November 3, 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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Our Fall Fundraising Campaign

It is November.

This is a critical time for all of our fundraising efforts.

More that 2/3 of our donations come at during November and December, and we need your support.

Please help us, so that we may continue to help you.

Please Click Here to Join, Renew or Donate

Thank you for your support!

Time is Running Out to Speak Out on Amending Section 504 of the Rehabilitation Act of 1973

Please Comment on Proposed Update to HHS’ Section 504 Rule

This may seem like asking the Foxes guarding the Henhouse to be nice to the chickens inside, but it is important that we make our voices heard and speak our about the discrimination against people with severe and profound intellectual and developmental disabilities, and their families, by the very agencies that are expected to provide us with the essential care resources that we choose for our loved ones.

Current policies have been driven by trying to meet the aspirations of those on the ID/A spectrum with high acuities, at the expense of eroding services essential to those with high needs.

It is time we speak up. It is time we speak out.

The very creation of the Administration for Community Living by HHS Secretary Kathleen Sibelius in 2012 was an act of discrimination against those with higher needs. The very diverse and distinct needs of people previously overseen by the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities were compromised when these separate groups were thoughtlessly lumped together by HHS under the ideology of "Community Living" and the dangerous fallacy that "everybody does better in the community". Those who do not benefit from community living were marginalized. In the years that followed many of our loved ones suffered, even died, from receiving lower levels of care when the ICF system was eroded and people were forced out of their homes.

The DOJ continues to take actions against ICFs in states across the country, despite the tragic consequences of their misguided actions in Georgia, Virginia, Nebraska, and now Iowa. Protection and Advocacy Agencies (P&As), using federal funds provided by the ACL, have initiated class action lawsuits in states like Illinois and Ohio, aimed at closing ICFs. State DD Councils and State P&As all funded annually by the ACL, rarely investigate abuse and neglect in group homes. And they exclude our families from sitting on their boards.

Congress enacts bills that provide additional funding for HCBS services only, or that would increase salary levels for DSPs in HCBS settings only. This discrimination runs through every branch of our state and federal government.

Please Speak Up!

Comments Close on November 13th!

(Includes the link to submit your comments)

Additional information and links:

  • ACL Blog Post: from Alison Barkoff
  • Fact Sheet: from the HHS Office for Civil Rights (available in multiple languages). 
  • Press Release: HHS Issues New Proposed Rule to Strengthen Prohibitions Against Discrimination on the Basis of a Disability in Health Care and Human Services Programs. 
  • Press Conference: HHS and disability community leaders discuss the proposed rule.
  • View Posted Comments: Statements from community leaders and organizations,

An opportunity to speak out in favor of 14(c) programs from the U. S Department of Labor:

DOL - Final Section 14(c) Stakeholder Engagement Session - Registation is Still Open


Stakeholder Engagement Session #3:

November 15, 2023, from 5:30 to 7:00 PM ET.

Members of the public wishing to participate must register in advance of the meeting by November 1. Click here to register

For more information about these sessions, please click here

The two previous sessions quickly reached their limits.

Please register now, while there is still time!

VOR's Fall Legislative Initiative

VOR's Fall Legislative Campaign has exceeded our expectations. For most of October, we have been meeting several times each day with Congressional Staffers,

discussing the needs of our families and of people with severe or profound I/DD and autism.

VOR has always supported the rights of people with ID/A and their families to have the right to make their own informed choices as to the care and socialization they want. We also support maintaining and investing in a full range of residential services and employment opportunities for our loved ones.

Through that lens, we have focused on a few bills that affect our families. The issues we are covering concern the critical shortage of Direct Support Professionals and the attempts to eliminate sheltered workshops and 14(c) employment opportunities.

At this point, we have paused the campaign, in order to focus on fundraising. We will continue to reach out, but we are planning on taking a longer period to reach out, so that we don't overextend our resources and personnel.

