December 6, 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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VOR Action Alert:

Support Sheltered Workshops and

14(c) Programs!

The Department of Labor's Wage & Hour Division has issued a proposed role in the Federal Register that would phase out the use of Commensurate Wages under Section 14(c) of the Fair Labor Standards Act.


There is a comment period from now until January 17th, and we ask our members to send comments to the Wage & Hour Division to express your opposition to this rule and your support of 14(c) provisions for people with intellectual disabilities and autism.


For more information about this matter, see the articles below. Then please go to the Wage & Hour's Comments Page and submit a short but impassioned comment about what these programs mean to you, your loved ones, families you know, or the ID/A community as a whole.


Shortly after the Department of Labor announced their intention to phase out 14(c), President Biden announced that he, too, would like to eliminate this program.


There appears to be no regard for the thousands of individuals with ID/A who support these programs. Indeed, over 90% of the people who work in 14(c) programs have intellectual disabilities, and they are practically unanimous in their support of these opportunities.


The articles below should give you all the information you need to submit comments to the DOL Wage & Hour Division's comments page. We ask that you read the articles, then submit your comments.

It only takes about two minutes of your time to participate. We ask that all of our friends and families take part!


To read the announcement on the proposed rule from the Federal Register, please click here.

Feds Seek To End Subminimum Wage Program For Those With Disabilities

By Michelle Diament, Disability Scoop, December 4, 2024


The U.S. Department of Labor is proposing a sweeping new rule that would put an end to the decades-old practice of allowing employers to pay workers with disabilities less than minimum wage.

The agency issued a proposed rule this week to phase out what are known as 14(c) certificates. Under a federal law dating back to 1938, employers can obtain the special certificates from the government to pay those with disabilities less than the federal minimum of $7.25 per hour.


If the rule is finalized, the Labor Department would immediately cease issuing new certificates. At that point, existing certificate holders would have three years to stop paying workers with disabilities so-called subminimum wage.


“In the decades since Section 14(c) was included in the Fair Labor Standards Act, there have been significant legal and policy developments that have dramatically expanded employment opportunities and rights for individuals with disabilities,” said Acting Secretary of Labor Julie Su. “With this proposal, the department expects that many workers currently paid subminimum wages under Section 14(c) will move into jobs that pay full wages, which will improve their economic well-being and strengthen inclusion for people with disabilities in the workforce.”


In the proposed rule, the Labor Department notes that the Fair Labor Standards Act authorizes the issuance of 14(c) certificates “but only where such certificates are necessary to prevent the curtailment of opportunities for employment.”


“Employment opportunities for individuals with disabilities have vastly expanded in recent decades, in part due to significant legal and policy developments,” according to the proposed rule. “Based on that evidence, the department has tentatively concluded that subminimum wages are no longer necessary to prevent the curtailment of employment opportunities for individuals with disabilities and thus proposes to phase out the issuance of section 14(c) certificates.”


Despite the momentum away from subminimum wage, Hugo Dwyer, executive director of VOR, which advocates for individuals with intellectual disabilities and their families, says that there remains a specific cohort of people with developmental disabilities who benefit from 14(c), not because of the paycheck, but because it offers an opportunity for meaningful daily activities with peers in a safe environment.


“It’s difficult to place an individual who has frequent epileptic episodes or who has the potential for self-injurious or aggressive behaviors when they are upset into most work environments. It’s hard to ask co-workers to learn how to toilet folks with (intellectual disabilities and autism) or to change an adult diaper,” he said. “Sheltered workshops are able to accommodate these individuals.”


The proposed rule will be up for public comment through Jan. 17. While Labor Department officials said they will be reviewing comments as they come in, it will likely be left to the incoming Trump administration to determine whether or not to finalize the rule.


Even before the proposal was released this week, some Republican lawmakers had raised concerns about the legality of any move to end 14(c) that sidestepped Congress.


With that in mind, advocates with the Autistic Self Advocacy Network are urging Congress to pass a bill known as the Transformation to Competitive Integrated Employment Act before the end of the year, which would phase out 14(c) and provide funding and technical assistance to help transition workers with disabilities from subminimum wage work to competitive, integrated employment.


Read the full article here.

Biden looks to stop paying workers with disabilities less than minimum wage

By Simone Del Rosario, Straight Arrow News, December 4, 2024


Here is a short article accompanied by an excellent 2-minute video from Straight Arrow News that does a good job of summing up the facts and figures involved in this matter.

Watch the video here


The video is also available on YouTube, here


(Many of the comments under the video are from people opposing 14(c), so please add a respectful comment of your own supporting 14(c) opportunities.)

