January 20, 2023

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.

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


The Importance of the Elevator Speech

For years, we have spoken of the importance of the "Elevator Speech" - a short, efficient description of a topic that you can prepare to explain something with a stranger in the time it takes for an elevator ride up a dozen or so floors. VOR's elevator speech is posted at the top of each newsletter, "VOR is a national non-profit organization that advocates for high quality care and human rights for all people with intellectual and developmental disabilities."

I had occasion to use an elevator speech earlier this week.

I had attended a meeting of a non-profit group that helps non-profit organizations here in NY on Tuesday. The guest speaker was Majority Leader Chuck Schumer. There was a brief Q&A after the Senator gave his speech, but I was not one of those called upon. After the meeting, however, I positioned myself to walk out to the elevator at the same time as Mr. Schumer, his aides, and his security detail.

While walking down the hall, I introduced myself and VOR quickly, and explained our disappointment at not being granted parity funding in the American Rescue Plan Act or the original proposal of the Build Back Better Act. He asked what I meant, and I explained that I had hoped the funding would go to all people with I/DD and autism, not just those receiving services through HCBS.

As we reached the elevator, I changed subjects. As the 11th floor elevator doors closed, I told him that my biggest concern for the 118th Congress was the DSP Crisis, the shortage of Direct Support Professionals for people with I/DD and autism, as well as the aging population. He appeared to understand what I was talking about, so I went on to say that we needed Federal Solutions to this problem, and I hoped that VOR could partner with Congress to help develop those solutions. I handed him my business card, which he passed to his Communications Director, who then passed me her business card. The doors opened on the ground floor. His security detail let us out (even held the door for me as I put on my coat!) and we parted company.

All that, in about 45 seconds.

When I got home, I composed an email to his Coms Director, explaining in slightly better detail the two issues I had brought up, and expressed my hope that we could continue this conversation with the Majority Leader or his Health LA's in his D.C. office. I haven't head back, so plan to follow up next week.

Here's hoping....

Amazon to Close Charitable Program AmazonSmile 

By Addy Bink, The Hill, January 18, 2023

Amazon will be closing its charity program, AmazonSmile, in the coming weeks in order to “focus its philanthropic giving to programs with greater impact.”


We would like to thank all of our supporters who donated to VOR through this program over the years.

National News:

Mortality Rates Higher for Medicaid HCBS Recipients During COVID-19

By Briana Contreras, Managed Healthcare Executive, January 11, 2023

It was found that excess mortality for this group of people with disabilities was 7.4 times that of community-dwelling Medicaid beneficiaries of the same age who were not receiving home and community-based services, and 26.6 times that of the general population.

Mortality rates appeared to be higher for beneficiaries receiving Medicaid home and community-based services (HCBS) compared to beneficiaries not receiving these services during the COVID-19 pandemic.

Shared in a recent analysis published in Health Affairs, data was collected from 14 private health plans in 12 U.S. states during the initial months of the pandemic from March 2020 to December 2020. Data was gathered to examine excess mortality rates among recipients younger than 65-years who received Medicaid long-term services and supports (LTSS) in the form of HCBS.

Authors of the analysis shared that more than 23% of all COVID-19 related deaths in the U.S. have been linked to long-term care facilities. Though, very little is known about the impacts of COVID-19 on those with long-term services and support needs under disabilities who are not living in these facilities. Those with disabilities typically are receiving care through Medicaid HCBS.

It was found that excess mortality for this group of people with disabilities was 7.4 times that of community-dwelling Medicaid beneficiaries of the same age who were not receiving home and community-based services, and 26.6 times that of the general population. As a proportion of expected mortality, excess mortality for older HCBS recipients ages 65 and up was slightly higher but comparable to older nursing home residents.

The monthly sample for the analysis comprised about 55,000 adults younger than 65 years and 90,000 adults 65 and older receiving Medicaid HCBS.

These groups of HCBS recipients suffer from high mortality rates due to likely factors of societal barriers, individual risk factors and indirect impacts. People receiving Medicaid HCBS have high rates of secondary health conditions that contribute to greater risk of contracting COVID-19 and experiencing poorer outcomes. Some reside in group settings or attend congregate day programs, placing them at greater risk for exposure. In addition, people typically rely on daily in-person services delivered by caregivers who routinely enter their homes, which further increases risk for exposure to COVID-19.

Additionally, people with disabilities, family caregivers and direct care workers in the community faced significant barriers obtaining PPE and testing as COVID-19 spread. Staffing was also an issue in the availability of these caregivers, which contributed to patients going without essential daily supports and services. Though more research is needed, people with disabilities have reported delaying or going without routine preventive and specialty care during that time period. This can have dire impacts on this population, the analysis said.

