July 15, 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
A Little Help From Our Friends
To start this week's newsletter, we'd like to feature two presentations we received from our friends at the National Council on Severe Autism and the Coalition for the Preservation of Employment Choice, both of whom spoke at our Annual Meeting last month. (To complete the circle, we were notified of the NCSA feature by our own Micki Edelsohn, the third speaker at that meeting!)
What About Us Without Us?
By Thomas A. McKean
As a high-functioning person with autism I often hear a lot of “Nothing about us without us.” But does this mean only us? The articulate higher functioning autism us? There are some who believe it does. I happen to disagree.

If you have been diagnosed (and by that I mean actually diagnosed by a qualified, licensed clinician), then yes, you have a say in this because what goes on will directly affect you. But you’re not the only one. It will affect others, too. Those people also have a right to be heard.

“Us” also includes those who cannot speak for themselves. It includes parents and family members who care for them every day and who have a right to speak for them. It includes the teachers who educate kids with autism, the staff who work with severely impacted clients, the clinicians struggling to support patients desperate for help. What happens in the autism community will affect them as well.

And researchers. And therapists. And housing providers.
It is important to get these different views. We can’t base everything we do on just a single perspective when so many others will be affected. That’s asking for trouble. It’s in considering these different views that solutions will be found.

I understand wanting to have a say in where autism policy is going. But I also understand that others have a say as well because I am not the only one affected by this. To believe my opinion is any more important or any more valid than anyone else’s is pure selfishness.

Treat Planet - Sheltered Workshops Build a Stronger Community
This is an incredible, moving video that illustrates the important role that Sheltered Workshops play in providing employment opportunities to people with intellectual and developmental disabilities and autism who are have been left behind by programs that support competitive, integrated employment.

"Every single one of these people have been rejected, in terms of having a job. So our job is to give some people with varying abilities, and a wide variety of 'disabilities', an opportunity to show what they can do and to work their own pace."

Please take a few minutes to view this short presentation, and to share it with others.

U.S. Department of Labor - Wage and Hour Division
will be presenting a free webinar about section 511 of the Rehabilitation Act and its limitations on the payment of subminimum wages permitted under the Fair Labor Standards Act, section 14(c) program.
July 20, 2022 1:00 - 2:30 pm Eastern

The panel of speakers will address what section 511 requires, why it is important for workers, who is responsible for carrying out each of the requirements, what documents and evidence employers need, and consequences for breakdowns in the process.

President's Council for People with Intellectual Disabilities
will be holding its first virtual meeting of the new term on July 28, 2022 from noon to 4 pm (Eastern).

For more information about the PCPID, please click here.
To register for this meeting, please click here.
National News:
Data Suggests Autism Rate Is Still Growing
By Shaun Heasley, Disability Scoop, July 13, 2022

New research finds that autism prevalence among U.S. children is continuing to rise.
In a study looking at data on more than 12,500 kids ages 3 to 17 across the country, researchers determined that 3.14% had autism.

The findings, published this month in JAMA Pediatrics, are based on information collected through the Centers for Disease Control and Prevention’s 2019 and 2020 National Health Interview Survey, a routine poll soliciting information about all types of health matters from individuals across the country.

As part of the nationwide survey, parents were asked if a doctor or other health professional had ever told them that their child had autism, Asperger’s disorder, pervasive developmental disorder or autism spectrum disorder. In 410 cases, the answer was yes.

Boys were nearly three times more likely than girls to be on the spectrum, according to the study findings. And, there was a “significant difference” in prevalence based on a family’s economic status with lower income children more likely to have autism.

The overall autism rate identified in the study is significantly higher than other estimates in recent years.
Data from the National Health Interview Survey conducted between 2014 and 2016 pegged autism prevalence at 2.47%. Then, numbers decreased from 2016 to 2017, before rising again, the study said.

Meanwhile, the researchers noted that the 2016 National Survey of Children’s Health suggested that 2.50% of children had autism.

