January 26, 2024

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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Save The Dates!

May 6 - 8, 2024

Back to Capitol Hill!

May 6 - 8, we are assembling our members in Washington, D.C. to speak with congressional staffers, members of Congress, committee staff, federal agencies, and other stakeholders in the I/DD and autism communities.

We are still working on the details for where to stay, who to meet with, what to present / ask, etc.


Would you be willing to join us in D.C.?

With whom would you like to meet?

Would you prefer to stay home, and meet with your congressional offices via Zoom?

Please reach out to us at [email protected]

and let us know if you might be interested in attending

(no obligation)

If you would prefer to stay home and Zoom,

etc. etc. etc.

It's been five years since our last Washington Initiative, and we know that things have changed.

We need to know what our members want, and how many participants we might expect

so that we know how many rooms to reserve, how many meetings to set up, and what issues are of greatest concern to our members.

Please reach out to us at [email protected]

Our Lead Story:

West Virginia is considering a plan to create a new state intermediate care facility. According to the article below, this is very controversial.

The state's privately operated group home system has failed to look after many of its high acuity (high needs) individuals with I/DD and autism. Many of these people have been placed in psychiatric hospitals as a result. Some sensible legislators have determined that an ICF would be better suited to meet the needs of these individuals. Others object, though offering no solutions.

Why is this controversial? Have some lawmakers been so overwhelmed with the propaganda of the inclusionistas and the one-size-fits-all devotees that they would rather keep people in psychiatric hospitals than attend to their needs? Do they think the private providers are going to change their minds and accept the people they have already rejected?

This is a solution. A good solution. Lawmakers should unite behind this initiative. ICFs are an important component in the full continuum of care for people with I/DD and autism.

West Virginia - House Committee Passes Controversial Plan to Build Facility for Patients with Disabilities

By Amelia Ferrell Knisely, West Virgnia Watch, January 24, 2024

Citing “no real solutions,” House lawmakers are moving forward with a plan to build a new facility for people with intellectual and developmental disabilities. The proposal has been met with sharp criticism from those who advocate for and serve patients with disabilities; they say the bill will further trap individuals in institutions without proper support.

Under the proposed legislation, the state could build an “intermediate care facility” for individuals with intellectual or developmental disabilities (IDD) who are being held at the state’s psychiatric hospital because of severe shortage of home-like placements in communities. 

The number of IDD patients being held at state psychiatric hospitals has nearly tripled to 167 over the last decade. The uptick includes teenagers with disabilities who aged out of the state’s foster care system. 

A state health official told lawmakers on Tuesday that the individuals are often “difficult to place” in smaller group homes due to aggressive behaviors. 

“They sometimes have an inability to communicate so their frustration becomes overwhelming,” said Christina Mullins, the state’s deputy secretary for mental health and substance use disorders.

The facility would be a “step down” from the state’s psychiatric hospitals, which have faced criticism for warehousing patients amid reports of patient mistreatment and employee arrests.

On Tuesday, House of Delegates members in the Committee on Health narrowly passed the legislation, House Bill 4408, that would permit an intermediate care facility. The bill follows years of testimony from state health officials’ and advocates’ to lawmakers about a lack of appropriate placements for the IDD population. 

“We are in a tough spot, and we didn’t hear any real solutions,” said Del. Roy Cooper, R-Summers, who voted in favor of the bill. “The problem is ours now. If we don’t solve it, then we’re saying, ‘We don’t know how to face the tough problem that the state faces.’”

Del. Heather Tully, R-Nicholas, also noted that she was unsure of what the best solution was for the situation, but supported the legislation. 

“I don’t know the answer is to leave some of the individuals in state psychiatric facilities,” she said. “I kind of have to support this because maybe we could have some small intermediate care facilities who could take care of these individuals.

The bill had limited information about what the state’s first intermediate care facility might look like and included no cap on the number of beds. It said the facility is “necessary,” citing closed facilities and a “significant number of individuals who are currently being housed inappropriately in a state facility.”

The state currently has roughly 70 open beds for IDD patients but they’re unfilled due to staff vacancies and providers declining to care for some patients with behavioral issues, according to state health officials.

Mike Folio, legal director for Disability Rights West Virginia, told lawmakers that the empty beds are also due to health care providers failing to take back patients once they are safe for discharge from state psychiatric facilities. The providers receive millions of dollars in funds to serve those patients, he noted.

