August 4, 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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



They're Back!

Congress is on its annual August vacation.

For many of our elected officials, this is a time to be back home, meeting with constituents, shaking hands and learning about local issues that aren't always apparent from their offices on Capitol Hill.

This is our chance, your chance, to introduce them to our concerns. This is an opportunity to introduce them to your loved one with I/DD or autism, and to give them a tour of their ICF residence, or show them what your loved one's sheltered workshop offers to the many people who work there.

Make an appointment with their state office today. These opportunities don't come often, and it's not everyday that you can actually change the perspective of someone in such a position of power.

Protect Your Loved Ones from Medicaid Disenrollment

States have been removing people from their Medicaid roles in large numbers as the end of emergency provisions put in place during the height of the pandemic are set to expire. The Great Unwinding is continuing, and anyone who receives services through Medicaid may be at risk of losing their benefits for failing to file new paperwork with their state agency.

VOR encourages its members to contact their state agencies to make sure that the proper forms have been filed, so not to lose coverage.

National News:

The Nation Hit a Record Uninsured Rate of 7.7% in 2023 — Then Medicaid Redeterminations Started

By Rylee Wilson, Becker's, August 3, 2023

The uninsured rate hit a record low of 7.7 percent in the first quarter of 2023, according to data published Aug. 3 by the CDC.

The record rates do not reflect the millions of people removed from Medicaid during the redeterminations process, which began in April. 

Insured rates climbed during the pandemic because states were prevented from removing beneficiaries from Medicaid rolls, multiple states expanded Medicaid, and the American Rescue Plan's enhanced ACA marketplace subsidies were implemented. 

In the first quarter of 2023, 202.4 million Americans had private health insurance coverage, 130.4 million individuals had public insurance coverage and 25.3 million were uninsured, according to CDC estimates. 

As of Aug. 1, at least 3.8 million people have lost Medicaid coverage during the redeterminations process, according to KFF. 


There is a wide variation in Medicaid disenrollment rates across reporting states, ranging from 82 percent in Texas to 10 percent in Michigan, according to a July 24 KFF report. 

To date, 37 percent of people with a completed renewal were disenrolled in reporting states, according to the report.  

Click here to view the rates of disenrollment in states that have reported to date

Feds Extend Lifeline To Disability Service Providers

By Michelle Diament, Disability Scoop, August 4, 2023

Federal Medicaid officials say they will extend some flexibilities for home and community-based services that emerged during the pandemic in a bid to help the beleaguered disability services sector stay afloat.

In guidance issued this week, the Centers for Medicare and Medicaid Services said that states can continue relying on changes that were adopted during the COVID-19 pandemic while they work to officially incorporate them into their waiver programs.

“States have relied extensively throughout the (public health emergency) on flexibilities permitted under Appendix K to authorize actions in their home and community-based services programs such as the use of telehealth or remote service provision, increased payment rates, expansion of self-direction service delivery models, addition or expansion of services, and expansion of provider networks to include family members and legally responsible individuals,” reads the letter to state Medicaid directors from Daniel Tsai, deputy administrator and director of the Center for Medicaid and CHIP Services at CMS.

Previously, states were told that flexibilities provided under what’s known as Appendix K would expire by Nov. 11, six months after the end of the public health emergency. Now, however, CMS says that states can act to extend that deadline.

“CMS is issuing this guidance in recognition of the number of section 1915(c) waiver actions already submitted and expected to be submitted by states to incorporate Appendix K flexibilities into the ongoing operations of their HCBS programs,” the letter indicates. “The ability for these waiver actions to be submitted, reviewed and approved by November 11, 2023, to prevent a lapse in authority, is highly uncertain. In the name of minimizing disruption to beneficiaries, providers and states, CMS is issuing this extension of the Appendix K expiration date.”

States have used regulatory flexibilities offered during the pandemic to allow family members to be paid as caregivers, to introduce remote supports and to alter services and reimbursement to address staffing issues, among other things, advocates said.


Read more from Home Health Care News here

Bipartisan House Lawmakers Introduce Preserving Access to Home Health Act to Protect Patients from Harmful Home Health Program Cuts

From PR Newswire, August 2, 2023

The Partnership for Quality Home Healthcare (PQHH) and the National Association for Home Care & Hospice (NAHC) today commended Representatives Terri Sewell (AL-7) and Adrian Smith (NE-3) for introducing the Preserving Access to Home Health Act of 2023 in the U.S. House of Representatives. If enacted, the bill would safeguard access to essential, home-based, clinically advanced healthcare services by preventing the Centers for Medicare & Medicaid Services (CMS) from implementing cuts as high as $20 billion over the next decade.