For more information on our Fall Legislative Campaign,

please see our website at

This Week's News:

Justice Department Warns Sheltered Workshops May Violate ADA

By Michelle Diament, Disability Scoop, November 2, 2023

Segregating people with disabilities in employment and other day programs may violate their rights under the Americans with Disabilities Act, the Biden administration says.

In a 13-page document released this week, the U.S. Department of Justice is outlining how the ADA’s so-called “integration mandate” applies to many daytime activities for people with disabilities.

Much as the law requires that housing and other supports be provided in community-based settings when appropriate, the agency is clarifying that this same expectation applies to other services.

“A public entity may violate the ADA’s integration mandate when it plans, administers, operates, funds or implements any services — including employment or day services — in a way that unjustifiably segregates individuals with disabilities,” the guidance states.

The Justice Department notes that many people with disabilities spend the majority of their time receiving services in segregated settings like sheltered workshops and facility-based day programs. People currently served in such settings and those at risk of ending up in segregated services should be provided accurate information about integrated options, according to the guidance.

“Simply put, people with disabilities are entitled to work alongside their friends, peers and neighbors without disabilities,” said Kristen Clarke, assistant attorney general for civil rights at the Justice Department. “Employment is fundamental to contributing to and being fully included in society. This guidance makes clear that the ADA requires that people with disabilities have access to the integrated services they need to contribute, grow and advance in typical workplaces throughout the country.”

Still, the guidance also says that people with disabilities do not have to participate in integrated employment or day services.

“Individuals with disabilities may decline to accept a service in the most integrated setting appropriate for them,” the document indicates. “State and local governments are not required to provide community-based services to individuals who oppose receiving those services. On the other hand, state and local governments have no obligation under the ADA to provide services in segregated settings.”


Click here to read the Statement from DOJ

Click here to read the DOJ statement justifying their actions by interpreting Olmstead as an Integration Mandate

Minnesota - Hubbard County Developmental Achievement Center Garners Attention from PBS, Author

By Shannon Geisen, Park Rapids Enterprise, October 31, 2023

The Hubbard County Developmental Achievement Center (DAC) celebrated its 50th anniversary in September. Laura Kovacovich poses with her friends and fellow DAC workers. - Contributed by Dawn Kovacovich

As the Hubbard County Developmental Achievement Center (DAC) celebrates its 50th anniversary this year, it’s become the subject of a PBS NewsHour episode and a nonfiction book. Issues facing the DAC and its clients with severe intellectual and developmental disabilities (I/DD) have both state and national implications.

As some disability advocates and policymakers are pushing for the integration of all people with disabilities into a competitive workforce, there are families and participants fighting to preserve their center-based employment.

Efforts to eliminate 14c

During the July 2021 special session, language was slipped into the Minnesota Health and Human Services omnibus bill creating a task force to eliminate subminimum wage law.

The legislation directed the group to “develop a plan and make recommendations to phase out payment of subminimum wages to people with disabilities on or before Aug. 1, 2025.”

Many disability service providers, like the DAC, hold special certificates from the U.S. Department of Labor that exempt them from the federal minimum wage and allow them to pay workers with disabilities based on productivity, instead of a fixed hourly rate.

Specifically known as Section 14c of the Fair Labor Standards Act, it is a highly regulated, licensed program, explains Dawn Kovacovich.

She is a retired special education teacher and a member of the DAC board of directors.

Her 31-year-old daughter, Laura, has multiple severe I/DD.

In 2022, Dawn co-founded A-Team Minnesota in response to the new Minnesota task force. The A-Team Minnesota is part of a nationwide, nonprofit, grassroots network that advocates for people with disabilities.

The case for Accommodated Employment

“Chasing the Intact Mind: How the Severely Autistic and Intellectually DIsabled Were Left out of the Debates that Affect Them Most” was published on Oct. 3. Written by Dr. Amy F.S. Lutz, one of the chapters highlights the success of the DAC. Lutz is vice president of the National Council on Severe Autism. The book is the product of her doctorate thesis.