Authors stated this study helps shine a light on a population that has largely been invisible in the public discourse and COVID-19 response. Their findings highlight the vulnerability of the HCBS population during the pandemic.


Federal Autism Panel Approves New Strategic Plan

By Michelle Diament, Disbility Scoop January 19, 2023

For the first time in years, a federal panel tasked with guiding the nation’s priorities on autism is moving to update the government’s agenda for addressing the developmental disability.

The Interagency Autism Coordinating Committee voted Wednesday to approve a new strategic plan. The nearly 200-page document provides recommendations to the secretary of health and human services on autism research, services, supports and more. There were 39 members of the committee who voted to approve the plan and just one who voted against it.

The strategic plan is the primary responsibility of the IACC, a panel comprised of government officials and members of the autism community, and is often relied on by both federal agencies and private organizations. Under the Autism CARES Act, the IACC is supposed to update its strategic plan each year, but the last update came in 2019. Since then, the committee did not meet for two years after the terms of all of its members expired and there was a delay in appointing new members.

The new plan, which is dated 2021-2023, includes recommendations on seven general topics including diagnosis, biology, interventions, services and lifespan issues. It also calls for a “substantial increase in funding” from the government for autism research and services to reach $685 million by 2025.

In addition, the update includes a shift in the language that’s used around autism despite concerns from some advocates that doing so would minimize the challenges faced by many families.


Read the editorial from Amy Lutz on the harmful effects of the altered language in the report (reposted from a previous issue of the VOR Weekly Newsletter)

CMS Issues “In Lieu of” Services Guidance to Address Health-Related Social Needs in Medicaid Managed Care

By Troy A. Barsky, Janet Walker & Allison Kwon, Crowell Health Law, January 18, 2023

On January 4, in its most recent effort to expand federal support for addressing health-related social needs (HRSNs), the Centers for Medicare & Medicaid Services (CMS) issued guidance to clarify an existing option for states to address HRSNs through the use of “in lieu of” services and settings policies in Medicaid managed care. This option is designed to help states offer alternative benefits that take aim at a range of unmet HRSNs, such as housing instability and food insecurity, and to help enrollees maintain their coverage and improve health outcomes. 

“In lieu of” services can be used as immediate or longer-term substitutes for state-covered services or settings to offset potential future acute or institutional care and improve the quality and health outcomes for the enrollee. The recent guidance builds on the 2016 Medicaid and Children’s Health Insurance Program (CHIP) managed care final rule, which formally recognized states’ and managed care plans’ abilities to cover “in lieu of” services and significantly expanded its flexibility by permitting coverage of services in an institution for mental disease (IMD) with certain limitations. The final rule required that states’ “in lieu of” services must be medically appropriate and cost-effective, prevents managed care plans from requiring services for enrollees as a substitute for a state plan covered service or setting, and factors services’ utilization and actual costs into capitation rates.

States and CMS are using 1115 waiver authority to pursue “in lieu of” services and other HRSN-related services and supports. In recent months, CMS approved 1115 waivers in Arizona, Arkansas, Massachusetts, and Oregon that include “in lieu of” services proposals to address HRSNs. While several states currently use “in lieu of” services to cover mental health and substance use disorder treatment in IMD settings, CMS explains that additional guidance is necessary at this time for non-IMD and other types of services, including those to reduce the need for future costly state plan-covered services.


High Court Could Change The Rights Of Students With Disabilities To Sue For Damages

By Linda Jacobson, The 74, via Disability Scoop January 20, 2023

The U.S. Supreme Court this week considered whether students with disabilities can seek financial relief under a federal law prohibiting discrimination even if they’ve already settled a case under the Individuals with Disabilities Education Act.

Comments and questions from the justices seemed to lean toward yes.

“All she wants is to be compensated for what she says occurred to her during the period of her education,” Associate Justice Ketanji Brown Jackson said, offering a hypothetical example of a senior who wants to drop out. “Does she have to sit in front of a hearing officer and talk about ways in which her education could be changed?”

While the arguments in the case are complex, they come down to whether Congress meant for students to give up their rights under IDEA — which does not provide monetary damages — in order to bring a lawsuit seeking a financial award under the Americans with Disabilities Act. Advocates for students with disabilities argue that was never the intention of the law, while those representing school districts are concerned about the potential for “dual-track litigation” under both IDEA and ADA.


