November 25, 2022

VOR's 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.

Thanksgiving Morning, Rapid City, South Dakota Courtesy of Ron Hopp

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


November is National Family Caregivers Month

VOR has responded to a request for comments from the Administration For Community Living

on their

Family Caregivers Policy Proposal

VOR supports every family's right to choose the care for their loved ones with I/DD and autism at every stage of their lives, whether at home, in their own home, in a waiver home, in an intermediate care facility or some other residential treatment. We ask that our government ensure those choices by providing funding to all forms of care and services as needed by the entire I/DD and autism population.

Please click here to read VOR's comments, or click here to download

VOR will be participating in Giving Tuesday again this year!

More information will be coming soon, and check in with our Facebook page, on Tuesday, November 29th.

Special Offer Extended!

Give Two VOR Gift Memberships for the Price of One!

From now until December 31st, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year.

You may give an unlimited number of memberships with this special offer!

(4 the price of 2, 6 for the price of 3, etc.)

    Click Here to Give Two VOR Gift Memberships     For the Price of One!

Special Offer!

For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


new book


Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

Following Up on the News:

Last week's newsletter included an article from by Madison Hopkins, published by ProPublica in conjunction with the Kansas City Beacon, that spoke out against sheltered workshops and 14(c) wage certificates in Missouri. While including some comments supporting workshop's the biases of the author and publishers were evident. They did not approve of these opportunities for people with I/DD and autism.

The article ran on Tuesday, Nov. 15 and was followed up on Wednesday, Nov. 16 by the same article "rewritten" in a plain text format.

On Saturday morning, Nov. 19th (a time when fewer people were likely to see the article) the publisher ran a piece showing that people working in these settings strongly supported these programs.

Why didn't these responses appear in the original article? The author and publishers had this information well in advance of their publication of the first two articles.

People more severely impacted by I/DD and autism continue to be marginalized by the media and by mainstream, one-size-fits-all advocates.

At VOR, we constantly speak out in support of all options. Individuals with I/DD and autism should be the ones to choose what's right for themselves whenever advisable, and their families and guardians should be the ones who determine what is best for them when necessary.

What the Disability Community Told Us About Sheltered Workshops

By Madison Hopkins, ProPublica and The Kansas City Beacon, November 19, 2022

Across the country, disability rights advocates have lamented these facilities and their low wages, calling them discriminatory and exploitative.

So when my reporting for this story got underway in April — part of a yearlong collaboration between The Kansas City Beacon and ProPublica — I expected to hear similar sentiments in Missouri.

Instead, one of my early findings surprised me: Disabled adults and their families in Missouri seemed to strongly support sheltered workshops. They didn’t focus on the low pay or the dearth of other opportunities. Most said they were simply grateful for the jobs that the facilities offered.

This led my editors and me to wonder: Do we even have a story to tell here, if sheltered workshop employees themselves did not see any problems with their situation?

I handed the copies out to sheltered workshop employees as I visited these facilities and asked my sources to share them among their networks.

The responses came flowing in. We heard from more than 90 people, most of them sheltered workshop employees and their families. And their responses dovetailed with what I had heard back in April: strong support of sheltered workshops.

The respondents told me that they would be devastated if their sheltered workshops were forced to shut down. Some family members even bypassed our outreach questions and instead sent in letters expressing opposition to any changes to the federal subminimum wage law or requesting that sheltered workshops remain open in the state. A few respondents later told me that they were encouraged to respond by their sheltered workshop managers. One sheltered workshop employee said she and her coworkers were given time at work to answer our questions online.

“This job has given people with disabilities a chance to work instead of being stuck at home,” one parent of a sheltered workshop employee wrote.

As I kept following up with the respondents, I recognized a common thread: Many felt that their choice wasn’t between sheltered workshops and regular jobs, but rather between sheltered workshops and nothing at all.

Some said sheltered workshops provided a safe place for their family members to spend their days with peers and find a sense of purpose. Others said their loved ones had previously held a regular job or could handle the demands of one, but hurdles like workplace discrimination ultimately led them to believe sheltered workshops were the only realistic option.

