to pay $293,000 in damages for trying to close a group home for people with developmental disabilities in 2016.

A federal jury awarded the money after a two-day trial that ended on Tuesday.

The United States Justice Department says in 2014 three people with intellectual and physical disabilities moved into a single- family home on Noble Avenue in Springfield.

The residents received help from community residential services from a state-licensed provider, Individual Advocacy Group (IAG).

Two years [later] the City of Springfield tried to shut down the home, citing a local spacing ordinance that prohibits two homes for individuals with disabilities from operating within 600 feet of one another.

The U.S. sued the city in 2017.

A court ruled the justice department's favor in 2020, saying the city violated the Fair Housing Act.

The city must now pay $162,000 in compensatory damages to the residents of the home and their guardians; and $131,000 in compensatory damages to IAG.

Autism Research:
New Jersey Human Services Bolsters Efforts to Reduce Occurrence of Preventable Intellectual & Developmental Disabilities
Press Release, via Insider NJ, July 25, 2022

Human Services Commissioner Sarah Adelman today announced the Department is funding three new projects to help reduce the incidence of intellectual and developmental disabilities (IDDs) and improve infant health outcomes in the state.IDDs are disorders that are usually present at birth and affect the trajectory of the individual’s physical, intellectual, and/or emotional development. About one in six children in the U.S. have one or more developmental disabilities or other developmental delays.

“We know some developmental disabilities can be prevented through maternal, paternal and child care practices. This funding will support the Department’s ongoing work to help prevent developmental disabilities through public awareness, education, and other effective prevention efforts, and provide better health outcomes for families and future generations of New Jerseyans,” said Commissioner Adelman.
The grants were awarded by the Office for the Prevention of Developmental Disabilities (OPDD) within the Department’s Division of Developmental Disabilities (DDD). Vendors were encouraged to submit proposals that address the prevention of developmental disabilities that are novel or unique to the current developmental disability prevention work in the state.

“Preventing developmental disabilities begins long before a woman gets pregnant and continues long after her child is born. Educating new or young parents on the harmful impact of lead paint, for example, is one simple yet effective way to help prevent these types of disabilities. We look forward to the implementation of these innovative proposals and the impact they will have on the quality of life of parents and children,” said Assistant Commissioner Jonathan Seifried, who leads the Division of Developmental Disabilities.

Funding was provided to these organizations for the following projects:
  • Partnership for Maternal and Child Health of NorthernNJ
  • New Jersey Chapter of the American Academy of Pediatrics
  • SPAN Parent Advocacy Network

Direct Support Professionals:
Competition for Workers Among Providers is ‘Untenable’ as Workforce Challenges Continue
By Kimberly Bonvissuto, McKnight's Senior Living, July 27, 2022

All stakeholders — providers, workers, other advocates and state and plan officials — must take a holistic approach to finding solutions to workforce challenges in long-term care rather than siloing discussions into institution- or population-based workforce sectors, LeadingAge Senior Vice President of Research Robyn Stone, DrPH, said Tuesday during a panel discussion.

“Nursing homes, adult day providers, home care and assisted living providers are competing with each other for the same workers,” she said. “It’s an untenable situation.”

A holistic approach, Stone said, starts with bringing together government, educational and data agencies to understand the supply and demand needs of the direct care workforce and then designing implementation strategies to stress quality and sustainability.

She was part of a virtual panel discussion, hosted by the Long-Term Quality Alliance, about best practices and areas for stakeholder collaboration related to this issue. The need exists to think differently about compensation, competency, skill development and the value placed on the direct care workforce, they said.

Move toward a living wage

The long-term care sector, Stone said, should think more broadly about moving toward a living wage across the board, rather than thinking about compensation for a particular staff caring for a specific population.

National Alliance for Direct Support Professionals CEO and President Joe Macbeth agreed, saying that the key is to elevate the profession by changing the narrative on how the direct care workforce is defined. 

“This is a complex job that requires a high level of skill, a high level of acuity, a high level of responsibility, independent decision making and judgment, often without adequate supervision,” he said. “We need to talk about who they are and what they do in a completely different way.”

It starts with training

Elevating the direct care workforce, the panelists said, should begin with basic universal staff training to prepare people to perform jobs in all settings. 

Core competencies should be created at the federal level so that they are standardized and equitable across states and across workers caring for different populations, Stone said. Tying money to competencies is necessary in order for society and workers themselves to see direct care workers as professionals, she added. 

“If we’re able to demonstrate professional competencies — just like in nursing and social work and other professions — you pay for them,” Stone said. “Without that kind of a base, I think we’ve been able to completely undervalue this workforce, [to] call them unskilled and get away with it.”

Right now, training requirements often vary by state, LeadingAge Senior Director of Workforce Research and Development Natasha Bryant said. Standardizing training and improving the workforce, she added, would strengthen the pipeline and attract people to long-term care.

Many long-term care workers don’t have opportunities for further education or advanced degrees, only receiving on-the-job training, AARP Public Policy Institute Director of LTSS Carrie Blakeway Amero said.

“Society has an obligation to invest more in workers and make sure it’s not bare-minimum adequate but robust, for the benefit of the people receiving [long-term services and supports] but also for the workers themselves, so they have opportunities for career advancement and development,” she said.

Please share this offer with your loved one's
Direct Support Professionals!


Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
Help Us Help:
Families of Individuals with
Severe/Profound I/DD and Autism
Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over eighty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
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Elk Grove Village, IL 60007

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