May 12, 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 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 Schedule:

11:30 am - Open meeting of the VOR Board of Directors

Reports from our President and Committee Chairs

Moderated by VOR President Joanne St. Amand &

Executive Director Hugo Dwyer


This Year's Guest Speakers:

12:30 pm - Congressman Glenn Grothman - (R-WI)

Rep. Grothman will speak about two bills he has introduced in Congress, and how to support his efforts to preserve 14(c) employment opportunities

1:30 pm - Rep. Charlie Meier (Illinois General Assembly)

Rep. Meier will speak on the bills he has introduced in the state legislature and how they will improve safety and oversight for people with

I/DD and autism

2:30 pm - Amy S. F. Lutz, PhD.

Dr. Lutz will share with us her experiences with Severe Autism, both personal and professional, and give us an advanced peek at her new book:

Chasing the Intact Mind

How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most


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.

3:30 - 5:30 - Reports from the States

VOR Members share news about the state of their state

Moderated by Roslyn Leehey

Those wishing to participate may submit their reports to

[email protected]

(Speakers and times for this event are subject to change)

This event is open to all. Registration will begin shortly.

You do not need to be a member of VOR to attend this meeting.

You do not need to donate to VOR if you would like to attend this meeting.

You don't even have to register to attend this meeting.

But if would make us happy if you were to do so.

VOR's 2023 Annual Legislative Initiative

This year's Legislative Initiative is in full swing. Our advocates have been holding virtual meetings with their congressional staff members and committee staffers, and will continue to do sou throughout the month of May.

We humbly thank all of those who are giving their time and their hearts to this year's initiative.

State News:

Texas - Commentary: Caleb’s Law Seeks to End Profound Injustice

By D'Anne & David Thompson, San Antonio Express-News, May 9, 2023

We write this commentary to illuminate a profound injustice placed on Texas parents who seek to obtain guardianship of their profoundly intellectually disabled children who turn 18.

We hope our legislators will be convinced to help — rather than punish — similar parents, instead of rewarding the industry that profits from our situations. We have told our story repeatedly, and the reaction is the same: disbelief, outrage and support. Democrats, Republicans, Christians, atheists, rich, poor — if ever there was an issue to unite all Texans, this is it. 

When a profoundly intellectually disabled child turns 18, the parent-child relationship is legally severed, leaving parents with the responsibilities of care, but without the legal recourse to do so. Sounds crazy, right? For parents like us, it’s a nightmare. Our children still need us to care for them, yet legally they become wards of the state on their 18th birthday.

In the past, ward of state status was generally assigned to the incapacitated who were indigent and had no family to care for them. Giving the child over to the state was a last resort. Not so anymore. For these adult children, parental rights are terminated for no reason, amounting to legal kidnapping requiring the payment of a ransom (ours was more than $5,000).

When our son Caleb turned 18 on July 28, 2018, he was hospitalized, ventilated and completely sedated due to breakaway seizures. The hospital staff asked us for proof of guardianship; otherwise, we would be asked to leave his room. Legally, as a “new” adult he is able to make his own decisions and we, as his parents, could not intercede without guardianship.

We started the process of obtaining guardianship in early January 2018, but by his birthday, the intrusive, costly and time-consuming process had not been completed by the court. We were allowed to stay only after providing proof that we had started the process to legally care for Caleb as we had been doing since his birth.

Caleb recovered from this nightmarish episode. We cannot say what would have happened had the hospital forced us to leave his side due to the single tick of a clock and prohibited us from making these life-impacting decisions.

Two years ago, we decided to help families by going to elected officials to create a less punitive, less costly and streamlined pathway to guardianship that would allow all parents to continue to care for their profoundly intellectually disabled children. We finally met with state Rep. Steve Allison, our honorable representative who readily agreed that the process for these parents should be tweaked to make it easier for parents to obtain guardianship while respecting the rights that accompany adulthood. In 2021, Caleb’s Law (HB 1675) easily passed the House but died in the Senate.

We’re back with Caleb’s Law in 2023 with House Bill 653. Despite hard pushback from the profiteers, HB 653 easily passed the House. We hope the Senate will understand how the current process blatantly discriminates against families with profoundly intellectually disabled children by treating all guardianships the same. The system does not consider the: severity of the intellectual disability, person(s) seeking the guardianship and years of documentation by mandatory reporters who regularly interact with our families. 


