April 28, 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


There's a whole lot to unpack in this week's newsletter. The CDC has acknowledged the classification of "Profound Autism". New bills are being introduced in Congress, which is currently mired in budget battles. The General Accounting Office (GAO) has released a report on Medicaid Expenditures for Adults with I/DD. CMS is updating its quality measures for HCBS. Facilities in Texas are closing due to the lack of DSPs, California is failing some of its most vulnerable, Indiana is trying to prevent abuse, you're being invited to a pancake breakfast to raise funds for a sheltered workshop, and there's a new Barbie.

But first, here's a word about two important events we hope you will actively participate in:

There will be a meeting of the

President's Committee for 

People with Intellectual Disabilities



May 1, 2023

Noon - 5:00 pm ET

on Zoom

We encourage our members to attend, and to identify their names as being members of VOR, both in the Zoom window and in the chat.

We need to make our presence known.

The PCPID, though ostensibly an independent entity, has been overseen & facilitated by the Administration for Community Living.

If we do not show up, our loved ones will not have a seat at the table. 

For more information, 

Click Here

To register for the meeting,

Click Here

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 www.vor.net for further information,

to register or become a sponsor,

or to download our updated conference materials

National News:

‘Profound Autism’ Accounts For More Than 1 In 4 Cases, CDC Finds

By Michelle Diament, Disability Scoop April 24, 2023

With a new report, the Centers for Disease Control and Prevention is tacitly embracing a recently coined autism classification and providing a first-of-its-kind breakdown on the number of kids on the severe versus milder ends of the spectrum.

Researchers from the federal health agency published a study this month in the journal Public Health Reports indicating that 26.7% of children with autism have what’s known as “profound autism,” meaning that they are nonverbal, minimally verbal or have an intelligence quotient of less than 50.

Other kids with the developmental disability have more mild presentations, the study found.

The term profound autism is new, with an international panel of experts first calling for the distinction in an article published in The Lancet in late 2021. They argued that the needs of people on the spectrum who require 24-hour care are being obscured by being lumped into the same diagnostic category as individuals who are capable of earning college degrees.

The latest research is based on data collected through the CDC’s Autism and Developmental Disabilities Monitoring Network, which regularly conducts surveillance on the prevalence of autism among 8-year-olds in select communities across the country. For the study, researchers looked at information from 20,135 kids with autism across 15 sites who were age 8 between 2000 and 2016.

“We saw this as an opportunity to use CDC’s ADDM Network data to bring data to the discourse around profound autism to better describe those who met The Lancet commission’s profound autism criteria and changes in prevalence over time,” said Michelle Hughes, an epidemiologist at the CDC’s National Center on Birth Defects and Developmental Disabilities who led the study.

The study found that the prevalence of both profound and non-profound autism grew over time, but the increase was more substantial for children with milder presentations.

“This means that over time, there has been a lower proportional representation of those with profound autism compared to those with non-profound autism,” Hughes said.

Kids with profound autism were more likely to be girls, be from racial and ethnic minority groups and come from households with lower socioeconomic status, the researchers found. These children also were more commonly born early or at low birth weight and to have self-injurious behaviors, seizure disorders and lower adaptive scores.

“We need to know how many people have profound autism so that we can properly plan for their school and residential needs and improve the services they receive,” said Alison Singer, president of the Autism Science Foundation and a co-author of the new report and a member of The Lancet commission. “Their needs are going to be very different than those of an autistic person graduating from Harvard Law School.”


Disability Programs At Risk In Federal Budget Battle, Advocates Warn

By Michelle Diament, Disability Scoop April 28, 2023

After the U.S. House of Representatives passed a plan this week to slash federal spending and raise the nation’s debt ceiling, advocates say access to Medicaid and other disability programs could be imperiled.

The move comes as the government heads toward defaulting on its debts, potentially as soon as this summer, unless Congress acts. Republicans have been refusing for months to raise the debt ceiling — the amount of money that the government is permitted to borrow — without cutting spending. Meanwhile, President Joe Biden has insisted that he will not negotiate over the debt limit.

Now, however, the measure passed by the House serves as a means for Republicans to pressure Biden to come to the table. And, the situation has disability advocates increasingly on edge.

