September 9, 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.

Follow us on Facebook
Watch us On YouTube
Click here to Join, Renew or Donate
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Direct Support Professional Recognition Week

September 11-17, 2022

This week, let us honor the Direct Support Professionals for their devotion to our beloved family members with intellectual and developmental disabilities, and thank them for incredible care they provide all day, every day. 

In their honor, we are asking our members to reach out to their elected officials in the House and Senate and ask them to support the Recognizing the Role of Direct Support Professionals Act  - H.R.4779 Introduced by Rep. Kathleen Rice (NY) and S.1437 introduced by Sen. Maggie Hassan (NH) . This bill would require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals. We see this as an important first step in ensuring that they receive the recognition, salaries, and certifications that will define a true career path for our loved ones' caregivers.

To speak with the offices of your members of the House and Senate, you may look up their numbers at:

Or you may call the Capitol Switchboard at (202) 224-3121 and they will direct you to the right extension. 

Please note: VOR Offers Free Digital Subscriptions to our newsletter to Direct Support Professionals. Please scroll down toward the bottom of this page for details.


September 27, 2022

4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific

VOR's next Quarterly Networking Meeting will take place on the afternoon of September 27th on Zoom. The topic this time will concern the challenges our families face when their loved ones with I/DD require  hospitalization. 

To register for the meeting, just email us at [email protected] with the subject line "Networking Meeting". Please include your full name and the state where you live. We will email you the link to the  Zoom meeting.




VOR invites you to NOT bake a cake, pie, cookies, or brownies for this event.

  • You do NOT have to find a recipe.
  • You do NOT have to shop for ingredients.
  • You do NOT have to break eggs, roll flour, or knead dough. 
  • You do NOT have to cook.
  • You do NOT have to clean up!






A warm feeling in your tummy,

that arises from the satisfaction of knowing you have helped an organization that helps families like yours to make their own choices to best care for their loved ones with I/DD!

***           Please click here to donate to our             *** Cakeless Bakeless Zero-Calorie Fundraising Event!

Or you may send a check for the amount you would like to donate to VOR at

386 S. Arlington Road, Elk Grove Village, IL 60007

All donations will be greatly appreciated! 

VOR Offers Support for Bill for

Children with Rare Diseases

VOR is proud to have joined with other organizations in signing a letter from our friends at  NORD asking Congress to pass bipartisan legislation that would help children with rare and complex conditions access time-sensitive health care when they must travel across state lines.

Information  on The Accelerating Kids’ Access to Care Act may be found here:

HR 3089  /  S 1544

Something Nice To Do This Weekend!

Family of Boy with Autism Requests Cards from Strangers for his 9th Birthday

By Sawyer Buccy and Andrew McMunn, WLOX, .September 4, 2022

A Georgia family celebrating an 8-year-old autistic boy’s birthday is asking for people to send him birthday cards after no one showed up to his party last year.

When you are 8 years old, it is important to know that people care about you. Austin has had several birthday parties where no one showed up, and now his mom and aunt are asking for people to help show they care.

Austin’s aunt, Bri Sosebee, told WGCL he turns 9 years old on Sept. 14.

“Last year, he didn’t have anyone show up to his birthday party,” she said.

Sometimes, we all need a reminder that we matter, and that is what Austin’s family is hoping he’ll learn by receiving support from strangers. “He is a little discouraged that people don’t think of him,” Sosebee said. “He is autistic and doesn’t understand.”

Read the full article here

If you would like to make Austin’s birthday extra special this year you can send birthday cards to 7830 Smith Farm Road, Cumming, GA, 30028.

National News:

DHS Issues Rule to Revise ‘Public Charge’ Policy

By Brittany Trang, STAT, September 8, 2022

The Department of Homeland Security on Thursday issued a new rule to revise a Trump administration policy that effectively discouraged non-citizen immigrants from using government-funded health services.

The new rule clarifies that DHS will not classify non-citizens as “public charges” — a classification that could result in them being denied green cards — based on their use of health-related benefits and government services.

“People who qualify for Medicaid, CHIP, and other health programs should receive the care they need without fear of jeopardizing their immigration status,” Health and Human Services Secretary Xavier Becerra said in a statement. “As we have experienced with Covid, it’s in the interest of all Americans when we utilize the health care and other services at our disposal to improve public health for everyone.”

The 2019 Trump administration rule, which was vacated by a federal court in 2021, redefined a “public charge” as an “alien who receives one or more public benefits for more than 12 months in the aggregate within any 36-36-month period (such that, for instance, receipt of two benefits in one month counts as two months).” It also broadened the definition of public benefits to include programs such as the Supplemental Nutrition Assistance Program, several housing programs, and other health and nutrition programs.

Under the new rule, which takes effect Dec. 23, protected health benefits include the Children’s Health Insurance Program and most Medicaid benefits, except long-term residence in places like nursing homes at government expense. Additionally, DHS said it would not consider SNAP benefits or pandemic assistance, along with several other non-cash benefits provided by other government agencies, as public benefits that would count against non-citizens in green card eligibility.


