December 15, 2023

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

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For the month of December, we are offering Free One-Year Digital Memberships to new subscribers.

We want to get more information out to more people and hopes to be a resource for families. Please feel free to take advantage of this offer and share the link with anyone you like.

Please click here, or on the link below.

VOR's Winter Fundraising Campaign

For over Forty Years, VOR has advocated for the needs of people with I/DD and their families, supporting a Full Continuum of Care.

We believe that there are no simple, one-size-fits-all solutions. We have consistently advocated to innovate and invest in the ICF system as an integral part of our system of I/DD services.

We know that without appropriate and high quality large congregate care facilities, individuals who cannot be properly served in HCBS waiver settings will be placed into inappropriate large care facilities - warehoused in psychiatric facilities that do not properly address their needs.

We need your help in ensuring that people receive the care they need, whether in ICFs, Group Homes, Intentional Communities, or their Own Homes, and that the caregivers, and family caregivers who help them to lead their best lives are appropriately compensated for their work.

VOR strives improve the DD System for all, regardless of their level of need, the form of care that is best for them, and the manner in which they are employed.

Please Click Here to Join, Renew or Donate

Guardianship vs Supported Decision Making

Those who advocate for Supported Decision Making as an alternative to guardianship have been active again in recent months. Case in point, the Ohio DD Council released a new booklet on the subject, saying that, "It was restructured to emphasize supported decision making as a first option to consider and guardianship as one of the last options to consider."

One concerned Ohio mother asked us to please re-print VOR's document on Guardianship vs. Supported Decision Making to share with our members. While it is a one-page doc, it's too long to print here, so we encourage our readers to view it on our website at:

You may also download it by clicking here.

Good News from Nebraska

A father whose son resides at the Beatrice State Developmental Center sent us a link to a report from the Nebraska Department of Health and Human Services, which includes the following language about the state's ICF/IID System:

" The maintenance of ICFs/IID as an option for individuals with severe and complex DD conditions who choose to receive services in this manner should continue. The Team is including this recommendation for consideration based on the following:

  • ICFs/IID are a service option that should be available within the DD service system, as they provide high-level support for people with the highest acuity needs.

  • Providing a choice of where individuals receive services is an important aspect of long-term services and supports. ICFs/IID should be maintained as a choice for individuals who choose to call an ICF/IID “their community.”

  • Promotion of ICFs/IID, and BSDC in particular, as a community for individuals who chose to live there will reduce stigma and fear around receiving services from these entities for individuals who require this LOC.

  • Stakeholder feedback on the importance that BSDC plays for them and their loved ones cannot be understated. Proper supports and funding to continue to have BSDC as a service option is critically important for those BSDC serves. "

Download the report here (go to page 158)

This Week's News:

Editor's Soap Box

So many articles came in this week posting conflicting views of the state of DD Services this week. Some say that the government is doing wonderful things, while others show numbers indicating ta very different reality.

Let's start with two articles from Disability Scoop...

Medicaid Home And Community-Based Services Program Gets $37 Billion Boost

By Michelle Diament, Disability Scoop, December 14, 2023

A pandemic relief package that was expected to funnel $12.7 billion to states to bolster Medicaid home and community-based services actually distributed nearly three times that much in extra funding, the White House says.

In 2021, Congress approved a temporary funding bump for home and community-based services as part of the American Rescue Plan, a $1.9 trillion bill passed in response to the COVID-19 pandemic. The extra dollars came in the form of a 10% rise in the federal government’s share of spending on the program between April 2021 and March 2022.

Now, the Biden administration says that interest in the funding far exceeded expectations. About $37 billion has been distributed across all 50 states for the Medicaid program, which many people with developmental disabilities rely on for support to live in the community.

States were given significant flexibility to use the additional home and community-based services funds, but they had to be spent on services that were not available before April 2021.

Most of the money — nearly $25 billion — is going toward efforts to retain, expand and train the direct care workforce, the Centers for Medicare and Medicaid Services said, through pay increases, bonuses and other efforts in every state. Funding is also being allocated for workforce training, steps to ensure that services are high quality and toward reducing or eliminating waiting lists for home and community-based services, among other priorities.

CMS has given states until March 31, 2025 to use the funds.

Read the full article here

Read the White House statement from Vice President Harris here

Waiting Lists For IDD Services Continue To Swell

By Shaun Heasley, Disability Scoop, December 12, 2023

Hundreds of thousands of people with developmental disabilities remain on waiting lists for services across the country and their numbers are growing.

A new analysis finds that nearly 700,000 people in 38 states are on waiting or interest lists for home and community-based services. That total is up 6% since 2021. The findings come from a survey of Medicaid programs by KFF, formerly known as Kaiser Family Foundation, which conducts health policy research.

