September 8, 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

Celebrate National Direct Support Professionals Week!

VOR extends our gratitude to all of the Direct Support Professionals for their devotion to our loved ones with I/DD and Autism!

Image courtesy of the U.S. Department of Labor. For more information, please visit:

Spotlight: Creating a Better Work/Life Balance for

Direct Support Professionals

Black Hills Works implements "The Good Life"

By Kristal Miga, South Dakota Public Broadcasting, September 5, 2023

They’ve dubbed it “The Good Life.” And for many Black Hills Works employees, it consists of a three-day work week, a flexible schedule, and less burn-out. For Black Hills Works leadership, they’re hoping it results in less employee turnover and ultimately, better lives for the people they serve.

Black Hills Works is a company in Rapid City that supports people with disabilities. Many of their employees are Direct Support Professionals or DSPs and help some people do things like bathe, eat, and get dressed. They also support them with their medications and take them to community events or medical appointments.

But the company has a 40 percent employee turnover rate.

Gayle Steiger is the Vice President of Human Resources at Black Hills Works. She said they knew they weren’t the only ones with a workforce crisis and they needed to do something innovative.

“It seems like since the pandemic, people want more work-life balance," Steiger said. "I think they always did but it became more apparent at that time. And so that’s why we knew we couldn’t keep doing the same thing. We have shift work. That means evenings, overnights, weekends, holidays and that’s always more challenging to fill those positions versus a Monday through Friday day position so… and we have a lot of staff. We have probably close to 400 people who do direct support all over the city in group homes, houses, apartments, and so we need a lot of good people. And so that’s what we were facing and that’s why we thought, 'well, let’s do something different.'"

So, they enlisted the help of a consulting company.

They landed on a schedule where most direct support professionals work 12-hour days, three days a week. They also made changes to pay structures, paid time off and other benefits — all in hopes of recruiting and retaining a well-trained and happy workforce.



Why ICFs Matter

Join us for our next Quarterly Networking Meeting, when we present a forum on the importance of Intermediate Care Facilities to a full continuum of care for people with intellectual and developmental disabilities and autism.

September 21, 2023

7 pm Eastern / 6 pm Central / 5 pm Mountain / 4 pm Pacific

On Zoom

Our panel will be moderated by Roslyn Leahey, and will feature VOR Board Members Rita Winkeler (Murray Center, Illinois), Sybil Finken (Glewood Resource Center, Iowa), Terry Lafleur (Pinecrest Center, Louisiana) and Joanne St. Amand (Greenbrook Developmental Center, New Jersey),

We look forward to hearing from you about the importance of ICF care for your loved one with I/DD or severe autism.


To join the meeting, click on the Zoom link below

Meeting ID: 884 2544 2450

Passcode: 122333


One tap mobile

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Find your local number:

Why ICFs Matter

Join us for our next Quarterly Networking Meeting, when we present a forum on the importance of Intermediate Care Facilities to a full continuum of care for people with intellectual and developmental disabilities and autism.

September 21, 2023

7 pm Eastern / 6 pm Central / 5 pm Mountain / 4 pm Pacific

On Zoom

Our panel will be moderated by Roslyn Leahey, and will feature VOR Board Members Rita Winkeler (Murray Center, Illinois), Sybil Finken (Glewood Resource Center, Iowa), Terry Lafleur (Pinecrest Center, Louisiana) and Joanne St. Amand (Greenbrook Developmental Center, New Jersey),

We look forward to hearing from you about the importance of ICF care for your loved one with I/DD or severe autism.


To join the meeting, click on the Zoom link below

Meeting ID: 884 2544 2450

Passcode: 122333


One tap mobile

+16465588656,,88425442450#,,,,*122333# US (New York)

+16469313860,,88425442450#,,,,*122333# US

Find your local number:

Please click here to register for the event

A brief interview with Amy Lutz on her new book may be found here

National News:

Department Of Health And Human Services To Bolster Disability Protection In Federal Law

By Shruti Rajkumar, Huffington Post, September 7, 2023

The U.S. Department of Health and Human Services (HHS) proposed a rule on Thursday that would update provisions in Section 504 of the Rehabilitation Act of 1973 and effectively bolster disability protections that were outlined in the federal law 50 years ago.

Section 504 of the Rehabilitation Act of 1973 is a landmark civil rights law that prohibits disability discrimination in any program or activity that receives federal funding or that is conducted by a federal agency, such as public secondary or elementary schools, hospitals and nursing homes.

The regulation, Section 504, was championed by disability advocates, which led to its implementation four years after the law was signed, and served as a foundation for the Americans With Disabilities Act of 1990 (ADA).

HHS’s new proposed rule would update and clarify obligations to provide nondiscriminatory health care and social services to disabled people, which are not explicitly stated in the current version of Section 504.