VOR's Position on the Public Charge Rule

VOR is proud to have contributed our comments to the Department of Homeland Security in favor of removing people with I/DD from eligibility from immigrating into the U.S. and forcing their families to make the difficult choice between the freedom to start a new life in this country or remaining in a bad situation just to keep their families together. Just consider for a moment the number of Ukrainian families who have had to make these choices, or the South American families fearing for their lives under societies  ruled by drug cartels, dictatorial regimes, or street gangs. 

The new ruling still does not allow all people with I/DD to immigrate. It still discriminates against those who need ICF level care but it does allow people whose needs for long-term care  can be satisfied through Home and Community-Based Services programs. But it is a start, and a breath of fresh air for many families.  

Read more about VOR's position on public charge, and out March 31st Letter to DHS here

State News:

Iowa - Moves have Begun at State-Run Glenwood Resource Center

By O. Kay Henderson, Radio Iowa, September 2, 2022 

The first set of residents with profound intellectual disabilities moved out of the state-run Glenwood Resource Center last week.

The facility, where over 150 adults were living this spring, is scheduled to close in 2024. Iowa Health and Human Services director Kelly Garcia says 27 community providers have stepped forward as options for Glenwood residents.

“That includes a pretty significant investment in building out home and community-based services in southwest Iowa,” Garcia says, “but it also includes building out those services for those individuals who might want to live closer to home, wherever that home is in Iowa.”

Providers have been meeting on the Glenwood campus with the legal guardians for residents to discuss their options for care elsewhere. The state will host another “provider fair” at the state-run Woodward Resource Center this fall.

“We continue to work with guardians who still have questions and it’s our obligation to make that they feel safe and understand the choice that they have to make this move,” Garcia says. “But we are also having some tough conversations there.”


NOTE: None of the providers have private ICFs in the vicinity of the Glenwood R.C. and there are only a limited number of people who will be allowed placements at the Woodward R.C. Families are being offered the option of having their loved ones moved across the state, several hours away, or downgrading the level of care they receive by accepting the state's Home and Community-Based Services standard instead of the federal ICF standard.

Idaho - High Rent Collides With Dwindling DSP Workforce To Jeopardize Care

By Paul Schwedelson, The Idaho Statesman via Disability Scoop, September 7, 2022

When Brian Prosynchak received an offer to renew his lease, his landlord wanted to charge $900 per month.

Prosynchak, 51, who lives in Nampa, has autism and obsessive-compulsive disorder. His money is already tight. He receives $789 per month on Social Security. He works at Walmart three days a week, for 12 total hours, pushing shopping carts and making $13 an hour.

He negotiated his rent down to $710 a month. He already fears that won’t last. “It’s going to (increase) next year,” Prosynchak said. “It could be $900.”

Prosynchak is one of about 6,000 adults in Idaho’s Medicaid program for people with developmental disabilities, which pays for medical services. They face two problems in the 2022 economy: Rising rents are forcing them to live with roommates or move elsewhere, while staff shortages at support-service agencies mean they may not be receiving the care they need.

In Idaho, Medicaid pays for services that help people with developmental disabilities live on their own. Agency leaders and state government officials believe this helps people integrate into their communities and achieve the most in life. Challenges related to rent and staffing are making it harder to fulfill this mission.

Now, though, “the system is in a crisis,” said Christine Pisani, executive director of the Idaho Council on Developmental Disabilities, in a video interview.

The median rent in Boise for a one-bedroom apartment is $1,211, according to Apartment List. Since March 2020, median rent has increased 47.4%. People on fixed incomes can’t keep up. They’re often forced to move in with roommates.

Liberty Healthcare, a company contracted by the Idaho Department of Health and Welfare, assessed Prosynchak to need about 25 hours of individualized at-home support a week. The annual assessment determines how much at-home support Medicaid will pay for. A direct-care worker helped him go shopping, pay bills, take medications and attend medical appointments.

Because of recent staff shortages, he stopped receiving that support in November and hasn’t had it since.

“He can’t exist without that support,” said Wendy Eckert, owner of Unity Services in Meridian and a longtime friend of Prosynchak’s. Unity Services, a company contracted with the state, provides counseling and long-term case management.

Eckert has filled in by volunteering for Prosynchak by taking him grocery shopping, making sure his home is clean, making sure his air conditioner works, and doing all sorts of day-to-day living tasks. A nurse he hired helps too, by picking up where Eckert leaves off. Despite the assistance, he’s still not receiving the care he’s supposed to be getting.

As the direct-care workforce shortage deepens, this scenario is becoming more common.

“We have people falling through the cracks,” Eckert said.

Read the full article on Disability Scoop or read the original at the Idaho Statesman

Minnesota - Autism Centers Say They are in a Staffing Crisis

By Linton Ritchie, Jr., MPR News, September 2, 2022

Vanessa Slivken tries to get the children in her autism services center the time they need, but persistently short staffing has forced them to ask every family to deal with a rotating schedule. Slivken says it’s the fairest way to go.

