August 11, 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



They're Back!

Congress is on its annual August vacation.

For many of our elected officials, this is a time to be back home, meeting with constituents, shaking hands and learning about local issues that aren't always apparent from their offices on Capitol Hill.

This is our chance, your chance, to introduce them to our concerns. This is an opportunity to introduce them to your loved one with I/DD or autism, and to give them a tour of their ICF residence, or show them what your loved one's sheltered workshop offers to the many people who work there.

Make an appointment with their state office today. These opportunities don't come often, and it's not everyday that you can actually change the perspective of someone in such a position of power.

Protect Your Loved Ones from Medicaid Disenrollment

States have been removing people from their Medicaid roles in large numbers as the end of emergency provisions put in place during the height of the pandemic are set to expire. The Great Unwinding is continuing, and anyone who receives services through Medicaid may be at risk of losing their benefits for failing to file new paperwork with their state agency.

VOR encourages its members to contact their state agencies to make sure that the proper forms have been filed, so not to lose coverage.

Lost Medicaid Health Coverage? Here’s What You Need to Know

By Samantha Liss, KFF Health News, August 10, 2023  

The nation’s health insurance system is undergoing tremendous upheaval as an estimated 8.2 million people will need to find new coverage since pandemic protections for Medicaid enrollees came to an end this spring.

If people throughout the country fail to turn in the renewal packet, they run the risk of falling through the cracks, said Adrianna McIntyre, an assistant professor of health policy at Harvard. Being uninsured can lead people to postpone preventive care — and cause them to end up in debilitating medical debt if emergencies happen.

Most of the millions cut from Medicaid so far lost their benefits because they didn’t complete the paperwork, not that they were deemed ineligible, according to KFF. And patient advocates worry enrollees may never have received the packet. Many recipients have likely moved and changed addresses but have not updated their contact information with states. Advocates fear those issues may be felt harder in places such as Louisiana, where many people have been displaced by floods and hurricanes in the past three years.

In some states, Medicaid recipients can check their eligibility status online.

Read the full article here

National News:

Nearly 99% of Autistic Adults Not Receiving Public Employment Services in the U.S.       

Peer-Reviewed Publication from Drexel University, via Eureka Alerts, August 9, 2023

From 2008-16 an estimated 1.98 million autistic adults — or 99%, of those who likely needed employment services — did not receive support through Medicaid or Vocational Rehabilitation Administration, a new study from Drexel University’s A.J. Drexel Autism Institute finds.

Recently published in The Milbank Quarterly, the study reported on data from the Centers for Medicare & Medicaid Services and the Department of Education’s Rehabilitation Services Administration. The researchers compared the distribution of employment services among autistic people to those with intellectual disability.

“Employment is a key social determinant of health and well-being for the estimated 5.4 million autistic adults in the United States – just as it is for citizens without disabilities,” said Anne Roux, a research scientist and director at the Policy Impact Project in the Autism Institute’s Policy and Analytics Center (PAC), who is lead author of the study.

Across both Vocational Rehabilitation and Medicaid programs, the research team estimated that only 1.1% of working-age autistic adults who potentially need employment services are actually receiving them. Only around 4,200 autistic people were receiving services through Medicaid waivers in 2016, while nearly 18,000 received Vocational Rehabilitation services.

There are stark contrasts between the two employment services’ offerings for autistic adults. Medicaid provides longer-term employment services for people with disabilities, while Vocational Rehabilitation provides short-term services. But between 2008-2016, Vocational Rehabilitation provided services for eight times as many autistic people as Medicaid did. The discrepancies were smaller among people with intellectual disability, who were three times more likely to receive services through Vocational Rehabilitation than Medicaid.

“It is difficult for me to wrap my brain around exactly how few people are receiving public employment services,” said Roux.

Roux added that autistic people are not guaranteed access to services to support functioning and wellbeing after they leave high school. Once special education services end, there exists what is known as a “services cliff” — a gap in service eligibility — because there is no federal law that enables autistic adults to continue to receive the services and support they may need for the rest of their lives. The services cliff is compounded by severely limited access to employment services. Even when services are available, the road to getting services is often very difficult to navigate which prevents people from achieving their potential, and traps people in a life of forced poverty and increased health care costs.

The research team was attempting to investigate the bigger picture of how employment services for autistic adults are funded in the U.S. But, they noted, there isn’t public access to data that captures employment services for autistic people across the Medicaid and Vocational Rehabilitation systems.

“Therefore, the astounding gaps in our capacity to provide these public services are usually only noted in the stories of people who repeatedly tell us they cannot access the help they need or the people looking to bolster delivery of these services,” said Lindsay Shea, DrPH, leader of PAC and the primary investigator on this research. “These findings speak truth to those experiences and why funding for these services is critical.”

Because of this, the research team suggests there is a dire need for policy changes to improve the employment services systems in the U.S.

Read the full article here

(Note: Despite numbers like these, many advocates for competitive integrated employment continue to call for an end to sheltered workshops and 14c programs that successfully provide employment opportunities for a significant number of individuals with autism.)

EVV: The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients

Technology is perpetuating discrimination.

