March 25, 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
VOR's Legislative Initiative, 2022

Sunday, May 15, 2022
2 - 5 pm EDT / 1 - 4 pm CDT / Noon - 3 pm MDT / 11 am - 2 pm PDT
On Zoom

This year's initiative will focus on the diversity of individuals within the I/DD population, the need for a full continuum of care, and need to ensure parity for all services - ICF, group home, family home, or intentional community - to meet the needs of all people with I/DD and to allow families to choose from a full rang of options.

As always, our Legislative Initiative is geared to helping you become a better advocate for your loved ones with I/DD. We will help our participants to arrange meetings with Congressional Staffers via Zoom, help our members to understand how to use Zoom if they need it, and give you the advance materials and tools to make a strong presentation.
The Sunday Initiative will help prepare you for your meetings with Congressional Staffers. It will be followed by individual and group Zoom meetings with Congressional Offices
May 16 - 19,
with follow-up meetings during May and June while Congress is in session.

Registration starts soon!
VOR's Annual Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom
Due to the ongoing Covid pandemic and the continued lock down of many congressional offices in Washington, D.C., we are holding our annual events online via Zoom again this year.
We ask members to please mark the datesin your calendars.

More details coming soon.
National News:
DSM Update Tweaks Criteria For Autism, Intellectual Disability
By Blythe Bernhard, Disability Scoop, March 24, 2022
A new version of the Diagnostic and Statistical Manual of Mental Disorders released this month includes changes to the definitions of both autism and intellectual disability that experts say will further clarify the diagnoses.

The American Psychiatric Association issued the updated manual, which mental health care practitioners, researchers and insurers rely on for decision-making in diagnosing and treating patients, following a three-year process to reflect scientific advances since the fifth edition was published in 2013.

The manual’s entry for intellectual disability will now be labeled “intellectual developmental disorder (intellectual disability)” to more closely align with the World Health Organization’s disease classification system which uses “disorders of intellectual development.”

Intellectual developmental disorder will also include revised language to communicate that while the diagnosis “should not be bound narrowly to the 65-75 IQ score range, the diagnosis would not be appropriate for those with substantially higher IQ scores.”

The changes “strengthen the clarity of the entry on intellectual disability,” said Margaret Nygren, executive director and CEO of the American Association on Intellectual and Developmental Disabilities.

The DSM entry now also aligns with the association’s manual of diagnostic criteria, Nygren said.
The changes to the entry for autism spectrum disorder are generally considered minor tweaks compared to the differences in the fifth edition released nine years ago. That edition consolidated four labels — autistic disorder, Asperger’s syndrome, childhood disintegrative disorder and pervasive developmental disorder, not otherwise specified — under the umbrella diagnosis of autism spectrum disorder.

Autism advocates said they don’t expect the changes to have a significant impact on diagnoses.

“It’s a small but helpful clarifying change intended to emphasize the serious and disabling nature of (autism spectrum disorder),” said Jill Escher, president of the National Council on Severe Autism.

The council is among the groups advocating for a carveout for severe autism in future editions of the diagnostic manual, saying the current umbrella-style entry remains overly broad.

“We know from our conversations with some members of the DSM-5 work group that they had concerns about the watering-down of autism, which by definition is a significant impairment of basic functional abilities, and not a mere ‘difference,’ ‘neurotype,’ ‘learning style’ or ‘trait,'” Escher said.

ERRATA: Last Week's Story on Dept. of Education Grants

In last week's newsletter, we mentioned a program initiated by the Department of Education that would give grants to states to create programs to support competitive, integrated employment provided they agree to phase out employment opportunities that offer commensurate wages through FLSA Section 14(c) wage certificates.

This was not accurate. Though the grants offered in the Build Back Better Act did require the agreement to eliminate 14(c), the grant program offered by the DoE does not have that explicit requirement.

We apologize for the misinformation. The following article may help to clarify the intent of the grant program.

New Federal Project Aims To Help End Subminimum Wage
By Shaun Heasley | March 25, 2022

Federal officials are making a new push to get people with disabilities working in competitive, integrated employment as opposed to subminimum wage jobs.

States can vie for a piece of a $167 million demonstration project that the Biden administration is calling “a step toward ending practices that have allowed some employers to pay less than the federal minimum wage to people with disabilities.”