Note: The following articles concern announcements by the Center for Medicare and Medicaid services about proposed cuts in home health care and palliative care services under Medicare. These cuts have yet to be approved, but are of concern to families whose love ones rely on these services through Medicaid, especially in the current climate of an underpaid workforce and the number of providers who have closed or cut back on services in several states. If passed, the ripple effects of these proposed cuts could set back services and supports throughout the system.
Proposed Payment Rule Could Trigger $18B Cumulative Cut to Medicare Home Health Reimbursement
By Robert Holly, Home Healthcare News, July 12, 2022

The U.S. Centers for Medicare & Medicaid Services (CMS) has not proposed a negative aggregate payment adjustment for home health agencies for the following year since 2018.

That stable Medicare-reimbursement landscape, in turn, has allowed home health operators to grow their businesses and test out new, innovative care models, while also investing in their workforce. This period of stability, however, is inching closer to a potential end.

“You’re hearing loud and clear from the home health provider community that this is a real gut punch, and it will harm access to care for the Medicare population,” Joanne Cunningham, CEO of the Partnership for Quality Home Healthcare, told Home Health Care News. “The size and the nature of … these reductions, what they would do to the Medicare home health program, would be severe.”

Released on June 17, the 2023 home health proposed payment rule seeks to lower aggregate provider payments by 4.2%, or about $810 million. That figure includes a 2.9% Medicare payment increase, as well as a 6.9% cut related to the Patient-Driven Groupings Model (PDGM) and a 0.2% cut related to outlier payments.

If finalized as is, the proposed rule would have an immediately devastating effect on home health providers across the U.S., industry advocates caution. Specifically, such a cut would hinder patients’ access to care, stifle innovation and further cool what has otherwise been a hot M&A market.

Medicare Home Health Cuts Could Have Ripple Effect on Hospice, Palliative Care
By Jim Parker, Hospice News, July 14, 2022

Margin pressures from the proposed cuts to Medicare home health rates could impact palliative care and hospice.

The U.S. Centers for Medicare & Medicaid Services (CMS) in June released its proposed home health reimbursement rule for 2023, which included a 4.2% reduction in aggregate payments totaling an estimated $810 million.

The agency cited budget neutrality requirements to explain the cuts, as well as adjustments related to the Patient-Driven Groupings Model (PDGM), a new payment system introduced in 2020. Many home health providers have decried the proposal, with some calling it a “declaration of war” that threatens their sustainability.

But in addition to the threat to their core business, the rule if finalized could create a chilling effect on those companies’ current or prospective hospice or palliative care programs, according to Bill Dombi, president of the National Association for Home Care & Hospice.

Proposed 2023 Medicare Physician Fee Schedule Threatens Patient Access to Surgical Care
American College of Surgeons, July 12, 2022

The Centers for Medicare & Medicaid Services (CMS) is again calling for cuts in Medicare physician payment rates, jeopardizing seniors’ access to critical treatments and procedures.

In its proposed Medicare Physician Fee Schedule for calendar year 2023 released last week, CMS proposed cuts of 4.42%.

A short time later, the ACS-led Surgical Care Coalition issued a press release urging Congress to address systemic challenges so that these reductions could be stopped, and ACS Executive Director Patricia L. Turner, MD, MBA, FACS, sent an email to all US members alerting them to some of the actions that the College is taking to battle these cuts.

“It is clear that the Medicare physician payment system is broken,” she wrote. “Please know that the ACS will continue to fight aggressively for you and our patients. We are working to both stop the cuts and stabilize the payment system in the short term and reform the system in the long term.”

State News:
Nearly 200,000 Disabled Texans are Waiting for the State’s Help — Some for Longer than a Decade
By Alex Stuckey, Houston Chronicle, July 13, 2022
hen Charles Brown first called The Harris Center to get treatment for his autistic son, Barack Obama was in his first term as president.They told him Chase, who was 18 at the time, would have to go on a waitlist.

When he called back the next year, they said the same thing — it might be 10 years before he could get services such as employment training, residential care and behavioral support which are funded by the state and Medicaid. It might even be 15. It’s been 11 years. Chase still is years from getting help.