International News:

Australia - Watchdog Reveals Thousands of Reports of Sexual Misconduct, Injury, Abuse and Neglect in Disability Group Homes

By Stephanie Dalzell, ABC (Australian Broadcasting Commission, January 15, 2023

There have been more than 7,000 serious incidents — including sexual misconduct, serious injury, abuse and neglect — in disability group homes over the past four years, according to a startling new report from the NDIS complaints watchdog.

Some of the incidents detailed in the National Disability Insurance Scheme (NDIS) Quality and Safeguards Commission's report involved:

  • a person with disability being exposed to pornography by a support worker
  • the alleged sexual assault of a person with disability by a support worker
  • the emotional or psychological abuse of a person with disability through coercion or undue influence.

The report examined the running of disability group homes in Australia by seven providers, revealing more than 7,340 reportable serious incidents in a supported accommodation setting between July 2018 and September 2022.

That figure is particularly notable, given fewer than 20,000 people with disability live in group homes.

The authors of the report found there were 122 reportable incidents of unlawful sexual contact of an NDIS participant in a group home, with some of those involving a person with disability being exposed to pornographic material by a support worker.

There were also 960 reportable incidents of unlawful physical contact, with some including the alleged sexual assault of a person with a disability by another person with a disability or a support worker.

And there were a further 1,700 reportable incidents of serious injury, 1,700 reports of abuse and 1,300 of neglect of a person with disability in a group home setting.  

NDIS Minister Bill Shorten conceded that the figures were extraordinary, saying people who lived in supported accommodation often had profound intellectual or physical disability and complex support needs.

"We seem to be learning the same lessons that we should have already learned," he told the ABC. 


Related Article: New Australian Housing Models Could Prevent Harm

State News:

Pennsylvania - Despite Legal Battle, White Haven Center to Close by March

By: Zachary Smith, PA Homepage, January 18, 2023

A state center serving people with intellectual and developmental disabilities is set to close its doors over the next two months in spite of a legal battle to prevent it.

The closure of White Haven Center was announced in August of 2019 and was said to take at least three years.

In spite of numerous protests by families, workers, and even politicians; the center is on track to close between late February to early March.

Gregory M. Smith, former White Haven Center Director and current President of the Board of Trustees, has been involved with the legal battle that family members of several residents have fought since the announcement.

Smith is not optimistic at this time that the lawsuit will save the center. “The federal court is dismissive of the lawsuit and did not give it its just due or consideration,“ Smith explained.

The closure will occur after the remaining residents have been relocated, a process Smith says will take until late February to early March. He states that moving the residents from White Haven Center could be detrimental to their conditions.

“I believe it may result in the premature death of many of those residents.“

The Pennsylvania Department of Human Services states that less than 40 people remain at the center.

Read the full article here

Idaho - Report Outlines Abuses People with Developmental Disabilities Face in Idaho

By Ruth Brown, Idaho Capitol Sun, January 16, 20023

One in four Idahoans, or roughly 369,000 people, live with a disability

Maria Juarez knew her son would eventually need help from caregivers other than herself. She knew she would have to expose him to adults outside of her family. Brandon Juarez has Down Syndrome and is unable to speak.

When a day came that Maria learned of his abuse, the Nampa mother remembers asking her son for forgiveness when she couldn’t find the answers he needed or communicate with people about the abuse he had endured.

She spoke to Idaho Reports in November, through a Spanish interpreter, about the need to improve the way Idahoans report abuse and neglect in vulnerable adults.

Juarez is a member of the Idaho Council on Developmental Disabilities and advocates for families like hers.

In May, a Boise State University study published in partnership with the Council and DisAbility Rights Idaho outlined the victimization that occurs among people with disabilities. It’s the first of three reports, and the survey focused on the experiences of professional stakeholders working with disabled people and those in victim services.

One in four Idahoans, or roughly 369,000 people, live with a disability. In Idaho, mobility and cognitive disabilities are the most common.

For those people, the rate of violent victimization is nearly four times higher than those without a disability, according to the recent report. Only about 38% of those violent victimizations will be reported, while the rate is closer to 45% for people without disabilities.

Read the full article here

Download the study here

Ohio - Montgomery County Board of Developmental Disabilities Services Declares Fiscal Emergency

From WHIO TV, January 18, 2023

Rise in cost and loss of revenue caused Montgomery County Board of Developmental Disabilities Services to declare a fiscal emergency.

The Montgomery County Board of Developmental Disabilities Services (MCBDDS) is working with Montgomery County Administration to address the financial shortfall beginning in 2024.

Dr. Pamela Combs, the superintendent of MCBDDS, said, “We’ve seen this coming, so it’s no surprise. We’ve managed around it and tried to hold it off as long as possible.”

