March 24, 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


VOR's Calendar of Upcoming Events

Monday, April 10, 2023 - Our Spring Networking Meeting

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

Please come join with likeminded families of individuals with I/DD and autism for our quarterly Zoom meeting. Our topic this month will be how we can work with state and federal officials to ensure the safety of our loved ones.

This event is open to all. We will send out an open link to the Zoom meeting next week, but it helps us to know who might be planning to attend and to send them a reminder and calendar invitation. So if you would like to register, please email us at [email protected]


Sunday, May 7, 2023 - VOR's Annual Legislative Initiative

Time - To Be Announced

The meeting for our 2023 Legislative Initiative will take place on Sunday afternoon, on Zoom.

We ask that you register prior to the initiative, and that your membership is up to date.

We will supply the legislative "asks" in advance of the Sunday meeting, and we will supply you with contact information so that you may set up with your elected officials for the week(s) that follow.

The Sunday meeting will explain all that we are asking our legislators to do on behalf of our loved ones and the DSP caregivers who support their daily needs.

Registration will open soon.

You must be a current member or VOR to participate in this event.


June 11, 2023 - VOR's 40th Anniversary Annual Meeting

Tentative Time - 11:30 am - 5:30 pm (Eastern)

Our Annual Members Meeting (again, on Zoom) will take place on the afternoon or Sunday, June 11th. The schedule is yet to be determined, but the program will include a "State of the Union" speeches from our President, Joanne St. Amand, our Treasurer, Larry Innis, and our Executive Director, Hugo Dwyer, as well as reports from our various committee chairs on their work through the past year.

This Year's Speakers:

Congressman Glenn Grothman - (R-WI)

Representative Charlie Meier (Illinois General Assembly)

Amy S. F. Lutz, PhD.

And, as we do every year, we will have a special networking meeting for our members to submit reports on what is going in their states, so that we can share our problems, solutions, strengths, and hope.

This event is open to all. Registration will open in May.


Please consider supporting our advocacy by contributing as a

sponsor for any of these events.

National News:

The End of the Public Health Emergency:

Millions of People Could Lose Medicaid Starting in April

By Shannon Firth, Med Page Today, March 17, 2023

Due to pandemic-related continuous enrollment provisions, Medicaid rosters surged to over 90 million enrollees. On April 1, for the first time in 3 years, states will begin unwinding those provisions and disenrolling individuals no longer eligible for the program.

While a of states have taken numerous steps to prevent those still eligible for coverage from losing it for procedural reasons -- such as renewal letters being sent to a wrong address -- experts and lawmakers who spoke on panels at America's Health Insurance Plans 2023 Medicare, Medicaid, Duals & Commercial Markets Forum on Thursday remain concerned.

Arkansas state representative Deborah Ferguson (D-51), who is a dentist, said her biggest concern is for people with chronic conditions who "go from Medicaid to employer insurance or Affordable Care Act insurance ... are they going to have to get another prior authorization for treatment, are they going to have to get another prior authorization for medicine, is the formulary going to be different ... Are they going to have this huge gap in care that's really going to create problems?"

Typically, Medicaid processes renewals on an annual basis. Due to provisions in the Families First Coronavirus Response Act and the Coronavirus Aid, Relief, and Economic Security Act, states were required to maintain continuous enrollment for all Medicaid enrollees until the end of the public health emergency (PHE) and in return were granted a 6.2-percentage point bump in their Federal Medical Assistance Percentage (For each dollar the state spends on Medicaid, the federal government provides a match rate that changes year to year.)

As a result of these provisions, Medicaid and the Children's Health Insurance Program (CHIP) will have increased by 30% or 23.3 million people by March 31, according to estimates from the Kaiser Family Foundation (KFF).

Beginning on April 1, all 92 million enrollees will be up for renewal and the increased federal assistance will go away.

This change comes as a result of a provision in the Consolidated Appropriations Act, passed in December 2022, which decoupled the continuous enrollment provision from the PHE, and named March 31 as the end of the continuous enrollment period.

While Anne Marie Costello, MPH, deputy director for CMS's Center for Medicaid and CHIP Services, said she's impressed with the "tremendous investment" by states to reach enrollees, she noted that processing renewals for 92 million people over a period of 12 to 14 months is an "insurmountable task."

And it's a task that state agencies face while struggling to retain their workforce, like most other industries, she added.


Click here to see Updated Guidance on the End of the PHE from J.D. Supra, including a guide to how this affects Intermediate Care Facilities

Higher Autism Prevalence and COVID-19 Disruptions

From the CDC Website

Data collected by the CDC's Autism and Developmental Disabilities Monitoring Network in 2020 show that ASD continues to increase over previous years’ numbers. About 1 in 36 8-year-old children living in ADDM Network sites were identified with ASD in 2020, based on tracking in 11 communities across the United States. This number is higher than the ADDM Network’s 2018 estimates, which found that 1 in 44 8-year-old children were identified with ASD.