Read the full article here

Download and read the House bill here

The Family Caregiver Crisis:

After $1 Billion Medicaid Budget Shortfall, Indiana to Cut Program Paying Family Caregivers

By Kayla Dwyer, Indianapolis Star, January 23, 2024

Fifteen-year-old Alexander Davis is physically dependent on other people for all of his needs, from getting in and out of his power chair to sipping a drink.

But the straight-A Tipton student, who has spinal muscular atrophy, is his own spokesperson. In a meeting with his state representative at the Indiana Statehouse Monday, he and his mom, Anastasia, tag-teamed their case for why the state's plan to cut the family caregiver program will wreak havoc on their and hundreds of other families.

"I'm not trying to get rich off my son ― I'm just trying to care for him," Anastasia Davis pleaded with state Rep. Heath VanNatter, R-Kokomo. "So we're just trying to communicate that these kids shouldn't be bailed on."

"And that's what we feel like they're doing," Alexander added.

After the state's Medicaid office discovered a forecasting error in December that resulted in a nearly $1 billion budget shortfall, the agency started looking to cut costs immediately. One solution, the Family and Social Services Administration announced last week, is to no longer pay parents or spouses for caring for elderly or disabled loved ones, including children with severe disabilities and complex medical conditions.

Previously, parents could receive an hourly wage from the state ― about $14 an hour ― to care for their child in lieu of a nurse or home health aide, of whom there is a dire shortage in Indiana.

But FSSA identified these Aged & Disabled waivers as an area where the agency is "most acutely seeing an unanticipated growth in spending," the announcement reads.

The cost of such care quadrupled, from $30 million per month in April 2022 to approximately $120 million per month in December 2023, FSSA spokesperson Michele Holtkamp said. That latest figure quintupled since July 2020.

FSSA estimates this change, along with a slew of other measures ― like ending retroactive waiver coverage while someone's Medicaid eligibility is still pending and halting reimbursement rate increases ― will save $300 million a year.

The state agency does not, however, know how many families will be impacted by the cut. FSSA is collecting that data from providers now, Medicaid Director Cora Steinmetz said during a Community and Home Options to Institutional Care for the Elderly and Disabled Board meeting on Jan. 18 at the Indiana Government Center.

At least 100 family members turned up to a rally at the Statehouse Monday, and more than 10,000 people signed an online petition urging the state to change course.

Those impacted have until July 1 to either find a caregiver who is not a family member or transition into a new service model, called "Structured Family Caregiving," which pays a fixed daily stipend to a caregiver. By the time the stipend gets split between providers and the employee or family caregiver, it amounts to $30 to $80 a day on average, about a quarter of what Anastasia Davis receives now.

Davis hasn't had a job in 15 years because taking care of her son is a full-time occupation. The Davises have been approved for nursing hours since 2016 but have never been able to find a nurse to hire. In 2018 Anastasia Davis learned of the program that would pay her for her caregiving, but she was unable to enroll until 2022. The financial strain of caregiving without income sent the family into debt, she said.

This change could mean a return to devastating financial stress for her family, she said.

"I will not be able to feed my kids and keep my house warm if this happens," she said.


Caregiving Pressures Mount For Families Of Those With IDD

By Michelle Diament, Disability Scoop, January 22, 2024

With fewer and fewer services available for individuals with developmental disabilities, a survey of thousands of caregivers across the country finds families increasingly strained.

Caregivers say they’ve taken on more themselves and the quality of life for the person they support has declined since the COVID-19 pandemic upended many disability services.

Nearly all caregivers report that they are stressed with a growing number indicating that they are “very stressed.” More than half say that they are very or extremely stressed.

More than 80% of family caregivers said that they are providing more supports because services are less available than they used to be.

Caregivers are more likely to report that they quit their jobs to support a family member with developmental disabilities than they were just a few years ago. And, a majority indicated that they are paying more out-of-pocket for services.

Of those surveyed, 70% said the person with developmental disabilities that they support lives with them and just shy of half said the individual received in-home supports. About a third are on waiting lists for services.

Respondents were more likely than in 2017 to indicate that the person they support no longer has a job, a job coach, transportation or that they’ve lost paid support people due to a lack of funds.

About three-quarters of caregivers said that the person they support is not able to go out as much as they used to and does not talk to as many people as they used to.

The survey “paints a sobering picture of the often overwhelming experience of caring for a loved one with intellectual and developmental disabilities in the United States,” according to Julie Ward, senior executive officer of public policy at The Arc. “Every day, caregivers are battling service cuts, waiting lists and workforce shortages, in addition to a lack of support and reprieve for themselves.”