Combs noted several factors contributing to this financial need. These factors include:

  • A doubling in demand for DDS services since 2009, eligibility for which is dictated by the State of Ohio.
  • A continual loss of revenue since 2009 which has resulted in a $13 million loss on an annual basis since 2017, including a loss of $7 million in day services and transportation revenue annually when the agency was forced to privatize these services due to a federal mandate.
  • Increase in payments to the State of Ohio of $773,000 annually to cover the costs of services to individuals with developmental disabilities between 2011 and 2022. Previously, the county was required to pay 27 cents on the dollar for each waiver; now, that cost is 37 cents on the dollar. These costs will continue to increase as the federal government rolls back COVID-related subsidies.
  • A 6.5% increase in waiver costs implemented by the state that all counties are expected to implement retention payments for direct care professionals. The board previously said this was to cover wage increases for professions but Wednesday clarified it was for retention payments. This increase will be retroactive to April 2022 and is expected to cost approximately $2 million in State Fiscal Year 2023, and more thereafter.
  • An increase in the cost of care for difficult-to-serve individuals due to the closure of state Developmental Centers.

Several cost-reduction measures have been implemented to leverage funds more efficiently, such as reductions in staffing costs, the closure of four service facilities and one administrative office, a move to full-time agency teleworking, and the implementation of just-in-time payment of services.


Iowa - Disability Rights Iowa Suing State for 'Inadequate Mental Health Resources'

By Laryssa Leone, We Are Iowa, January 12, 2023

A local disability rights advocacy group is suing the state of Iowa for providing what they claim as inadequate mental health resources.

"I think we're at a real crisis point with our mental health system for our youth," said Catherine Johnson, executive director of Disability Rights Iowa.

The lawsuit alleges that Iowa has consistently failed to provide legally required and medically necessary intensive home-based services for youth with serious emotional disturbances.

"This case, big picture, is about the state's responsibility to provide these legally required services, our plaintiff's children's rights under the federal Medicaid Act, under the Americans with Disabilities Act, and under the Rehabilitation Act to those services in an inclusive setting," Johnson said.

According to Johnson, approximately 87,000 Iowa children have been diagnosed with mental health issues. 

She also shared a 2021 report cited in the lawsuit that lists Iowa as the 41st worst in the nation for providing mental health care for kids ages 12-17.


New York - New Program to Bridge Oral Health Disparities

From Columbia University Irving Medical Center, via Mirage, January 18, 2023

Columbia University’s College of Dental Medicine recently received a $500,000 grant from the Mother Cabrini Health Foundation to launch a program to bridge disparities in vulnerable populations and people with intellectual and developmental disabilities. CDM knows from its own extensive clinic experience with pediatric patients, young adult patients and patients with special needs, that patients with special needs often have some of the biggest challenges accessing oral healthcare. Barriers range from mobility and transportation issues, to accommodations within a clinical setting, to extremely limited operating room (OR) availability, to payment and reimbursement mechanisms that don’t begin to cover the costs of the required services and support.

In addition, according to a 2021 survey by New York State’s Office for People With Developmental Disabilities’ Task Force on Special Dentistry, over 15,000 New Yorkers with Intellectual and Developmental Disabilities, or I/DD, struggle to get access to comprehensive dental care, and can end up on waitlists of a year or even more to get the care needed. CDM’S program seeks to help bridge disparities that exist in healthcare and disproportionately affect this vulnerable and special needs population by leveraging a service model that utilizes dental vans, community dental healthcare coordinators (CDHC), and community partners to provide care to these individuals, while training dental students to care for such patients, creating a pipeline of dentist prepared to meet the needs of this segment of the community in their future practice settings and across the career spectrum.

With a newly built dental van, funded through the generosity of the Mother Cabrini Health Foundation, CDM has new capacity to get out into the community and meet clients where they are and conduct oral health screenings and assessments of patients, as well as the capacity to provide primary dental care for patients at its teaching clinic for patients who need more intensive services. In addition to the existing clinical infrastructure, CDM’s Director for Management of Vulnerable Populations, Dr. Marc Michalowicz, will collaborate with the school’s leadership, community partners and with NYS Academic Dental Centers’ initiative on special needs fellowship to create an infrastructure and a modern service-learning curriculum that will better prepare future generations of graduating dentists to more effectively manage special populations.


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 receive our newsletter.

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:

Currently there are no bills in Congress for us to support or oppose.

(Currently, there is no congress, per se)

Please watch this space for information as bills affecting people with I/DD and autism are introduced.


[Please click on blue link to view information about the bill]



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