Almost three-quarters of those waiting for home and community-based services are individuals with intellectual and developmental disabilities, data shows, while seniors and adults with physical disabilities account for the rest.

Currently, people are waiting an average of three years for waivers, but most do have access to other services through Medicaid state plans while they wait, KFF found.

One factor driving changes in the number of people reported to be waiting for services, KFF noted, is that states are increasingly using alternate terms such as “interest lists.” When the organization modified its survey to account for new terminology, it found that there are actually more people on interest lists this year than waiting lists. In addition, more states are moving to screen individuals for Medicaid eligibility before adding them to waiting lists, which has limited volumes.

Going forward, KFF warns that ongoing shortages of direct support professionals could exacerbate waiting and interest lists.

Read the full article here

Read the KFF Report here

Read a related KFF Report about How States Interpret and Implement the HCBS Settings rule here

There are two things to remember as you look at these conflicting stories:

First, these are funds from the American Rescue Plan Act (ARPA), which was a temporary allocation of federal funds to compensate for losses suffered during the worst days of the Covid-19 pandemic. Those allocations will end soon. What will happen to the DSP work force when those funds are not renewed?

Second, what about people in ICFs and Nursing Facilities that were not included in ARPA? The emergency allocations only went to people receiving Medicaid Long-Term Services and Supports through the HCBS Waiver. The ICF and Skilled Nursing Systems had similar, if not greater, losses during the pandemic, yet were excluded from receiving these funds by the architects of the bill.

And now, let's look at some articles from Virginia. To keep a perspective on this, remember that VA closed two large well-run state-operated ICFs a few years back, and has plans to close others, following a DOJ action stating that the state was putting people into institutional care instead of smaller HCBS group homes. Remember also that the families involved fought to keep their ICF services, having invested in ensuring the high quality of care their loved ones received there. So where are people being sent when the HCBS system fails to meet their needs....

State Report Recommends Sweeping Changes to Virginia Psychiatric Hospital System

By Sarah Vogelsong, Virginia Mercury, December 12, 2023

In a sweeping report released Monday, a state commission recommended changes to Virginia’s decade-old “bed of last resort” law and urged the state to put greater pressure on private hospitals to accept patients under commitment orders. 

The proposals, put forward by the Joint Legislative Audit and Review Commission, a state body that conducts studies for the General Assembly, are aimed at helping relieve Virginia’s beleaguered psychiatric hospital system. 

“For years, Virginia state hospitals have routinely operated at their maximum capacities,” said JLARC Director Hal Greer. “The General Assembly’s and administration’s efforts to build out much-needed crisis response services statewide will hopefully alleviate the need for many Virginians to be involuntarily placed in an inpatient hospital. But it will take some time before we will start to see the census pressures at state hospitals relieved by these investments.” 

Virginia’s nine psychiatric hospitals — eight of which serve adults and one, the Commonwealth Center for Children and Adolescents in Staunton, devoted to youth — have increasingly found themselves short on both beds and staff. While industry standards say no more than 85% of staffed beds at psychiatric hospitals should be filled due to safety concerns, JLARC found that bed capacity at seven state hospitals routinely exceeds 95%, with three operating at 100%. 

The crisis peaked in 2021, when staff shortages caused the Virginia Department of Behavioral Health and Developmental Services to close five state hospitals to new admissions. 

Officials and experts say overcrowding in psychiatric hospitals produces risks for both patients and staff. JLARC’s findings bear that out: Between January 2022 and May 2023, the commission found 7,400 “physical incidents” occurred between patients at state psychiatric hospitals, with nearly 900 of them resulting in patient injury. At least 20% of staff at all nine hospitals reported they did not believe their facility was a safe place for patients; at Southern Virginia Mental Health Institute in Danville, that percentage was 42%. 

Among the worst hospitals identified by JLARC is the Commonwealth Center for Children and Adolescents, which mostly serves youth between the ages of 12 and 17 and which the commission recommends lawmakers consider closing.

The bed of last resort requirement was the result of tragedy. In 2013, state mental health officials were unable to find a bed for Austin “Gus” Deeds, the son of state Sen. Creigh Deeds, D-Charlottesville, who had been placed under an emergency custody order while undergoing a mental health episode. After being sent home to his family, Gus Deeds stabbed his father 13 times before shooting himself. 

Sen. Deeds survived the attack and the next year carried the bed of last resort law to ensure that no Virginian in crisis fell through the cracks again. JLARC noted Monday that “increased admissions to state hospitals likely mean the law has served as a safety net for many Virginians experiencing psychiatric emergencies.”  