"The Medicare home health community strongly supports this legislation and thanks Representatives Sewell and Smith for their leadership on a Medicare issue that truly threatens access to care for the more than 3 million beneficiaries who rely on this care," said William A. Dombi, President of the National Association for Home Care & Hospice. "The home health community calls on Congress to ensure the stability that patients and providers urgently need. Since Medicare has again proposed deep cuts to home health in 2024, Congress must act to protect the care their constituents prefer and want."

Specifically, the bill is designed to address cuts made to home health by CMS during the implementation of Medicare's Patient Driven Groupings Model (PDGM) by making the following policy changes:


Note: This may be the companion bill to S.2137 - Preserving Access to Home Health Act of 2023, introduced by Sen. Debbie Stabenow.

State News:

NCDHHS Partners With the North Carolina Council on Developmental Disabilities to Host Statewide Town Hall

August 10, 6 pm

The North Carolina Department of Health and Human Services will join the North Carolina Council on Developmental Disabilities for a statewide virtual and in-person town hall on Aug. 10 at 6 p.m. Following opening remarks, NCDHHS Secretary Kody H. Kinsley and NCDHHS Director of the Division of Mental Health, Developmental Disabilities and Substance Use Services Kelly Crosbie will respond to questions from both in-person guests and virtual participants on Zoom. The department will also provide updates on a number of initiatives:

  • Medicaid Expansion
  • 1915(i) ServicesCaregiving Workforce for Behavioral Health, I/DD, and TBI
  • Eliminating 14(c) to promote Competitive Integrated Employment
  • Governor's budget for people with I/DD
  • more


Related Article

New York - SUNY Program for Direct Support Professionals Starting

By Robert Creenan, Niagara Gazette, August 4, 2023

The State University of New York has launched a new program to improve the quality of those working with the disabled. In partnership with the state Office for People with Developmental Disabilities, 12 SUNY campuses will offer certification courses for direct support professionals.

Office commissioner Kerri Neifeld described this as something on top of the required training these professionals get. “We want to see people attracted to this field we want to bring that professional level of skill,” Niefeld said, with addressing workforce challenges the field is facing one of their top priorities.

Tuition fees are paid for through $5 million from the American Rescue Plan Act, covering program fees, books, tuition, a laptop and accreditation costs for students. It will also provide for tutors, success coaches and program administrators, along with a $750 incentive for students who complete a micro-credential and earn a certification.

Courses will be offered online, with lead coordinator Dr. Cindy Oberjosh explaining that students are busy and they wanted to provide something convenient. Two DSP-I groups starting on Aug. 28 and Sept. 11, with a lot of interest already for the fall semester. Each participating campus will work with an OPWDD-operated or affiliated provider to up skill current workers or provide internships to those new in the field.


Texas Child Welfare Agency Fails Vulnerable Teens when they Turn 18, Whistleblower Says

By MyParisTexas, August 1, 2023

Recently, on her 18th birthday, a Texas foster youth with an IQ of 70, an inability to safely care for herself and an extensive history of hospitalizations for mental health issues was told by law enforcement to leave the unlicensed facility where the state’s child welfare agency had housed her.

Next, “client took her dolls and began walking down the road,” reads a letter Child Protective Services disability specialist Gina Magliolo sent to state officials on June 24.

Ultimately, Magliolo helped the teen find a bed in a homeless shelter for adults, and later a foster care placement for older youth. But for that work, she wrote, she was “admonished by my boss for doing extra work for this youth as she is 18 and ‘needs to learn.’”

In the letter, obtained by The Imprint from a third party, Magliolo states that the case is not unique: Texas foster youth with cognitive disabilities and mental health challenges housed in churches, hotels and other unlicensed facilities as “children without placement” are being cast out of the system when they turn 18, leaving them in potentially dire circumstances.

Although Texas and states across the country can serve young adults who’ve grown up in foster care until they turn 21, Magliolo stated that “there are many children aging out of care with serious developmental and/or mental health issues that have not been properly served by this organization.”

The development disability specialist said she feels hobbled in her efforts to properly care for these children by her agency’s management staff, whom she described as “extremely abusive.”

“I am constantly told to ‘stay in my lane,’” she wrote to state Sen. Lois Kolkhorst of Brenham, Gov. Greg Abbott, several judges and a staffer at the Texas Office of Mental Health Coordination, adding, “It is difficult to stay in my lane when I know that these children will be on the streets immediately facing life and death decisions that they can neither comprehend or absorb.”

Read the full article here

Connecticut - As CT Patches One Hole in Social Safety Net, Are Others Developing?

By Keith M. Phaneuf, CT Mirror, August 3, 2023

While Connecticut’s entire social safety net is in financial crisis, state officials have focused new funding where labor unrest has been highest: at group homes serving clients with developmental disabilities.