“He joined the list … when he got out of high school,” Lisa Brown, Chase’s mother, said, struggling to mask her frustration on a recent call to the center. “Do you have an estimate of, like, when he might qualify?”

The representative with the center, Harris County’s point of entry for publicly funded intellectual and developmental disability services, said they had no idea — without more government funding, there’s not much they can do.

They’d call her in another two years with an update.

Chase’s father died almost five years ago. And she isn’t getting any younger.

What will happen to Chase when I die?
Experts estimate that there are more than 500,000 Texans like Chase living with intellectual and developmental disabilities. But Texas has the capacity to serve barely a fifth of those individuals.

That means tens of thousands are forced to wait in line for care.

Texas has multiple waiting lists for different types of care, including six for Medicaid waiver programs — which use state and federal funds to get people care in the community instead of in an institution — and one for safety net services provided locally. As of March, nearly 170,000 people were waiting for care through a Medicaid waiver program — a 115 percent increase since 2010. State data shows that some residents have been waiting for nearly 20 years to receive help.

State lawmakers have invested some money into the Medicaid waiver programs in recent years to alleviate the waitlist, but the safety net services, meant to serve as a stop gap for individuals waiting for Medicaid waiver programs, were decimated by a 2011 budget cut from the Legislature. Experts say they’ve never recovered.

Mother Risks Losing Custody of Son with Autism If They Leave Emergency Department
By Nicole Walton, Public Radio 90, WNMU, June 13, 2022
Thirteen days.

That’s how long Ginnie Killough and her son Alexander have been living at the emergency department at UPHS-Marquette.

Al is 31. He has autism. For 13 years he’s been living at home with the assistance of Community Living Supports and home help, and two weeks ago he had a behavioral episode. Ginnie, a Marquette resident, says that’s not unusual for people with autism. Al was taken by ambulance to the hospital’s emergency department and put in a 10x10 room.

That’s when the staffing agency withdrew its services. Ginny was told it was due to the agency’s inability to find staff and Al’s increasing behavioral needs.

“I feel like the staff were not being supported and Alexander was not being supported with appropriate psychological services for his condition. During COVID, that got worse,” she says.

Community behavioral health agency Pathways says Al needs to have a psychiatric evaluation downstate, but there are no available beds, and there’s no place to do it in the Upper Peninsula.
And that’s when the state stepped in, telling Ginnie she needed to follow Pathways’ recommendation.
“Adult Protective Services says if I take him home, they will take me to court and try to take my guardianship away.”

So, she an Al continue to camp out in that 10x10 room at the emergency department. Tuesday, June 14 marks two weeks of hospital-made meals (which he doesn’t like), tidying up the cramped space, and reaching out to people who could possibly help.

“I want for common sense to take over and some reasonableness. He doesn’t need to be here; this is no place for him. He doesn’t belong here.”

Ginnie points out there’s a difference between mental illness and a developmental disorder.

“He doesn’t need a psych evaluation. He has autism, so we need to get the supports in place that he needs, here. And that will take care of the behavioral issues we’ve been having.”

Manitoba, Canada - Low Pay Leads to 'Revolving Door' of Adult Support Workers

Kalyn Falk's son Noah loves to take walks by the duck pond in St. Vital Park, picking up feathers from the many dozens of geese. 

That's a good day for the 24-year-old with autism and high support needs. Other days, he and his family simply have to manage intense abdominal pain caused by a gastrointestinal condition the family is still in the process of diagnosing, but which causes Noah to act aggressively in ways that can hurt himself and others.

"When he is calm, he's doing his photography, he's doing his drawing. We've sold at a lot of art sales. He's part of the community," Falk said. "But sometimes we go to crisis level where we're just managing pain and managing anxiety and we're just coping. But when we're living like this, we're just having a lovely life."

Noah needs stable care from people he knows and trusts, but widespread staffing shortages at organizations serving adults with intellectual disabilities have made it hard to find workers who stay with him long enough to form a bond and learn his particular ways of communicating, she said.