*** Download a copy of the Wage and Hour Division's Rule from the VOR Website ***


The current version of the Wage & Hour Division's rule appears in the Federal Register in an impossible-to-read three column small print 46 page document. The original version was far easier to read, but clocked in at 137 pages. That version is available on our website.


Granted, this is a long document, but we encourage our members to read the Executive Summary, which fails to mention the fact that 90% of the people in these programs have I/DD and autism, and that these employment opportunities are widely supported by the people who participate in them.


Supporting 14(c) programs does not mean we do not support competitive integrated employment. We support both, and we allow those who wish to work to make their own choices.


Sheltered workshops are not for everyone, but they are a fantastic opportunity for those who choose to work there. As Joe Biden has said repeatedly (but appears to have forgotten), “A job is about a lot more than a paycheck. It’s about your dignity. It’s about respect. It’s about your place in your community.”


To download the document from our website, please click here


https://www.vor.net/legislative-voice/action-alerts/item/department-of-labor-wage-hour-div-rule-to-end-14-c

Biden moves to end subminimum wages for people with disabilities

By Jacqueline Alemany, The Washington Post, December 3, 2024


The Biden administration is moving to phase out a Depression-era program that allows some employers to pay disabled workers far less than minimum wage, fulfilling one of President Joe Biden’s campaign promises and triggering what will probably become a fierce legal and political battle.


The decision is the culmination of the Labor Department’s year-long review of the program, which opponents have criticized as a form of discrimination and supporters have described as providing disabled people with hard-to-find opportunities for steady wages and meaningful work. The agency released a 137-page proposed rule Tuesday that would immediately halt the issuance of certificates that allow employers to pay less than minimum wage and institute a three-year phaseout period for employers that already hold those certificates.


Before it can take effect, the rule will be subject to a public comment period, possible legal challenges and the scrutiny of the incoming Trump administration. The public comment period is expected to conclude on Jan. 17, 2025, just days before Donald Trump takes office. His administration will have to evaluate and respond to those comments, then issue a final rule — or withdraw the rule entirely.


Congress could also reverse the rule through the Congressional Review Act, a law that empowers it to halt implementation of final rules issued by federal agencies. And if private companies that contract with 14(c) facilities move to challenge the rule in court, agencies have a weakened hand, because the Supreme Court overruled the principle known as Chevron deference, which for decades held that courts should defer to agencies’ expert interpretation of statutes.


Defenders of the law — including the family members of disabled workers — will also have the opportunity to weigh in on the proposal during the public comment period, and they can potentially influence or shape the final rule. Kit Brewer, vice president of the Coalition to Preserve Employment Choice and executive director of a sheltered workshop in Missouri, previously told The Post that he planned to lobby for a “carve-out” for people who have struggled to make the transition to competitive integrated employment.


“Something needs to be available that is the desired choice of these men and women,” said Brewer, who declined to say whether the coalition will challenge the Labor Department’s proposal in court without seeing the exact language. “That’s why you see the parent and family and individual’s concern. You see the feeling of desperation and uncertainty. ... We certainly don’t want to see that group left out of services altogether.”


Rick Wilson, a single-parent caregiver for his 40-year-old son who has Down syndrome, told The Post after the announcement Tuesday that he is already working with other parent advocates who hope to preserve the program and that he and his allies plan to submit comments opposing the rule. Wilson called the proposal a “usurpation of Congress” and predicted lawsuits intended to stop the rule from going into effect.


“It’s just not true that all of these people can exist in a community job,” he said. “Our fear is that they don’t get a job and get moved into day care.”


Read the full artiicle here

Ready?

Now that you have read some of this information, please submit your comments to the

Wage & Hour Division's Comments Page


Click here to post your comment

In Other News:

On Capitol Hill, Key Disability Champions Set To Depart

By Michelle Diament, Disability Scoop, December 2, 2024


Some of the most prominent voices in Congress for home and community-based services, Supplemental Security Income reform, competitive integrated employment and other disability issues are heading for the exits.


Multiple federal lawmakers who have prioritized issues important to this population will leave at the end of the year, some by choice and others who were voted out.


Notably, Sens. Bob Casey, D-Pa., and Sherrod Brown, D-Ohio, both lost their bids for reelection last month.


Casey, a three-term senator, has long championed disability issues. He was one of the leaders on the ABLE Act, a 2014 law that established tax-advantaged savings accounts for people with disabilities, and has spearheaded legislation to address guardianships, improve Medicaid home and community-based services and phase out subminimum wage, among other issues.