The rule, for instance, would establish an enforceable standard for accessible medical equipment, which would eliminate a barrier faced by more than 20 million disabled adults who have a disability that impacts their mobility, according to the National Council on Disability (NCD). Additionally, it would include a section to clarify requirements in child welfare services.

Language would also be included in the amendment to ensure “medical treatment decisions are not based on biases or stereotypes about individuals with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability.”

According to an HHS document outlining the proposed rule, the amendment would ensure that Section 504 is interpreted in a way that is consistent with other disability laws such as the ADA, the ADA Amendments Act of 2008, and the Affordable Care Act, along with the multiple statutory amendments that have been added to the Rehabilitation Act.

“It is crucial that section 504 be interpreted consistently with these developments and laws to ensure conformity with current law and to protect against discrimination on the basis of disability,” HHS Secretary Xavier Becerra wrote in the document.

Despite federal protections, disabled Americans continue to face discrimination in health care and social service programs.

In 2020, disabled people were denied care in Oregon hospitals on the grounds that they had a “lower quality of life,” NPR reported. States across the country were also rationing plans that allowed for the discrimination of disabled and elderly people in the event of a crisis — such as the pandemic — as a means of dealing with medical care shortages.

The use of “low quality of life” as justification for denying care was also reflected in 2022, when children with Down Syndrome and other intellectual disabilities in various states were being denied organ transplants, CBS News reported.

Read the full article, with citations, here

Read the as-yet unpublished Proposed Rule here

Feds Warn Medicaid Programs Against Wrongly Dropping Beneficiaries

By Michelle Diament, Disability Scoop, September 5, 2023

Federal Medicaid officials say that multiple states may be improperly removing individuals from Medicaid, a program many people with disabilities rely on for everything from health care to home and community-based services.

The Centers for Medicare and Medicaid Services sent a letter to state Medicaid directors last week calling out practices that they say could be leading some people who should remain eligible to lose their coverage.

“CMS has learned of additional systems and operational issues affecting multiple states, which may be resulting in eligible individuals being improperly disenrolled,” reads the letter from Daniel Tsai, director of the Center for Medicaid and CHIP Services at CMS. “These actions violate federal renewal requirements and must be addressed immediately.”

During the COVID-19 public health emergency, states were offered extra federal funding for Medicaid so long as they did not kick most people off of the program. But with the end of the public health emergency in May, states are now working to redetermine whether each of their Medicaid beneficiaries continues to qualify for the program for the first time in years.

As of late August, states have disenrolled more than 5.5 million Medicaid beneficiaries, 74% of which were for procedural reasons like not completing required paperwork on time, according to data from KFF, a nonprofit that conducts health policy research.

The concerns raised by CMS center on what are known as “ex parte” renewals, or situations where state Medicaid programs are using existing data to automatically renew coverage for certain beneficiaries. The agency said it believes that eligibility systems in several states have programming errors so that automatic renewals are happening at the family level rather than the individual level.

As a result, states may be sending renewal forms directed at entire households even though certain individuals within the household should qualify for automatic renewal. In some cases, states have then proceeded to terminate coverage for those individuals if other members of their household have not adequately responded.

“Any state that conditions renewal of Medicaid eligibility for individuals in the household on the return of a renewal form, when such individuals’ eligibility has already been established based on available information via the ex parte process, is out of compliance with longstanding federal Medicaid and CHIP renewal requirements,” the guidance states.

CMS did not specify the states where the problem has been identified, but all states are being asked to review their systems and respond to the agency by Sept. 13.


What CMS' Minimum Staffing Standards Proposed Rule Means for SNFs

By Jasmyne Ray, Healthleaders, September 7, 2023

The proposed staffing minimum exceeds the existing standards in most states.

The Centers for Medicare & Medicaid Services' newly released proposed rule for minimum staffing standards for the nation's nursing homes could further exacerbate the long-term sector's workforce struggles.

Meant to be the Biden Administration's ongoing solution for nursing home quality, the Minimum Staffing Standards for Long-Term Care Facilities and Medicaid Institutional Payment Transparency Report has raised concerns among the post-acute sector as a "one-size-fits-all" approach that would not guarantee quality care and could negatively affect operations.

Under the proposed rule, it requires nursing homes to implement specific nurse staffing levels to provide care for residents:

  • Facilities would be required to provide a minimum of 0.55 hours of care from a registered nurse (RN) each day
  • Another 2.45 hours of care from a nurse aide, per resident per day (PPD)

CMS has noted that these standards are higher than existing standards in almost every state, and it will mean that 75% of nursing homes will have to strengthen their current staffing. It has been estimated that the costs for raising staff levels will be in the billions by critics of this proposal.