Read the full article here

Telehealth Therapy for Caregivers of Children With Neurodevelopmental Disorders

By Ron Goldberg, Psychiatry Advisor, January 23, 2024

"Telehealth may be an accessible and effective way to deliver psychological interventions for caregivers of children with neurodevelopmental disorders."

Mental health symptoms of caregivers of children with neurodevelopmental disorders can be effectively managed with accessible psychological support via telehealth, according to systematic review findings published in the Journal of Autism and Developmental Disorders.

Caregivers of children with neurodevelopmental disorders have reported increased mental health difficulties and reduced access to professional support. Therefore, investigators sought to characterize the efficacy of telehealth psychological interventions for caregivers of children with a neurodevelopmental disorder.

The investigators conducted a systematic review of publication databases from inception through May 2023 for trials that assessed telehealth delivery of psychological interventions for caregivers of children and adults with neurodevelopmental disorders. Additionally, inclusion criteria required that studies have pre- and post-intervention evaluations that measured stress, depression, anxiety, or psychological distress.

Overall, 12 studies (8 randomized controlled trials, 4 quasi-experimental single group designs) were included for a pooled sample size of 769 caregivers. Of these participants, 98% were parents, 68% were women, and 82% were White or European. The children being cared for were 12 (SD, 4.91) years of age, on average, and 34% were girls. Additionally, the primary diagnosis for children was autism spectrum disorder (ASD; 48%) with neurodevelopmental traits characterized by attention-deficit/hyperactivity disorder (ADHD), Fragile X Syndrome, Sensory Processing Disorder, and/or disruptive behaviors.

Telehealth intervention durations ranged from 7 days to 16 weeks and comprised both individua and group-based therapies. The investigators found that the degree of engagement was 69%

Of the 12 studies included, 4 studies reported significant and medium to very large improvements in 1 or more mental health symptoms with mindfulness (P <.05) and cognitive behavior therapy (P <.05). Additionally, psychoeducation and encouragement significantly reduced parental stress (P <.01). Overall, telehealth was found to improve mental health (Hedges’ g: range=0.394-1.955), regardless of the method of delivery. However, the longevity of these effects could not be determined.

Telehealth offers a platform to provide accessible mental health support to caregivers of children with a neurodevelopmental disability who may otherwise not seek treatment,” the investigators concluded. “Further controlled trials will help to determine whether noted mental health benefits are sustained over time as well as the suitability of telehealth as a standalone delivery method.”

These findings may be limited by the homogenous caregiver roles represented in the sample pool, the exclusion of children with dual cognitive or mental health diagnoses, and the small sample size.

Read the full article here

Managed Care of Long-Term Services and Supports:

The following articles were written about managed care of LTSS for the aging community. Our readers may draw their own conclusions about how this applies to LTSS for those with I/DD and autism.

Opinion: Cutting Expensive Middle-Men Out of Home Care Will Save New York Billions

By Gustavo Rivera, City Limits, January 22, 2024

By 2030, 25 percent of New York State’s population will be 60 or older. As our population ages, we need to ensure our state is ready to provide the services and support they need—including home care. Unfortunately, New York is currently wasting billions of dollars on private insurance companies that act as expensive middle men between the state and home care workers.

As our older population grows, we must make sure every valuable state dollar is spent directly on the care our constituents need—not siphoned off by private companies that do not provide any health care services.

New York didn’t always outsource the management of home care. For decades, the state paid for these services directly through a fee-for-service model. But in 2011, under then-Governor Cuomo, the state handed control of its Medicaid home care program to private insurance companies, arguing that privatization would improve care through the promise of care management and care coordination. 

These private insurance companies have acted as expensive middle men and made billions doing so, while doing little to “coordinate” care for New Yorkers that are in dire need. While the original concept envisioned one company coordinating healthcare services across multiple systems for an individual—such as hospital visits, nursing home stays, and medication—this has not happened. I’ve yet to see plans demonstrate that their “coordination” is improving outcomes.

Additionally, the promise of “care management” has never been delivered upon. While plans might point to the anecdotal success story, we hear hundreds of stories from people who do not have a care manager, have no way in which to reach a care manager, and are left to fend for themselves as they try to manage their health conditions, fix their wheelchairs or other durable medical equipment, and arrange for essentials, like home delivered meals, issues that I am working to address through other legislative proposals that I have advanced. 

Rather than coordinating or managing different types of care, these middle men are merely taking money from one entity—the state—and handing a portion of it directly to another—home care providers—while pocketing billions during this handoff.