In addition, Casey used his position as the chair of the Senate Aging Committee to elevate disability issues, advocates said.


“We see the loss of Senator Casey as pretty huge,” said Kim Musheno, vice president of public policy at the Autism Society of America. “While we have a number or disability champions in the Senate, Casey carved out a big portion of his portfolio for disability issues with dedicated staff.”


Brown, meanwhile, has been pushing to raise SSI asset limits for the first time in decades.


On the House side, Rep. Cathy McMorris Rodgers, who has a son with Down syndrome, opted not to seek reelection this year. The 10-term Republican from Washington state yielded significant influence during her time as chair of the House Republican Conference and more recently as chair of the House Energy and Commerce Committee. She was a leader on the ABLE Act and has pushed for funding for Down syndrome research. McMorris Rodgers has also been a major proponent of the Transformation to Competitive Integrated Employment Act, which would phase out subminimum wage and expand competitive integrated employment for people with disabilities.


Now, advocates say they are looking to forge relationships with incoming lawmakers and develop new allies.


Continued


Please note that this article failed to mention Representative Marc Molinaro (R-NY), who introduced several bills that would protect the entire disability community. Molinaro's bill "Think Differently About Emergencies Act" which would order FEMA and emergency first-responders to know in advance where people with disabilities live to protect them in case of disasters, This bil was signed into law by President Biden earlier this week.

Commentary: How will the Trump administration advance disability rights?

By Joseph Pancari, The Times Union, December 3, 2024


As the nation prepares for a demonstrable shift in leadership, people with disabilities are asking: What about us?


One in four Americans is living with a disability. But we have heard little about the ways the new administration would advance disability rights and access during Donald Trump’s second time behind the Resolute Desk.


To do so would be relatively straightforward, as there is much to build on already: America is a leader in disability services and solutions, and we recently marked the 34th anniversary of the landmark passage of the Americans with Disability Act. Under the law, every public space must have accommodations for wheelchairs, and people with disabilities are afforded equal status and provided specific protections around hiring, housing and transportation.


Another sign of progress occurred in March, when the Senate unanimously passed legislation that qualifies the profession charged with providing daily assistance, direct support professionals, as its own standard occupational classification, making this contingent unique amongst other health care workers. Now it is up to the U.S. House of Representatives to pass the parallel Direct Support Professionals Act (H.R. 2941).


The wish of the provider community for the next four years is a broadened panorama of services and supports. The shared goal is to provide as many opportunities as possible for those with disabilities to achieve fulfilling lives. At Constructive Partnerships Unlimited, we see daily the challenges experienced by people with intellectual and developmental disabilities and the heroic work of our dedicated team who empower their success. We also know the frustrations when vacancies increase, both in terms of open beds and available positions that go unfilled.


Some initial steps the new administration could take may include streamlining the confusing array of agencies and barriers that can make it difficult to access quality services both federally and locally. Another priority would be for a national “Traveling with Dignity” Act, like the one passed in New York State, which mandates height-adjustable adult changing tables in government buildings, at large public venues, and in rest stops accessed by the interstate highway system. The federal government should also subsidize more research into medical interventions and technological tools that improve the lives of people with intellectual and developmental disabilities. Finally, adding funds to help agencies meet state and national climate goals will modernize the industry and make it a world leader in sustainable disability services.


Further, America must more robustly commit to its aging population now and in the immediate future, especially as it relates to persons with disabilities. The top concern for anyone with a child or adult child with a disability is, “What will happen to them when I am gone?” Two strategies worth serious consideration are new investments in flexible residential supports for people languishing in nursing homes or emergency rooms, and development of residential solutions that support both people with disabilities and their aging caregivers.


This is all to say that America has work to do. To turn away from the intellectual and developmental disabilities field is to ignore the promise in every individual and to undercut the inclusive values inherent in our founding documents and vision for a better future. I urge President-elect Trump and all lawmakers to uphold this idea and address this vital societal need.


Read the opinion here

Long a ‘Crown Jewel’ of Government, N.I.H. Is Now a Target

By Teddy Rosenbluth and Emily Anthes, The New York Times, December 1, 2024


The National Institutes of Health, the world’s leading public funder of biomedical research, has an enviable track record. Research supported by the agency has led to more than 100 Nobel Prizes and has supported more than 99 percent of the drugs approved by federal regulators from 2010 to 2019.

No surprise, then, that the agency has been called “the crown jewel of the federal government.” But come January, when President-elect Donald J. Trump and congressional Republicans take charge, the N.I.H. may face a reckoning.