For skilled nursing facility administrators who are already experiencing workforce shortages and recruitment and retention challenges, this standard could cause undue burden for the nation's nursing homes. Administrators will have to find ways to squeeze money from already tight operational budgets to hire nurses or find alternative means of funding. Finding and hiring nurses post-pandemic is also a difficulty as many nurses retired or left the nursing profession altogether. Not having enough staff could also mean nursing homes would have to shut down their operations.


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State News:

California Spends $14 billion on People with Disabilities. Why Do Some Go Without Help?

By Maggie Angst and Mathew Miranda, The Sacramento Bee, September 07, 2023

For years, Ana Soto’s heart sank at the sound of the jingle from their neighborhood ice cream truck. If her son Max heard the chimes, she knew it was moments before he would take off running.

This left Soto, a San Joaquin County resident, with a difficult decision: chase after Max or stay put to watch over her youngest daughter. Max, who loves Spongebob Squarepants ice cream bars, was diagnosed at age 3 with autism and attention deficit hyperactivity disorder. Yet, it would take his mother 10 years to get him a designated in-home aide — a service that people with diagnoses like Max’s are lawfully entitled to.

“It’s been a constant battle to get services, years of obstacles,” Soto said.

In California, responsibility for finding services for people like Max sits with the state’s 21 regional centers — a $14 billion network of publicly-funded, privately-operated nonprofits that coordinate support for about 400,000 children and adults with developmental or intellectual disabilities.

The centers provide clients with speech and occupational therapy, daycare programs and job search assistance. They also offer respite and in-home help for parents and caretakers. Most services and supports should be free regardless of age or income. But families across California — especially those who are not White or do not speak English as their primary language — report persistent and often maddening roadblocks in trying to obtain assistance for loved ones with disabilities.

Failing to secure help can mean the difference between those with disabilities living independently and contributing to their community or languishing on the margins. Despite efforts to address the longstanding inequities, racial and ethnic gaps in service continue to widen.

Latino clients make up the largest share of California’s Regional Center clients, yet per capita, they receive significantly less funding than other racial and ethnic groups. For every dollar spent on White clients, Latino clients on average receive 41 cents, according to the most recent data from the Department of Developmental Services, which oversees the centers.

Latinos at Sacramento’s Alta Regional Center got about 43 cents per $1 for White clients in 2021-22 – a considerable dip from 62 cents in 2015-16.

“It’s only gotten worse in most cases,” said Brian Capra, a senior staff attorney with Public Counsel who has spent years analyzing the disparities in service delivery for California children with disabilities. “So the natural question is ‘Is there a better use of these funds?’”

A sweeping effort to reform the system and address some of these concerns cleared a major legislative hurdle last week and is expected to make it to Gov. Gavin Newsom’s desk for a final decision in the coming weeks. Regional centers, however, have succeeded in whittling down the proposed changes and remain staunchly opposed to the bill.

Read the full article here

California - Opinion: Time to Rein in the Broken Prior Authorization System

By Eric Ball, .M.D., Capitol Weekly, September 4, 2023

One of my patients was born with paralyzed vocal cords, unable to breathe on her own. Shortly after birth, she had to have a tracheostomy, a surgical procedure that involves making an incision in the patient’s neck to insert a tube used for breathing. While the operation was successful, that surgery was unfortunately just the beginning of her travails with our health care system.

Living with a tracheostomy requires intensive and ongoing care. Unfortunately, for this little girl, and many like her, the bureaucracy of insurers has made this care more difficult to obtain. We are often required to complete prior authorizations, a process in which a provider must ask an insurer permission to obtain a service, test, or treatment. Her family and I have spent countless hours navigating phone trees, filling out forms, and appealing decisions.

When she had an infection in her tracheostomy, her care was delayed by days causing this infant girl extreme pain as we sought approval for the appropriate antibiotic. Medical supplies are often delivered late as we struggle for insurance approval. Requests for surgeries and procedures have been denied, only to be eventually allowed after weeks of appeals and paperwork. Not only does this process take valuable time that I could be spending caring for other patients, but it transfers critical medical decisions from patients and physicians to a corporate entity.

Living with a child with special needs is difficult, but dealing with an insurance system whose primary goal is to increase profits makes this so much tougher. Insurance companies often issue quick denials to see if the physician or patient will give up while holding onto their money during the appeals process.

Senate Bill 598, by Senator Nancy Skinner, would remedy this situation by ensuring appropriate medical treatments and health care are provided in a timely manner.

California is not alone in recognizing prior authorization procedures have gotten out of control and are hurting patients. Thirty states have introduced nearly 90 bills aimed at reforming prior authorization. And in fact, Texas recently passed its own law to change prior authorization rules.


Texas - Opinion: Impossibly Low Wages Hurt Community-Based Caregivers and Clients

By Cody Clark, Texas Observer, September 5, 2023

Our state Legislature has failed to fund attendant caregiver wages for people who provide care for individuals with intellectual and developmental disabilities (IDD). 

