May 5, 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


VOR's Annual Legislative Initiative

Briefing Session - Sunday, May 7, 2023

3 - 5 pm Eastern / 2 - 4 pm Central / 1 - 3 pm Mountain / Noon - 2 pm Pacific


Registration is open!

Our focus this year will be on

Promoting Safety for People with I/DD and Autism

Preventing Abuse and Neglect


Supporting our Direct Support Professionals

The meeting for our 2023 Legislative Initiative will take place on Sunday afternoon, on Zoom.

We ask that you register prior to the initiative, and that your membership is up to date.

We will supply the legislative materials in advance of the Sunday meeting, and we will supply you with contact information so that you may set up with your elected officials for the week(s) that follow.

Please Click Here to Register

You must be a current member or VOR to participate in this event.

We encourage members to pre-arrange meetings with your

Congressional Staffers

during the weeks of

May 8 - 12 & May 15 - 19

(We will provide you with contact information for the offices of your Members of Congress after you register for the Initiative)


Please visit us at for further information,

to register or become a sponsor,

or to download our updated conference materials

Comments on the May 1st Meeting of the President's Committee for 

People with Intellectual Disabilities


VOR's Dawn Kovakovich shared her comments to the PCPID with us, and we would like to share them with you.

Click here to read Dawn's comments

VOR's Polly Spare

A few weeks ago, we shared about the passing of VOR's second President, Polly Spare.

Below is a link to her formal obituary, as published in Philadelphia's The Intelligencer.

A memorial service/celebration of life will be held on May 13, 2023

We miss you, Polly.

Polly Spare Obituary

The CDC & YOU:

CDC to End Community Tracking of COVID-19   

By Alicia Lasek, McKnight's Long-Term Care News, May 2, 2023

The federal government will no longer track community levels of COVID-19 in the United States once the public health emergency ends on May 11, a news report said. 

Going forward, the Centers for Disease Control and Prevention will lean on COVID-19 hospitalization rates in some areas as a measure of transmission rates, similar to its influenza tracking, according to CNN.

Since hospitalizations are a lagging indicator, this decision may slow the news of a spike in transmission. But wastewater and air traveler testing may help provide an early warning system, an unidentified source told the news outlet. 

Nursing homes have used the CDC’s color-coded reporting systems to make COVID-19 mitigation decisions. This was particularly important for scheduling resident and staff testing during the early pandemic, when researchers discovered that nursing home case rates were closely tied to the rate of COVID-19 transmission in the surrounding community. 

Read the full article here

HHS Ending Healthcare Worker COVID-19 Vaccine Mandate  

By Kimberly Marcelas, McKnight's Long-Term Care News, May 2, 2023

The federal government will lift its COVID-19 vaccine mandate for healthcare workers, the White House announced late Monday.

“While I believe that these vaccine mandates had a tremendous beneficial impact, we are now at a point where we think that it makes a lot of sense to pull these requirements down,” White House COVID-19 coordinator Ashish Jha told The Associated Press on Monday.

Read the full article here

CDC: COVID Drops to Fourth Leading Cause of Death,

By Sophie Putka, Medpage Today, May 4, 2023

COVID-19 dropped to the fourth leading cause of death in 2022, down from third place in 2020 and 2021, according to provisional mortality data from the CDC.

Taking its place was "unintentional injury," which followed heart disease and cancer as the longstanding top killers, reported Farida B. Ahmad, MPH, and colleagues in Morbidity and Mortality Weekly (MMWR).

Unintentional injury deaths, driven in large part by drug overdose deaths, actually dropped slightly compared with 2021, but COVID-19 deaths dropped more -- by 47%. COVID-19 was listed as the underlying or contributing cause of 244,986 deaths (61.3 per 100,000) in 2022 compared with 462,193 deaths (115.6 per 100,000) in 2021.


CDC Director to Resign

By Joyce Frieden, Medpage Today, May 5, 2023

Rochelle Walensky, MD, MPH, who acknowledged her agency's handling of the COVID-19 pandemic "did not meet expectations," is stepping down as director of the CDC, the White House announced Friday.

"Dr. Walensky has saved lives with her steadfast and unwavering focus on the health of every American," President Biden said in a brief statement, "As director of the CDC, she led a complex organization on the frontlines of a once-in-a-generation pandemic with honesty and integrity. She marshalled our finest scientists and public health experts to turn the tide on the urgent crises we've faced."