Can California Find Better Paying Jobs for People with Disabilities?  

By Jeanne Kuang, Cal Matters, May 10, 2023

A new state law aims to ensure workers with disabilities earn at least minimum wage. But some worry that the state doesn’t have enough resources to help these workers compete for jobs.

At a warehouse tucked into a suburban Bay Area office park, along white folding tables lined up like an assembly line, about 50 people on a March morning snapped together plastic pieces of bicycle safety mirrors or stuffed envelopes with a nonprofit’s donor letters.

The tasks were simple, but it’s work.

The laborers are all adults who have intellectual or developmental disabilities, performing jobs under contract for local businesses and nonprofits. VistAbility, the nonprofit employment services provider that runs the shop, pays them each $3 to $14 an hour, depending on their speed. 

The arrangement is legal — for now. 

Thanks to a 2021 law change, California will soon ban paying subminimum wages to people with disabilities, a decades-old practice originating from the Great Depression. 

By 2025 “sheltered” disability programs like the one at VistAbility — which together employ about 5,000 Californians statewide — must begin paying the state’s $15.50-an-hour minimum wage or shut down.

The transition toward better pay has exposed a bitter debate within the state’s disability services community: Can everyone with a disability get a job in the broader labor market — and should that be the goal? And for a group of people largely receiving public assistance, what’s the role of a job in their lives?

John Bolle, VistAbility’s executive director, said when his workshop is required to pay minimum wage, some of the faster workers may be able keep working. But he doubts local businesses and nonprofits will pay more expensive contracts to accommodate higher wages, and he predicted those with the most significant disabilities likely will lose their jobs.

“The state is essentially ignoring those people,” he said.

Opponents of subminimum wage programs like Vistability’s say they segregate people who have disabilities, keeping them from obtaining better paying work and greater independence — which they could achieve with the right services to assist them.

On the other side, program operators and some workers’ families defend the current arrangements, saying these workers would not otherwise have job opportunities. About 20% of people who have developmental disabilities in California are employed, the state’s Department of Developmental Services says. 

Chris Bowers’ 42-year-old son, Cory, was one. He worked for nearly 20 years for less than minimum wage at an Orange County retail store, where an employment services provider placed him. Recently that provider shut down its subminimum wage programs, ending his job.


Now Bowers can’t imagine his son, who has Down syndrome, finding a job like that one, which provided transportation and a job coach.

“There’s no avenue for our kids to go to a job site, other than somebody’s going to have to pay them $16 an hour,” Bowers said. “He can’t do the job of somebody that’s earning $16 an hour. It’s just not going to happen.”

State resources for workers with disabilities 

The new law requires that all subminimum wage workshops phase out. Whether their participants end up in better jobs, or with little to occupy their days, in large part depends on how California’s disability services system responds. 

The Department of Developmental Services, which pays for these services, says it is ramping up funding so providers of job placement services can get those currently working for less than minimum wage into “competitive integrated employment” — that is, working for at least minimum wage alongside coworkers who don’t have disabilities. 

But if the past is prologue, the Legislative Analyst Office notes such resources are under-utilized. 

The office analyzed state-funded competitive integrated employment programs for workers with disabilities — including paid internships — and found that service providers used only 60% of the funds allocated in the 2021-2022 fiscal year. And that was the most spent in each of the last five years. 

“We have to set a new direction for our entire system, where employment is the expectation for everyone,” said Brian Winfield, its director of programs.

But many worry that when workshops go away, there won’t be enough job placement services to go around. The disability services system is underfunded and understaffed, said Barry Jardini, director of the California Disability Services Association.

“A lot of the challenge is around whether or not we have the policies in place in California today to make it possible on a broad scale to provide the intensive (worker) supports and job discovery, job exploration,” Jardini said. “Right now all of this policy change is being overlaid on a very stressed system.”

Read the full article here

West Virginia DHHR working on Plans to Keep Disabled out of State Hospitals

By Steve Allen Adams, News and Sentinel, May 8, 2023

After lawmakers and advocates raised alarm bells about the number of West Virginians with intellectual and developmental disabilities being placed in state-run mental hospitals, the Department of Health and Human Resources is working to address those concerns.