In 2020, children born in 2016 were 1.6 times as likely as children born in 2012 to be identified as having ASD by 48 months of age. This is important because the earlier a child is identified with ASD, the earlier they can access services and supports.

An analysis comparing the number of evaluations and ASD identifications before and after the onset of the COVID-19 pandemic found that before the pandemic, 4-year-old children were receiving more evaluations and identifications than 8-year-old children did when they were 4 years of age. However, these improvements in evaluation and ASD detection were wiped out beginning in March 2020. Delays in evaluation could have long-lasting effects as a result of delays in identification and initiation of services during the COVID-19 pandemic.

For the first time, ADDM data found that the percentage of 8-year-old Black (2.9%), Hispanic (3.2%), and Asian or Pacific Islander (3.3%) children with ASD was higher compared with 8-year-old White children (2.4%). This is the opposite of racial and ethnic differences observed in previous ADDM reports.

Also, for the first time, the percentage of 8-year-old girls identified with ASD was higher than 1%, but boys were nearly 4 times as likely as girls to be identified with ASD.

Read the report here

CDC: Candida Auris Spreading at "Alarming" Rate in U.S. Healthcare Facilities

By Alicia Lasek, McKnight's, March 22, 2023

Drug-resistant Candida auris, a known threat to nursing homes, is spreading at “an alarming rate” across United States healthcare facilities, according to a new analysis of data from the Center of Disease Control and Prevention. Adding to the concern, a growing number of these cases are resistant to echinocandins, a first-line treatment, investigators reported in the study, published Tuesday in the Annals of Internal Medicine.

C. auris is highly contagious, with 5% to 10% of patients colonized with the fungus likely to develop invasive infections. Infection accounts for up to 60% of the deaths in these cases, according to the CDC. It poses the greatest risk to people who are very ill, use invasive medical devices such as ventilators, or have long or frequent stays in healthcare facilities. 

The first U.S. cases were reported in the U.S. in 2016. Through December 2021, more than 3,200 clinical cases (in which infection is present) and 7,400 screening cases (in which the fungus is detected but doesn’t cause symptoms) have been recorded.

“The rapid rise and geographic spread of cases is concerning and emphasizes the need for continued surveillance, expanded lab capacity, quicker diagnostic tests and adherence to proven infection prevention and control,” said CDC epidemiologist Meghan Lyman, MD, lead author of the paper.

In the current study, Lyman and colleagues measured case counts reported to the CDC by health departments, and examined the volume of colonization screening and antifungal susceptibility results from 2019 to 2021.

The percentage increase in clinical cases grew from 44% in 2019 to 95% in 2021, they found. Also in 2021, colonization screening volume and screening cases rose by more than 80% and more than 200%, respectively. 


For further reading: Washington Post CBS News

Micki Edelsohn's "Mom with a Megaphone" Now Available!

We would once again like to thank Micki for her support during our 2023 Year-End Fundraiser.

And now, we are happy to announce that her book is available to the public on Amazon!

To order a copy, please click here!

If you have already read Micki's book, please consider going to the Amazon site and giving her a nice review. Micki has been such a great advocate for years!

Also, if you contributed over $250 to our Winter 2023 Fundraising Campaign and did not receive your copy of Micki's book, please contact us at [email protected] and we will follow up with you!

State News:

New Mexico Governor to Abusive Caregivers: ‘We’re Coming For You’

By Susan Montoya Bryan, March 20, 2023

Any caregivers who mistreat and abuse developmentally disabled or otherwise vulnerable people will be held accountable, New Mexico’s governor and top health officials warned Monday.

Gov. Michelle Lujan Grisham, members of her cabinet and law enforcement officials gathered at the state Capitol to provide an update on ongoing investigations into an alleged abuse and neglect case involving a developmentally disabled person that was brought to the state’s attention March 1.

The case resulted in the state terminating contracts with four providers in the Albuquerque area. It also prompted what the governor described as a forensic review of the entire developmentally disabled waiver system, which is meant to offer an alternative to institutional care.

Five more cases — including three in which individuals being cared for died — are under investigation. Officials said that they haven’t determined if those deaths are tied to abuse or neglect.

Over the weekend, state health workers visited more than 1,000 people who are part of the federally funded waiver program. As a result, another eight potential cases warrant future review, officials said.

“If you’re not providing the care that you were supposed to provide, we will find you and you will be held accountable. That’s it — zero tolerance in the state of New Mexico. We are coming,” Lujan Grisham said during a news conference.

Lujan Grisham, whose sister is developmentally disabled, called the recent cases in New Mexico alarming, and vowed that the state will not tolerate abuse, neglect and exploitation of any vulnerable populations.