In January 2021, Lutz interviewed DAC Executive Director Laura Johnson and the Kovacoviches.

Dawn calls it “one of the first publications ever that clearly articulates the need for accommodated employment choices and the rationale behind the 14c commensurate wage law.”

According to Lutz, “Minnesota has the largest number of 14c certificates in the country; 6,000 adults earn a subminimum wage at programs operated by nonprofit agencies across the state.”

The DAC serves about 70 clients with a range of cognitive impairments and psychiatric disorders.

DAC participants can work at the DAC workshop where items that are made are sold in the stores. They can choose to work at Bearly Used Thrift Store or The Salvage Depot or in community jobs.

Alternatively, they can pursue other activities, like theater, crafts, exercise and more.

Lutz writes, “Like all the facilities I visited, the DAC offers multiple program options; fewer than half of their participants hold subminimum wage jobs. And some clients make minimum wage or even higher, depending on the work they’re doing at any particular moment.”

“These programs are valued. They’re desperately wanted by the people they serve and it’s the people who aren’t even affected by it that want it shut down,” Dawn said.

Her daughter, for instance, has worked at the DAC since 2012. Her main job at the thrift store is to price and shelf items.

Laura can get self-injurious, aggressive or even destructive when she’s anxious or upset, Dawn said. DAC staff know exactly what to do when there are meltdowns, she adds, and that cannot be replicated at businesses. She argues it’s a liability for employers and puts people like Laura in a vulnerable situation.


Iowa - Concerns Growing Over State's Lack Of Plan For GRC Cemetery

By Joe Foreman, The Opinion-Tribune, October 31, 2023

Situated on a secluded slope on the south side of the Glenwood Resource Center campus is an unrenowned cemetery that’s become a growing source of concern for Glenwood residents and city officials as the closure of the state-managed facility draws near.

The GRC is scheduled to close in eight months, but the State Of Iowa has yet to reveal its plan for the cemetery that has more than 1,000 graves.

“My biggest concern is the cemetery. They (state) just want to walk away,” Glenwood City Administrator Amber Farnan said last week while discussing the pending GRC closure at the Glenwood City Council meeting.

In a subsequent interview after the meeting, Farnan said state officials have made it clear they have no intention of maintaining the cemetery after they vacate the GRC campus.

More than 1,000 people are buried in the GRC Cemetery

“We had a discussion with them not too long ago and

asked them, ‘What’s the plan for the cemetery? Will the state continue to maintain their cemetery?’ They said, ‘No. Whoever takes over the cemetery will have to maintain it.’”

It is unclear at this point who will ultimately take over the GRC property (including the cemetery) after the state leaves the campus. It could be the city, a local LLC/task force or a private developer. Whoever it is, there will certainly be costs associated with maintaining the cemetery that’s been on the campus for 140 years.

“We want to be respectful of the cemetery that’s there, but the city, at this point, nor the county, really have the resources available to maintain the cemetery, much less the rest of the campus,” Farnan said. “I have made sure in our conversations with the state that that is discussed. They’re going to have to help somehow.”

The Opinion-Tribune has reached out to the GRC and Iowa Department Of Human Services multiple times since early July to discuss the cemetery, but employees at both agencies have been unwilling to answer questions about the issue, even after questions were submitted in writing at the request of a IDHS public information officer.

 The grave stone for Willie O'Neal, the first burial at the GRC Cemetery in 1883

One official who has been willing to answer questions on the matter is District 16 State Rep. David Sieck, who resides in Glenwood and has the GRC in his legislative district. Sieck feels the state should maintain some responsibility for upkeep of the cemetery, financial or otherwise, after the GRC closes.

“It’s a state facility, I don’t see how they can abandon it. Somebody is going to have to take care of it,” Sieck said. “The state is either going to have to compensate the city or something because it doesn’t make any sense that they could just abandon it.