By Ariana Aboulafia and Henry Claypool, Slate, July 26, 2023

In Arkansas, the Guardian reported on a disabled Medicaid recipient who depleted his savings to pay for a smartphone for his Medicaid-covered caregiver—and then had to pay even more to cover caregiver wages that were withheld due to technical glitches. In Ohio, the Mighty reported on someone who placed the electronic device meant to certify his caregiver’s activities in the refrigerator when not in use because he was concerned about privacy. And throughout the U.S., other outlets have reported on disabled people who have been forced to share photographs and biometric data with third-party apps if they want to continue receiving government support to pay for their in-home care.

All of this is thanks to a program known as electronic visit verification, or EVV. EVV ostensibly aims to reduce waste, fraud, and abuse in the Medicaid system by requiring that caregivers of disabled people “prove” that the covered individual is actually receiving their approved care. Under federal law, all states must require that health and home care providers utilize some form of electronic visit verification; if they do not, they risk a reduction in funding for their Medicaid programs.

Medicaid-funded in-home care helps to make life more accessible for many Americans with disabilities, and has done so for decades. However, EVV creates barriers to accessing that care, and in doing so contravenes the intent of anti-discrimination statutes like the Americans with Disabilities Act. When the ADA was signed into law on July 26, 1990, it marked a critical turning point in the modern disability rights movement. The ADA had the noble intention of eliminating discrimination against people with disabilities, partially by providing for accessibility in all arenas of American life. But 33 years later, the law has been unable to entirely fulfill its ideals—and in many cases, the rapid proliferation of technology can serve as a barrier, not only to the mission of advancing accessibility, but also to reducing discrimination against disabled people more generally. Electronic visit verification illustrates what discrimination can look like for people with disabilities in a digital age, and serves as a reminder that successfully combating disability discrimination requires looking beyond accessibility.

While EVV was initially required as an alleged attempt to prevent public benefits fraud, whatever preventative benefit it may provide (most of which seems, at this point, to still be largely speculative) is largely outweighed by its detriments. On the financial front, according to the Guardian, the state of Arkansas secured only three convictions for personal care-services fraud in 2020, recovering a total of $1,930; as of mid-2021, EVV had cost the state $5.7 million to implement. Outside of this, EVV creates a system in which disabled people who require Medicaid-funded in-home services are frequently surveilled by the government; their photographs or location data are uploaded to apps via their caregivers’ personal devices; the services they need and are entitled to are disrupted; and their independence, freedom to leave their homes, and legally protected right to participate fully in their communities is hindered. Disabled travel blogger and professional editor Karin Willison has written that “Electronic visit verification is the equivalent of putting an ankle monitor on people with disabilities and telling us where we can and can’t go. It turns having a disability into a crime.”

Read the full article here

State News:

Pennsylvania Cuts at least 137,000 People from its Medicaid Program as some participants fight Paperwork Denials

By Nicole Leonard, WHYY (PBS), August 8, 2023

At least 137,000 people have been terminated from Pennsylvania’s Medicaid program since April, when a pandemic-era rule that had guaranteed continuous enrollment in the low-income health insurance program ended.

Some no longer qualify for the program based on their income, others have failed to submit the yearly renewal paperwork that is again required.

Public health experts say they expect the number of terminations to grow over the next eight months as the state reevaluates roughly 3.6 million people for program eligibility.   


Ohio - Government Working Together Enabled Important Boost in Wages for Direct Support Professionals

Opinion by Tony Thomas, Cleveland Plain Dealer, August 9, 2023

Two words we don’t often say to our politicians these days: Thank You!

Even as I write this, I’m still in a bit of shock.

When was the last time we witnessed something good happen in government? Regardless of where you may fall politically, we can all agree it’s a rarity these days.

So, when something positive happens, we must take a minute and give credit where credit is due.

In January, we made a desperate plea to increase the state budget so that Direct Support Professionals (DSPs) can earn a proper living wage and frankly, make more than the local Taco Bell, Walmart or Target.

It was our Hail Mary pass. It sparked a state-wide letter-writing and phone-calling advocacy campaign targeting the Ohio House and Finance Committee.

We were desperate to increase wages in all human service areas to a statewide average of $20 per hour (from the current $12). We are talking about amazing men and women who provide much love, joy, friendship, and support to the 200+ adults with developmental and intellectual disabilities who call Welcome House home, and the 200+ other nonprofit organizations across our state seeking help for a permanent increase in Medicaid funding.

It started with Gov. Mike DeWine making a strong recommendation to increase the state budget for human service funding. The wage issue then went to the Ohio House. Speaker Jason Stephens, Finance Committee chair Jay Edwards and ranking member Bride Rose Sweeney gave ample time to advocate on behalf of the developmentally disabled community to present our case for increasing wages.

The result?

They increased the $16 that the governor recommended to a statewide average of $17 and finally landed on a recommendation of $18 per hour.

We were thrilled to see where these conversations were going! But we still had work to do.

We met with Senate President Matt Huffman first assigned our wage request to a newly formed Senate Medicaid committee led by Mark Romanchuk. Then the Senate Finance Committee, chaired by Matt Dolan, and ranking member Vernon Sykes, took it up and negotiated an additional amount of funding from our entire County Board of Developmental Disabilities system that would allow for an increase to a statewide average of $18 per hour on January 1, 2024, and finally $19 per hour on July 1, 2024.

Read the full article here

Back Issues of VOR's Weekly Newsletter are available on our web site.

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VOR Bill Watch:

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


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. 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.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.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.


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 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!



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.

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?

Is there legislation in your state house that needs attention?

Contact us at [email protected]

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Elk Grove Village, IL 60007

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