July 5, 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.

The Supreme Court Just Opened the Door to the Criminalization of Disability

By Evan Monod, Slate, July 01, 2024

In a 6–3 ruling, the Supreme Court just held that people experiencing homelessness could be subject to criminal and civil penalties for sleeping in public spaces. In City of Grants Pass v. Johnson, the court overturned a decision by the U.S. Court of Appeals for the 9^th Circuit, which had held that these penalties were unconstitutional under the Eighth Amendment’s prohibition on cruel and unusual punishment. This case stemmed from Grants Pass, Oregon, where local politicians were seeking to eradicate the homeless population through fines and jail time.

As a disability rights lawyer who has a disability, I know that this decision will devastate my community. People with disabilities are disproportionately likely to experience homelessness. Data reveals that 78 percent of homeless people report having mental health conditions, and an estimated 52 percent of homeless adults in shelters nationwide have a disability. People with intellectual and developmental disabilities in particular face a housing crisis with many contributing factors, such as a serious lack of safe, affordable, accessible, and integrated housing, and significant housing-related discrimination. Outdated public policy and programs unnecessarily segregate people with IDD, and community-based programs are frequently underfunded. Likewise, the lack of physically accessible and affordable housing pushes people with disabilities who rely on Social Security Disability Insurance and Supplemental Security Income into homelessness. Only 6 percent of homes nationwide are wheelchair accessible.

People with disabilities are at the heart of the Grants Pass case. At the trial court level, multiple people submitted declarations that they were not able to stay at the only shelter in Grants Pass because of their disqualifying disabilities. For example, CarrieLynn Hill could not stay at the shelter because it banned residents from using the nebulizer she needed regularly in her room. Debra Blake’s disabilities prevent her from working, and she could not comply with the shelter’s requirement to work 40 hours a week. Hill and Blake are examples of the impossible choices faced by so many homeless disabled people. They cannot be at the shelter, but they risk prosecution under the ordinances if they remain unhoused.

Faced with criminal sanctions for not having a place to live, Hill and Blake, alongside other homeless people, sued Grants Pass because they felt that the ordinances amounted to cruel and unusual punishment under the Eighth Amendment. They relied on Robinson v. California, a Supreme Court decision from 1962. In that case, the court held that the Eighth Amendment bars state and local governments from criminalizing a status, such as being addicted to drugs.

In Robinson, the court based its decision partially on an understanding that the Eighth Amendment bars the criminalization of disability. Writing for the Robinson majority, Justice Potter Stewart declared, “It is unlikely that any State at this moment in history would attempt to make it a criminal offense for a person to be mentally ill, or a leper, or to be afflicted with a venereal disease.” Even in the early ’60s, the court recognized that the criminalization of disability was unconstitutional.

Yet in Grants Pass, the Supreme Court has sent the Eighth Amendment back to the 19^th century. Writing for the majority, Justice Neil Gorsuch distinguished the case from Robinson, claiming that the ordinance in Grants Pass prohibits only actions like sleeping outside, regardless of housing status. The opinion implicitly overrules Robinson by casting it as an outlier that “sits uneasily with the [Eighth] Amendment’s terms, original meaning, and our precedents.” The opinion contains no reference to disability, even after a group of 24 disability rights groups filed a friend-of-the-court brief urging the court to consider how Grants Pass’ ordinance criminalizes being disabled and homeless.

Read the full editorial here

The SCOTUS Case You Might Have Missed

By Ben Leonard and Chelsea Cirruzzo,, Politico, July 3, 2024

Lost in the wake of the Supreme Court’s decision to end the Chevron doctrine, a lower-profile case has the potential to shake up health policy.

The high court’s conservative supermajority ruled in SEC v. Jarkesy that those facing civil penalties from the Securities and Exchange Commission have the right to a jury trial in a 6-3 decision, casting doubt on whether other agencies can use a similar in-house process. Although Chief Justice John Roberts argued the ruling’s impact would be relatively narrow, liberal justices and experts argue that it could have a broader impact, including on health care.

“It will encourage the industry to litigate against these kinds of enforcement actions and require HHS to go through lengthy jury trials in order to try to enforce its actions,” said Lawrence Gostin, faculty director of the O’Neill Institute for National and Global Health Law at Georgetown University. “That could really damage our ability to prevent and punish fraud and abuse and other wrongdoing.”