“Just because they want to get rid of the facility doesn’t necessarily mean that you get rid of the cemetery.”


In Less Than A Decade, Autism Prevalence Among Adults More Than Doubled

By Michelle Diament, Disability Scoop, October 30, 2023

New research suggests that the number of American adults diagnosed with autism is rising precipitously.

Between 2011 and 2019, autism prevalence more than doubled among those over age 18 enrolled in Medicaid.

The findings come from a study published this month in the journal JAMA Psychiatry. Researchers at Boston University combed Medicaid data between Jan. 1, 2011 and Dec. 31, 2019 to identify any claims for autism. They found over 403,000 adult Medicaid beneficiaries with a diagnosis.

Incidence of autism grew from 4.2 per 1,000 enrollees in 2011 to 9.5 per 1,000 enrollees in 2019, the study found. The largest increase across the nine years studied was seen in adults ages 25 to 34 who had a 195% jump in prevalence. By contrast, the rise among those ages 55 to 64 was just 45%.

Autism was at least two times as common among white Medicaid beneficiaries as compared to those from other racial groups, the researchers found. About three-quarters of those on the spectrum were male and the study found that the percentage of Medicaid enrollees with autism and intellectual disability declined over the course of the period studied from 62% to 46%.

“The study findings suggest that despite difficulties in identifying autism in adults, there is a considerable and growing population of autistic adults enrolled in Medicaid,” the authors concluded.

The rise in diagnosis among adults follows a steep increase in autism prevalence in children in recent decades. As of 2000, the Centers for Disease Control and Prevention estimated that 1 in 150 American children had autism. The latest estimate, based on data from 2020, indicates that the rate is 1 in 36.


‘Worse Than People Can Imagine’: Medicaid ‘Unwinding’ Breeds Chaos in States

By Phil Galewitz, Katheryn Houghton, Brett Kelman, and Samantha Liss KFF Health News, November 2, 2023  

More than two dozen people lined up outside a state public assistance office in Montana before it opened to ensure they didn’t get cut off from Medicaid.

Callers in Missouri and Florida reported waiting on hold for more than two hours on hotlines to renew their Medicaid coverage.

The parents of a disabled man in Tennessee who had been on Medicaid for three decades fought with the state this summer to keep him enrolled as he lay dying from pneumonia in a hospital.

Seven months into what was predicted to be the biggest upheaval in the 58-year history of the government health insurance program for people with low incomes and disabilities, states have reviewed the eligibility of more than 28 million people and terminated coverage for over 10 million of them. Millions more are expected to lose Medicaid in the coming months.

The unprecedented enrollment drop comes after federal protections ended this spring that had prohibited states from removing people from Medicaid during the three pandemic years. Since March 2020, enrollment in Medicaid and the related Children’s Health Insurance Program had surged by more than 22 million to reach 94 million people.

The process of reviewing all recipients’ eligibility has been anything but smooth for many Medicaid enrollees. Some are losing coverage without understanding why. Some are struggling to prove they’re still eligible. Recipients and patient advocates say Medicaid officials sent mandatory renewal forms to outdated addresses, miscalculated income levels, and offered clumsy translations of the documents. Attempting to process the cases of tens of millions of people at the same time also has exacerbated long-standing weaknesses in the bureaucratic system. Some suspect particular states have used the confusing system to discourage enrollment.

“It’s not just bad, but worse than people can imagine,” said Camille Richoux, health policy director for the nonprofit Arkansas Advocates for Children and Families. “This unwinding has not been about determining who is eligible by all possible means, but how we can kick people off by all possible means.”


Food for thought...

Inside The Competitive But Fragmented World of IDD Dealmaking

By Morgan Gonzales, Behavioral Health Business, November 1, 2023

The intellectual and developmental disability (IDD) field may be one of the most complex and fragmented segments of the behavioral health industry.

That has not prevented IDD providers, however, from driving an impressive number of deals. That includes both for-profit and nonprofit organizations.