In the past four years alone, an analysis conducted by 1199 estimated that, between state expenditures and federal matching funds, private insurance companies “managing” long term care have pocketed as much as $5.5 billion. Their breakdown shows over $3 billion spent on administrative costs and $2.4 billion in profit. It’s no surprise then that the largest managed care companies’ senior management are reporting massive annual salaries.

The promised higher quality of care has not materialized. Instead, New Yorkers who need care are regularly denied, forced to appeal multiple times, or left to wait months without essential care. And there’s a reason: these companies receive a flat fee of approximately $5,000 per person—so there’s a financial incentive to approve fewer home care hours, and keep more state dollars as profit. 

We cannot continue to waste millions of dollars or allow more aging New Yorkers to struggle to obtain home care. That’s why home care workers, 1199, older adults, disabled New Yorkers, and legislators, including myself, are working to end this failed experiment and remove these expensive intermediaries from the system. 

Our bill, The Home Care Savings & Reinvestment Act, would stop the state from giving insurance companies billions of dollars meant for care by removing these ineffective middle men, and returning home care management directly to the state. The bill could generate hundreds of millions to billions in savings annually, which should be used to pay for growing home care needs, improving service quality, and ensuring continuity of care by funding higher wages for home care workers during New York’s worst-in-the-nation home care worker shortage. The Act would create a cost-effective program to ensure that consumers receive the care management they need.

Read the full article here

Disclaimer: The author represents the Bronx in the NY State Senate, where he is chair of the Senate's Committee on Health, and is the author of the above bill.

The Influence of For-Profit Entities in the US Healthcare Sector: An Examination of the Current Landscape

Published by Medriva, January 19, 2024

The US healthcare system, a complex entity primarily driven by for-profit mega-corporations, has often been criticized for its inefficiencies. One such criticism has recently emerged from a global observer, who described it as a complete disaster, advising friends worldwide not to adopt a similar approach. While this statement may lack specific details or evidence, it brings to light important questions about the role and impact of profit-oriented entities in the healthcare sector. Let’s delve into this issue, looking at recent developments and trends in the industry.

  • Increasing Hospital Mergers and Financial Distress

  • Shift from Nonprofit to For-Profit

  • Non-profit Healthcare Companies and their For-profit Subsidiaries

  • Private Equity's Role in the US Healthcare Sector

Read the full article here

State News:

Following up on the news:

The following article refers to reversing proposed cuts to service for people with ID/A that appeared in last week's news letter.

Illinois - State Delays Cuts for Individuals with Intellectual, Developmental Disabilities

By Jana Weirsama, The News-Gazette, January 24, 2024

Gov. J.B. Pritzker’s administration is putting a pause on proposed funding cuts of nearly $90 million for individuals with intellectual and developmental disabilities.

According to state Sen. Chapin Rose, R-Mahomet, implementation of the changes has been delayed until the next fiscal year, which begins on July 1.

Alex Gough, a press secretary for the governor’s office, confirmed that it has been paused until the end of the current fiscal year.

“Hitting the pause button was certainly the right thing to do,” Rose said. “And now we can take the time to work with the administration, the developmental disability community and members on both sides of the aisle to get to a permanent resolution on this.”

He added that he will work to ensure the cuts are permanently rescinded rather than just temporarily delayed.

The Illinois Senate Republican Caucus previously sent a letter of protest to Pritzker about the change.

Rose wrote in this letter that the state planned to cut 2.5 million Direct Support Professional (DSP) service hours, which would affect group homes where “approximately 10,000 adults with intellectual/developmental disabilities (I/DD) reside.”

“This reduction is an approximately $87.7 million cut to I/DD individuals and accounts for approximately 9% of total DSP funded hours and would result in a reduction of service hours for 90% of all group home residents,” Rose wrote.

At the time, he said that the cuts would go into effect on April 1.


North Carolina - 'Crisis Level' Addressed for Taxpayer-Funded Caregiver Workforce

By Victor Skinner, The Center Square, January 25, 2024

A new “roadmap” to improve the state’s taxpayer-funded caregiver workforce was unveiled Wednesday by the North Carolina Department of Health and Human Services.

The “Roadmap to Strengthening North Carolina’s Caregiving Workforce” addresses a shortage of direct care workers and support professionals, who serve people with intellectual and developmental disabilities through publicly funded home- and community-based services. It is a product of a study by North Carolina Area Health Education Centers commissioned by the Health Department.

There is an estimated 182,400 direct care job openings predicted by 2030, the report says, calling it a "crisis level." Demand for those services is increasing across all caregiving settings.

Only about 13% of those jobs, or roughly 22,900, are expected to be new, with the rest suggesting a need to address turnover rates of 64%-99% tied to low pay and stressful work environments, according to the report.