Robert F. Kennedy, Jr., the new administration’s selection for secretary of the Department of Health and Human Services, which oversees the N.I.H., routinely castigates federal scientists and is a staunch critic of conventional pharmaceuticals and vaccines, with a long record of spreading falsehoods about vaccine safety.


He has said that he would steer the agency into a yearslong “break” from infectious disease research, focusing instead on chronic diseases.


And Mr. Trump’s pick for N.I.H. director, Dr. Jay Bhattacharya, the Stanford professor who gained notoriety during the pandemic for supporting the widely maligned idea that the coronavirus should be left to spread freely among healthy Americans, has called for a dramatic restructuring of the N.I.H., which he has said is led by small-minded bureaucrats.


While even the agency’s defenders acknowledge that the N.I.H. needs modernization, the radical reforms now proposed would be difficult, if not impossible, without years of legal wrangling and significant support from Congress, experts say.


But many fear that the next administration will nonetheless weaken the N.I.H., divesting from critical research with long-lasting consequences for science, innovation and public health.


A spokesman for the Trump transition team said Mr. Trump’s cabinet picks will “slash wasteful spending in our broken health care system that cripples our nation’s budget” and “return health care to the Gold Standard.”


Dr. Bhattacharya and Mr. Kennedy did not respond to requests for comment.


The N.I.H. comprises 27 institutes, each focused on a different set of diseases or health topics, such as cancer, aging or substance abuse. The agency has roughly 6,000 of its own scientists, but more than 80 percent of its $47 billion budget goes to outside researchers, who apply for grant money in a highly competitive process.


Politicians have periodically succeeded in curtailing certain types of studies they didn’t like. Republican administrations have sharply restricted embryonic stem cell and fetal tissue research, moves that were reversed by their Democratic successors.


But historically, the agency was broadly popular on both sides of the political aisle. During his first term, Mr. Trump proposed slashing the N.I.H.’s annual budget by about 18 percent; Congress approved funding increases instead.


Continued

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Audit finds Louisiana improved its response time to abuse complaints

By Jacob Mathews, The Center Square, December 2, 2024


The Louisiana Department of Health improved its response time for allegations of abuse and neglect in home and community based services for individuals with developmental disabilities. 


The department's improvement is according to an audit of their internal controls from the Louisiana Legislative Auditors for fiscal years 2019 through 2023.


The audit says the department conducted 1,979 surveys that addressed 5,420 separate allegations of noncompliance, with 2,194 related to abuse or neglect. Of 848 complaint survey's during 2022 and 2023, 843, or 99.4%, were completed in accordance with required timelines.


That is a significant improvement from the three previous years according to the audit. The department substantiated 650 of the abuse or neglect allegations in the home and community based services.  


When the department substantiates an allegation, it is of noncompliance with regulations, and not necessarily an indication of abuse or neglect by law. Other agencies are responsible for that.


However, not complying with regulation could mean a provider fails to ensure a client remained safe from abuse or a provider failed to follow written policy or procedures related to neglect.


An audit of intermediate care facilities, which The Center Square reported on back in July, found similar improvements in timeliness of surveys.


Care facilities are more permanent, supervised versions whereas home and community based services provide more independence and bring services to the individuals with disabilities. 


Like with that audit, this one showed not everything was positive. 


The reason there were so many instances of abuse and neglect to begin with could be because the department failed to conduct 140 licensure surveys in a timely manner of the total 546 providers. In addition, 69 providers had no licensure surveys at all during this five-year period.


These surveys ensure the license's for these services are up to regulation standards, meaning some services might not of been allowed to operate had these survey's been done.


Continued

Advocacy group aims to pass new indoor camera bill for long-term care residents in Kentucky

By Isaiah Calalang, Fox 56 News, November 29, 2024


An advocacy group in Kentucky is working to pass camera legislation to ensure better safety measures for long-term care residents in Kentucky.


The group, Advocates for Safety in Community Living, says they hope the Kentucky General Assembly will work on a bill to protect those in the long-term care population.


It is said the bill was first introduced by State Senator Reginald Thomas in 2023.


The bill is said to give guardians of people with disabilities the right to waive privacy and place cameras in private residences of Medicaid-funded community homes.


The group says far too many residents suffer from psychological, physical and other types of abuse and neglect and that group home beneficiaries are at serious risk of harm.


Read the article here

Exploring a hidden genetic cause of intellectual disability

by University of the Sunshine Coast, via Medical Xpress, December 5, 2024


A global research collaboration has revealed a hidden cause of a rare intellectual disorder associated with severe language delay, epileptic seizures, motor impairment and brain abnormalities.