But the nonprofit agencies that deliver the bulk of state-sponsored social programs also serve abused children, patients suffering from mental illness or addiction, inmates ready to re-enter society, the elderly and others.

And the leaders of the legislature’s budget panel announced this week they will launch an analysis this fall to study whether most services are shrinking — and how quickly — even as programs for people with developmental disabilities expand. The goal is to develop data to support budget reforms to be proposed next February when the regular 2024 legislative session convenes.

Except for workers serving the developmental disability community, many nonprofit social workers “are still at minimum wage, because we have not provided the funding for them,” said Sen. Cathy Osten, D-Sprague.

Large nonprofit agencies, which operate many programs for a wide range of clientele — not just people with developmental disabilities — have a built-in problem likely to cause friction among staff, Osten said.

“One [social worker] will be getting a significant pay raise, and one will not,” she added.


Opinion: A Greater Society Begins by Properly Caring for the Overlooked

Greater funding is needed to support individuals with intellectual and developmental disabilities and the providers who help care for them. 

By Ryan Garofalo, NYN Media, July 30, 2023

Last month, a 33-year-old man in one of our community residences used what is known as an augmentative alternative communication device to type a message to his older brother who was visiting him. Ordinarily, this might not seem unusual, given the circumstances. But before he had access to the device, this young man, who has developmental disabilities, had no way to verbally share his thoughts and feelings. So, when he told his brother, “Thank you for coming to see me,” his older brother was moved to tears. This was the first time ever that he heard his younger brother speak to him. This memorable expression of affection changed both of their lives. And it was an achievement that meant the world to us who care for the man and others like him. 

This small success was not one reported in the news media, nor would we ever expect it. And that’s because of the unfortunate reality that society often judges people based on their manner of speech, color of skin, clothes they wear, or by the cars they drive. And for the 27% of Americans who have a disability, society tends to focus on their disability and not the person. The sad truth is that for the more than 7 million Americans with intellectual and developmental disabilities (I/DD), being overlooked is the norm. This slice of our population faces lifelong challenges that affect the entire trajectory of their physical, intellectual, and/or emotional development, according to the National Institutes of Health. 

But that’s not all. Because of the many physical and health challenges this group possesses, a dismissive attitude prevails to let “others” perform the hard work needed to support these individuals as well as for those doing the noble work of caring for them.  

Well, those of us in human services who represent the “others” and work with I/DD individuals, have seen the numbers of the people we support nearly double in 20 years from 728,704 in 1999 to 1.4 million in 2019. And those figures will only increase, especially as the parents and families of those with I/DD are becoming too elderly to care for them. 

Additionally, the ages of those receiving support are rising as rapidly as their needs. In 2022, the NYS Office for People with Developmental Disabilities reported that of the 130,313 New Yorkers served, 61% are between the ages of 21 to 64, and seven percent are 65+. 

At Rising Ground, our own I/DD programs have expanded 25% over last year to include more than 30 programs that provide services such as vocational training, housing, and employment at 26 locations, of which 29 are residential group homes.

We, the primary caregivers, are with these individuals 365 days a year: through crisis, illness, and trauma, as well as holidays, celebrations, successes, and major life events. We are an extension of their family, and in some cases, we are all they have. And we’re dedicated. It’s not uncommon to see staff work in group homes for 25 years or more, tending to the people we care for. 

But we also go unnoticed.

As the numbers are growing of individuals with I/DD coming into our system, funding is not keeping pace. In New York, OPWDD sets the scale on how much we pay staff and it is often barely above the current minimum wage, making it extremely difficult to recruit talent to keep up with the demand of our services. And while a few State Medicaid dollars are available to support I/DD hospitalization, treatment often takes place in the residential settings we provide, denying the kind of healthcare and specialized services supports our clients often require.

As a result, the current system creates great disparities in accessing appropriate care and support, creating unmet health needs and a reduced quality of life. And that is unacceptable.

The difference between what we provide and what we need comes down to just three dollars more an hour per direct support professional. That additional $2 million would mean a real living wage of $20 an hour,ss to quality healthcare services and specialized support crucial for many with I/DD. And it is critical that as minimum wages rise, that this work not be viewed as minimum wage work. Given the intense and intimate nature of the support provided by direct support professionals, New York State must continue to increase their wages commensurate with the value of the care they provide.

But who’s going to argue the case? While we and the people we support march on Albany ourselves, along with a coalition of our colleagues to publicly demonstrate, sadly, adults with disabilities, and the workforce that supports them, don’t elicit the empathy that should merit. Nor do they possess the lobbying power that generates equitable treatment.


Back Issues of VOR's Weekly Newsletter are available on our web site.

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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.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.

Please share this offer with your loved one's

Direct Support Professionals!



Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

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

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with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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