“I have never been more concerned about the budget negotiations than I am at the moment,” said Kim Musheno, vice president of public policy at the Autism Society of America. “The House of Representatives leadership is demanding significant cuts to programs important to people with disabilities and families in exchange for lifting the debt ceiling for one year, in essence using the full faith and credit of the country as a cudgel to demand cuts to programs important to American families.”

The bill approved by the House known as the Limit, Save, Grow Act would impose work requirements on many Medicaid beneficiaries, compromising access to health care and home and community-based services for people with disabilities, advocates say.

Medicaid beneficiaries with disabilities and their parents and caregivers may qualify for exemptions under the plan, but determining who is eligible for an exemption and cutting through the red tape to secure one would add a significant burden and increase the odds that people will lose their coverage, disability advocates say.

The plan is not expected to see life in the Senate and the White House has already said that Biden would veto the measure.

Nonetheless, disability advocates are alarmed by the effort to compromise services for this population.

Read the full article here

General Accounting Office (GAO) releases new report:

Medicaid: Characteristics of and Expenditures for Adults with Intellectual or Developmental Disabilities

Why GAO did this study:

Medicaid is the nation's primary payer of long-term services and supports, including HCBS programs, for individuals with intellectual or developmental disabilities. Medicaid spending for these services was estimated at $23 billion in fiscal year 2018, the most recent year of nationwide estimates available. States are permitted to limit enrollment in certain HCBS programs and establish waiting lists. Research has shown people with intellectual or developmental disabilities comprised the majority of individuals on waiting lists for HCBS programs as of 2021, with wait times averaging over 5 years.

GAO was asked to provide information about the characteristics and health care expenditures among Medicaid beneficiaries with intellectual or developmental disabilities with long-term care needs. For selected states, this report describes (1) health and demographic characteristics, and (2) health care expenditures for adults with intellectual or developmental disabilities enrolled in Medicaid HCBS programs in 2019.

GAO analyzed Medicaid data for 2019, the most recent finalized year of data that preceded the COVID-19 pandemic, for six states. States were selected based on, among other things, having at least one HCBS program covering nonelderly adults with intellectual or developmental disabilities in 2019, and having data in the federal Medicaid data system of sufficient detail and quality to conduct analysis.

Click here for more information, and to download the Summary or the Full Report

CMS Proposes Mandatory Quality Measures, Other Changes to HCBS Program   

By Loia A. Bowers, McKnight's Senior Living, April 27, 2023

Some quality measures for home- and community-based services would become mandatory under a proposed rule announced Thursday by the Centers for Medicare & Medicaid Services. Several other changes related to HCBS were proposed as well.

CMS proposes requiring states to report every other year on the HCBS quality measure set for their HCBS programs. The agency said that the measure set would be updated “at least every other year” in consultation with states and other interested parties.

CMS released its first-ever quality measure set for HCBS in July 2022, saying at the time that although the measures were voluntary, they were expected to become mandatory in the future. At the time, the agency “strongly” encouraged states to use the standards to assess and improve quality and outcomes in their HCBS programs.

The introduction of the measures, provider groups said then, came amid “longstanding, chronic underfunding” of HCBS that led to provider workforce shortages. The financial issue needed to be addressed, the groups said, noting, however, that they supported the quality improvement effort in general.

[O]n Thursday, CMS unveiled two proposed rules, which the agency said are meant to “further strengthen access to and quality of care across Medicaid and the Children’s Health Insurance Program (CHIP), the nation’s largest health coverage programs.”

Specifically, HCBS-related provisions, according to CMS, would:

  • Establish a new strategy for oversight, monitoring, quality assurance and quality improvement for HCBS programs;
  • Strengthen person‑centered service planning and incident management systems in HCBS;
  • Require states to establish grievance systems in fee-for-service HCBS programs;
  • Require that at least 80% of Medicaid payments for personal care, homemaker and home health aide services be spent on compensation for the direct care workforce (as opposed to administrative overhead or profit);
  • Require states to publish the average hourly rate paid to direct care workers delivering personal care, home health aide and homemaker services;
  • Require states to establish an advisory group for interested parties to advise and consult on provider payment rates and direct compensation for direct care workers;
  • Require states to report on waiting lists in section 1915(c) waiver programs; service delivery timeliness for personal care, homemaker and home health aide services; and a standardized set of HCBS quality measures; and
  • Promote public transparency related to the administration of Medicaid‑covered HCBS through public reporting of quality, performance and compliance measures.