The Area Health Education Centers suggested six key areas of focus to improve the situation: an umbrella system for credentialing direct care workers using new and existing training options; adopting common competencies for all direct care workers; increasing access to training with paid training time; developing administration and oversight of credentialing; connecting training with wage and rate differentials; and wraparound support services for direct care workers.

Most if not all of the suggestions are premised on increased funding from taxpayers and others involved.

The General Assembly in November appropriated $176 million in recurring state and federal funds to increase rates for direct service providers, with the goal of raising the average wage to $18 an hour. The median hourly wage for direct care workers in North Carolina is $12.59, and about 47% live in low-income households, according to the report.

Surveys cited in the report show the direct care worker shortage and high turnover has resulted in 66% of providers turning away new referrals, 34% discontinuing services, and 40% reporting higher frequencies of reportable instances.

Read the full article here

Protections for Oklahomans with Disabilities: A New Priority for the New Year

By Ellyn Hefner, City News OKC, January 21, 2024

Protecting Oklahomans with intellectual and developmental disabilities (IDD) will be a new priority in the New Year. As we prepare for the 2024 legislative session, ensuring caregiving safety for this vulnerable IDD population will be top of mind following recent allegations about widespread abuse of residents at the Robert M. Greer Center in Enid.  

A state-owned intermediate care facility, The Greer Center accepts adults dually diagnosed with intellectual disabilities and co-occurring mental illness and/or severe behavioral challenges. Liberty of Oklahoma Corporation (Liberty) has managed the Medicaid-certified, short-term treatment program on behalf of the Oklahoma Department of Human Services (OKDHS) since 2000.

Greer and other facilities like it around our state have to do better. We must force a culture shift in the caregiving profession that serves Oklahomans with IDD who reside in these facilities. It starts with a rate raise for providers, which helps demonstrate the value and importance of the work they do in caring for adults with disabilities. Families need to be able to access help for their loved ones when they have a question about the professional caregiving that takes place in these state-run facilities.

In addition to this new focus on protecting Oklahomans with IDD, four bills from last session are still alive and offer a positive impact for families who have a child with a disability. 

  • H.B. 2716 reporting on the progress of the waiting list
  • H.B. 2717 updating TANF dollars for respite care for families who have a child with a disability
  • H.B. 2718 Oklahoma’s Promise made available for students who have an intellectual developmental disability (IDD) for post-secondary education.
  • H.B. 2722 Distribution of information from agencies about ABLE accounts to families who have a child with a disability


El Paso State Supported Living Center Opens $550,000 Sports Complex for Residents with Special Needs

By Drew Pittock, KFOX-TV, January 18, 2024

The El Paso State Supported Living Center (El Paso SSLC) unveiled its new sports complex Thursday, where the center's community of differently-abled residents can shoot hoops, score goals and hit home runs.

The Texas Health and Human Services Commission hosted a ribbon cutting Thursday, to celebrate a new sports complex at El Paso SSLC. The $550,000 sports complex features a basketball court -- which doubles as a soccer pitch -- as well as a baseball field adjacent to the court, allowing El Paso SSLC residents to "meaningfully engage with each other and build comradery," SSLC said in a statement.

El Paso SSLC, home to almost 100 residents, provides campus-based direct services and support to people with intellectual and developmental disabilities.

Residents receive 24/7 residential services in a structured environment.

Services include personalized behavioral treatment, primary and specialty health care, psychiatric services, dental care, skills training, day habilitation and employment services, as well as customized adaptive aids such as seating and positioning devices.


Training Teaches Oklahomans with Developmental Disabilities How to Interact with Law Enforcement

By Meghan Mosley, KOCO News, January 19, 2024

A nonprofit joined forces with a retired Oklahoma City police officer who teaches individuals with developmental disabilities how to interact with law enforcement.

Organizers said these trainings are vital for people with disabilities, who may not know how to handle these situations. Trainees were given safety cards that would make officers aware of their disability and needs.

"Especially if they are nonverbal. A lot of times, I ask you to do something, and you fail to answer me, I may think you're being defiant. But if you're nonverbal, I may not know that," said Stanley Campbell, a retired lieutenant with the Oklahoma City Police Department. "Their challenges, social challenges, physical challenges kind of mirror what officers see as suspicious behavior or resistance."

"Many of our individuals have live-at-home or live-in-a-group environment, and so their interactions in the community are rather limited," said Angela Duckett, the developmental disabilities services program director. "So when they do have that opportunity to be in the community, we want them to be safe."

Read the full article here

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.

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

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