January 5, 2024

VOR's Weekly News Update

Covid is Back

This will be a short newsletter. Covid is back, and my wife and I both have it, so I'll be quick with this and then get back to bed.

To our readers, please take whatever cautions are available to you and make sure to enforce high quality protocols to protect your loved ones with I/DD and autism.

Another Covid Wave Hits U.S. as JN.1 Becomes Dominant Variant

By Fenit Nirappil and Lena H. Sun, The Washington Post, January 4, 2024

The United States is in the throes of another covid-19 uptick, cementing a pattern of the virus surging around the holidays as doctors and public health officials brace for greater transmission after Americans returned to school and work this week.

Coronavirus samples detected in wastewater, the best metric for estimating community viral activity, suggests infections could be as rampant as they were last winter. A smattering of health facilities around the country, including every one in Los Angeles County, are requiring masks again. JN.1, the new dominant variant, appears to be especially adept at infecting those who have been vaccinated or previously infected.

While photos of positive coronavirus tests are once again proliferating across social media, fewer people are going to the hospital than a year ago. The Centers for Disease Control and Prevention reported 29,000 covid hospitalizations in the week before Christmas, the most recent data, compared with 39,000 the previous year. The agency has reported an average of 1,400 weekly deaths since Thanksgiving, less than half of the fatalities at the same point last year.

Even so, covid remains one of the leading causes of death as well as the top driver of respiratory virus hospitalizations — worsening the strain on hospitals also seeing influxes of flu and RSV cases.

“Of the three major viruses, it is still the virus putting people in the hospital most and taking their life,” CDC Director Mandy Cohen said in an interview Wednesday.

Even mild cases can lead to the lasting complications inflicted by long covid.

Continued

Medical institutions in California, Illinois, Massachusetts and New York, as well as Washington, D.C., have all brought back rules meaning face masks are mandatory for certain people, following the official end of the COVID-19 pandemic in America.

It comes as states in New England and the southeast are among those to have seen the greatest rises in hospitalizations with the virus in the latest recorded week. On Friday, the Centers for Disease Control and Prevention said that nationally the number of positive cases had risen by 12.7 percent in the week to December 23 compared with the week prior.

Continued

Mask Mandate Reinstated at Los Angeles County Healthcare Facilities  

By Vivian Chow, KTLA-TV, December 30, 2023

Amid a significant rise in respiratory illnesses, all Los Angeles County healthcare facilities have reinstated a mask mandate.

The order is in direct response to a rising number of COVID-19 infections leading to hospitalizations and deaths, officials said Saturday.

The county’s number of COVID hospital admissions officially entered the CDC’s “medium level” on Friday, Dec. 29.

Licensed healthcare facilities that are subject to the mask mandate include:

• General Acute Care Hospitals
• Skilled Nursing Facilities (including Subacute Facilities)
• Intermediate Care Facilities
• Emergency Medical Services (EMS) Provider Agencies
• Congregate Living Health Facilities
• Chemical Dependency Recovery Hospitals
• Acute Psychiatric Hospitals
• Dialysis Centers
• Home Health Agencies
• Primary Care Clinics
• Ambulatory Surgery Centers
• Hospice Facilities

Read the full article here

New Jersey Expands Emergency Services for Adults with Intellectual and Developmental Disabilities  

By Jeff Edelstein, The Trentonian, January 5, 2024

Commissioner Sarah Adelman of the New Jersey Human Services department has announced significant enhancements to the statewide emergency services programs aiding adults with intellectual and developmental disabilities (I/DD).

Contracts have been awarded to three organizations to manage emergency capacity services (ECS) programs across the state. These ECS programs specifically cater to individuals with I/DD, including those with acute behavioral needs requiring immediate residential and day program support. The funding secured will ensure round-the-clock availability for admissions, seven days a week, 365 days a year, with continuous 24-hour coverage.

“Our primary goal is to support individuals with I/DD who are in need of immediate services due to homelessness or other emergent circumstances,” Commissioner Adelman said in a press release. “As an example of the importance of these services, we’re requiring providers to accept admissions 24/7 and adhere to a strict ‘no reject’ policy, meaning that providers must accept every referral from the Department without exception. We’re continuing to focus on meeting the needs of all individuals and providing comprehensive and quality services, while helping individuals thrive in the communities in which they live.”

Referrals to the ECS programs are made by the Human Services’ Division of Developmental Disabilities. While the Division has previously managed ECS programs, these new contracts aim to bolster behavioral support and improve service delivery in various aspects.