Read the full article here

Read the CMS Notice here

Kaine Leads Introduction of Bill to Support Direct Care Workforce & Family Caregivers

Press release from the office of Senator Tim Kaine, April 26, 2023

Today, U.S. Senator Tim Kaine, a member of the Senate Health, Education, Labor and Pensions Committee, led the reintroduction of the Supporting Our Direct Care Workforce and Family Caregivers Act, legislation to support the recruitment, training, and retention of direct care workers and family caregivers.

“Families throughout Virginia and across America rely on the support of our direct care workers and family caregivers,” said Kaine. “When these workers aren’t able to stay in their field, those families—and our economy—suffer. That’s why I’m leading this legislation to help us address the root causes of shortages in our care system and ensure that our hardworking direct care workers and family caregivers can keep delivering their much-needed services.”

Low wages and high turnover have long contributed to staffing shortages in the direct care workforce, which provides crucial support to older Americans, people with disabilities, and other individuals with chronic conditions. Direct care workers include home health and personal care aides and certified nursing assistants who provide long-term care services. Family caregivers are individuals who provide at-home assistance—such as help feeding, grooming, or providing transportation—to a family member, partner, or friend. In 2021, the median hourly wage for direct care workers in Virginia was $12.34. Now, with a growing number of older adults and people with disabilities in the U.S., shortages threaten to impact even more families.

Investments in recruitment and retention strategies such as better pay and benefits, education and training enhancements, and better career advancement opportunities can help address the workforce shortage and help more families get the care they need. Specifically, the Supporting Our Direct Care Workforce and Family Caregivers Act would: 

  • Direct the Department of Health and Human Services, through the Administration on Community Living (ACL), to award grants to states or other eligible entities for initiatives to build, retain, train, and otherwise promote the direct care workforce and to provide grants for states or other eligible entities for educational and training support for both paid and unpaid family caregivers.
  • Direct ACL to develop a center to offer technical assistance to grant awardees and other entities interested in direct care workforce development and in supporting family caregivers. The assistance at the center includes:
  • Working with states, key stakeholders, and other interested entities to establish career development and advancement strategies for direct care professionals, which may include national standards, recruitment campaigns, pre-apprenticeship and on-the-job training opportunities, apprenticeship programs, specializations or certifications, or other activities.
  • Exploring the workforce shortage areas for direct care professionals.
  • Developing recommendations for training and education curricula for direct care professionals and family caregivers.
  • Disseminating information and best practices from lessons learned through the grants.

To read the full press release, click here

To read the bill text for the Supporting Our Direct Care Workforce and Family Caregivers Act, click here. 

Reps. Meng, Fitzpatrick, Cuellar, And Molinaro Introduce Bipartisan Legislation To Provide Skills Training For Caregivers Of Children With Autism

Press release from the Office of Representative Grace Meng, April 27, 2023 

oday, U.S. Reps. Grace Meng (D-NY), Brian Fitzpatrick (R-PA), Henry Cuellar (D-TX), and Marc Molinaro (R-NY) reintroduced the Autism Family Caregivers Act, a bipartisan bill that would provide access to caregiver skills training for family members who care for children with autism spectrum disorder or other developmental disabilities or delays.

The measure would establish a five-year pilot program that would award grants to nonprofit organizations, community health centers, and hospital systems to provide evidence-based caregiver skills training to family caregivers of children with autism or other developmental disabilities or delays.

Caregiver skills training teaches family caregivers how to use everyday routines and home activities to improve the mental and physical well-being of children with autism and other developmental disabilities or delays, and their caregivers, by addressing communication skills, daily living skills, social engagement, and behavior management.