Click here for further reading

New Jersey Nurses Say They're Overworked, Demand 'Safe Staffing' Law

By Eric Kiefer, NJ Patch, March 20, 2023

It’s no secret that tons of New Jersey nurses left the profession during the coronavirus pandemic, pushed to the breaking point by stressful conditions and overwork. But according to a coalition of nurses who are demanding “safe staffing ratios” at hospitals across the state, the problem began long before the COVID crisis – and it will endure afterwards, too.

Just ask Doreen Jones, a registered nurse at the Jersey City Medical Center.

“There will be a time when you will be in that bed – or I will be in that bed – and we wish that we have the nursing staff to take care of us,” said Jones, who has worked taking care of patients for more than 31 years.

Jones was among the nurses and health care employees who joined the Health Professionals and Allied Employees (HPAE) union at a rally in Trenton to push for S-304 on Monday. If it becomes law, the bill would create minimum nursing staffing levels in state hospitals, ambulatory surgical facilities, developmental centers and psychiatric hospitals.

A companion bill has been introduced in the state Assembly. Neither bill has seen a full vote.

Minimum nurse-to-patient ratios would vary depending on the type of unit, and would range from one registered professional nurse for every five patients in a behavioral health or psychiatric or a medical/surgical unit, to one registered professional nurse for every patient under anesthesia in an operating room.

The law wouldn’t decrease any existing nurse-to-patient staffing ratios that are already in effect. The state commissioner of health would be able to waive the requirements for any hospital or facility that they determine is in “financial distress.”

The law would be enforced by periodic inspections and responses to complaints.


As part of the campaign to pass the bill, HPAE released a position paper dubbed “Code Red: Understaffed. Overworked. Unsafe for Everyone.” Read it here.

SC agency for people with disabilities may be restructured because of frustrations

By Javon L. Harris, The State, March 16, 2023

In an effort to address what critics call a years-long mismanagement problem, lawmakers are looking to restructure the agency responsible for overseeing services for residents with disabilities and special needs.

A Senate panel on Wednesday voted to advance a bill that would reshape the Department of Disabilities and Special Needs by placing the agency in the governor’s cabinet and eliminating the current governing seven-member commission. The governor would appoint a director to run DDSN upon the advice and consent of the Senate.

“Keeping DDSN under the commission is failing the people who rely so heavily on this agency for their livelihood,” said Kimberly Tissot, president and CEO of Able South Carolina, a nonprofit disability-led organization that seeks to make the state a national model of equity and inclusion for all people with disabilities.

The agency currently is governed by a commission, which is appointed by the governor with the advice and consent of the Senate. The commission hires the executive director.

“This commission is preventing the agency from thriving, and we are in crisis in South Carolina because the DDSN is not functioning adequately and even resulting in abuse, neglect and sometimes death,” Tissot said.

Several years ago, The Greenville News reported on numerous problems in the agency, including a waiting list for services totaling nearly 8,000, and increasing rates of allegations of abuse, exploitation and neglect. In addition, some lawmakers say that the commission has routinely mismanaged DDSN and inappropriately meddled in the day-to-day operations of the agency.

Still, critics of the measure say eliminating the agency’s commission would greatly reduce oversight.

“There is really no oversight because one person would have complete authority over everything to do with the agency,” said Barry Malphrus, who has served as a member of the DDSN commission since 2020.

“The governor doesn’t have a lot of time to oversee this person. So, to me, the point of the commission is oversight.”

Tissot said that the issue of oversight is exactly where the commission has fallen short.


Inspectors Uncover Dangers at Georgia Facilities for Vulnerable Adults

By Katherine Landergan, The Atlanta Journal-Constitution, March 20, 2023

Federal inspectors found unsafe conditions at places in Georgia that care for adults who are elderly or disabled, according to a newly released audit.

Risks at these facilities ranged from potential exposure to toxic chemicals to facilities failing to give criminal background checks to their staff who care for vulnerable adults. The findings were unearthed as part of a review done by the U.S. Department of Health and Human Services over the summer.

“Providers did not always meet the needs of program participants or maintain compliance with state requirements,” the auditors said. “As a result, vulnerable adults were at risk in numerous instances.”

The Office of the Inspector General, under the U.S. Department of Health and Human Services, picked 20 providers out of roughly 100 across Georgia. Inspectors then showed up for unannounced visits in July 2022.

The audit looks at just a narrow set of services for people aged 65 and older, as well as certain people with disabilities. It’s part of a broader inspection of adult day services, and inspectors have found violations in other states across the nation.

Among the 20 providers audited, 19 did not comply with one or more health or safety requirements. Among the problems were unclean conditions in five facilities, exposed electrical wiring in five facilities, and toxic chemicals in unlocked areas in four facilities.

Ten of the providers didn’t conduct criminal background checks or nurse aide registry checks on staff prior to giving them a job, and three didn’t have licensed medical personnel on staff. One provider was using a driver with an expired driver’s license.