HHS has the power to enact a slew of civil monetary penalties, allowing the agency to fine those who violate the landmark privacy law HIPAA, transparency laws, information blocking rules and the No Surprises Act, among others. HHS’ Office of the Inspector General has similar authority over health care fraud, and the FDA has authority for violations of tobacco sales rules.

How often agencies use enforcement powers has varied, but HHS has issued HIPAA fines and recently laid out potential fines of up to $1 million for providers that refuse to share patient information upon a patient’s request. In a six-month period in 2023, the HHS inspector general took civil actions against 422 individuals and entities and excluded 750 individuals and entities from participating in federal programs like Medicare.

Those hit with civil fines could contest an agency’s authority because the procedures don’t have the same protections as other trials. “The Court’s decision in Jarkesy casts significant doubt on HHS’ ability to continue its historical reliance on these administrative procedures,” Sidley Austin attorneys wrote Monday.

Brian Bewley, partner at Reed Smith and former senior counsel at HHS OIG, told POLITICO that the decision will enable entities and individuals subject to penalties to challenge the constitutionality of administrative proceedings and the fines themselves.

“The government’s resources are limited, so this will have a chilling effect,” Bewley said.

Read the full article here

Pennsylvania Proposes Historic Budget to Transform Care for Individuals with Intellectual Disabilities and Autism

By Maryann Pugh, My Chesco, June 30, 2024

On Wednesday, a significant roundtable discussion at Keystone Human Services unfolded as Department of Human Services (DHS) Secretary Dr. Val Arkoosh met with advocates, families, caregivers, and providers. The conversation centered around Governor Josh Shapiro’s 2024-25 budget proposal, which promises unprecedented funding for Pennsylvanians with intellectual disabilities and autism (ID/A), and aims to revolutionize the support system for both individuals in need and their caregivers.

For years, Pennsylvanians with ID/A have languished on lengthy waiting lists, unable to access vital services that enable them to actively participate in their communities. This systemic delay has not only limited the lives of those with ID/A but also placed additional strain on their families and caregivers. Secretary Arkoosh underscored the unacceptable nature of this reality, voicing the urgent need for tangible change. “This is unacceptable, and we must do more to ease barriers to care and services,” she stated, highlighting the urgency of addressing these longstanding issues.

At the heart of this pivotal moment is Governor Shapiro’s budget proposal, which enjoys bipartisan support. The proposal outlines an investment of $483 million in federal and state funding designed to bolster home and community-based service providers. This financial infusion is aimed at increasing the average starting wage for service professionals from roughly $15/hour to an improved $17/hour. Such a wage increase is critical for attracting and retaining qualified staff essential for providing these indispensable services.

Governor Shapiro’s commitment to this cause was evident late last year when he announced that DHS would reassess rates sooner than required, to better support these crucial service providers and the dedicated professionals working within the sector. Additionally, a one-time supplemental payment was released in June to aid workforce recruitment and retention efforts.

Adding to the momentum, Governor Shapiro has directed DHS to expand program capacity, enabling an additional 1,650 Pennsylvanians to receive services this year alone. Furthermore, the proposed budget earmarks $78 million in federal and state funds to extend services to another 1,500 individuals in the following fiscal year. This move signals the kickoff of a multi-year expansion plan aiming to position Pennsylvania as a national frontrunner in ID/A services and eradicate the state’s adult emergency waiting list.

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Indiana - Changes to how state pays parents to care for their medically complex kids take effect Monday

By Emily Longnecker, WTHR News, July 1, 2024

Big changes kicked in Monday for how the state pays the parents of medically complex kids to take care of their children at home.

The changes were announced in January by the Family Social Services Administration as a way to cut how much the state spends on Medicaid every year.

Last year, FSSA found a nearly $1 billion shortfall in what they predicted they'd spend on Medicaid and what they'll actually spend by next July.

To make up for some of that, FSSA changed how parents are paid by the state to take care of their kids with constant medical needs. 

Already, one mother said the transition has left her in a terrible spot.

"We thought we had everything in order for her," said mom Jenn Lukawski.

When FSSA announced changes to how it pays parents and guardians to care for their medically complex kids, Lukawski and her husband Brian, who are guardians to 6-year-old Sophia, went into action.