Organizations that help people living with intellectual disabilities have had to cut back services due to widespread staffing shortages, which they blame on wages that haven't kept up with other sectors.

Falk praises the direct support workers who have helped her son since he was diagnosed before the age of two, but she estimates that he has had more than 100 direct support workers in his lifetime.

"It feels dehumanizing to have a revolving door of people, because it teaches him to say goodbye," she said.

Noah's gastrointestinal condition led to a health crisis that forced Falk to temporarily give up his care to go to Victoria General Hospital in February. That crisis came about partly because the group home where he lived part time lacked the resources to provide the kind of consistent care needed to manage Noah's sensitive dietary needs, which play a significant role in his behaviour, she said.

They are still in the process of trying to find him a permanent group home, which they say he needs because of the intensity of the care he requires.

The sector has always faced staffing shortages, but the problem has gotten significantly worse in recent years, according to Audra Penner, president and chief executive officer of ImagineAbility Inc., which provides day services to adults living with intellectual disabilities.

Before the start of the COVID-19 pandemic, agencies would typically operate with vacancies of 10 to 15 per cent, she says. Now, vacancy rates have risen to between 30 and 50 per cent.

"The primary reason for the staff shortages is that Department of Families funding has not kept pace with inflation," Penner said.

Wages for direct support workers range from $12 to $15 per hour, with the primary source of funding coming from the Department of Families, she said.

"So that primarily is it, that we're not able to provide the wage that people need to live," Penner said.
"When [other] people are making $15, $16, $17 an hour, they choose to go elsewhere, especially with the inflationary pressures."

Florida Agency for Persons with Disabilities Showcases Record High Budget
By Florida Daily, July 12, 2022
The Agency for Persons with Disabilities (APD) showcased its new funding this week.
Last month, Gov. Ron DeSantis signed the budget into law.

For the first time ever, ADP will have a budget totaling more than $2 billion, providing record provider rate increases to give Direct Support Professionals (DSPs) the raises they have earned.

Included in the APD budget are provider rate increases for critically needed DSPs. The rate increases, which are to be effective July 1, are appropriated to increase wages to at least $15 an hour, beginning October 1.

Providers will see substantial rate increases including:
73 percent for Companion services;
45 percent for Respite services;
41 percent for Personal Supports services;
25 percent for Residential Habilitation services; and
23 percent for Adult Day Training services.
Additionally, effective July 1, rates for Behavioral Services will closely align with Medicaid State Plan.

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.
Autism/IDD Research News:
Global Team of Scientists Discover New Gene Causing Severe Neurodevelopmental Delays
By Nadine A Yehya, UC Davis via Medical Express, July 12, 2022

An international team of researchers led by UC Davis geneticist Suma Shankar has discovered a new gene implicated in a neurodevelopmental condition called DPH5-related diphthamide-deficiency syndrome. The syndrome is caused by DPH5 gene variants that may lead to embryonic death or profound neurodevelopmental delays.

Findings from their study were published in Genetics in Medicine.

"We are so excited about the novel gene discovery," said the lead author Suma Shankar, professor in the Departments of Pediatrics and Ophthalmology and faculty at the UC Davis MIND Institute. Shankar is the director of Precision Genomics, Albert Rowe Endowed Chair in Genetics, and chief of Division of Genomic Medicine.

DPH5 is essential for protein biosynthesis. It belongs to a class of genes needed for the synthesis of diphthamide, a type of modified amino acid histidine, critical to ribosomal protein synthesis.

"We provide strong clinical, biochemical and functional evidence for DPH5 as a cause of embryonic death and major neural dysfunctions. Disruption to the work of DPH5 impacts multiple body systems and organs, including the heart," Shankar said.

UC Davis led this project, with collaborations from across the world. Scientists from Germany, Saudi Arabia, Sweden, Massachusetts and California worked together to uncover this new gene.

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.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:
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.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, 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 engaged in over sixty 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.

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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