September 28, 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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During September, we ask our supporters to reach out to friends, family, and members of their ICF family groups or sheltered workshops to bring new members into our family.

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VOR's Hugo Dwyer and Gayle Gerdes attended the meeting of the PCPID earlier this week. The two-day conference concluded the reporting of the current term of this committee, which was live-streamed via the Administration for Community Living. A video recording will probably be posted in the next few weeks. Hugo and Gayle were "public observers", a designation meaning that they would not be allowed to make any comments during the proceedings.

The committee worked on a number of topics, including the DSP shortage, the Housing Shortage, the growing waiting lists for services, and the groups' support of competitive integrated employment and their determination to eliminate sheltered workshops and Section 14(c) of the Fair Labor Standards Act.. All of the committee's work centered around Home- and Community-Based Services (HCBS) programs. There were no representatives of Medicaid's other I/DD silo, i.e. individuals with severe/profound I/DA who cannot advocate for themselves, many of whom reside in ICFs or other large congregate care facilities. Once again, the President's Committee for People with Intellectual Disabilities has failed to represent the entire scope of people with intellectual disabilities.

The committee numbered the highest number of self-advocates with I/DD and autism in its history. with the number of self-advocates exceeding the number of non-I/DA members. Overall, the conference was long on real-world problems and personal opinions, short on real-world solutions. The ineffectiveness of the PCPID was best expressed by Joseph Macbeth of the National Alliance of Direct Support Professionals, who pointed out that the PCPID has for several decades brought up the topic of the shortage of DSPs, low wages and lack of career paths or recognition as health care professionals, yet absolutely nothing has changed. No president, upon receiving the committee's reports, has taken any action to address this most vital issue.

Several of the presentations from outside agencies were excellent and informative, most notably Mary Sowers of the Link Center on individuals with I/DD and autism who are also diagnosed with severe mental illnesses and the difficulty in combining those separately siloed services. Also outstanding were reports from Kelly Buckland of the US Department of Transportation on the department's progress in improving access for people with disabilities, and Greg Link of the ACL's Office of Supportive & Caregiver Services on the RAISE Act and how it will help family caregivers.

As always, Joe Macbeth's presentation on the problems of recruiting and sustaining a workforce of quality DSPs was the single most important issue raised during the conference.

It is worth noting that the Director or Disability Policy of the White House Domestic Policy Office, which chose the members of this committee, made a brief statement at the beginning of the conference and was absent from the rest of the proceedings.

While there were a few self-advocates who were severely impacted with developmental disabilities, some who spoke through their family members, the exclusion of people who rely on intermediate care facilities was telling, especially in the biases of the committee's purview and the anti-ICF prejudices of some of its members. There was no mention of the Autism tsunami, the Autism CARES Act, or the exclusion of the words severe or profound from that act. There were no representatives of people who rely on sheltered workshops. A common theme was that day habilitation services kept increasing, with the idea that all of the people in day-hab should be working in competitive employment instead.

No one spoke of the right to choose, and of a family's right to make choices on behalf of a loved one who lacks the capacity to make choice her- or himself.

One self advocate did call for the elimination of all ICFs, not understanding that HCBS does not offer that level of care and that without 24/7 nursing services, many of these individuals would die. Of special note was one self-advocate who vehemently singled out an organization in her state, VOR, which she referred to as the Voice of Unreasonableness, and called them the organization that wants to put people in institutions.

The lack of representation of people who receive services through the non-HCBS silo of CMS again fostered misinformation and prejudice against our families and our loved ones.

Once again, the President's Committee for People with Intellectual Disabilities will submit a report to the President that fails to represent the entire scope of people with intellectual disabilities.

Opinion: Tackle the Shortage First

Letter from Jacqueline Gorton, Northwest Arkansas Deocrat Gazette, September 28, 2024

Recently, the Arkansas Department of Human Services launched an educational campaign to raise public awareness about the availability of home and community-based services for Medicaid beneficiaries in Arkansas. Unless I missed it, I didn’t see anything in the announcement addressing the drastic shortage of qualified direct support professionals and the currently long waiting list for services.

Families struggle every day to meet the needs of their loved ones, with limited to nonexistent support staff and other necessary services available from their service provider. Families are faced with carrying the caregiving responsibility on their own or dealing with a constantly revolving door of support staff entering and exiting, leaving them exhausted from the continuous, unrelenting stress associated with turnover. As a parent of a 32-year-old daughter who is a longtime waiver recipient, I am very familiar with what it means to experience a staff shortage.