But it has also had unintended consequences. JLARC found it has “contributed to the increase in inappropriate admissions to state hospitals, such as patients with dementia or intellectual disabilities, whom state hospitals are not equipped to treat.” And, the commission continued, it “does not allow state hospitals to deny admission to an individual under a TDO, even if it does not have sufficient numbers of staff, staff with the right types of expertise or training to treat them, or adequate physical space or equipment for use in treating them.” 

State hospital workers interviewed by the commission said the law leads to unsustainable and unsafe circumstances. 

Read the full article here (it's long, but thorough)

Related article from the Washington Post is available here

Youngkin Proposes $300 Million in Funding for Virginians with Developmental Disabilities  

By Victoria Lucas, WLRC-8 News, December 13, 2023

$300 million has been added to Governor Glenn Youngkin’s proposed budget to fund priority one waiver slots for Virginians with developmental disabilities and those who are on the current waitlist, his office announced Wednesday.

According to the Office of Governor Glenn Youngkin, there are currently over 3,400 Virginians on the priority one waiting list for Medicaid Home and Community-Based Developmental Disability (DD) waiver slots.

Developmental disability waivers offer support and services to both children and adults on Medicaid. The services differ based on the individual’s need and the program criteria.

“Whether it be paying for in-home care or the kind of assistive technology that can help an individual avoid living in a hospital, nursing home, or other institution, we know that these waivers can change lives,” said John Littel, Virginia’s Secretary of Health and Human Resources.

The waivers are said to cover services such as medical care, employment supports, assistance for community living, behavioral interventions and more.

The 3,400 who are on the priority one waiting lists are said to urgently need the services and supports offered by the waiver in one year or less.

Read the full article here

And then there's the problem with Words...

Maybe if we keep getting rid of references to intellectual disabilities, or severe / profound intellectual disabilities and autism....

After Tackling ‘R-Word,’ Disability Group Seeks To Erase Stigma Associated With ‘Special’

By Michelle Diament, Disability Scoop, December 11, 2023

With a new campaign, Special Olympics wants to take back the word “special” and other language that they say has been turned against people with disabilities.

The international sports organization for people with intellectual disabilities is rolling out the effort dubbed “Yeah, I am Special” with a pair of New York City billboards and a video voiced by ESPN commentator Stephen A. Smith.

This is all a precursor to a global digital campaign planned for next year, Special Olympics said, to address the stigma that’s associated with the word “special” and other similar language used around the world to demean people with disabilities.

The campaign developed with the advertising agency Tombras is aimed at launching a global conversation challenging the labels that society imposes on people with disabilities, Special Olympics said.

The effort will coincide with the 15th anniversary of the group’s “Spread the Word to End the Word” campaign, which asked people to pledge not to use the word “retard.”

Read the full article here

Meanwhile, in West Virginia...

As Officials Delay, More West Virginians with Disabilities Are Being Confined to Mental Hospitals  

For at least two years, disability rights advocates have warned that the state was indefinitely institutionalizing people in state-owned psychiatric hospitals. Despite outcry, lawmakers have been slow to act.


By Erin Beck, Mountain State Spotlight, December 10, 2023

Between 2015 and 2021, the number of people with [intellectual and developmental] disabilities admitted to William R. Sharpe, Jr. Hospital in Weston and Mildred Mitchell-Bateman Hospital in Huntington nearly tripled, to 167. It remained over 100 in both 2022 and 2023. 

These hospitals were designed for emergencies, with a goal of helping people return safely to their communities, according to the state’s involuntary commitment code. But records obtained under the Freedom of Information Act showed that the average length of stay for patients at Sharpe Hospital admitted since 2015 was 139 days; at Bateman, it was 156 days. As of November 1, sixteen people with intellectual and developmental disabilities had been confined for more than a year.

For at least the past two years, disability rights advocates have warned of IDD patient “warehousing;” and even before that, West Virginia officials acknowledged that the state was indefinitely confining people to state-owned psychiatric hospitals. Now, as lawmakers are on the cusp of the 2024 legislative session, they’ll have another opportunity to address some of the problems.

Read the full story here

U.S. Medical Schools Aren’t Teaching Future Doctors About 7.4 Million of their Patients

By Romila Santra, STAT, Dec. 11, 2023

Oliver McGowan was 18 years old when he was hospitalized in England with recurrent seizures and pneumonia. He was autistic, and he and his parents had one specific request for the medical team: no antipsychotic medications. When he had taken them in the past, they made his seizures worse and had devastating effects on his mood. Despite the family’s vehement protests, doctors gave him an antipsychotic. A few days later, Oliver suffered a lethal neurological side effect. A week later, he was taken off life support. An inquest into his death found that the drug had led to the rapid deterioration.