“Having run and operated within all verticals of behavioral health, IDD is the most complex from an investor standpoint, but also in many ways from an operator standpoint,” Stacy DiStefano, CEO of Consulting for Human Services, told Behavioral Health Business during a panel talk at INVEST 2023. “It’s the most fragmented of all the providers.”

Even determining the number of IDD providers in the country is a challenge. DiStefano estimates that there are tens of thousands of various organizations, but says there’s no way to determine an exact number.

“About 20% of them in the space are associated with a state or a national association,” she said. “The others you’d have to go county by county, state by state, and look up EIN numbers to just figure out who they are.”

IDD providers have historically been faith-based organizations or nonprofits, but are becoming increasingly competitive as businesses and are beginning to consolidate, mirroring trends across health care.

As they’ve sought to scale and become more sophisticated, some have turned to capital partners for support.

“IDD, in our minds, is one [part of behavioral health that is] on a county by county or local geography by local geography basis,” Matthew Pettit, founding partner of Seven Hills Capital, said at INVEST. “You really have to be willing to roll up your sleeves. And whether it’s mitigating the DSP (direct support professionals) crisis or mitigating local rate pressures, I think from the investor perspective, you have to be willing to go a level deeper recently vis-à-vis other parts of behavioral health.”

Nashville, Tennessee-based Seven Hills Capital is a private equity firm that focuses exclusively on health care. Its IDD portfolio companies include VersiCare, which it formed in 2018 in partnership with ExpertCare’s senior management team.

Reimbursement is one area of IDD care that varies widely from state to state. While rates are slightly increasing in some states, they remain “abysmal,” according to DiStefano. She recommends providers branch out to multiple states to ensure diversification of revenue.

The IDD industry once pivoted to involve mostly residential treatment as part of the movement away from institutionalization, according to Michelle Mainez, chief operating officer at Redwood Family Care Network. It’s now experiencing another dramatic shift.

“Now, we are at another historic kind of pivot in our industry with CMS, with the home- and community-based final rule,” Mainez said. “The final rule setting really takes the philosophy and the ideology of IDD being completely in inclusive environments and now says that is the standard. We’re also going back to those very same models and revisiting our facilities and residential settings to identify where we have those institutional practices still embedded in those small residential models.”

IDD services are almost exclusively reimbursed by waiver funding through CMS. Waivers are good for a patient’s lifetime, but many states have waitlists to acquire them.

Even if a state has no waitlist for waivers, patients may still struggle to get care because of a phenomenon called a “shadow waitlist.”

“In a state where they give you a waiver, you may go to the service provider and say, ‘I’m eligible for these three things,’ and the service provider would say, ‘Great, I only have staff to give you two of them,’” DiStefano said. “So while you’re not technically on the waitlist, you’re on a waitlist of another kind. That’s what we call a shadow waitlist from a waitlist. I think that’s an important fact for investors as well.”

Waitlists and shadow waitlists are two reasons that the total addressable market (TAM) for IDD care is different from the number of people diagnosed with IDD.

“I think that is a common investor mistake,” Pettit said. “[Investors may think] ‘Wow, that TAM is there, we just have to get it.’”

TAM is further limited by other factors unique to the “nuanced” world of IDD. For example, a residential facility must fill vacancies only after matching residents on behaviors, acuity and other factors, rather than filling the spots immediately. 

Read the full article here

'This has been going on across NYS': Two Group Homes for People Living with Disabilities in WNY Set to Close

By Lia Lando, WKBW ABC-7 News, November 1, 2023

Two group homes for people with living disabilities in Western New York are getting ready to close.

People Inc. said it operates 143 group homes but said it has to close two of them because of staffing shortages. The locations that are closing are in Angola and Boston. The agency said it is working closely with families to help residents relocate.

This is an ongoing issue across New York State and we spoke with a family member who has a loved one in a home and the CEO of the Arc of Erie County about the challenges.