"Dr. Walensky leaves CDC a stronger institution, better positioned to confront health threats and protect Americans," Biden's statement continued. "We have all benefited from her service and dedication to public health, and I wish her the best in her next chapter."

In her resignation letter to the president, Walensky said the end of the COVID-19 public health emergency (PHE) on May 11 "marks a tremendous transition for our country, for public health, and in my tenure as CDC Director. I took on this role, at your request, with the goal of leaving behind the dark days of the pandemic and moving CDC -- and public health -- forward into a much better and more trusted place. In the process, we saved and improved lives and protected the country and the world from the greatest infectious disease threat we have seen in over 100 years."


CDC Expands Autism Tracking

By Michelle Diament, Disability Scoop, May 1, 2023

With autism prevalence continuing to rise, the Centers for Disease Control and Prevention says it will monitor the number of children with the developmental disability in more communities across the nation.

The federal agency is adding five new sites to its Autism and Developmental Disabilities Monitoring, or ADDM, Network this spring, bringing the total to 16. Researchers with the network regularly comb through health and education records for children in their communities at certain ages to assess how many are on the spectrum. The CDC relies on these findings to estimate how pervasive the developmental disability is.

Traditionally, the network has kept tabs on the situation among 8-year-olds and all sites will continue to look at that age group as well as 4-year-olds. Nine sites will also collect information about transition planning and co-occurring conditions among 16-year-olds with autism, the CDC said.

Tracking prevalence in more geographic areas will provide a better picture of what’s going on nationally, according to Matt Maenner, an epidemiologist and chief of the Child Development and Disability Branch at the CDC’s National Center on Birth Defects and Developmental Disabilities.

With the newly added sites, data collection will occur in Atlanta; Austin, Texas; Baltimore; Indianapolis; Laredo, Texas; Little Rock, Ark.; Madison, Wis.; Minneapolis; Nashville, Tenn.; Newark, N.J.; Philadelphia; Phoenix; Salt Lake City; San Diego; St. Louis; and Puerto Rico.

Read the full article here

Note: While we applaud the increased tracking, we are concerned that the CDC is not tracking in our largest urban areas, notably New York City, Los Angeles, Chicago, or Houston.

State News:

Pennsylvania - After 126 Years of Service, Polk Center Officially Closed

By Gavin Fish, Explore Clarion, May 2, 2023

At 3:00 p.m. on Monday, May 1, most of the last employees of Polk Center turned in their badges, keys, and parking passes. A small stay-behind crew and staff with special work assignments will continue to manage the site, according to a letter that was sent to staff last week from The Pennsylvania Department of Human Services secretary, Kevin Dressler.

Calls to the DHS press office for information regarding the remaining employees were not returned.

The care of the center’s 27 remaining residents has been handed over to Verland Community Living Arrangements, based in Sewickley. The company will utilize one building on campus to care for the residents until four group homes are constructed in the area.

According to Verland’s CEO Bill Harriger, the company plans to build the homes in a 15- to 20-mile radius of Polk Center.

As of April 11, Verland had hired 124 Polk Center staff to work at its Western Pennsylvania facilities. When asked for updated numbers, Harriger was unavailable for comment.


New Mexico Advocates Score a Major Win for Direct Support Professionals

By Amy Robins, PHI National, April 26, 2023

On April 5, 2023, New Mexico Governor Michelle Lujan Grisham signed House Bill 395 into law. This legislation is the result of a year-long effort of a broad-based coalition (including PHI) of caregivers, advocates, care recipients, legislators and employers working together to strengthen the direct care workforce. By requiring annual data collection on the Direct Support Professional (DSP) workforce and using a wage calculation for these workers who care for persons with developmental disabilities that is 150% of the state’s minimum wage, the legislation advances the policy agenda on wage increases for this vital workforce.

The effort was led by Adrienne Smith, Executive Director of the New Mexico Caregivers Coalition, who served as the lead for PHI’s Essential Jobs Essential Care Initiative ™ (EJEC) in the state. PHI launched the EJEC initiative in 2020 with three states: Michigan, New Mexico, and North Carolina. In New Mexico, the three-year initiative brought together a broad coalition of leaders and advocates across the state to identify and support policy priorities that support direct care workers.