The study, led by the University of the Sunshine Coast, Radboud University Nijmegen, the Netherlands, Neuroscience Research Australia and the University of Zürich, was published today (Dec. 5) in Genetics in Medicine.


It details a new form of childhood genetic intellectual disability resulting from recessive variants in the gene GTF3C3.


UniSC Professor in Pathophysiology Robert Harvey said the findings may lead to a faster diagnosis and support for children with neurodevelopmental disorders and their families.


"It is important for families to understand the genetic basis of these disorders, due to the frequency and risk of recurrence of autosomal recessive forms of intellectual disability.


"Importantly, we revealed a hidden mechanism of the disease. This could have implications for other neurodevelopmental disorders, such as autism spectrum disorder, cerebral palsy, dyslexia, seizures and attention deficit hyperactivity disorder," Professor Harvey said.


The team of researchers investigated data from 12 individuals from seven families with rare GTF3C3 variants, who had been referred from institutions in Australia, Egypt, Germany, Saudi Arabia, Switzerland, the Netherlands, the United Kingdom, and the U.S.


While the GTF3C3 gene has previously been implicated in isolated cases of neurodevelopmental disorders, the study firmly established that the majority of GTF3C3 mutations led to a loss of function.!"


Continued

The Good Doctor’s version of autism masks the reality of badly failed children

By Martha Gill, The Guardian, December 2, 2024


 the optimist, it may seem as though we are at last emerging from a dark age when it comes to children with neurological and learning disorders. After decades of tireless campaigning, life for those with ADHD, autism and dyslexia is getting better. We have come a long way from the playground slurs of the 1990s or the 1970s idea that emotionally withdrawn “refrigerator mothers” caused autism.


In fact, the speed and scale of the change has alarmed some experts. A new worry has emerged: over-diagnosis. Over the past 20 years, for example, there has been a near 800% rise in the numbers of children diagnosed with autism, and ADHD diagnosis has similarly exploded. Fear of tarring children with these labels once kept numbers down, are we now applying them too liberally?


Meanwhile, a recent report showed that almost a third of children are now eligible for extra time in exams – two in five of those at private schools. This kindled another discussion: is special treatment really justified in all these cases?


But amid these public conversations, which at the root ask if advocacy has gone “too far”, you get stories like this one.


Footage emerged last week, via the BBC, from a school in north-east London, showing autistic children being shoved into padded rooms, thrown to the floor, restrained by the neck or left alone, sitting in vomit.

Some 40 kids with learning disabilities and severe mental health disorders had been confined in these “calming rooms” for hours, most often without food and drink. Left alone, many were seen to be injuring themselves .

This story was not an outlier. These scandals emerge regularly. In 2022, a safeguarding review found evidence of “significant and varied” emotional abuse in three Doncaster special schools – excessive force, physical neglect, taunting and a “serious” breach of “sexual boundaries with children and young adults”, many of whom were non-verbal. Vinegar had been poured on open cuts and children had been locked outside in near-freezing temperatures.


How can we think destigmatisation has gone too far, while the treatment of autistic children echoes the worst excesses of the Victorian era?


While untangling the mystery, it is helpful to think of our progress as two-track. For those with milder conditions, things have indeed improved. Schools have often become more inclusive over the decades, making allowances for different abilities and efforts to combat bullying.


But this tide of progress has left behind a large and important group. For children with severe learning difficulties, life is not improving nearly as fast.


Why? Progress is largely driven by advocacy. But since the late 1980s and 1990s, it has been hugely influenced by the neurodiversity movement, which seeks to reduce discrimination through relatability.

It argues that every one of our unique brains fall along a spectrum of neurological differences, and those with so-called disorders are merely at one end of a continuum. People with autism or ADHD are therefore relatable – they have traits we all share to some extent. The term “neurodiverse” has since broadened further to include people with many different atypical traits and personalities.


Positive portrayals of autism in pop culture have concentrated on high-functioning people whose condition might give them particular strengths, such as the character Dr Shaun Murphy in TV’s The Good Doctor.


These efforts have been extraordinarily successful. Encouraging us to relate to autistic people and to respect them for their abilities seems to have reduced discrimination and bullying.


But it has also left a group in the cold: children who are not high functioning, who have limited communication and who struggle with daily life.


Continued



What's Happening In Your Community?


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Do you have information or a news story you would like to share?

Is there legislation in your state house that needs attention?


Contact us at info@vor.net


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


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

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.



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