The grant program known as the Subminimum Wage to Competitive Integrated Employment demonstration project will fund innovative approaches to help people who are working in or considering jobs paying less than minimum wage to secure employment alongside their typically developing peers where they are paid wages on par with other workers.

The U.S. Department of Education’s Rehabilitation Services Administration, which is behind the new program, said it expects to award money to as many as 18 state vocational rehabilitation agencies and their partners to “help eliminate subminimum wage employment.”

The following two articles refer to staffing shortages and the end of the Public Health Emergency as they affect nursing homes. However, the workforce crisis is not limited to DSPs in nursing homes, and the Covid pandemic affects all long-term care facilities. Although they do not specifically mention ICFs or HCBS group homes, the parallels are clear.

Nursing Facility Staffing Shortages During the COVID-19 Pandemic
By Nancy Ochieng, Priya Chidambaram, and MaryBeth Musumeci, Kaiser Family Foundation, March 18, 2022

The disproportionate impact of the COVID-19 pandemic on nursing facility residents and staff has brought increased attention to long-standing workforce issues that can affect care quality and safety, such as staffing shortages and high turnover rates. These issues have existed for decades and have been associated with adverse outcomes, including increased mortality rates, hospitalization rates, and emergency department visits. Since the onset of the pandemic, more than 200,000 COVID-19 deaths have occurred among long-term care residents and staff, with most of these deaths (150,000 COVID-19 deaths) occurring among residents and staff in nursing facilities that are certified to receive Medicare and/or Medicaid payments. In response to these issues, the Biden Administration recently announced a set of nursing facility reforms, which were highlighted in the State of the Union address.

This analysis presents the most recent national and state-level data on nursing facility-reported staff shortages and describes the Biden Administration’s new policy initiatives to address staffing and other quality issues in nursing facilities. National staff shortage trend data spans from May 2020, the first month when nursing facilities were required to report COVID-19 facility data to the CDC, through February 27, 2022, the most recent week of data available.

The current level of staff shortages coincides with a period when health care providers, including nursing facilities, grappled with the impact of the Omicron variant, a highly transmissible variant that broke case and hospitalization records. This variant primarily affected residents and staff who were not vaccinated or boosted, though vaccinated older adults and those with other health conditions still faced a high risk of infection and mortality.

Providers May Face Emergency if PHE Ends Prematurely: AHCA
By Danielle Brown, McKnight's Long-Term Care News, March 23, 2022

An extension of the COVID-19 public health emergency declaration through the end of 2022 is critical to ensure long-term care providers have the necessary resources to respond to the ongoing crisis, the leader of the nation’s largest nursing home association said Tuesday.

The current PHE declaration is set to expire April 16. Federal policy only allows the Department of Health and Human Services to extend it for 90 days at a time. HHS leadership has previously said states would receive a 60 day notice prior to the expiration of the PHE.

Extending the declaration through 2022 would allow long-term and post-acute care providers to continue offering the most “efficient and effective care possible” to seniors, argued Mark Parkinson, president and CEO of the American Health Care Association/National Center for Assisted Living.

“The PHE ensures our healthcare system, including long-term care, has the policies and resources it needs to address this ongoing pandemic,” Parkinson wrote in a letter Tuesday to HHS Secretary Xavier Becerra. “Now is not the time to let crucial supports and flexibilities necessary to combat the virus end.”

He also urged the federal government to prioritize long-term care for access to urgently needed resources, like COVID-19 testing and treatments, in addition to extending the emergency designation.

“Our caregivers have worked tirelessly day after day to protect and provide for their residents, and they need steady access to resources during this pandemic and moving forward.”

CDC, WHO Criticized For Perpetuating Down Syndrome ‘Misinformation’
By Michelle Diament, Disability Scoop, March 22, 2022
Down syndrome advocates want the Centers for Disease Control and Prevention and the World Health Organization to rethink how they’re classifying the chromosomal condition.

At present, the health agencies have grouped Down syndrome alongside other birth defects. That’s a problem, according to the National Down Syndrome Congress.

“It should not be classified as a birth defect by anyone,” said Jordan Kough, executive director of the nonprofit, which recently put out a statement rebuking what the advocacy group calls “misinformation on Down syndrome” from prominent health organizations.