Recruitment and retention of support staff is where the focus should be, not program growth. Critically assess the current role of each Provider-Led Arkansas Shared Savings Entity. Actively and openly seek workable solutions in concert with both providers and families to address the support staff shortage. Address the pay/benefits issue. That’s what families need.

Asking more families to seek services that currently cannot be provided because there aren’t enough people to provide them is just plain cruel.

Read the letter here

Senators Push Back On Potential Changes To Subminimum Wage Program

By Michelle Diament, disability Scoop, September 26, 2024

With federal officials expected to propose a new rule that could end a government program allowing people with disabilities to be paid less than minimum wage, some lawmakers are already raising red flags.

The U.S. Department of Labor is planning to issue a notice of proposed rulemaking related to Section 14(c) of the Fair Labor Standards Act. The law, which dates back to 1938, allows employers to obtain special certificates from the Labor Department authorizing them to pay people with disabilities less than the federal minimum wage of $7.25 per hour.

The particulars of the proposal are unclear, but many disability advocates have been pressing the Labor Department for years to phase out so-called subminimum wage, which can leave workers with disabilities earning as little as pennies per hour. Several states have already banned the practice, a step that President Joe Biden has said he supports at the national level, and the number of people with disabilities paid subminimum wage has dropped sharply in recent years.

But even before the release of any proposed rule, Sens. Tom Cotton, R-Ark., and John Boozman, R-Ark., are voicing concern that the agency is “considering a new rule that would abolish the 14(c) program.”

In a letter to Acting Secretary of Labor Julie Su and Shalanda Young, director of the White House Office of Management and Budget, the senators said that changes to the 14(c) program should be up to Congress.

“Regardless of any policy objections the administration might have with the 14(c) program, it must be enforced according to the law,” the letter reads. “Any efforts to make it functionally unworkable without Congressional authorization would be illegal.”

The senators are asking the Biden administration to address how many people with disabilities would lose jobs at sheltered workshops under the proposed rule and how the job losses would impact families who may be left to provide daytime care for individuals who are newly unemployed.

“All people, regardless of their abilities, should have the opportunity for dignified work,” the letter states. “The 14(c) program does not limit the ability of disabled workers to engage in competitive employment. It merely provides those with difficulties in a traditional work environment the opportunity to engage in meaningful work. It provides many vulnerable Americans with a sense of accomplishment and provides their families and caretakers with time to complete activities necessary for the functioning of their households.”

Continued

NOTE: Once again, the correct term is not "Subminimum Wage", but "Compensatory Wage", as participants in these programs are paid based on productivity and may actually be paid higher than the minimum wage.

Securing housing is one of the greatest challenges adults with disabilities face in New Jersey, according to Paul Aronsohn, New Jersey’s Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.

Aronsohn was one of more than a dozen experts, stakeholders, legislative leaders and advocates to speak at “Innovative Models, Unmet Needs,” a conference devoted to exploring housing solutions for individuals with intellectual and developmental disabilities presented by the Steve Sweeney Center for Public Policy at Rowan University on Sept. 24.

“People with disabilities should be able to choose where and how they live,” Aronsohn said. “This is the challenge: to meet the needs and preferences of a large, diverse disability community.”

Understanding the complex housing needs of adults with disabilities

The first-ever conference focusing on the development of congregate housing for adults with intellectual and developmental disabilities, and those with behavioral and medical issues, covered the needs, challenges and solutions for providing appropriate housing.

Adding to the challenge of developing suitable housing are the diverse needs of these individuals—and the high stakes, according to experts on the panel.

“People with disabilities have different needs, different preferences and deserve different options,” said Aronsohn. “We need to think big and think differently.”

Despite the complexities of the disability population’s housing needs, “this should not be hard to fix,” said Assemblyman Louis D. Greenwald, New Jersey Assembly majority leader and co-chair of the Legislative Disability Caucus that inspired the conference. “It allows for an opportunity for your children, our children, to thrive and succeed.”

Lisa McCauley Parles, a parent of an adult with disabilities and an attorney who represents the needs of individuals in this community, has contributed to efforts to build an intentional community for adults with disabilities that would serve the full spectrum of the diverse population’s needs.

“Don't focus just on the buildings,” said Parles. “Take time to look at how you're going to create an agency with a long-term plan that's going to do the most important thing, which is survive us.”

To Parles, this emphasis on the longevity of housing solutions for adults with disabilities that will live on even after individuals’ parents are gone is critical. Other parent advocates shared the same concern.