The initiative focused on three key areas: lifting workers out of poverty; investing in workforce innovations; and improving data collection efforts.

PHI’s Director of Advocacy, Amy Robins, sat down with Adrienne to learn more about this legislation, including how it will help workers, how this advocacy win came about, and next steps.

Amy Robins: Congratulations on getting this bill signed into law! Tell me more about this legislation and what it will do.

Adrienne Smith: Thank you! I’m so thrilled that both chambers of the New Mexico legislature passed this law unanimously and the Governor signed it. It’s a really exciting accomplishment.

The bill requires all Developmental Disabilities Waiver providers to provide wage, recruitment, retention, and vacancy data to the New Mexico Department of Health annually. This means that both the system and the state will have current data to guide future decisions and support future appropriations requests. Also, rate studies will value the wage of Direct Support Professionals at 150 percent of the state minimum wage so that this figure can be factored into provider reimbursement rate calculations going forward.


Tennessee - Yager’s Budget Amendment Bumps Pay for Direct Support Professionals to $15 per hour

By Independent Herald Staff, May 2, 2023

A pay raise for Tennessee’s direct support professionals to a minimum of $15 per hour will take effect on July 1, 2023.

The salary increase comes after the approval of a budget amendment filed by State Sen. Ken Yager, R-Kingston, and State Rep. Patsy Hazlewood, R-Signal Mountain.

Yager and Hazlewood filed the fiscal year 2024 budget amendment to secure $16.3 million to increase the pay for direct support professionals, who provide support to people with intellectual and developmental disabilities.

“Direct support professionals care for Tennessee’s most fragile citizens. Much is expected from them and these valued professionals exceed expectations,” Yager said. “Over the years, the General Assembly has worked to raise the direct support professional wage from $8 per hour to $15 per hour. In the FY 2024 budget we have achieved our goal. And this is just the beginning.”


Advocates say Illinois' System to Help People with Developmental Disabilities needs Fixing, Funding

By Dana Koslov, CBS News Chicago, May 2, 2023

It is time for the state to get serious about caring for people with intellectual disabilities, say advocates are hoping lawmakers will give them $85 million more than what Gov. JB Pritzker budgeted.

The advocates want the money to help stop the exodus of workers providing services for that community. But CBS 2 Political Investigator Dana Kozlov found the problems are bigger than wages.

The state is also in violation of a 12-year-old consent decree – leaving thousands without care.

Jordan Kennedy, 12, can sometimes be all smiles and cooperation. But sometimes, that is not the case.

"It's not uncommon for her to kick, hit, scratch, pull my hair, headbutt me," said Jordan's mother, Kelly Kennedy.

Kelly Kennedy says her daughter's behaviors are due to a brain and rare genetic disorder – which have left Jordan at the developmental age of 4.

Kelly Kennedy, her husband, and their four children moved from Arizona to Elmhurst five years ago for the school services. "The schools here in Elmhurst are incredible," said Kelly Kennedy.

But that is where services for Jordan stop.

"We do not have services for Jordan like social services," Kennedy said. "We don't get respite through the state. There's no Medicaid for her."

That is because Jordan is stuck on a massive waitlist to receive state services, and has been for five years. She is one of more than 12,000 people with developmental or intellectual disabilities on that waitlist – despite a 2011 consent decree ordering the Illinois Department of Human Services to get people off of it.

"Since its inception, the state has never been in compliance with the consent decree," said Kim Zoeller.

Zoeller heads the Ray Graham Association, a Lisle-based organization providing community services to people with disabilities. She said one reason the state can't move people off the waitlist is because organizations like hers don't have enough staff - about 25 percent of all positions remain unfilled throughout the state.

Zoeller blames that on low, stagnant pay.

"This field literally went a decade without any cost-of-doing-business increases," Zoeller said.

That is why Zoeller and other advocates are asking state lawmakers for an additional $85 million to give direct support professionals, or DSPs, a $4-per-hour raise. That hike was also recommended in the Developmental Disabilities Services Rate Study report from Guidehouse Inc., commissioned by the Illinois Department of Human Services to help fix the ongoing problems.

"We're not talking about moving Illinois to be the best state – we're talking about simply stabilizing our services," said Zoeller. "That's how bad it is."