“There’s lots of things that can be potential barriers for people working in regular competitive employment,” said Robin Prado, the mother of a sheltered workshop employee. She said her daughter had previously spent a couple of weeks working at a local library but was fired when she didn’t pick up on her training quickly enough — a problem she believes could have been solved with a little additional help.

“I didn’t really feel like we had a lot of support,” Prado said.

A current sheltered workshop employee expressed similar feelings, saying she was “afraid of going back” to a regular job. “I’ve tried jobs on the outside, and this is the first job where I feel really supported by people,” she said.

Read the full article here

State News:

Pennsylvania - Last-Minute Grant Could Save Polk Center Jobs

By Gavin Fish, Explore Clarion, November 22, 2022

Verland Community Living Arrangements, a non-profit agency headquartered in Sewickley that cares for more than 200 Pennsylvanians with intellectual disabilities, was awarded a $2MM grant from the Redevelopment Assistance Capital Program (RACP).

If Verland accepts the grant, it will use the state funds to help construct new homes for residents being displaced by the closure of Polk State Center and provide jobs for those that will be lost, according to President and CEO of Verland, Bill Harriger.

Harriger says he’s been looking for a solution for residents and staff of the center since its closure was announced.

“I met with Representative (R. Lee) James and Senator (Scott E.) Hutchinson a little more than a year ago to get some support for the grant that we were going to put in,” Harriger explained. “I had previously spoken with the Office of Developmental Programs, which basically runs our industry as well as the state centers. It seems like the only good viable solution is to build new homes where the workforce is.”

Harriger’s plan is to construct four homes within a 15-to-20-mile radius of Polk Center. Each home would house six to eight of Polk Center’s residents in a family-style, one-story house. By doing so, he hopes to continue to employ the staff currently working at Polk State Center and care for as many of its residents as possible.

So far, no real opposition to the plan is apparent, though there are several hurdles.

First and foremost, Harriger estimates that the cost to build the homes and staff them will be closer to $4MM. The RCAP grant would cover half of the bill. The other half, Harriger says, may come from “philanthropic asks,” future funding through the state from room and board reimbursements, as well as mortgages on the properties.

“We’re cautiously optimistic that it can happen from a funding perspective,” Harriger said. “But, beyond funding, we need to know if the state is willing to license these homes as ICFs.”

The state licenses facilities such as those run by Verland as either ICFs (intermediate care facilities) or “group homes.” The rate at which the state reimburses the operator depends on the license of the home. ICFs get a higher reimbursement. According to Harriger, that level of reimbursement is likely enough to cover the costs to employ any Polk Center staff who may transition to employment with Verland.

If the state were to license the facilities as group homes, Verland would need to apply for an exception to get the higher rates.

Polk Center has been scheduled to close on November 30. But in a class action lawsuit opposing the closure, Judge Martin C. Carlson has said the date must be moved back another 60 to 90 days. Harriger believes the new close date is March 6th, and that is subject to change.

But, that doesn’t give Verland very much time to finish construction.


Note: Pennsylvania is slated to close two centers, Polk and White Haven. The homes mentioned here would only serve the Polk community.

Minnesota - Troubled Provider of Disability Services Agrees to be Acquired

By Chris Serres, Star-Tribune, November 21, 2022

A large and troubled provider of services to Minnesota adults with disabilities has agreed to be acquired nearly five months after state regulators revoked its license for numerous health and safety violations.

Bridges MN, which has about 400 clients and more than 90 group homes statewide, has struck a deal to be taken over by Fort Worth, Texas-based Caregiver Inc., which provides residential and in-home support to people with intellectual and developmental disabilities in five states, according to a letter sent to clients last week. The transaction is expected to close by Jan. 20, the provider said.