"I had to go to court and ask a judge not to be her guardian," said Lukawski.

That's because under the FSSA changes, the state will no longer pay some parents or guardians an hourly rate to care for their medically complex kids under the attendant care program.

Instead, parents will now get paid a daily rate, under a different program, the structured family care program.

Lukawski wanted to stay with the first program, not because of how she got paid, but because the attendant care program also provided Sophia with two additional caregivers, that come in during the day, so Lukawski can sleep, after caring for Sophia during the night.

"A lot of our kids, a lot of our families, it's team work," Lukawski explained.

Now Sophia's care team's in jeopardy after Lukawski discovered, she's still Sophia's guardian because of what she calls a clerical error through the courts.

Lukawski said she alerted FSSA to the mistake, but said they responded by pausing payment for Sophia's care completely.

"We have no services right now," Lukawski said, adding that her current situation shows how complicated each family's case can be when trying to either transition to the structured family care program or stay on the original attendant care program.

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Read a related article, "Here are the changes coming to Indiana Medicaid programs for Hoosiers needing at-home care" here

New Jersey - For families seeking respite care for severe autism, NJ just got a bit more generous

By Gene Myers, NorthJersey .com, July 3, 2024

New Jersey will provide $7.3 million to pay for additional hours of emergency caregiving for children with intellectual and developmental disabilities, after Gov. Phil Murphy signed the state budget and a bipartisan bill into law last week.

Murphy on Friday signed S2491/A3412, which raised the number of hours respite care workers can put in from 60 hours in a three-month period to 90. The 50% increase is an effort to address the shortfall of available caregivers within the Children’s System of Care, a state program that provides services for thousands of children with disabilities.

The additional funding in the budget will support the expanded caregiving.

“As many know, even on the best days, being a parent is a full-time job; however, for those who have to step into the role of caregiver for their children, it is especially demanding, even for the strongest and most resilient among us,” Murphy said in a statement. “By increasing the number of respite care service hours funded through the Department of Children and Families, we are supporting caregivers across the Garden State.”

The CSOC program has long been strained with limited resources and high demand, especially when it comes to finding emergency housing and treatment for kids with disabilities whose behavior can be violent. The additional funding is welcome, said Suzanne Buchanan, executive director of advocacy group Autism New Jersey.

“Raising a child with autism could be considered ‘extreme parenting,’" she said. "The caregiving demands are higher in terms of supervision and safety, advocating for and securing services, and adapting their lives to their child’s needs while trying to meet all family members’ needs."

"Respite relieves some of that stress - practically and emotionally," she said. "While finding compassionate and skilled respite providers remains a challenge, hopefully this new funding increases the availability of respite services, especially for the families who need it the most.”

An estimated 13,000 children and teens with disabilities take part in the Children's System of Care in New Jersey. Despite that, the state has just 353 emergency beds set aside for the population with just 187 of those actually available because of staffing shortages.

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Maine - Your loved ones are priceless. Let’s care for them that way.

By Stephanie Hatcher, Bangor Daily News, July 4, 2024

Every person who reads this column will one day need or provide direct care, if they haven’t already. But many people don’t know how hard it is to find and afford care when you need it, and how hard it can be on families when you can’t. 

I’ve provided support to people with intellectual and developmental disabilities for more than 30 years, and now I train others in the profession. I know how deeply committed direct care professionals are to the individuals they support. But I also know how low compensation for such challenging work causes so many of us to burn out and leave the profession. It’s a tragic situation, and it affects all of us. 

For my first eight years as a direct support professional, I worked two full-time jobs to pay my bills. I loved what I was doing, and I still do. But it affected my personal and financial life terribly. It’s the same for the people I’m training now, and it’s not sustainable.

Without good pay, most people are going to leave for a better-paying job. I see people in other fields making far more than I do. One of my sisters is a physical therapist, and she makes $52,000 more than I do. My other sister is a teacher, and she makes $30,000 more. I think that shows how our society undervalues not only the work we do but the people we support. But we are looking after your mother and your grandmother. What do we think they’re worth? 

A recent report from the Maine Center for Economic Policy found in wage data what I’ve seen over my decades of experience. As of May 2022, direct care workers were paid $1.92 less per hour than people in other jobs with similar entry-level training. We’re paid less than cooks, janitors and secretaries, to name just a few. I’m not putting myself above anyone else, but I know that for how challenging this work is, our compensation isn’t going to cut it.