“This area is probably the scariest as a parent,” said former New Jersey State Senate President Steve Sweeney, the father of an adult with disabilities. “Where’s my daughter going to live when I'm gone?”

Continued

On a nearby door painted deep blue, a bright yellow Minion character offers “ways to say hello,” lists of suggestions about how prisoners incarcerated in a segregated unit of Pennsylvania’s State Correctional Institution at Albion can best greet each other. A handful of “sensory” rooms in the unit offer calming blue walls where harsh fluorescent lighting is dimmed by special covers.

The unique environment is part of a program aimed at providing better serving prisoners with intellectual or developmental disabilities, a growing population that has presented a challenge for corrections officials as they try to balance the need for security with accommodations, according to experts.

Such prisoners often struggle with overstimulation, inflexibility, and trouble with complex directions, resulting in strong reactions that can lead to further discipline. They also grapple with social boundaries, making them more vulnerable to abuse, violence or manipulation in prison, said Steven Soliwoda, creator of Albion’s Neurodevelopmental Residential Treatment Unit.

In a regular prison setting, many of these prisoners with autism and similar disabilities “would normally have kind of gotten through their incarceration just quietly,” said Soliwoda, who is also program manager at Albion. “Maybe they would have been a recluse or spent a lot of time in their cell. But their voices are heard in the program and they develop that independence and the social skills they need to survive when they get out of here.”

There is no comprehensive count of how many prisoners in the U.S. have autism or intellectual disabilities, though some studies estimate more than 4% are autistic and almost 25% reported having cognitive impairments, according to the U.S. Bureau of Justice Statistics — nearly twice the rate of each in the overall population.

Many advocates believe the number could be much higher because of underdiagnosis before prison or because of ineffectual or nonexistent screening at some corrections departments.

The Neurodevelopmental Residential Treatment Unit, located roughly 20 miles outside of Erie, Pennsylvania, was started about three years ago and is the only facility of its kind in the state. The unit houses about 45 men — a small population that helps staff focus on individual treatment and limits some of the sensory stimulation of prison, Soliwoda said.

There’s an exercise yard not accessible by the prison’s general population, and prisoners stay in the unit to receive their medication and see specialized treatment staff. They can check out puzzles, yoga mats, or drawing supplies to help them cope in overwhelming moments. One prisoner spends hours every day juggling in the common area to help calm his mind — something that wouldn’t be allowed in most units.

“My first impression I got was, ‘Wow, this is more like a therapy and rehabilitation for criminals with all these paintings and like positive messages surrounding it,” said Christopher, a prisoner diagnosed with a form of autism.

Sean, a prisoner diagnosed with autism and intellectual disabilities, said he felt safe here. “It’s not like the general population where I would be more prone to being bullied and stuff like that,” he said. “You get to learn about how to cope and how to recognize your emotions.”

Soliwoda said he hopes to bring more programming to the unit as it continues to evolve. For now, though, corrections department officials don’t have plans to expand the model to other prisons. Critics say that’s a mistake, that with more than 36,000 people incarcerated in Pennsylvania state prisons, there are likely many more prisoners with these disabilities.

Continued

NOTE: There are estimates that the number of people with I/DA in U.S. prisons exceeds 500,000 (Click here)

Law Enforcement Response to Persons with Intellectual and Developmental Disabilities

By Dustin A. Richardson, Jeremy D. Barnum, Meagan E. Cahill, Dulani Woods, Kevin D. Lucey, Michael J. D. Vermeer, and Brian A. Jackson,RAND, September 23, 2024

Intellectual and developmental disabilities (IDDs) are lifelong conditions that are usually present at birth or by the age of 18. IDDs can affect an individual's physical, intellectual, and emotional development. Individuals with IDDs are overrepresented in the justice system for myriad reasons, and studies have found that IDD-related challenges can make interactions with police officers difficult. Police are trained to recognize and respond to a wide variety of situations in which individuals are acting atypically, but many IDDs are hidden or not immediately recognizable by physical characteristics and can be mistaken as the effects of drugs or other substance use. Although police need not diagnose specific IDDs, it is critical that they can recognize when IDDs present in a crisis situation and know how to respond appropriately.

RAND and the Police Executive Research Forum, on behalf of the National Institute of Justice, organized a workshop of subject-matter experts, including police practitioners, researchers, individuals with lived experience, and community stakeholders to discuss the current law enforcement response to individuals with IDDs and identify research and policy needs to support efforts to address expert-identified problems and opportunities. Through a series of interviews and group discussions, the workshop participants identified 23 high-priority needs, six of which they categorized as highest priority. These needs address issues related to (1) understanding law enforcement's involvement with persons with IDDs, (2) improving IDD training and resources for law enforcement, and (3) establishing partnerships and avenues of dissemination for improving the law enforcement response.