Despite Texas having a $33 billion budget surplus, despite Governor Greg Abbott saying that addressing low attendant wages was among the most important legislative goals of the session, despite provider agencies only receiving less than 1 percent of an adjustment to their fundamental rates over the last 12 years or six sessions, our legislators allocated only $10.60 per hour for provider agencies to hire staff who then provide comprehensive, necessary, and life-sustaining support to those with intellectual and developmental disabilities. This rate of pay is $5 per hour less than the starting pay of a new Dairy Queen employee in Austin.

Due to inadequate wage rates, several provider agencies at a recent hearing in Austin told Texas Health and Human Services Commission (HHSC) officials that they are experiencing 30 percent of their group home shifts being unstaffed while administrators are working in the direct attendant gaps to ensure clients’ needs are met. One provider agency testified that, while covering an unstaffed shift in a group home, their administrator had a finger bitten off. While surprising to the average Texan, it is par for the course for those who work in the industry.

Our legislators, presumably, believe that people who are supposed to ensure intellectually disabled individuals receive their medications, that special needs training and behavioral intervention plans are understood and implemented, as well as shop for and prepare meals to the appropriate texture (while taking into consideration dietary restrictions), facilitate transportation needs, that wash urine-soaked bedding, and meet the hygienic requirements (including wiping feces off an individual) should be paid less than a teenager who works at a fast-food restaurant.


Massachusetts Top Court Allows Electric Shock Therapy for Disabled Patients

By Brendan Pierson, Reuters, September 8, 2023

A Massachusetts institution for the developmentally disabled can continue to use controversial electric shock devices to address aggressive or self-harming behavior in residents, the state's highest court ruled Thursday, though it left the door open to future challenges.

In a unanimous ruling Thursday, the Supreme Judicial Court of Massachusetts upheld a 2018 lower court ruling that the state acted in bad faith in regulating the Canton-based Judge Rotenberg Educational Center. JRC, which provides education and treatment to people with development disabilities and behavioral disorders, is the only institution in the country to use the treatment.

The lower court judge, Katherine Field of Bristol County Probate Court, had found that high-ranking officials at the state's Department of Developmental Services in 2010 altered a report by staff to remove a finding that JRC was in "substantial compliance" with state requirements, and that the department in 2011 tried to impose a moratorium on the use of shock treatment for new patients without reviewing scientific evidence.

The department has for decades sought to end the shock therapy treatment, which is supported by families of residents who say it is the only option for loved ones who would otherwise need to be constantly sedated or restrained.

"The ruling ensures that the lifesaving, court approved electrical stimulation device treatment remains available to those for whom all other treatment options have been tried and failed," Michael Flammia, a lawyer for JRC, said in a statement.


Massachusetts - Latest Supported Decision Making Bill Offers No Improvements over Previous Versions

By David Kassel, The COFAR Blog, September 7, 2023

We first pointed out problems seven years ago with a bill in the state Legislature that would authorize Supported Decision Making (SDM) in Massachusetts.

SDM involves written agreements to replace guardians of persons with developmental disabilities with informal teams of “supporters” or advisors.

Each year, SDM legislation has gotten closer and closer to final passage in the Legislature; and yet, as far as we can see, the proponents of the bill have not made what we argue are needed changes or improvements to the versions of the bill that they have continued to file.

This year’s version of the bill, S. 109, is no exception. In our view, it has the same problems as the previous versions.

Last year’s version of the bill (S. 3132) passed the Senate in November and died in the House Ways and Means Committee, just one step away from final passage in the full House. At the time, we had urged the Ways and Means Committee not to send the bill to the House for final passage.

As we noted in a previous post about that bill, it lacked provisions to protect the rights of persons with intellectual and developmental disabilities, and their families and guardians.

S.109, this year’s version, is now before the Children, Families, and Persons with Disabilities Committee. We are similarly asking the Committee this year not to advance the bill in the legislative process without making needed changes to it.

Under the bill, an SDM “supporter” or “supporters” would help an individual with an intellectual disability, known as the “decision-maker,” make key life decisions, including decisions about their care and finances. Most people with developmental disabilities currently have guardians, most of whom are family members of those individuals. But SDM proponents maintain that guardianship, even when guardians are family members, unduly restricts an individual’s right to make those decisions.

But persons with severe and profound levels of intellectual disability have greatly diminished decision-making capacities. We think many of those people are likely to be vulnerable to coercion and financial exploitation from persons on their SDM teams who may “help” them make financial decisions that don’t reflect their wishes.

In these situations, family members of persons with developmental disabilities, whom we have found to be likely to act in the best interest of their loved ones, may find themselves outvoted on the support teams by other team members who may stand to benefit financially from the clients’ “decisions.”


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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