The services offered are intended to be short-term, spanning no more than 60 days, prioritizing the health and safety of the individual while devising a plan for permanent supports.

Each ECS program will cater to four individuals. Bedrooms will be single-occupancy, ensuring compliance with Americans with Disability Act standards and accessibility requirements.

“Each program will have support from a board-certified behavior analyst to develop behavioral support strategies to address behaviors that require specialized attention,” Deputy Commissioner for Aging and Disability Services Kaylee McGuire said. “We are focused on finding ways to serve the needs of all individuals despite sometimes differing circumstances. As always, we want to help individuals live independently and successfully.”

In addition to primary services, ancillary support such as recreational activities and transportation to and from community services—including day services or transitional activities—will be included. If alternate day services are unavailable upon admission, daytime activities will be provided. Moreover, transportation to day services, routine and specialized medical care, mental health support, and other necessary services will also be offered.

All new programs are mandated to be licensed, open, and operational by June 30, 2024.

Read the full article here

Coalition Accuses Georgia of 'Abuse and Neglect,' Sues State for Better Access to Care 'We're Really Left with No Other Solution at This Point'

By Rebecca Lindstrom and Darrell Pryor, 11 Alive Atlanta, January 3, 2024

Kelli Lewis loves to share pictures and videos of her sons, Ahav and Analiel. Ages 14 and 13, the images tell the story of two boys who love to sing, dance, and draw. 

“That was probably a subconscious move to send you the good times,” said Lewis.

Lewis has plenty of other videos and pictures, moments when Ahav seems lost in another world that provokes violent outbursts or experiences hallucinations he can’t shake.

“These are highly creative, beautiful, loving, caring, funny, silly little boys that just happen to have a mental illness," she said.

Lewis' interview was done via a video Zoom call because after 20 years of living in Georgia, she has moved out of state to find treatment for her sons. They both have autism and severe mental health disorders. It’s a combination Georgia’s Medicaid system struggles to treat but Lewis doesn’t understand why.

“This hospital, this program that my son was sent to that has fully integrated care, he was placed there by DCH, by Georgia Department of Community Health,” she explained. “Which means Georgia is completely aware that there is a gap, and they know a place that fills the gap.”

That’s why the Georgia Advocacy Office, GAO, is working with the National Health Law Program, the Center for Public Representation, and attorneys with two other law firms. Together, the coalition filed a class action lawsuit in the U.S. Northern District Court against three state agencies, the Departments of Community Health, Behavioral Health and Developmental Disabilities, and Human Services, which facilitate the patchwork of programs.

Joe Sarra, an advocate who tries to help families navigate the system, said there are three large bureaucracies that impact whether these children receive care, but no one number to call. It's a system he describes as fragmented and ineffective.

“If you take children that are ages 6 and 7, which are critical developmental years, and you’re not providing them access to medically necessary services that they have a right to, you’re essentially stunting their growth,” said Sarra.

The lawsuit names four plaintiffs, but as a class action, is expected to represent more than 40,000 children on Medicaid who have a developmental or intellectual disability and/or significant mental health need. 

Of the named plaintiffs, one is a 15-year-old living in Fulton County, admitted to a psychiatric institution 16 times in one year.

Throughout his young life, he experienced suicidal ideation, hallucinations, self-harm, and emotional instability, leading to emergency room visits and stays in psychiatric hospitals. His mother said she gave the state temporary custody in the hopes of obtaining better services so he could return and remain safely at home. However, according to the lawsuit, he ended up living in a staffed hotel room and then institutionalized.

Ruby Moore, the executive director of the GAO, said the lawsuit is about protecting children from abuse and neglect.

“We think that probably the worst abuse that’s happening this day is children being ripped out of their homes, taken from their families and their siblings, and then relegated to endless cycles of going into emergency rooms, being sent to institutions unnecessarily and other segregated places,” Moore said.

Continued

Please note: In the lawsuit, there is no mention of Intermediate Care Facilities. The institutions in question are primarily psychiatric hospitals.

Ohio - DSP and Provider Resources for Historic Rate Increases

Ohio Department of Developmental Disabilities, December 22, 2023

“To recognize and value the work of DSPs is to recognize and value the people they support,” Director Hauck said in budget testimony.

The DeWine-Husted budget recognizes Ohio’s DD system's most pressing issue: having enough Direct Support Professionals (DSPs) to meet the needs of people with developmental disabilities. The budget addresses this issue by investing a historic $1.3 billion into provider rates so DSPs can get paid more.