What’s more, the audit found the state failed to identify these problems in their own inspections of these places.

Read the full article here

The 30-page audit, which includes the state’s response, can be found here.

Health Providers Scramble to Keep Remaining Staff Amid Medicaid Rate Debate

By Keely Larson, Kaiser Health News, March 24, 2023

Andrew Johnson lets his clients choose what music to play in the car.

As an employee of Family Outreach in Helena, Montana — an organization that assists developmentally disabled people — part of his workday involves driving around, picking up clients, and taking them to work or to run errands.

About two weeks earlier, Johnson testified at a hearing at the Montana Capitol in support of a bill that seeks to raise health providers’ Medicaid reimbursement rates to levels aligned with the average cost of the care they provide. The bill is informed by a 2022 study that recommended benchmark rates after its authors found that Montana Medicaid providers like Family Outreach were being significantly underpaid.

“The provider rates need to be funded so people that work in this field or that work in adjacent fields can have solid ground, a place where you can build a career,” said Johnson, who makes $16.24 per hour in his position as an individual living specialist.

Republican Gov. Greg Gianforte and legislators agree that Medicaid rates need to rise; where they disagree is by how much. The proposals range from the bill Johnson testified for — Democratic Rep. Mary Caferro’s bill to raise rates to the study’s benchmarks — to Gianforte’s plan to fund 91% of that benchmark in 2024 and 86% in 2025.

Meanwhile, the Republicans leading the House Appropriations Committee, a key budget panel, are proposing an average increase of 92% for fiscal year 2024 and 97% in 2025.

Providers and leaders who work in behavioral health, developmental disability, long-term care, and family support services have attended the multiple hearings on rate adjustments, saying thanks for the proposed increases but asking for more. Many providers said the benchmark rates in the study are already outdated.

Providers across the United States say they haven’t seen significant reimbursement increases in more than a decade, according to Shawn Coughlin, president of the National Association for Behavioral Healthcare. Behavioral health can be an afterthought for policymakers, resulting in lower rates than for medical or surgical reimbursement, he said

Michael Barnett, associate professor of health policy and management at the Harvard T.H. Chan School of Public Health, said the supply of staff is inadequate to meet demand for behavioral health care across the U.S.

“And it’s not clear we’re going to meet any of that without paying people more,” Barnett said.

Some health providers have raised wages but still struggled to draw workers and keep the ones they’ve got. Family Outreach raised the wages of some direct care workers from $11 per hour to $12.20 per hour this year, and by more in places where the cost of living is higher, such as Bozeman. But even starting wages of $16 or $18 an hour aren’t attracting enough people to work there, Family Outreach Program Manager Tyler Tobol said.

“It’s a field that not a lot of people want to get into, so those that we can find, I think being able to pay a higher wage, a living wage, I think that would be the best benefit we get out of the rate increase,” Tobol said.

Read the full article here

Florida - Federal Law Ends Key Training Center ‘Workshop'

By Nancy Kennedy, Citrus County Chronicle, March 17, 2023

For the past 36 years, as part of the Key Training Center’s adult day training program, clients could work in the workshop.

The center had a long-standing contract with ClosetMaid, and clients worked at various tasks, from assembling brackets to packaging them.

They sat at tables together, chatting with each other or a Key Center workshop instructor as they worked.

They were paid at a piece-work rate and received a paycheck each month.

For some, their paycheck might be $10. The highest amount was around $400.

But the amount didn’t matter.

It was always about the feeling of accomplishment, the reward for their work.

“For some of them, they’d have someone take them to the bank so they could cash their check and then go to the store to buy something for themselves or someone else,” said Barbara Branch, Key Training Center adult day training director. “It was important to them, and this has been devastating for them.”

“We’ve known about this for about a year, and have had this in the plans for a while, but it’s still hard,” said Melissa Walker, Key Training Center executive director. “So, now we’re making changes to our adult day services.”

In 2014, the Centers for Medicare and Medicaid Services (CMS) implemented the CMS Final Rule that requires all states to increase opportunities for individuals with intellectual and developmental disabilities to “access employment in competitive integrated settings,” meaning a Key Center client could not work in the workshop for less than minimum wage.

“It became clear to us that, to be able to receive the Home Community Based Services Medicaid waiver, which is almost 60 percent of our funding, we could no longer continue (with the workshop),” Walker said.

However, with the closing of the two workshops, one on the Lecanto campus and the other in Inverness, no Key Center employee was laid off, and no client was left with nothing to do.

“We looked at our day service program and asked, ‘What can we do to be able to work with this new transition plan from the state?’ Basically, we’re able to continue the day services program we’ve always had (minus) the work part.”


Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

VOR Bill Watch:

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


H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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.

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?
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Contact us at [email protected]
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