South Carolina Mother Tries Finding Help for Son with Severe Autism with Autism Resources Spread Thin

By Peyton Furtado, WYFF News, May 4, 2023

What happens when what's best for your child is just out of reach, and every day is a struggle to keep them from hurting themselves and others?

Brandy Hoyle is a single mother who says that's been her reality for more than a decade. She loves her kids, 6-month-old Asher and 15-year-old Aiden. But their lives are not without challenges.

Aiden is severely autistic and nonverbal, and when he can't express himself, Hoyle said he'll often have violent outbursts. As he's grown, she says it's become a daily struggle to keep him from hurting himself, the baby, or her.

"But at this point, he's 288 pounds, he's 6-foot-2, and he's 15," Hoyle said. "And without specialized care and 24-hour supervision, it's just not possible to keep him safe."

Hoyle said she can't keep both children in the same house anymore, and if she can't find help soon, she may be forced to place Aiden with DSS.

"It's hard enough to get to the point to admit that you're afraid to be alone with your child. But to admit that it's not safe and you need help, help that you're not getting, that's even worse," said Hoyle.

Aiden has been in the hospital for 48 days. According to Hoyle, that's because, during a recent outburst, Aiden shattered mirrors and cut himself, giving her a concussion in the process. She said she tried reaching out for help, but the roadblocks are never-ending.  

Hoyle says she's been told, "He's too mentally delayed for their treatment program, he's nonverbal, so he would not be able to participate in treatment, or he's aggressive and would be a danger to their staff."

Hoyle said the nonprofits that specialize in children like Aiden often have waitlists that are several months long.

According to Elizabeth Buschéy with Project Hope, which specializes in autism care, COVID-19 has exasperated existing challenges with hiring and retaining staff, as well as the high cost of care versus the low rate of reimbursement.

"It's a challenge for everybody who is providing services because the rates of autism continue to rise, and we want to help as many people as we can. So, in order to help those people, we have to have the staff available and the training available, and you know, it's an ever-growing need," she said.


"Massachusetts Arc Echoes our Concern that DDS Faces ‘Systemic Failure’ in Providing Services"

By Dave Kassel, The COFAR Blog, May 1, 2023

Almost two years ago, we first reported that direct care staffing shortages were causing a potentially serious deterioration in residential and day program services in the Department of Developmental Services (DDS) system.

We have also reported repeatedly that the ongoing staffing shortages have caused worsening conditions in the group home system and a lack of meaningful activities in community-based day programs.

Now, the Arc of Massachusetts — an organization that lobbies for DDS residential and day program providers — is echoing our concerns. GBH News, citing the Arc, reported on April 27 that “up to 3,000 Massachusetts residents are waiting for a placement in these much-needed day programs, which are facing the same staffing shortages seen in other social service fields.”

The public radio news outlet quoted Maura Sullivan, a senior Mass Arc official, as saying:

There are thousands of adults with developmental disabilities that are not being served or we consider them underserved — very, very few services…
I think of it as really a systemic failure. And we’re really waking up to the fact that, you know, human services is a workforce that has been neglected in terms of rate increases. (my emphasis)

We would emphasize that we believe that thousands of Massachusetts residents are waiting not only for day program services, but for residential placements as well. In her remarks, Sullivan did not refer specifically to day program services, but to a lack of services in general.

What the Arc isn’t saying is that the corporate providers are well funded in the state budget. The provider residential line item will have grown from $847 million, ten years ago, to more than $1.7 billion, under Governor Healey’s Fiscal Year 2024 budget proposal.

We think there is sufficient funding in the DDS system to provide needed services. It’s just that DDS isn’t using the resources in an optimal way. An example of that is DDS’s neglect of the ICFs and state-operated group homes as potential resources.

We have suggested to families whose loved ones are either receiving substandard services or are waiting for services that they ask DDS for placements in either the state-run Wrentham or Hogan ICFs, or in state-operated group homes. In the vast majority of those cases, however, we have heard that DDS has either not responded or pushed back on those requests.

While the state has continued to pour money into the corporate provider system, the number of residents in the state’s state-operated group homes and state-run ICFs have continued to drop.

As of the fall of 2021, we heard that state-operated group homes were being closed, and last month, we received records from DDS indicating that those closures were the result of insufficient staffing of corporate provider-run group homes. Yet, the records also indicated that the state-operated group homes continued to have vacancies.