After his death in 2016, his mother, Paula, launched a campaign to mandate training on intellectual disability and autism for health care workers. In 2022, the U.K. National Health Service listened. Now, all health care workers in the NHS must complete both an online module and a live interactive session covering communication and accommodations needed for this population. The U.S. needs to follow suit, starting with medical schools.

Though there are 7.4 million Americans with intellectual and developmental disabilities, physicians are often uncomfortable treating them. In a recent survey of 714 Massachusetts physicians across various specialties, only 40% reported being very confident treating physically or intellectually disabled patients, and just 56% strongly agreed that they’d welcome disabled patients into their practice. Another study found that 77% of physicians reported only poor or fair ability to care for autistic individuals, in particular. It is no wonder that families struggle to find disability-friendly practices, and that people with intellectual and developmental disorders are four times more likely than neurotypical people to have unmet health care needs.

Read the full article here

Opinion: There is a Hidden Housing Crisis in Colorado for Adults with Disabilities

With 40% of group homes shuttered and more planned to close – it’s well past time to include high needs adults in future plans

By Julie Marshall, The Denver Post, December 13, 2023

Every week, I read yet another news story about energized efforts afoot to provide affordable housing for generalized low-income or no-income people so that they can have a place to call home and be part of their community.

These are important endeavors, but there is a hidden community sorely missing from consideration, and they face a crisis that deserves equal attention.

I’m talking about people like my daughter – adults who have intellectual and developmental disabilities (IDD), such as severe autism, that render them our most vulnerable citizens. My daughter is just one of around 130,000 people with IDD in Colorado. Many of them cannot speak and require 24-7 support to get dressed, make a sandwich or cross the street. Adults with IDD also deserve to exist within their communities with the necessary support to live full and joyful lives.

As adults, the battlefront is finding supported, long-term housing. At least 75% of adults with IDD live with aging family caregivers. It’s fantastic that a Family Caregiver program exists to pay a sibling once parents are too old or die. But siblings or nieces and nephews often don’t exist or have other life plans.

Our adult kids qualify for Section 8 vouchers handed out randomly in a lottery, but there is a years-long wait list just to get on the wait list along with thousands of others across the state.

What sounds like a good bet are group homes, but openings are now rare because there are fewer group homes, with less staff. Those with significant IDD, like nighttime seizures — as many of our kids have — are even less qualified given a lack of nighttime awake staff.

In Boulder County where I live, two of five existing group homes for highest needs individuals have shut their doors, and others will follow. Statewide, 40% of group homes have closed.

The reasons depend on whom you ask. It’s partly due to a lack of staff in a low-paid industry where daily workers earn an hourly wage of $20 and Medicaid reimbursements are shamefully low. It is also true that funding that used to support more group home options has been reallocated while maintaining the same regulations and unfunded mandates for group home services. This combination of forces has shuttered many group homes that organizations can no longer afford to operate. Group homes are disincentivized, too, as they fail to break even or make a profit and are considered too institutionalized in this civil-rights era of full integration for people with IDD.

What’s left is a Host Home, where strangers get paid to take in our kids. Don’t get me wrong, some providers are the best human beings in the world, but host homes last on average 1-2 years. Sexual, emotional, and physical abuse happens as well as neglect, as documented by an investigation by Rocky Mountain PBS in 2018.

This reminds me of a time not that long ago in our country when society deemed institutions for the mentally ill as inherently bad, and we liberated people with severe mental illness to sleep under bridges and die from neglect and severe cold.

Read the full article here

Connecticut - Family Caregiver Compensation Under DDS Medicaid Waiver Programs Approved by Committees  

By Hugh McQuaid, CT News Junkie, December 14, 2023

Lawmakers on the Appropriations and Human Services Committees voted unanimously Wednesday to authorize compensation for family caregivers of people with intellectual and developmental disabilities participating in state-administered Medicaid waiver programs. 

The panels approved the new waiver requirements during a joint meeting following a late-morning public hearing in the Legislative Office Building. 

The change affects three home and community-based waiver programs administered by the Department of Developmental Services and was part of legislation passed this year in an effort to reduce lengthy waiting lists encountered by people seeking services for autism and intellectual and developmental disabilities.

“This is to, not only help those families that have those with special needs at home to be compensated, but — correct me if I’m wrong — it’s going to loosen up some of the workforce to go and help others that need services,” Rep. Jay Case, a Winsted Republican and proponent of the bill, asked during the hearing.

Department of Developmental Services Commissioner Jordan Scheff said his agency believed it would help.

“It will enhance the number of people in the pool of available workers by including people who have been prohibited previously,” Scheff answered. “Providers will tell you that it won’t fix the workforce crisis but it will maybe stem the tide they’re facing.”  


VOR Bill Watch:

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


S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

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.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

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.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


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. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.


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.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their 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.

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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.

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If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

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What's Happening In Your Community?

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