“When we don't have staff that can provide the service for you we are gonna have to ask that your child does not come to day treatment that day,” Slivken, the senior director of autism and day treatment services at St. David’s Center for Child and Family Development said.

In a trend that is more acute in the last two years, centers for autistic people in Minnesota have been struggling to find enough staff members — and the money to pay them.

People who work in the field say the longer those staffing problems continue, the greater the consequences for children and families.

The state Department of Human Services notes that the Minnesota Autism Developmental Disabilities Monitoring Network found that in Hennepin and Ramsey counties around one in 44, or 2.3 percent of 4-year-olds were identified with autism spectrum disorder in 2018.

“We are now hitting a crisis. We do not have enough people who are willing to work in these professions,” said Julie Sjordal, CEO of St. David’s Center.

“You can go work at Uber Eats and drive for the same price you could work as a practitioner providing services,” Sjordal said. “This is really hard, intense emotional work that we're in. So, we need to pay at a level that really shows our community values the people who are stepping into these roles and into these fields.”

Dr. Eric Larsson, president of the Association for Science in Autism Treatment said during the pandemic the financial problems temporarily were eased by federal aid, but now those programs have ended.

“We're owing several hundred thousand dollars to the bank and not able to make up that deficit,” Larsson said.

In a May 2022 letter pleading for help from state budget negotiators, Larsson’s organization, which represents a number of autism treatment centers including St. David’s, noted they are only able to charge a fee for service. When Medical Assistance reimbursements decline, the centers have a hard time paying staff, leading to lower levels of services for children.

The long term answer, Larsson and others said, is more funding from the state of Minnesota and the federal government. For its part the state seems to agree. The Department of Human Services said on its website that providers of services for these children and others “are also challenged to recruit and train a sufficient number of staff to serve the number of people who need treatment. Staff retention is also affected by reimbursement rates, lack of training to meet the demands of the position.”

Read the full article here

Arkansas Legislators Endorse Support for People w. I/DD

By Stephen Simpson, Arkansas Democrat Gazette, September 7, 2022

An Arkansas legislative committee endorsed on Tuesday rules aimed at providing services by June 2025 to the more than 3,000 people on the state's waiting list for those with intellectual and developmental disabilities who want to stay in their homes and communities, as well as allowing parents or guardians to become paid staff under the waiver.

The rules that were approved are aimed at adding a sufficient number of waiver slots over the next three years to serve an additional 3,204 people. They also would add 200 more slots for children in foster care.

Keith Metz, spokesman for the Department of Human Services, said Tuesday the wait list is at 3,204.

"Just under 5,000 total clients being served via the waiver right now," he said.

Melissa Weatherton, director of the state Division of Developmental Disabilities Services, said this is an exciting time for the department. "We did some preliminary work [last month] and we will begin working on those slots today," she said.

Weatherton said the rules also would add that legal guardians can be paid if they go through training. She said this was done in an effort to eliminate the burden of finding the workforce to address 3,000 additional slots.

"We currently don't have the workforce to handle 3,000 people over three years, so this allows family members to be paid as aid staff," she said. "We received positive feedback from families and providers who were concerned about capacity issues."

Weatherton said the rules previously wouldn't allow medical providers to hire parents or guardians as paid staff. "Each employer can run their own business, and we will see various payments across the state," she said.

Every person who applies to be a paid guardian will have to undergo training by the medical provider's standards along with the standardized training. "The standardized training is things like CPR, first-aid and mandated reporting training on how to call in an incident because it's required by federal mandate," she said. "This training is not too comprehensive and shouldn't take months on months to complete."

Read the full article here

Autism Research:

Studies of Autism Tend to Exclude Women, Researchers Find

By Anne Trafton, MIT News Office, September 8, 2022

In recent years, researchers who study autism have made an effort to include more women and girls in their studies. However, despite these efforts, most studies of autism consistently enroll small numbers of female subjects or exclude them altogether, according to a new study from MIT.

The researchers found that a screening test commonly used to determine eligibility for studies of autism consistently winnows out a much higher percentage of women than men, creating a “leaky pipeline” that results in severe underrepresentation of women in studies of autism.

This lack of representation makes it more difficult to develop useful interventions or provide accurate diagnoses for girls and women, the researchers say.

“I think the findings favor having a more inclusive approach and widening the lens to end up being less biased in terms of who participates in research,” says John Gabrieli, the Grover Hermann Professor of Health Sciences and Technology and a professor of brain and cognitive sciences at MIT. “The more we understand autism in men and women and nonbinary individuals, the better services and more accurate diagnoses we can provide.”

Gabrieli, who is also a member of MIT’s McGovern Institute for Brain Research, is the senior author of the study, which appears in the journal Autism Research. Anila D’Mello, a former MIT postdoc who is now an assistant professor at the University of Texas Southwestern, is the lead author of the paper. MIT Technical Associate Isabelle Frosch, Research Coordinator Cindy Li, and Research Specialist Annie Cardinaux are also authors of the paper.


Direct Support Professionals:

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.

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 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
Facebook  Twitter  Youtube  
FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube