August 30, 2024

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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VOR & You:

National Direct Support Professional Appreciation Month

September is a Time for Us All to Recognize the Contributions of Direct Support Professionals


By Mary-Anne Wisell, Executive Director of Monadnock Developmental Services, The Keene Sentinel, August 29, 2024


Celebrated in September, Direct Support Professional (DSP) Appreciation Month is a time to recognize and honor the invaluable contributions of DSPs and home care providers. These dedicated individuals provide home- and community-based services and support to people with disabilities, helping them lead more independent and fulfilling lives.


This month-long celebration is an opportunity to raise awareness about the critical role DSPs and home care providers play in the healthcare system. DSPs and home care providers are essential professionals who deliver hands-on care and support to individuals with developmental disabilities, traumatic brain injuries, chronic illnesses, and the elderly. DSPs and home care providers provide support in various community settings, including at home, at places of employment, and at community activities. The support and services provided assist each person to live as independently as possible and achieve what many of us might take for granted.


In other words, the importance of DSPs cannot be overstated. These committed workers ensure that individuals receive support tailored to their unique needs while promoting autonomy and enhancing their quality of life. To be effective, DSPs and home care providers require a combination of technical skills and compassionate qualities. Empathy, patience, and strong communication skills are also vital. DSPs and home care providers are responsible for supporting people with disabilities to be successful and to be as independent as possible in every aspect of their lives.


DSP Appreciation Month is a time for all of us to express our gratitude as we acknowledge the significant impact DSPs and home care providers have on the lives of those they support, their families, and the broader community.


Continued

Alison Barkoff Announces Departure From HHS

Press release from the Administration for Community Living, August 29, 2024


This morning, the U.S. Department of Health and Human Services (HHS) shared the news that Alison Barkoff will leave the Administration for Community Living (ACL) in early October. Alison will join George Washington University Milken Institute School of Public Health as the Harold and Jane Hirsh Associate Professor of Health Law and Policy and director of the Hirsh Health Law and Policy Program.


“It has been the honor of a lifetime to lead the Administration for Community Living and the incredible team that is working to make it possible for all people, regardless of age or disability, to live self-determined lives,” said Alison Barkoff. “Thanks to their dedication and hard work, the support of the Biden-Harris Administration and HHS leadership, and our partnerships across federal government and the aging and disability networks, we have taken action and made substantial progress on the issues that are most important to people with disabilities and older adults. ACL’s mission is my own life’s mission, and I am looking forward to building upon the work we have done together in my new role.”


Read the full press release here


Note: Ms. Barkoff has been a tireless advocate for people in HCBS settings.


However, many VOR families have expressed frustration at not having a voice for those whose needs are not met in "community living" and feel that the ACL does not represent all of those with I/DD and autism, and that it has long opposed choice with a full array of residential and employment options.


The exclusion of people with severe/profound I/DD and autism from representation under the government that purports to provide for them and that government's determination to close Intermediate Care Facilities and 14(c) programs has resulted in disastrous consequences for many of these individuals and their families.

Upcoming Meetings of

The President's Committee for People with Intellectual Disabilities (PCPID)


September 26, 2024 9am - 4 pm Eastern

September 27, 2024 9 am - 3 pm Eastern


The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report. The meetings will be held in-person in Washington, D.C. and on Zoom. All PCPID meetings, in any format, are open to the public. Members of the public can join in person or virtually. This meeting will be conducted in presentation and discussion format. The PCPID is overseen by members of the Administration for Community Living (ACL), and all meetings are facilitated by the ACL.


This year's report will focus on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities who receive services through the HCBS channel of Medicaid.


Once again, people with I/DD or severe autism who require ICF services or choose to work in 14(c) programs will not be included in the findings and recommendations of this committee.


We urge our members to sign up for the virtual meetings and make your presence known. Remember:


"If you don't have a seat at the table, you are probably on the menu."


Please click here to register for the Zoom meetings and to submit comments to the PCPID

Sheltered Workshops:

NOTE: The Washington Post today came out with a set of three articles strongly biased against Sheltered Workshops operating under Section14(c) of the Fair Labor Standards Act. The authors evince little understanding of the day-in-day-out year-in-year-out struggles facing people with severe IDD and autism, the need for meaningful daily activities, or the realities of the fact that no matter how hard the private sector tries to find ways to accommodate people with intellectual disabilities, no company (the Washington Post included) is able to provide a job for persons with low productivity levels who require a safe, stress-free environment and supervision throughout the workday by someone trained as a direct support caregiver.


Here are the articles. Read them if you will.


Some disabled workers in the U.S. make pennies per hour. It’s legal.

by Amanda Morris, Caitlin Gilbert, and Jacqueline Alemany, Washington Post, August 30, 2024

Read the article here


Why some U.S. disabled workers are making less than a dollar an hour

by Caitlin Gilbert, Amanda Morris, and Jacqueline Alemany, Washington Post, August 30, 2024

Read the article here


Fight over pay for people with disabilities may erupt next month

by Jacqueline Alemany, Caitlin Gilbert, and Amanda Morris, Washington Post, August 30, 2024

Read the article here

National News:

People with Disabilities Face Extra Hurdles amid National Housing Shortage

By Judy Woodruff and Layla Quran, PBS Newshour, August 27, 2024


Millions of Americans are priced out of homes and apartments. For people with disabilities, finding an accessible place they can afford can be even more challenging. 


Judy Woodruff:

Thirty-four-year-old Jensen Caraballo considered himself lucky when he moved into this apartment more than a decade ago.

After searching for two years, he found a one-bedroom in Rochester, New York, where he lives with 24/7 care from in-home attendants.


Jensen Caraballo, New York Resident:

I will be honest. I settled for less. I needed a two-bedroom apartment that was affordable and accessible, and this place was neither. But it was the only way that I could live independently. So I settled for less.


Judy Woodruff:

Caraballo has spinal muscular atrophy, a neuromuscular disability, and has used a wheelchair since he was a child. At 15 years old, he moved into a nursing home.


Jensen Caraballo:

I remember feeling neglected. Living in a nursing home as a teenager was very challenging and, honestly, traumatic. I felt stripped of my autonomy.


Judy Woodruff:

But his apartment is far from ideal. He says he moved in because there were no other options in his budget. Caraballo receives Supplemental Security Income, or SSI, a monthly benefit program many people with disabilities rely on. He uses the SSI payment and a housing voucher to help cover his rent, but says it isn't enough to pay for the apartment and all of his other monthly expenses.


Jensen Caraballo:

Sometimes, there's a bill that doesn't get paid. Sometimes, I'm in the negative in my bank account. I ask for family and friends to chip in, if they are able to. That takes a lot out of me to have to ask for help.

This is my story, but it's not just my story. It's an issue that has impacted the disability community for a very long time.


Judy Woodruff:

More than four million people with disabilities who receive SSI can't afford rent in any U.S. housing market. The maximum SSI payment for one person is about $950 a month.


It's the sole source of income for many who receive it, and it's used to pay for everything from housing to food and transportation. Even in America's cheapest rental market, Dallas County, Missouri, rent for a one-bedroom would require 64 percent of a monthly SSI payment.


Continued

Children with Developmental Disabilities Less Likely to Get Ideal Hearing Assessment

The Hearing Review, August 26, 2024


Children with developmental disabilities—1 in 6 children in the United States—are less likely to access a gold-standard hearing assessment in the first three months of hearing care, a recent paper in the Journal of Autism and Developmental Disorders reported. 


Many developmental disabilities, such as cerebral palsy, Down syndrome, autism, and intellectual disability co-occur with reduced hearing. This happens because there are overlapping causes and risk factors for the two conditions such as genetics, exposure to some viruses during pregnancy, prematurity, or requiring care in the NICU. It is important to have a timely diagnosis of reduced hearing and access to appropriate interventions to maximize developmental outcomes, reports Vanderbilt University Medical Center. 


However, children with developmental disabilities can experience a variety of barriers in accessing high-quality healthcare. The recent study quantifies the relative risk of children with developmental disabilities not obtaining a gold-standard hearing assessment during their first three months of hearing care.  


Using electronic health records from the Audiological and Genetic Database, hearing assessments were reviewed from 131,783 children (0-18 years) at three hospitals in the United States from 2008 to 2018. The study found that children with developmental disabilities were nearly four times more likely not to access a gold-standard hearing assessment than children in the comparison group.  



“This work is important for ensuring that all children, not just those who are typically developing, are afforded high-quality hearing care,” says Anne Marie Tharpe, PhD, chair of the Department of Hearing and Speech Sciences at Vanderbilt School of Medicine. “Approximately 30%-40% of children with permanent hearing loss have additional disabilities. Thus, having developmentally appropriate procedures to test their hearing is crucial to their care and outcomes.”  


Read the full article here

State News:

New Jersey Human Services Moves to Enhance Direct Support Professional Services to Serve Individuals with Intellectual/Developmental Disabilities and Co-Occurring Mental Health Needs

Press Release, via Insider NJ, August 27, 2024


New Jersey Human Services is moving to enhance direct support professional services that serve individuals with intellectual and/or developmental disabilities and co-occurring mental health needs.

The Department has issued a request for proposals for provider agencies interested in having their direct support professionals (DSPs) obtain the National Association of the Dually Diagnosed (NADD) Competency-Based IDD/MI Dual Diagnosis Direct Support Professional Certification.


DSPs work with individuals with intellectual and/or developmental disabilities to help those individuals achieve their personal goals. The Division of Developmental Disabilities (DDD) oversees the coordination and delivery of publicly funded home and community-based services in New Jersey for about 26,500 adults with intellectual and/or developmental disabilities. Per 2023 DDD statistics, at least 3,500 of these individuals have a co-occurring psychiatric diagnosis.


Under the plan, up to 3,000 DSPs will receive the NADD DSP Certification. Providers must have at least 10 percent of their eligible DSPs seek the professional certification, but can enroll all if they choose. Providers are encouraged to identify and enroll DSPs at programs or sites where they are supporting at least one individual with an intellectual and/or developmental disability and co-occurring mental health needs. The DDD intends to collect data throughout the course of this project to evaluate the program’s success.


“This certification will help validate and provide assurance to individuals, families, and employers that a DSP has met the standards for delivering services to individuals with developmental and/or intellectual disabilities and co-occurring mental health needs,” Deputy Commissioner for Aging and Disability Services Kaylee McGuire said. “It adds another level of professionalization to the DSP career path, while enhancing the quality, efficacy, and consistency of service delivery for individuals. This is all about investing in DSPs and the quality of care for the individuals they serve.”


Under the $3 million plan, the state will allocate $1,000 per participating employee to successful bidders. Successful bidders may not use funds from this grant for any purpose other than NADD remittance and compensation of participating employees for the training and certification completion. Employee certification is the expected outcome.


Read the full article here

North Carolina - DHHS launches Strategic Housing Plan to Expand Support for People with Disabilities

Press release, via the Richmond Observer, August 23, 2024


The North Carolina Department of Health and Human Services recently launched the North Carolina Strategic Housing Plan to help maintain, increase and better utilize affordable supportive housing for people with disabilities across the state. This plan addresses housing needs for individuals with disabilities, including those who are currently receiving or eligible for NCDHHS-funded services as well as those who are experiencing homelessness, currently residing in congregate settings or at risk of entry into these settings.


Access to stable housing and other social determinants of health play an important role in a person’s overall well-being. Safe, quality, affordable housing and the supports necessary to maintain it are essential to whole-person health. This plan serves as a strategic guide over the next five years to focus policy efforts and decision-making toward creating and maximizing community-based housing options and supports for people with disabilities. These efforts build upon NCDHHS’ Olmstead Plan (now available in Spanish) and Transitions to Community Living and Money Follows the Person initiatives.


“Improving equitable access to housing opportunities empowers people with disabilities to choose their own path for their life,” said NCDHHS Deputy Secretary for Health Equity and Chief Health Equity Officer Debra Farrington. “We appreciate the partners across North Carolina who contributed their expertise and perspectives to creating this plan, and we look forward to continuing to work together to improve choice and inclusion in our communities.”


Strategies include supporting the creation of 3,400 permanent supportive housing opportunities through the construction of new units and rehabilitation of existing properties to provide new access to existing units.


Read the full article here


Read a related article here

Kentucky - Officials Respond to Critical DOJ Mental Health Report

By David Mattingly, WAVE 3 News, August 28, 2024


A year-long Justice Department investigation concluded Kentucky officials need to do a better job of keeping the mentally ill out of hospitals and out of jail.


A report released Tuesday described a lack of community mental health services that results in thousands of people being hospitalized unnecessarily.


On Wednesday, Gov. Andy Beshear expressed surprise over the release of the report.


He did not comment on its findings.


“We just want to make sure that we are on the right track, that we are serving everyone, that we are putting mental health first,” Beshear said. “But that the report is also accurate and within the law.”

The Department of Justice said the lack of community mental health support could be a violation of the Americans With Disabilities Act.


Beshear questioned that conclusion, but said he was looking forward to conversations with the DOJ.

“We hadn’t heard from them in 11 months until yesterday and so I’m hoping that we can start having those,” he said. “I believe that there are some aspects of the report that can provide a very good guidepost and will hopefully spur the General Assembly.”


The DOJ report comes at a time when mental health professionals describe a state system in crisis, where there are not enough providers to meet demand and widespread burnout.


Focusing on Louisville, the DOJ report said, “…because of the lack of community-based services, law enforcement officers are routine responders to mental health crises in Louisville. Many of these encounters could have been avoided with community-based services, and those community services could have provided an alternative to incarceration.”


Continued

Virginia Man 'Disheartened' It Took the State 8 Months to Investigate 'Horrifying' Nursing Home Conditions

By Tyler Layne, WTVR News, August 27, 2024


Federal data shows Virginia is falling behind almost every other state in the country when it comes to providing oversight of nursing home facilities.


Steve Lambert reflected on the better times, showing CBS 6 photos of his brother Winfred smiling and surrounded by family.


“We were having a gathering here, one of his more happier days," Lambert said. "He loved laughing."

That memory is a stark difference from the one Lambert has from December 16, 2023, when he visited his brother at Westport Rehabilitation and Nursing Center in Henrico County.


Winfred had just been admitted to the nursing home the day before in declining health.


“And immediately, we were horrified," Lambert said, showing CBS 6 pictures of the conditions in the room. “He was lying in a prone position. As you can see, the hospital gown is barely on him. He's on one shoulder. He's in a Depend.”

Winfred was found face down in his bed with his gown not covering him and his adult diaper exposed.


Lambert said his brother could not move himself due to muscle loss and could not speak up for himself due to an intellectual disability.


“I cried. My wife and I cried," Lambert said. "We sat him up on the bed, and he started crying.”


Lambert was also concerned about particles he found in the vents and large flakes of what appeared to be somebody else's skin. "We looked around and there were large chunks of dead skin on the windowsill, on the floor, and all over his bed," Lambert said.


Lambert understands facilities like these must adhere to government standards and federal regulations on the care and safety of patients because he was an associate director with the Virginia Department of Social Services licensing division.


In that role, Lambert was responsible for overseeing adult services and enforcement and was involved in the process of inspecting facilities for alleged violations of state standards.


“And based on my professional experience, I found the condition that my brother was in, as well as the gentleman that was in the room with him, totally unacceptable," Lambert said.


So, the very next day on December 17, 2023, Lambert submitted a complaint to the Virginia Department of Health (VDH), the agency responsible for inspecting nursing homes as part of the Centers for Medicare and Medicaid Services (CMS) survey and certification program.


Lambert submitted another complaint on December 23, alleging Winfred, who had a compromised respiratory system, was placed in a unit for COVID-19 patients and then contracted the virus. CBS 6 contacted Westport multiple times requesting a response to the allegations in Lambert's complaints and has not yet heard back.


Continued

Delaware Incarcerated Individuals with Special Needs Involved in Education Lawsuit

By Rachel Suga, WDEL News, August 27, 2024


On occasion, the Department of Justice  takes special interest in lawsuits, filing a Statement of Interest of the United States of America, to aid in analyzing the facts of cases while enforcing citizens' rights.


The recent lawsuit brought forward by the Community Legal Aid Society, Inc. and public interest law firm Terris, Pravlik & Millian, LLP against the Adult and Prison Education Resources Workgroup states that there have been alleged ongoing illegal failures to ensure that students with disabilities receive an appropriate public education while they are incarcerated. More information about the lawsuit can be found here.


Those behind bars with special needs must also be provided with adequate education, just the average inmate would.


The DOJ says that students with disabilities in adult correctional facilities do not forfeit their right to a free, appropriate, public education under the Individuals with Disabilities Education Act.

 

The Department of Justice also underscored that “[t]hirty to eighty percent of children and young adults in these facilities have disabilities.”


Continued

Nevada - Kids’ Hospice offers Hope-Of-Life Care in Las Vegas Valley Homes

By Jeff Burbank, Las Vegas Review-Journal, August 5, 2024


Heidi Tunea carried her 5-year-old son, Danyel Velez, down the stairs to the living room of her eastern Las Vegas home and placed him on a couch.


The boy stared forward, lying on his back, his body shaking from an epileptic seizure related to a rare genetic disorder known as GRIN-2B. It brings intellectual disabilities, cerebral palsy and other neurological problems that make it hard to digest food, so he has to be fed through a tube leading to his intestines.


Tunea recalled a scary moment for the family when he suffered from liver failure and a form of pneumonia.

“We almost lost him in 2020,” she said. “Luckily, he’s my little hero. He came out of it.”


“But that’s gradually what this disease does,” said Tunea, who was next to an IV stand holding a bag of the white liquid that provides nourishment for Danyel. “So it’s like the seizures, the gastrointestinal, the heart, everything. So it kind of just sets off this whole, like, ripple effect.”


Danyel, who cannot walk or talk, is one of the complex health cases handled by 1Care Hospice, a hospice for children that oversees at-home care for about 190 kids in the Las Vegas Valley when staying in a hospital room is not feasible, much less affordable. His brother, 8-year-old Jakob Velez, also is in the 1Care program.


Known for palliative care for kids and young adults ending at age 21, the program is called a “hospice” in the newer sense of the word, said Courtney Kaplan, director of community affairs for 1Care. The program is 100 percent covered by government-funded Medicaid.


The U.S. government’s National Institute on Aging states on its website that “hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person’s illness are stopped.”


“Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course,” the institute states.


But in 1Care’s juvenile hospice, palliative care is provided for children with severe conditions but who don’t necessarily have terminal illnesses and can receive treatment while living with their parents and siblings, Kaplan said.


Continued

New York - Patients, Health Companies take Hochul to Federal Court to Try to Thwart Home Care Overhaul

By Amanda D'Ambrosio, Crain's New York Business, August 23, 2024


Home care companies and patients are taking the state to federal court over its planned consolidation of a popular Medicaid-funded home care program, adding to a growing pile of legal challenges to block the new policy.


Patients and home care agencies who participate in the Consumer Directed Personal Assistance Program, or CDPAP, filed a lawsuit in a federal court in Brooklyn Thursday to stop the state from shuttering all existing businesses that administer the program. 


The state is in the middle of reducing the number of middleman companies that manage payroll and other administrative tasks for home health aides — known as fiscal intermediaries — from the up to 700 currently in operation to just one. The consolidation, mandated under a new state law, is an attempt by Gov. Kathy Hochul to cut sky-high Medicaid costs after the home care program racked up a $9 billion tab last year.


But individuals and businesses who participate in the program, which was designed to allow consumers to hire and train their own caregivers, say that the changes violate federal statute. The government requires states to allow Medicaid enrollees free choice to select their own physicians, hospitals and home care agencies — a statute that New York’s decision to hand over the entire home care program to a single company flouts, the lawsuit alleges.



The lawsuit also argues that state officials didn’t get necessary approval from the federal government to go through with the overhaul. Washington state, which has selected a single fiscal intermediary, got a waiver from the U.S. Department of Health and Human Services stating that it could eliminate choice under its consumer-directed program, the lawsuit says.


The U.S. put laws into place to ensure that Medicaid enrollees have choice over their health care — not be forced to accept a single provider that the state offers them, said Derek Adams, an attorney at the Potomac Law Group who represents the plaintiffs in the new case.


Continued

VOR Bill Watch:

[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.



Please share this offer with your loved one's

Direct Support Professionals!


VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!


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

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


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


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


info@vor.net


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

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