More National News:

Feds Want To Shake Up Rules For Home And Community-Based Services

By Michelle Diament, Disability Scoop, May 5, 2023

Federal Medicaid officials are proposing major changes aimed at improving access to home and community-based services for people with disabilities and bolstering the direct support professional workforce.

The Centers for Medicare & Medicaid Services issued two proposed rules in the Federal Register this week that the agency said would “establish historic national standards for access to care regardless of whether that care is provided through managed care plans or directly by states through fee-for-service.”

The effort includes key changes to the rules governing home and community-based services through what’s being called the Ensuring Access to Medicaid Services regulation, or the Access Rule.

Under the proposal, states would be required to reassess the needs of each individual receiving home and community-based services annually and revise service plans accordingly. In addition, the rule would require that at least 80% of what Medicaid pays for personal care, homemaker and home health aide services goes directly toward compensation for the person providing the service rather than for administrative purposes or profit. And, states would need to publish the average hourly rate paid to direct care workers.

The 130-page regulation also includes new mandates for states to report on how long their waiting lists are, whether people can access services once they get a waiver and various quality measures in their home and community-based services programs. CMS would expect states to maintain an electronic incident management system and respond to incidents within certain time frames. States would also be required to create a grievance process for home and community-based services recipients in traditional Medicaid plans so they can file a complaint against a provider or state much like already exists for those in managed care plans.


Bipartisan Bill would Strike ‘Outdated and Derogatory Language’ on Intellectual Disability from Federal Law

By Rafael Bernal, The Hill, April 28, 2023

A bipartisan House group on Friday introduced a bill to strike more than two dozen instances of outdated and derogatory terminology describing intellectual disability from federal law.

The bill, introduced by Reps. Mark Pocan (D-Wis.), Pete Sessions (R-Texas) and Cathy McMorris Rodgers (R-Wash.) and D.C. Del. Eleanor Holmes Norton (D), is identical to one introduced last year by the same group.

The bill would insert the phrase “intellectual disability” to replace nearly 30 instances in statute where “mentally retarded” is currently used. The changes would modernize language in laws ranging from criminal statutes to grants to meet the needs of people with disabilities.

The bill’s main sponsorship group spans party and ideological affiliations across the House, from progressives such as Pocan to Republicans close to leadership including Sessions.

Sessions, McMorris Rodgers and Norton shared first-hand experiences in their own families that in part inspired the legislation.

“I am the proud father of a Down syndrome young adult and Eagle Scout,” Sessions said.  “Those who know my son regard him as an able, loving, and accomplished young man, whose abilities far outnumber his disabilities. I am confident that the ‘Words Matter Act’ will bring us one step closer to ushering our U.S. Code into the present.”

McMorris Rodgers, a former member of Republican leadership, said the change would “prove that our country knows better by bringing the laws of our land into the 21st century and setting a new standard for the way we speak about others in America.”

“My oldest son Cole has Down syndrome. From the day he was born, I watched as others tried to limit his potential. But Cole has refused to let his extra 21st chromosome define him, defying his doubters at every turn,” McMorris Rodgers said.

And Norton said the bill’s passage will show that “our country is better than this.”

“My own daughter, Katherine, has Down syndrome. I’m appalled at the thought of someone using the word ‘retarded’ toward her, and it is inexcusable that the word is still part of the U.S. Code,” Norton said.

Read the full article here

Opinion: The Care Tax - The Cost of the Lack of Care for Caregivers  

By Nicole Jorwic, The Hill, April 30, 2023

One cost we don’t see on our tax forms each year that we should: the cost of unpaid family caregiving. In fact, President Biden declared “right now, the cost of care is too high” as he signed the largest set of executive actions on care Tuesday in history.   

Every person across every socioeconomic background, every race, and every stage of life will need care at some point in their life. Whether as an infant, when recovering from an illness, living with a disability, or as we age, care is a universal experience. In this country, care is a shared and unspoken tax as well. 

Whether we’re talking about paying out of pocket to make a house wheelchair accessible or the time and lost wages while navigating a labyrinth of insurers and the revolving door of in-home direct care workers in a country without federal paid leave, the financial weight crushing families across the country due to our lack of care infrastructure can no longer be ignored. 