Starting January 1, 2024, and again on July 1, 2024, DD providers will bill at significantly higher Medicaid reimbursement rates. The DeWine-Husted administration and the Ohio General Assembly expect these higher reimbursement rates to lead directly to increased wages for DSPs, and that over the next two years we will see an average DSP wage across the state of at least $18 per hour.

It is ultimately up to each employer (agency provider) to determine how they use the increased reimbursement rates. DODD pays a reimbursement rate to a Medicaid provider to deliver a Medicaid service, not a specific wage for specific types of employees. Actual wages of DSPs vary by employer and will depend on the reimbursement rate the provider receives, the variety of services billed for, and agency business decisions.

When the increased reimbursement rates from the budget are fully implemented, DODD expects that required provider data reporting will show the statewide average wage of DSPs will be at least $18 per hour.

DODD will annually require information from providers to submit wage and compensation data of DSPs. As required in Ohio law through the budget bill, DODD will annually share this information with the Ohio General Assembly.

DODD strongly encourages providers to be transparent and communicate with DSPs about how increases are being used. DSPs should talk to their employers to understand what the increased reimbursement rates mean for them.!

Read the press release here

Massachusetts - Globe update report has devastating findings about DDS provider-run group home system. Is the administration listening?

By David Kassel, The COFAR Blog, January 2, 2024

In the second of two reports on the corporate, provider-based group home system in Massachusetts, The Boston Globe last week characterized the system as “hobbled by poor staffing and struggling with allegations of abuse and neglect.”

Last week’s article was a follow-up to a report in September by the Globe’s Spotlight Team, which had focused on widespread abuse and neglect in provider-run residential schools for children and teens with autism.

We think the Globe’s reporting raises some important questions, one of which is whether the Healey administration and the Legislature are listening.

The Globe’s reporting echoes assertions about abuse and neglect in the system that we have been making for years. Moreover, we think the Globe is on the right track in noting a key factor plaguing the system, which we have long emphasized, of underpaid and undertrained staff.

Last week’s Globe article stated that most of the parents of autistic children whom the paper had interviewed asserted that, “Massachusetts has never solved long-term systemic problems of low pay and inadequate training” in the system.

The paper noted that although “the state has directed millions of dollars to group home providers to help them recruit and keep staff, pay remains similar to that of some retail and fast food workers; $17 to $20 an hour is typical.”

The Globe further stated that “a number of parents who spoke with (the newspaper) requested anonymity because they were afraid that (as we have long reported) state officials or providers would retaliate against them or their child if they spoke out.”

We hope the Globe will investigate the causes of that culture of retaliation and intimidation of families who complain about inadequate care and even abuse and neglect of their loved ones; and that it will investigate the causes of the underpayment of staff.

Understanding the causes of the underpayment of staff might help explain where the millions of taxpayer dollars went, given the money, as the Globe implied, doesn’t appear to have been used to raise staff wages to any significant degree. It might also explain why direct-care workers in the provider system have historically been underpaid and undertrained.

We think an investigation of the causes will reveal that the corporate provider system has always been been about making as much money as possible for its executives while paying its direct care workers as little as possible. That appears to explain why the privatization of human services has never met the promise of both delivering high-quality care and saving money. It may also explain why continual efforts to raise the pay of direct care workers don’t seem to lead to that result (see Massachusetts Inspector General’s 2021 Annual Report, page 27).

Last week’s Globe article referred to concerns raised by the Arc of Massachusetts and the Massachusetts Association of Developmental Disabilities Providers (ADDP) — both of which actually lobby for the providers — about the shortage of staff and a lack of available group homes.

But while organizations like the Arc and the ADDP publicly decry the poor care and abuse of clients and the underpayment and shortage of staff, they both oppose a key potential solution to the problem, which would be to open the doors of the Wrentham and Hogan Developmental Centers and provide state-operated group homes as options to individuals seeking residential placements.

The state-run Wrentham and Hogan Centers and state-operated group homes have better trained and better paid staff than the provider-run homes. Yet the state-run facilities are losing population even as the number of people waiting for placements is growing. That is because the administration is not offering state-run facilities as options to people seeking placements, and is even denying requests made by families to place their loved ones in them.

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

VOR SUPPORTS:

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.

VOR OPPOSES:

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.

VOR HAS SIGNIFICANT CONCERNS WITH:

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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