Members of the Legislative Oversight Commission on Health and Human Resources Accountability heard from DHHR officials Sunday afternoon during the first May interim meetings at Marshall University in Huntington.

The commission heard from Christina Mullins, DHHR’s deputy secretary of Mental Health and Substance Use Disorders, and Bob Hansen, former director of the West Virginia Office of Drug Control Policy for DHHR. Hansen last week began working as a special assistant to DHHR, serving as a liaison between the department, intellectual and developmental disability (IDD) patients, service providers, state hospitals, and advocacy organizations.

DHHR began meetings with Disability Rights West Virginia in February with new meetings every two weeks. DRWV serves as the designated federal Protection and Advocacy System agency that provides third-party monitoring of state agencies that serve the disabled.

DHHR manages two psychiatric hospitals: William R. Sharpe Jr. Hospital in Weston and Mildred Mitchell-Bateman Hospital in Huntington. Meant for patients on short-term mental health issues and violent patients, the hospitals have been increasingly used to house non-violent IDD patients for long periods of time.

By the end of 2022, there were 88 IDD patients between Bateman and Sharpe hospitals according to DRWV. Advocates maintain that these patients – some of whom are dropped off at state hospitals by providers who decide they cannot care for these individuals – should not be kept in these mental hospitals. Hansen said he has already been to Bateman and will visit Sharpe next week.

“I want to meet individually with each patient who has an IDD and who has been civilly committed to the state hospitals,’ Hansen said. “I want to find out what their disabilities are, what their challenges are, and what the discharge plans are for each individual.”

The Legislature passed Senate Bill 232 during the 2023 session to create a multi-disciplinary study group to make recommendations regarding the diversion of IDD patients in the state’s prisons, jails, and court-ordered placement in the state’s psychiatric hospitals. The study group would develop placement recommendations for inmates and persons with IDD. The bill also requires development of a plan to coordinate care, treatment, and placement for persons with IDD in the criminal justice system and in the community.

The relationship between DHHR and DRWV grew strained under the leadership of former DHHR cabinet secretary Bill Crouch, who resigned at the end of last year. Crouch publicly attacked DRWV at two legislative interim meetings last year and instructed staff not to respond to DRWV requests for information without getting approval. Crouch also tried to put pressure on West Virginia Public Broadcasting to retract a story based on DRWV claims.

Read the full article here

Related Story:

West Virginia - Workforce Shortages, Forensic Group Homes among Topics Discussed in Interim Health and Human Services Accountability Committee Meeting

By Chase Campbell, WTAP News, May 7, 2023

The interim committee on Health and Human Resources Accountability convened at Marshall University on May 7 to hear presentations from Department of Health and Human Resources Officials.

Christina Mullins, DHHR’s Deputy Secretary of Mental Health and Substance Use Disorders, discussed West Virginia’s behavioral health continuum of care as overseen by DHHR. “Just to kind of set the stage about the behavioral health continuum of care in West Virginia, it refers to a range of services and support available for individuals with behavioral health conditions, from prevention and early intervention to treatment and recovery,” Mullins explained.

Mullins said that while DHHR is making ongoing efforts to expand the breadth of their services, including a planned behavioral health unit for children in Clarksburg, the department is plagued by widespread workforce issues. “Workforce shortages, we really have to talk about them, because they’re so pervasive at every level of care, from direct care staff in group homes to psychiatry services,” she said. “We do not have enough of any single workforce type.”

Mullins said that these workforce issues persist even in higher paid positions. She told WTAP about some of the efforts DHHR is making to address the shortages. “We’re offering loan repayment programs,” Mullins said. “We’re trying to work with providers to double down on provider recruitment in high priority areas. But the bottom line is, is that we have real workforce shortages due to low workforce participation rates.”

During her presentation, Mullins said she was concerned that low college enrollments could further exacerbate these workforce issues down the road.

When the floor was opened for question, Cabell County Senator Robert Plymale asked how DHHR could go about providing information about forensic group homes to citizens and elected officials.