The deal, if approved, would save Bridges MN from being shut down or taken over by state regulators — an outcome that could have upended care for hundreds of people who rely on the St. Paul-based provider for supportive housing, employment and other services. These clients have been in limbo since late June, when the state Department of Human Services took the unusual step of revoking Bridges MN's license because of "serious and repeated" violations and findings of maltreatment involving vulnerable adults.

In interviews, some people who rely on Bridges MN for services said they have been anxious about losing their services since the summer. Finding alternative providers is daunting at a time when care providers across the state are struggling with staff shortages and thousands of caregiving jobs are going unfilled. Some social workers and families report waits of a year or longer for spots in group homes or day activity centers that support people with disabilities.

"This [acquisition] avoids the nightmare scenario," said Barnett Rosenfield, state ombudsman for mental health and developmental disabilities. "Under that scenario, everybody would be scrambling and you'd end up with dozens, if not hundreds, of clients getting put into nursing facilities, group homes or other institutional settings that lack the capacity to serve them well."


Help Us Help

VOR's mission is to advocate for high-quality care and human rights for all individuals with intellectual and developmental disabilities. Our goal is keep our members informed of their rights, to help families network with others and share their experience, to provide useful information on federal, state, and local news to help us all to become better advocates for our loved ones.

As we approach our 40th Anniversary, we find ourselves again in difficult and challenging times. This has been a hard year for fundraising, due to the rise in the cost of living, the number of charitable non-profits reaching out for contributions, and the number of political groups that have sought donations during the past few months.

In order to continue to help families like yours, people with I/DD and autism like your loved ones, and to protect choice of residential care and employment opportunities in years to come, we need to increase our membership and to increase donations.

Please give generously. Consider signing up for a monthly donation plan. If you are of a certain age, you may save money by making a qualified distribution from your IRA. Include VOR in your estate planning, or consider other forms of long-term giving. For more information on how you can help, please view our options at:

Autism News:

Shared Brain Structure, Connectivity Hint at Autism Subgroups

By Angie Voyles Askham, Spectrum News, November 21, 2022

Subgrouping mouse models of autism by brain structure or connectivity can reveal other commonalities among people who have the condition, according to two new unpublished studies. Researchers presented the findings last week at Neuroscience 2022 in San Diego, California.

Autism’s heterogeneity complicates its study. Biomarkers evident within one subgroup may be diluted across the broader autistic population, for example. And clinical trials that succeed for one group can fail if they don’t work for the majority, says Jacob Ellegood, a research associate at the Mouse Imaging Centre in Toronto, Canada, who presented findings at the conference.

That challenge makes the identification of autism subgroups — sets of people who may respond similarly to treatments, for example — an appealing goal, he says. And how brain structure compares across different mouse models of autism offers one way to search for such subtypes.

In new work presented on 13 November, Ellegood and his colleagues linked nine mouse models of rare genetic conditions to better-known forms of autism, based on neuroanatomy. Similar pathways

may underlie these different genetic conditions, Ellegood says.

Another team at last week’s conference sorted 19 autism mouse models into two groups according to functional connectivity, a measure of synchronous activity across brain regions. Similar groups, the unpublished study shows, exist among people with idiopathic autism.

“There isn’t a single signature of autism in the brain,” says study investigator Marco Pagani, a research fellow at the Italian Institute of Technology in Roverto, Italy, and the Child Mind Institute in New York City, who presented the connectivity work on 16 November.


November is National Family Caregivers Month


How We're Failing Parent Caregivers


Why It Matters

Watch Online November 18-30, 2022

November is National Family Caregivers Month, a time to recognize and honor family caregivers. The team that created this documentary are offering a limited-time opportunity to view their film

to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

Tickets are $10

Click here for more information

Please note that the proceeds of this screening do not go to VOR,

We are sharing an opportunity to view this film with our members.

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

[email protected]

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.

H.R. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

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.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

Help Us Help:
Shop at Amazon?

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

  1. Just go to 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]
836 South Arlington Heights Road #351
Elk Grove Village, IL 60007

Toll Free: 877-399-4867 Fax: 877-866-8377
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