“To ensure that children with autism spectrum disorders or other developmental disabilities are provided the tools they need to reach their full potential, we must provide their caregivers with the right skills and resources,” said Rep. Meng. “My bipartisan Autism Family Caregivers Act is a demonstration of Congress’ commitment to those who give endless amounts of their time and energy to help their loved ones live more complete lives. I am proud to join my colleagues in reintroducing this important bill.”

“Families nationwide act as caregivers for loved ones with developmental disabilities, and we must ensure that adequate training resources are readily available,” said Rep. Fitzpatrick. “I am proud to join my colleagues on the bipartisan Autism Family Caregivers Act to assist those who selflessly care for their disabled family members and loved ones.”

Click here to read the full press release

Click here to download a copy of the bill

In addition to the House legislation, a bipartisan companion bill was introduced in the Senate led by Senators Bob Menendez (D-NJ) and Susan Collins (R-ME).

Click here to read Senator Menendez' press release

Click here to download the Senate version of the bill

Opinion: A Proposal to Change Medical Training Will Affect Autism Care

The prevalence of autism and other developmental disorders is rising. Changing who teaches early-career pediatricians about these issues will negatively affect children’s health

By Reshma Shah and Sarah C. Bauer, Scientific American, April 27, 2023

In the U.S., almost 20 percent of children have developmental delays, including autism spectrum disorder (ASD), ADHD, learning disabilities or speech and language disorders. These disorders are usually diagnosed in childhood and have specific and time-intensive treatments based on severity.

The prevalence of some of these disorders is rising, including autism. The Centers for Disease Control and Prevention recently announced that an all-time high of one in 36 children have this condition. General pediatricians play a crucial role in identifying early signs of these conditions and making referrals based on developmental screening and surveillance, because early intervention can change a child’s prognosis.

Once a general pediatrician suspects a diagnosis of autism or ASD, they will often refer families to developmental and behavioral pediatricians like us for more specialized or intensive evaluation, as well as ongoing care. But our field is in trouble, and if it doesn’t survive, general pediatricians will have to manage developmental conditions, on top of everything else they already do, with less comprehensive training. We worry that changes affecting our field will leave many children without the most thorough care that developmental and behavioral pediatrics can offer.

Currently, board-certified developmental and behavioral pediatricians are responsible for teaching pediatric residents about child development and developmental disorders. Studies have estimated that one in four families have concerns about their child’s development, so the training that clinicians with our depth of experience and knowledge provide is critical. But the governing body that sets those requirements, the American College of Graduate Medical Education, wants to eliminate this requirement, turning that training over to general pediatricians instead. We anticipate this move will lead to delayed and insufficient diagnoses and treatments for children. 

As part of this training, we spend one or two months with these residents to help them both understand disorders like autism and how to recognize early signs of it. We teach them about evidence-based treatment recommendations, including ones that we use regularly. Even though it’s not enough time to share all we know, developmental and behavioral pediatricians serve to help general pediatricians recognize these childhood disorders and refer them for evaluation more confidently.

We do not ask general pediatricians to be the sole educators of how to treat childhood cancer, seizures or diabetes, and yet this is what the college is proposing with regards to developmental disorders.


Mattel Introduces First Barbie with Down Syndrome

By Wyatte Grantham-Philips, Associated Press

April 25, 2023

Toy company Mattel revealed its first Barbie doll representing a person with Down syndrome on Tuesday.

Mattel collaborated with the National Down Syndrome Society to create the Barbie and “ensure the doll accurately represents a person with Down syndrome,” the company said.

Design features of the new Barbie were made under guidance from NDSS, Mattel said. In addition to portraying some physical characteristics of a person with Down syndrome, the Barbie's clothing and accessories carry special meaning.

The blue and yellow on the doll's dress, accompanied by butterflies, represent symbols and colors associated with Down syndrome awareness. And the three chevrons on the Barbie's necklace represent how people with Down syndrome have three copies of their 21st chromosome, Mattel said.

In addition, the Barbie wears ankle foot orthotics, which some children with Down syndrome use.

“This means so much for our community, who for the first time, can play with a Barbie doll that looks like them," NDSS President and CEO Kandi Pickard said in a statement. “This Barbie serves as a reminder that we should never underestimate the power of representation.”