Key Findings

The most significant barrier to improving the law enforcement response to persons with IDDs is the inability to answer basic questions regarding law enforcement's involvement with this population

• Little is known about law enforcement agencies' approaches to the IDD population in their communities.
• There is a lack of standards for the IDD-related data that should be collected, who should collect the data, and where they should be stored.
• Law enforcement professionals frequently lack critical information (e.g., information about the individual, such as sensory sensitivities or passions) when responding to IDD-related calls or encountering persons with IDDs in the community.
• There are not enough individualized community-based solutions for supporting justice-involved individuals with IDDs.

There is scant guidance on how training should be developed and delivered for a variety of criminal justice professionals (officers, dispatchers, etc.)

• Consequently, existing training lacks uniformity and often neglects a broad range of cultural competencies, intersectionalities, and other disabilities.
• Existing training lacks information on how to help people with IDDs in such scenarios as due process and understanding their rights (for individuals who do not understand) or taking victims seriously when they do not present as neurotypical.

The needs identified by the expert panel underscore two overarching themes: (1) the significance of partnerships and (2) the importance of information dissemination

• Law enforcement professionals frequently lack information about available community resources when responding to IDD-related calls or encountering persons with IDDs in the community.

Continued

Massachusetts - DDS Provides Heavily Redacted Documents Concerning One-Time Calculation of Vacancies in State-Operated Group Homes

By Dave Kassel, The COFAR Blog, September 25, 2024

The Department of Developmental Services has provided us with almost completely redacted documents concerning a calculation it made that there were approximately 91 vacancies in its state-operated group homes as of June of 2023.

That month in 2023 was apparently the one and only time that DDS ever attempted to determine the number of vacancies in the homes. The Department, however, is either unable or does not want to explain how or even why the vacancy rate was calculated on that one occasion.

In July of this year, we reported that DDS had finally clarified, after we had filed an appeal for records from the Department, that it doesn’t track the number of vacancies in its state-operated group home network.

However, in September 2023, the Department stated that it could, in fact, provide us with the number of vacancies as of that one date. The vacancies were within a network of group homes that then had close to 1,000 residents. (As of this past June, the total number of residents had dropped to 986.)

About two months later in 2023, DDS stated that the number of 91 vacancies was only “an approximation” that had been determined in a one-time “exercise” that DDS employees had participated in. Since then, “no similar exercises have been conducted,” a DDS attorney stated.

That explanation, however, only appeared to raise the question why DDS attempted on one occasion, but never again, to determine the number of vacancies in its group-home network.

Even though thousands of people with intellectual and developmental disabilities are waiting for residential placements and other services from DDS, why would the Department not have a continuing interest in knowing whether its state-run network has available beds for them?

Based on those questions, we filed a new Public Records Request with DDS on July 12 of this year, seeking all documents relating to the Department’s exercise, which had resulted in identifying the approximate number of state-operated group home vacancies as of June 30, 2023.

We hoped some of those documents might shed light on why the exercise had been conducted.

In a response on August 9, DDS provided records that it described as “documents that DDS employees relied upon to identify the approximate number of state-operated group home vacancies as of June 30, 2023.”

Continued

Iowa - Glenwood ex-Medical Director Settles Gross Malpractice, Negligence Case with Iowa

By Clark Kauffman, Iowa Capital Dispatch via Des Moines Register, September 26, 2024

State licensing officials who accused a former state-employed physician of gross malpractice or negligence have settled the case with a warning and requiring the doctor to surrender his already expired license.

State records indicate that in 2021, the Iowa Board of Medicine initiated an investigation of Dr. Mohammad E. Rehman, the former medical director of the state-run Glenwood Resource Center for individuals with disabilities. That was three years after the medical staff at Glenwood publicly issued a vote of no confidence in Rehman’s abilities, and one year after Rehman resigned in lieu of being fired.

In 2022, Rehman’s license expired. More than two years later, in June of this year, the Board of Medicine filed formal charges against Rehman accusing him of professional incompetence — an offense that is defined by the board as including “willful or repeated gross malpractice,” willful or gross negligence, a lack of knowledge or ability to discharge one’s professional duties, or a failure to exercise a degree of care ordinarily exercised by physicians.

With a hearing on the matter scheduled for September 2025, the board opted last week to settle the case against Rehman by issuing him a warning and requiring him to turn in his expired medical license. No fines or civil penalties were imposed.