This report found we need another 2,300 direct care workers in Maine. That doesn’t even count the thousands of people who leave the field every year. This gap has huge impacts across our economy, as more people leave the labor force, cut down their hours, or are distracted and burnt out at work because they have the responsibility to care for a loved one.

To attract and keep workers, the state must set a competitive, livable wage. Workers need health and retirement benefits so they can take care of themselves while they care for others. And once people are in the door, they must feel recognized for their work and valued for their experience.

I’m a member of the Direct Care and Support Professional Advisory Council — a group of professionals raising their collective voice to inform policy decisions on issues related to direct care work in Maine — which means I communicate with countless others in the field who tell us the same thing: we need better pay and respect to survive in this field.

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Nebraska - Japan’s Largest IDD Provider Buys Developmental Disability Centers of Nebraska for $50M

By Laura Lovett, Behavioral Health Business News, June 28, 2024

Japan’s largest intellectual and developmental disability provider, LITALICO, is entering the U.S. market by acquiring Developmental Disability Centers of Nebraska (DDCN) for $50 million. 

LITALICO will pay $29.5 million upfront and $20.5 million in an earn-out over three years.

Founded in 2005, LITALICO has 300 facilities across Japan. It offers educational services, vocational services, daily skills and elderly care. It is also in the process of developing a digital platform for disability care. 

Following the acquisition LITALICO plans to expand DDCN’s reach in Nebraska. It will also use this purchase as an opportunity to learn about the IDD market in the U.S., in order to promote future moves in the space, according to a press release.

DDCN was founded in 2015 and has 17 group homes in Nebraska. Following the acquisition, the company’s current CEO will continue to lead the operation. Consulting For Human Services (CFHS) provided advisory and due diligence services on the transaction.

Overall, behavioral health M&A has slowed down since its peak in 2021. And deal volume in the IDD segment typically lags behind more popular segments, such as substance use disorders, mental health and autism services. 

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Texas group home advocates urging lawmakers to raise pay for caregivers - 'This is what we need'

By Kelsey Sanchez, KVUE News, July 3, 2020

Group homes for the disabled and elderly are key in securing services for those with limited income and nowhere to go. 

For many – like Christopher Botello, who has lived in a group home for 50 years – these facilities play a vital part in their residents' lives and independence. 

But according to advocates and group home workers, caregiving is a job that doesn't pay enough and leaves group homes with a revolving door of employees. 

Botello lives within the Mary Lee Foundation, an Austin nonprofit that offers affordable housing within its community, along with a variety of programs for those with Intellectual or Developmental Disabilities (IDD). 

Botello has cerebral palsy, but to him, it's simply a condition he lives with. He has become what some may call the "captain of the ship" at Mary Lee. 

”I train a lot of the people, a lot of the residents here, to ride with buses and staff and learn how to ride buses, so that way, they can go to where they want to go," Botello said.

It's an opportunity he found and was able to establish through the foundation – along with people he considers family. 

"Being here as long as I have makes you feel like you're one of the most important people here, which is good because if you get that feeling in your system, then nothing can put you down," Botello said.

Botello is just one example why some employees haven't left their post. 

Mary Lee offers $13.50 as a starting wage. Overtime is offered, but Interim Director Carroll Rabalais said she is painfully aware that it isn't sustainable. 

"It’s really difficult to ask that of someone and say, 'You get $10.60 an hour.' You know, Dairy Queen is going to offer you $15, or any other any other restaurant down the street is going to offer you more," Rabalais said.

According to an IDD group home provider report, on average, caregivers work about 60 hours per week. Others average out 100 hours or more. 

In 2023, Texas lawmakers slightly increased the base wage for group home workers from $8.11 to $10.60. Earlier this year, a newly formed coalition called Save Texas Caregivers Now sent a letter to Gov. Greg Abbott and legislators, urging them to raise the minimum wage for community-based direct-support professionals from $10.60 to $15 an hour. 