According to the Centers for Disease Control and Prevention, Down syndrome is the “most common chromosomal condition” diagnosed in the U.S. today. About 6,000 babies are born across the country each year with Down syndrome, the CDC said.


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

State News:

Illinois - Higher Pay sought for Developmental Disabilities Staff Members

Jerry Nowicki, Capitol News Service, via The Telegraph, April 26, 2023

Industry advocates and unions supporting caregivers for people with developmental disabilities want lawmakers to more than double a funding hike proposed by Gov. J.B. Pritzker in February.  

The Illinois Association of Rehabilitation Facilities is requesting a $4 hourly increase to the wage rate for direct service professionals in community-based settings that serve individuals with intellectual and developmental disabilities. Direct service professionals, or DSPs, are the individuals who provide daily personal care such as assisting individuals with eating, grooming and dressing. The requested increase is $2.50 beyond an increase proposed by Pritzker earlier this year. 

The $4 rate increase is also backed by AFSCME Council 31, the union representing about 4,000 workers at community facilities as well as about 4,000 employees at state-run centers.

Supporters say the increase is needed to fill staffing shortages and offer more competitive wages. The current $17 wage rate is just $4 more than the state’s $13 minimum wage, although some DSPs make more than that and some make less.

“Look at the cost of food, gas rent, mortgage insurance,” said Veronica Lea, a DSP of 30 years at Trinity Services in Joliet. “People working in fast food make more than we do. And that's, again, a shame…Our pay is so low that people leave. They love their job but just can't afford it.”

While IARF and AFSCME are backing different proposals in terms of how providers could spend the money, each of them would bring the base wage rate to $21 by January 2024.

AFSCME is supporting two measures – Senate Bill 1600 and House Bill 3398 – that require all $4 of the increase be directly passed through to workers.

“You must ensure that providers are required to pass through the funds for our wages rather than spend that money in other ways,” according to Christine Rivera, an AFSCME member and DSP at Ray Graham Association.

Evans said the bills IARF is backing – House Bill 3569 and Senate Bill 2026 – would require that $2 be directly passed through to DSP wages, while the other $2 could be used more “flexibly,” such as for recruitment and retention efforts. It’s an agreement that Evans said was reached between providers, the state and labor in a previous fiscal year.

The rate increase is one of dozens requested by various providers in the state’s Medicaid program. But it is also one that is directly pertinent to a federal consent decree governing the state’s provision of services for developmentally disabled individuals.

That court filing, known as the Ligas consent decree, is the byproduct of a lawsuit filed in response to a 1999 U.S. Supreme Court decision that ruled individuals with developmental disabilities have a right to placement in the community if they desire it. Advocates for the rate increase note the state has failed to comply with the consent decree since 2017 and long waitlists for community placements persist.

According to an Illinois Department of Human Services database, about 14,900 people were on a waitlist to receive state care as of the end of March, including 5,848 adults who are seeking services and currently eligible for community placement.

Read the full article here

Indiana may get Direct Support Professional Abuse Registry. Disability Advocates say it’s Not Enough

By Adam Yahya Rayes, Indiana Publiic Broadcasting, April 27, 2023

Direct support professionals (DSPs) provide in-home care for people with developmental and intellectual disabilities. DSPs can be parents or loved ones of the client.

In some cases, DSPs abuse and neglect those they’re supposed to care for. Data show people with disabilities are generally more likely to face abuse and violence than those without.

Loren Pilcher employs DSPs as chief operating officer of Sweet Behavior, LLC, a disability services provider in southern Indiana. He also regularly works as a direct support professional for his company “because of the staffing shortage.”

He and other advocates say abusive DSPs often get away with it by going to work for another provider.

The state has an incident reporting system for DSP abuse, but it’s not accessible to the public or providers – so no one can easily check whether the person they’re about to hire or let into their home has been accused by a former client of stealing medication, using physical violence or being drunk and high while providing care.

“Currently I know of three people who I personally fired and reported to the police and the Bureau of Developmental Disabilities for substantiated abuse – including breaking a person's ankle – and they are still working with another company,” Pilcher said. “The DSP shortage crisis is so pervasive that certain companies don't even care.”