“It is a genetic condition and often people with Down syndrome have other birth defects or other issues like congenital heart disease, which is very common with people with Down syndrome, but qualifying all of Down syndrome as a birth defect in its own right we think is completely inappropriate and completely inaccurate and potentially leads to harmful perceptions of people with Down syndrome in the broader community,” Kough said.
The issue stirred up earlier this month when the World Health Organization posted on social media about World Birth Defects Day. The posting included a list of several common severe birth defects that included Down syndrome.

Parents and other advocates quickly clapped back over the inclusion of Down syndrome in the list and the World Health Organization updated the posting.

“WHO has edited its original post which, in conflating two distinct messages, unintentionally implied that Down syndrome was preventable through antenatal and newborn care,” the organization wrote in the update.

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, our Executive Director Hugo Dwyer, our legislative policy advisor Gayle Gerdes, Presidents Sam Friedman and Harris Capps, and members of the VOR Board of Directors have participated in over fifty 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.

State News - Opinion
Nebraska - Options Available
Letter to the Editor, by Joe Valenti, Norfolk Daily News, March 18, 2022

Across Nebraska, we have vulnerable individuals and families who need help in caring for their loved ones. I will address primarily those who need a level of care that you may not be aware that is offered in our state.

In a small percentage of individuals with developmental disabilities, we also experience significant behaviors that are very challenging to manage by parents, guardians and caregivers. This service need can sometimes be facilitated by approved group home providers in the community as well as independent providers who are hired by the individual’s family.

There is another wonderful option that you may have heard of, but you possibly have information and beliefs that are not accurate in 2022.

The Beatrice State Developmental Center (BSDC) in Beatrice is an Intermediate Care Facility (ICF), which is operated by the State. BSDC was established in 1885 as a completely self-sustaining state institution for the feeble-minded youth. Today BSDC is a 24-hour state and federally funded residential treatment facility dedicated to the provision of specialized psychological, medical and developmental supports to persons with IDD.

BSDC is located on 100-acre campus offering care, which is delivered in small, homelike settings, along with needed services and supports, which offer residents considerable space and freedom. The staff at BSDC have a long and caring history of offering some of the best care for some of our most vulnerable.

Yes, there have been times in the past where there have been some challenges to the level of care being offered. These challenges have been resolved years ago and today the residents and the guardians experience an environment and level of care that is at the highest level.

Pennsylvania - The Least of These: Making Disability Visible
From the Editorial Board, Pittsburgh Post-Gazette, March 19, 2022

Disability issues suffer from their invisibility in everyday life.

This is especially true of people with intellectual disabilities and autism (ID/A), and their families and caregivers. Whether they live in state-run facilities or community settings, people with ID/A spend much of their time out of view, and the state-mandated and -funded care they receive is unnoticed and unappreciated — except by loved ones.

This is why events like the Disability & Mental Health Summit hosted by Rep. Dan Miller, D-Mt. Lebanon, are so important. While the main event will be on April 28, on Thursday a bipartisan group of more than a dozen local legislators met with advocates, families and people with ID/A themselves to hear their stories — stories like Sandi Shaffer’s, who lost her home because her adult daughter, Kate, requires near-constant care and attention.

These are the moments that pierce the invisibility of intellectual disability and autism.

And yet they aren’t common enough. For many in Harrisburg, the invisibility persists.

Perhaps this is why funding for essential services for people with ID/A continues to be treated as unimportant by state officials, despite record surpluses. While Mr. Wolf’s proposed budget includes some boosts to disability funding, for which advocates are grateful, it is not enough to support a direct service provider (DSP) workforce.

The agencies that provide these services, and who advocate for the least of these who can’t advocate for themselves, have asked for a $65 million boost. Because they know that, without further funding to pay for more DSPs, and to pay them fairly, the system will collapse.

There are 12,000 Pennsylvanians with ID/A on the state’s perverse “waiting list” for services the state is obligated by law and by human decency to provide.

Five thousand of those people have an emergency need. Those needs are currently being met by family members, whose lives are upended and consumed by the task.

The budget process is not over yet, far from it. There is still time for Mr. Wolf and more legislative leaders of both parties and chambers to meet with families who care for loved ones with ID/A and to experience first-hand their dignity and passion and heartache. There is still time to do right by them and to fund the services they need.

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.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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.
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.

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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