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Florida - New Housing For Adults With Intellectual and Developmental Disabilities Is On The Horizon

By Kim Doleatto, Sarasota Magaziing, July 3, 2024

The Haven, a nonprofit organization that offers programs and services for adults and children with intellectual and developmental disabilities (IDD), is embarking on a new project that will see at least eight residences built down the street from its 32-acre campus. The new Haven Residences at UTC will focus on housing differently abled adults who are often “a forgotten and underserved community,” says Karen Shapiro, who, with her husband Steve, made a major gift to the nonprofit to allow the $1.05 million purchase of the 2.24 acres at 5167 DeSoto Road.

It’s early in the building process, and the final number of units isn’t set yet, but “we’re leaning toward townhome or duplex style, with two, three and four bedroom homes,” says Alison Thomas, The Haven’s chief operating officer. But they’ll all be single-story, for ease of aging in place. A clubhouse in the center will foster inclusion and opportunities for socialization, like daily evening meals. That socialization piece is among the chief concerns for parents of people with IDD.

“I’ve worked in the IDD community for years, and I’ve seen the struggle. It’s a challenge finding similar peers and creating a community,” says Shapiro. “There’s nothing like [Haven Residences at UTC] in the country. I’ve looked and it’s a unique model.” Shapiro moved here two years ago from Connecticut with her husband and their adult son, who is on the autism spectrum.

“It’s hard for people who are round pegs in square holes,” Shapiro adds. “My guess is [the residents] will probably end up forming an atypical extended family. Everyone wants to feel like they’re home.”

The houses will be designed to face towards the center of the community, so whenever you open your front door, “you’ll probably see a friend,” Thomas says. The community will also include a gym, game room and theater.

The project will look a little different from The Haven’s previous residential models, where support is more intense and staff helps with medication administration, groceries, cooking, cleaning, self-care and hygiene, safety skills and more. This one fills a gap by fostering a little more independence, and will have an around-the-clock staff person—“kind of like a house mom,” Thomas explains—at the clubhouse. She adds that the residents will probably be working, and some drive or have social groups they’re part of already. “They mostly make their own meals and will be doing their own grocery shopping,” she says.

The residences will be privately owned and managed by the nonprofit, and the proximity to The Haven’s sprawling original campus at 4405 DeSoto Road isn’t even a quarter a mile away, so residents can pop by to use amenities or simply visit.

The Haven has six group homes. The first, Friendship House, opened in 1983. In 2016, the Marlene House was funded by an executive from John Deere Tractors; and two group homes are opening in October. Together, they house roughly 75 people. The youngest resident is 21 and the oldest is in their mid-80s. There are more than 350 people on the waitlist, and Thomas says at the rate of need, they’ll likely never fulfill the demand. 

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Neanderthal community cared for child with Down syndrome, fossil suggests

By Frances Vinail, The Washington Post, June 27, 2024

The word Neanderthal is sometimes used as a synonym for stupid or brutish, but a new fossil analysis has added weight to the hypothesis that our prehistoric cousins actually had collaborative or even compassionate qualities. Evidence of a Neanderthal child with Down syndrome who survived to the age of 6 suggests the youngster was cared for by the social group, according to a new study.

The piece of bone was found in the Cova Negra cave site in Spain’s Valencia region and analyzed by a research team led by Mercedes Conde-Valverde of the University of Alcalá in Madrid. The results, published Wednesday in the journal Science Advances, concluded that the fragment probably came from the inner ear of a 6-year-old.

The specimen had evidence of abnormalities, and “the only syndrome that is compatible with the entire set of malformations present in [the fossil] is Down syndrome,” the authors wrote.

Down syndrome — which also occurs in great apes and modern humans — would have presented a range of survival challenges for a child, including “poor sucking strength,” which makes breastfeeding difficult; lack of motor coordination and balance; and impaired cognitive development, the study notes. The child probably experienced severe hearing loss and frequent issues with acute, disabling vertigo and imbalance, it added.

“Because of the demanding lifestyle of Neanderthals, including high levels of mobility, it is difficult to think that the mother of the individual would have been able to provide such care alone and also carry out normal daily activities over a prolonged period of time,” the authors wrote.

It was therefore likely that the mother continuously received help from other members of the social group, they added.

“The idea that the individual with Down syndrome (whom we affectionately call Tina) received the care and affection of her group is the simplest explanation for the surprising fact that an individual with Down syndrome survived for at least six years in prehistoric times,” Conde-Valverde said in an email on Thursday.

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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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