Oklahoma - Nursing Homes and Facilities for People with Intellectual Disabilities Face Funding Cuts as Health Emergency Ends

By City Sentinel Staff, City Sentinel - Oklahoma City, May 11, 2023

The COVID-19 Public Health Emergency (PHE) ends today (Thursday, May 11), leaving Oklahoma nursing homes and facilities that care for the intellectually disabled facing a steep funding cliff unless lawmakers are able to provide additional financial aid.


The ongoing PHE allowed nursing homes to tap federal supplemental funds of approximately $36 a day per Medicaid resident, helping facilities deal with the skyrocketing costs of equipment and labor during the pandemic.


Those funds will be paid out by the Oklahoma Health Care Authority (OHCA) through June 30 of this year, but will be unavailable after that.


Unfortunately, the advocacy group "CARE Providers Oklahoma" says "financial analysis shows that the supplemental payments still fell short of the cost of care."


The group shared its conclusion in a press release sent to The City Sentinel newspaper.


Beginning July 1, the OHCA projects that the cost of treating a typical Medicaid resident in a skilled nursing facility will be $246 a day.


Without the federal PHE funding, however, skilled nursing facilities will now receive only $189 per resident per day, a $57 gap in the estimation of the CARE group.


Similarly, facilities for people with intellectual disabilities will be paid less than their reported costs.


Care Providers Oklahoma President and CEO Steven Buck says the current funding situation is untenable and is asking lawmakers to include funding to save nursing homes in the budget they are currently crafting. The group and other advocates this week called on lawmakers to increase funding and avoid mass closures in nursing care facilities.


“The cost of labor in the skilled nursing profession has risen astronomically in the last two years,” said Buck.


“We’ve already seen facilities unable to keep up with skyrocketing costs that have been forced to close.

"Now, on top of all those challenges, we are about to experience what amounts to a practical funding cut of almost 20 percent beginning July 1. That is just not something our facilities can sustain.


"We have got to get funding levels up to the point where they are at least covering the cost of care. If we cannot, there will be mass closures.”


Buck said nursing home closures are traumatic for communities, families and vulnerable Oklahomans.


“Every time one of these facilities closes, especially in a rural area, you are losing one of the biggest employers in town. Second, you are forcing a family to find another option for a vulnerable loved one, and perhaps moving Grandma or Grandpa to a facility that isn’t ideal or is much farther away. Lastly, you are telling a resident that they can no longer live in their home. We don’t want to experience this kind of trauma across the state.



Pennsylvania - Direct Support Professionals, Providers Seeking $430 Million in Pa Budget

By Brendan Scanland, WENY News, May 5, 2023

In Pennsylvania, there are over 50,000 direct support professionals (DSPs) who provide care to tens of thousands of adults with autism or an intellectual disability. However, a funding crisis is making it extremely difficult to provide the essential care that so many depend on. 

“My daughter can’t even roll over without assistance. Imagine that being you when your morning staff doesn't show up and there is no one else,” said Lisa Butler. 

For Butler, and her daughter Sophia, DSPs are a lifeline. But with limited funds, many of these essential providers cannot afford to hire and retain workers, and are struggling to compete with companies who can.  

“The person asking ‘do you want fries with that’ should not earn more than someone who cares for our citizens, our friends, our children,” said Butler. 

State funding through the Department of Human Services (DHS) is a lifeline for DSPs and the services they provide. But this year, there's one major problem.  

“We did not receive any additional funding for direct support professional wages,” said Sherri Landis, Executive Director for the ARC of Pennsylvania.  

Landis says providers need a $430 million budget increase, about 20 percent, for wages to prevent a full collapse of the system.  

Without the increase, providers say 60,000 individuals are at risk of reduced essential services, or worse, losing those services altogether. More than 4,000 individuals have been dropped by providers just in the last three years. 

Advocates say the $430 million increase would not only resume services for the 4,000+ that have been dropped, but would also help the additional 12,000 individuals on the waiting list. Almost half on the list are categorized as “emergency need.” 

Providers say they can’t simply raise prices to increase wages because their services are funded primarily by Medicaid. They say inadequate rate fees imposed by the state do not cover the true costs of their services. 

Read the full article here

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?

Is there legislation in your state house that needs attention?

Contact us at [email protected]

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