"She has moderate intellectual disability, seizure disorder, and within the last 15 years was diagnosed with lupus and arthritis," explained Michael Horowitz whose sister has been getting help from the Arc of Erie County for decades through their residential and day programs.

Horowitz said the staff is like family to him and, "It's really great knowing that with the support she has I can still have a relationship with her. I can still do things but knowing that she has the support and supervision."

Douglas Digesere has been with the Arc of Erie County for nearly 40 years. He's now the CEO but started out managing group homes and said, "every residential home requires a certain amount of direct support professionals. You have to have that. There's regulations about staffing ratios."

While direct support professionals are in high demand, places like Arc and People Inc. are having trouble attracting and retaining these providers.

"This has been going on across New York State for the last 18 months both at the State-operated homes and the volunteer agency-operated homes," Digesere explained.

Digesere said positions used to pay up to $5 above minimum wage but now they're trying to compete with the higher minimum wage.

"Once it started to go you recall it went up to that $15...then our positions weren't as attractive any longer and they're not asking for anything more than anyone else would ask for then being properly compensated." 


DDS Psychologist Shortage may be causing Delays in Approving Services

By Dave Kassel, The COFAR Blog, November 2, 2023

In addition to a shortage of direct care staff, the Department of Developmental Services (DDS) appears to be dealing with a shortage of psychologists who are needed to help determine eligibility for services for potentially hundreds of people each year.

Records obtained by COFAR from DDS under a Public Records Law request show that the Office for Civil Rights (OCR) with the U.S. Department of Health and Human Services investigated at least one complaint that an inordinately long delay by DDS during the past two years in processing an application for services amounted to discrimination against the applicant.

It took more than a year for DDS to determine that the applicant was, in fact, not eligible for DDS services. Under the Department’s regulations, eligibility determinations should take no longer than 60 days. The regulations state that the determination process can take an additional 60 days (or a total of 120 days) if the application is incomplete, which was apparently the case in this matter.

DDS cited “limited clinical resources”

The OCR ultimately determined that DDS had not discriminated against the applicant. However, the federal agency noted that DDS had acknowledged that the delay in processing the application was due to “limited clinical resources.”

According to the OCR report, DDS also stated that, “the departure of a full-time RET (Regional Eligibility Team) psychologist in June 2021 affected the turnaround for reviewing applications.”

COFAR is seeking additional records from DDS in order to determine the scope of the possible backlog in eligibility determinations. We initially requested the records in September after receiving a call from a parent who said she had been told the eligibility determination process in her region could take up to a year to carry out.

Under DDS regulations, the Regional Eligibility Teams consist at least one licensed doctoral level psychologist, an individual with a master’s degree in social work, and a Department eligibility specialist.

Job posting records show few hires

Our records request in September was for records concerning any backlogs or delays in processing eligibility applications, and concerning shortages of psychologists or other members of Regional Eligibility Teams.

Records provided in response so far by DDS show that the Department posted openings for psychologists on 15 occasions between July 2022 and September 2023. During that time, only two psychologists were hired, the records indicate. DDS has so far not responded to questions we submitted last week about the job posting records.


As 2024 Nears, Advocates Push For Caregiving As Campaign Issue

By Jessie Hellmann, CQ-Roll Call via Disability Scoop, October 31, 2023

Family caregivers are seeking to make their plight a 2024 campaign issue after the COVID-19 pandemic exposed the lack of support for the more than 53 million people who provide unpaid care to parents, spouses, friends and children with disabilities.

Exhausted from shortages of workers who help care for people who need it and the rising costs of caregiving, advocates argue caregivers could become a powerful voting bloc in next year’s elections.

“The pandemic laid bare the fact that this country doesn’t have a caregiver infrastructure,” said Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations.

This is an issue that the government can step in on because they have,” she said, referring to temporary funding Congress passed for child care and services that help older people and people with disabilities stay in their homes.