Although the case is now resolved, the board is not publicly disclosing the basis for the charges against Rehman or stating how, where or when the offending conduct took place. The board also has given no indication as to whether any patients were harmed by Rehman’s conduct.

Glenwood ex-medical director had been subject of since-dismissed staff lawsuit

Rehman’s resignation at Glenwood followed staff complaints of poor medical care, reports that the death rate at Glenwood had doubled, and a federal investigation into sexual arousal studies the home was planning to conduct on residents.

Rehman and Glenwood’s former superintendent also were among the defendants named in a civil lawsuit filed by six former Glenwood employees, including two physicians and a nurse practitioner.

The lawsuit alleged Rehman had criticized doctors for providing residents with “too much” diagnostic care and treatment, and for sending too many patients to area hospitals for treatment rather than providing treatment using Glenwood staff.

The plaintiffs also alleged Rehman directed others to falsify or erase entries in medical records to hide damaging information that Rehman did not want to appear in the regularly audited patient records.

A Polk County judge dismissed the case earlier this year after ruling the plaintiffs had failed to show a clearly defined and well-recognized public policy that protected their activities at Glenwood, and that they had failed to show they acted as whistleblowers by reporting their concerns to law enforcement or other public officials. The plaintiffs have appealed that ruling.

Read the full article here

NOTE: This represents a gross miscarriage of justice. Rehman's actions resulted in the closure of a vital facility, and will result in hastening the deaths of many of its former residents. The state of Iowa has abdicated its responsibility to care for these individuals, and to support their caregivers and their surrounding community in favor of expediting a quick dismissal of charges that detail what is, ultimately, their failure to provide for the most vulnerable individuals in their state.

Pennsylvania - Historic Budget Investments in Intellectual Disability and Autism Services Announced

Julie Noal, The Progress, September 23, 2024

Department of Human Services Secretary Dr. Val Arkoosh joined leadership and staff from Jefferson Health’s Honickman Center to highlight the life-changing investments in Gov. Josh Shapiro’s bipartisan 2024-25 budget for Pennsylvanians with intellectual disabilities and autism. The Secretary’s visit included a tour of the Honickman Center, which was specifically designed to be inclusive of people who are neurodiverse.

“Every Pennsylvanian with intellectual disabilities and autism has health care and daily living needs that are unique to them, and they each deserve the dignity and autonomy of receiving the supports they need when they need them,” said Secretary Arkoosh. “Jefferson Health’s Honickman Center is an example of what we can achieve when we consider a person’s unique needs and embrace meeting these needs as an opportunity to build more welcome, accessible systems of care.”

This year’s budget includes investments in Pennsylvanians with ID/A and the direct support professionals who care for them by securing $354.8 million in federal and state funding to provide more resources for home and community-based service providers. The funding includes $280 million to help raise wages for DSPs and $74.8 million to begin the process of clearing the emergency waiting list. This investment in provider rates will support recruitment, retention, and wages for DSPs who make inclusive, enriching lives possible for people with intellectual disabilities and autism.

Continued

Governor Gianforte Invests $2.5 Million To Meet Behavioral Health Needs in Rural Montana

Press Release, Montana DPHHS, September 26, 2024

Governor Greg Gianforte today announced an investment of up to $2.5 million to support rural counties and tribal communities as they design and implement targeted, locally-developed solutions to behavioral health needs within their communities.

As recommended by the Behavioral Health System for Future Generations (BHSFG) Commission, the investment represents the next allocation of $300 million in funding secured by the governor last year to reform and improve Montana’s behavioral health (BH) and developmental disabilities (DD) services systems.

“Each Montana community faces different challenges and it’s critical we help address their specific needs to tackle the behavioral health crisis together,” Gov. Gianforte said. “This funding will provide tribes and rural counties with the resources they need to design and implement programs that work best for the Montanans they serve.” 

The one-time, two-year grants of up to $250,000 each will be awarded to up to 10 tribal communities and rural counties throughout Montana. Through the program, tribes and counties can apply for either the System-Level Innovation or Local-based Community Health Workers track.

On May 22, 2023, Gov. Gianforte made a generational investment to reform and improve Montana’s BH and DD services systems by signing House Bill 872 into law. A central component of the governor’s Budget for Montana Families, the $300 million investment will expand intensive and community-based BH and DD services across Montana.

Read the full article here

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

VOR SUPPORTS:

S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.

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.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental 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.

S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.

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.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:

H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.

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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