The Biden administration’s executive order recognized the growing population of family caregivers supporting loved ones — children, parents, partners, siblings, grandparents, aunts or uncles, friends or neighbors — who provide 36 billion hours of care nationwide, according to a recent AARP report. Each year, tens of millions of people in this country find themselves providing an average of 18 hours of unpaid care work per week, valued at a staggering $600 billion in 2021

Family caregivers, disproportionately Black women and women of color, are effectively taxed twice by the missed wages and the unpaid care they perform. Losing an estimated $522 billion in income each year while caring for a loved one due to lost wages, family caregivers are taxed from both ends: reduced work hours and out-of-pocket costs for medical supplies, transportation, personal care and more.

This is something I know personally; just last month, I took an unexpected trip to care for my grandfather who was hospitalized in another state. My trip totaled almost $2,000, from my airfare, travel costs, and meals to the medication, supplements, and equipment he needed that were outside of what Medicare covers. My mom, aunts, and uncles who followed in our care conga line all incurred costs, and lost wages. I know that most people simply cannot afford unexpected costs like this, which forces families across this country into impossible scenarios every single day when addressing long-term care needs of aging loved ones.


Note: VOR members may note that the author, Nicole Jorwic, has worked with organizations that have not always been in full agreement with some of VOR's principles and our vision of a full continuum of care.

In recent months, however, we have been working with Nicole in a coalition of national organizations, including Together for Choice, ANCOR, the National Association of Direct Support Professionals, Caring Across Generations, and The Arc, among others.

We have chosen to drop our individual differences and appeal to Congress and the Administration to address the Workforce Crisis for DSPs and CNAs in ALL Medicaid Long-Term Services and Supports (LTSS). This includes ICFs, nursing homes, and other non-HCBS settings as well as Home- and Community-Based Services.

Technology: AI and Healthcare

Will Technology Such As ChatGPT Improve Health Care Or Exacerbate Disparities?

By Wura Jacobs and Omolola E. Adepoju, Health Affairs, May 3, 2023

In health care, technology is becoming a two-edged sword; on one hand, it is able to reduce mortality, but on the other hand it could contribute to inequity in care and care outcomes. A recent technological advancement that has taken the world by a storm is the Generative Pre-trained Transformer, or ChatGPT as it is popularly known. Generative AI (artificial intelligence) such as ChatGPT is a large language model (LLM) tool that is designed to generate intelligent, human-like responses to user prompts, leveraging its extensive data stores and efficient deep learning algorithms. Released by San Francisco, California-based OpenAI in November 2022, ChatGPT’s capability to answer a wide range of text-based requests, generate responses indistinguishable from natural human language, and generate summaries of technical information offers promising benefits for the health care system. The introduction of ChatGPT has widely opened discussions on the potential of AI and how it can possibly optimize patient care and close current gaps in the accessibility, understandability, and utility of internet health information.

However, on deeper examination ChatGPT’s design framework poses a number of important and significant challenges and limitations that could exacerbate disparities in health care and outcomes. In this commentary, we discuss the utility of ChatGPT and highlight its potential to worsen disparities in health if its limitations remain unaddressed.


VOR's 40th Anniversary Annual Meeting

June 11, 2023 - 11:30 am - 5:30 pm (Eastern)

Our Annual Members Meeting (again, on Zoom) will take place on the afternoon or Sunday, June 11th. The schedule is yet to be determined, but the program will include a "State of the Union" speeches from our President, Joanne St. Amand, our Treasurer, Larry Innis, and our Executive Director, Hugo Dwyer, as well as reports from our various committee chairs on their work through the past year.

This Year's Speakers:

Congressman Glenn Grothman - (R-WI)

Representative Charlie Meier (Illinois General Assembly)

Amy S. F. Lutz, PhD.

Speakers and times for this event are subject to change

And, as we do every year, we will have a special networking meeting for our members to submit reports on what is going in their states, so that we can share our problems, solutions, strengths, and hope.

This event is open to all. Registration will begin in Mid-Late May

VOR Bill Watch:

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


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) - TTo amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.


S.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.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.

VOR supports increasing funding for people with I/DD, but we have concerns that this bill, in its 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!



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

[email protected]

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.

Planned Giving

As we approach the mid-April tax season, we ask that our members consider making a donation to VOR as a way to ease your tax burden while supporting our mission to advocate for individuals with I/DD and autism.

As always, we suggest you consult with your policy administrators and tax professionals to determine how best to contribute.

Please click here to Join, Renew, or Donate to VOR

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?

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

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