During the pandemic, Medicaid programs in many states also allowed payments to caregivers and Congress required certain employers to provide paid leave related to COVID-19.

While groups like Caring Across Generations and AARP have long pushed for politicians to support unpaid family caregivers, they are hoping the pandemic has brought more attention to the issue and demonstrated the need for a permanent solution from the federal government.

AARP, one of the most powerful advocacy groups in the United States, plans to frame the issue as an economic one that impacts millions of people providing unpaid care to parents, spouses and friends.

“It’s going to be one of the two issues AARP is going to ask everybody running for public office: ‘What’s your position on Social Security? And what’s your position on family caregiving?'” said Nancy LeaMond, AARP’s executive vice president and chief advocacy engagement officer. She called the caregiving issue “a gateway to a broader debate on long-term care.”

People typically become caregivers because of the lack of a long-term care structure in the United States. Medicare doesn’t pay for long-term care, and while people with Medicaid can qualify for some support, like stays in nursing homes and home- and community-based services, that doesn’t help millions of people who technically make too much money to qualify for the program.

That has left family members to step in, often at a moment’s notice after a fall or injury, with no real training or support from the government and health systems.

“Those costs are major costs. And that’s a lot of what we’re going to be doing in 2024 is showing the true costs of care,” Jorwic said. “There is a real cost of not addressing this problem to families everywhere.”


Infectious Disease Groups Urge CMS to Retire Sepsis Treatment Guidelines

Use of the measure hasn't lowered mortality rates, they say

By Joyce Frieden, Washington Editor, MedPage Today November 2, 2023  


The Centers for Medicare & Medicaid Services' (CMS) current guidelines for treating sepsis should be retired and replaced with more performance-based measures, according to a coalition of medical groups.

The measure, known as the Severe Sepsis and Septic Shock: Management Bundleopens in a new tab or window, or SEP-1, was first implemented by CMS in October 2015. In addition to being several dozen pages long, the measure has another unusual feature -- rather than being stewarded by the American Medical Association, CMS, or an infectious diseases association, its steward is Henry Ford Hospital in Detroit.

"The SEP-1 measure requires clinicians to provide a bundle of care to all patients with possible sepsis within 3 hours of recognition," the groups -- which include the Infectious Diseases Society of America (IDSA), the American College of Emergency Physicians, and the Society of Hospital Medicine -- said in a statement.

"The bundle includes drawing blood cultures, administering broad-spectrum antibiotics, and other measures. However, the SEP-1 measure does not take into account that many serious conditions present in a similar fashion to sepsis."

"Pushing clinicians to treat all these patients as if they have sepsis leads to overuse of broad-spectrum antibiotics, which can be harmful to patients who are not infected, those who are infected with viruses rather than bacteria, and those who could safely be treated with narrower-spectrum antibiotics," the statement continued. "Moreover, a series of studies published since the SEP-1 measure went into effect show that in practice SEP-1 has not lowered mortality rates."

"I don't think any of us who work in sepsis will deny it's a big problem, that hospitals should focus on it, and that there's room for improvement," Chanu Rhee, MD, MPH, an infectious disease physician at Brigham and Women's Hospital in Boston and lead author of the recommendations, said in a phone call. "But is SEP-1 the best way to do it, and are we causing unintended consequences by trying to treat everyone with possible sepsis immediately?"

"We think it's time to move beyond SEP-1 and move to metrics that focus on patient outcomes, so that will encourage hospitals to pay more attention to the full breadth of sepsis care," said Rhee, who is also an associate professor of population medicine at Harvard Medical School. "There are many things hospitals could do to improve [sepsis care] such as implementing processes to have timely source control, optimizing antibiotic dosing, de-escalation of antibiotics, minimizing sedation for patients who are mechanically ventilated, and preventing hospital-acquired infections. There are a lot of things that go into affecting outcomes for these patients that are getting neglected."


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VOR Bill Watch:

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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.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.

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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