For years, legislative attempts to create a registry to track substantiated cases of abuse and neglect by DSPs have fallen short. 2023’s attempt, House Bill 1342, passed the legislature in the final hours of the session following a tumultuous journey.

“When I call to do professional reference checks, most companies won't actually tell me why someone's been let go,” Pilcher said. “So that's highly problematic and the registry would certainly help with that.”

HB 1342 originally passed the House unanimously in February. When it got to the Senate, it was almost amended to use a cheaper alternative to creating a full new registry which advocates said “wouldn’t be enough.” Instead of making that change, a Senate committee voted to strip the registry language out entirely.

The language was apparently taken out because providers who employ DSPs feared they could be held liable for causing a DSP to lose a job opportunity by reporting them for alleged abuse to the registry. All that remained in the Senate version was a requirement for DSPs to receive standardized training created by the state that could lead to a certification.

The bill’s author, Rep. Julie Olthoff (R-Crown Point), said she wasn't done fighting for the registry. It is now part of the final version of the bill that both chambers voted to send to the governor’s desk Thursday. He gets seven days to either sign it, veto it or let it become law without his signature.

The new version of the bill explicitly makes the state immune to legal action for reports made to the registry “in good faith.” It would be up to the department to define “substantiated abuse, neglect, and exploitation” and create levels within that to determine what the minimum requirements are for an incident to be reported to the registry. DSPs would be able to appeal any allegations against them to potentially have them removed from the registry.

Read the full article here

Texas Group Homes Closing due to Pay Crisis

By Rudy Koski, Fox 7 Austin, April 24, 2023

About 10,000 people are enrolled in group home programs across Texas, but several locations, including in Austin, have started shutting down. 

It’s because their employees, the caregivers, are leaving the industry for better paying jobs.

Sandy Batton, who leads the advocacy group Providers Alliance for Community Services of Texas, spoke to FOX 7 Austin about how the House and Senate budget negotiations will impact a proposed pay plan increase.

"It is really terrifying. And, you know, at this point, I'm not even sure that as a family member, you would want to look at a group home option for your child without knowing that there's going to be a consistent staff base and a quality staff base," said Batton.

With group homes shutting down, there are few options for those in need. 

"Folks were largely looking for group homes outside of the city. But in the worst-case scenario, sometimes we've seen people get dropped off at the hospital and there's nowhere else for them to go and those homes start to close," said Batton.

About a dozen group homes over the past few months have had to close because they just don't have caregivers.

The service is paid for through Medicaid and the only way to increase wages for the workers is for the legislature to appropriate more funds for that purpose.

"For the services that specifically support people with intellectual and developmental disabilities, which is the home and community-based services waiver, Texas Home living waiver and intermediate care facilities, the costs would be $215 million in general revenue to get to a pay raise for staff," said Batton. "You mentioned before that they're right now the average is $9 an hour. And with this investment, then we'd be able to pay an average of $15 an hour for staff across the state."


Opinion: California’s Developmental Disability System is Failing the Communities it is Meant to Serve  

By Bill Emmerson and Dion Aroner, The Orange County Register, April 24, 2023

alifornians with intellectual and developmental disabilities — such as autism, cerebral palsy, and epilepsy – deserve the best care the state can provide. Too often the system lets them down.

That was the lesson we heard again and again when the state’s Little Hoover Commission — an oversight agency on which we serve — held hearings recently on the developmental disabilities system.

Hundreds of regular Californians participated, taking time from their busy lives to tell us their stories — stories that too often involved fighting for care their family members deserved but didn’t receive. They described a system of bewildering bureaucracy, linguistic barriers, and unfair treatment that can vary depending on where you live or the color of your skin.

These everyday Californians shared with us their fears, their anger and their frustrations, and their bravery helped inspire our Commission’s new report outlining seven ways to improve the system.

It’s a critical task. Nearly 400,000 Californians with intellectual and developmental disabilities receive support from the state, an effort coordinated by 21 nonprofit agencies called regional centers, with oversight from the California Department of Developmental Services.

Decades of research demonstrate that the system has not kept its promise to equally serve all eligible Californians.

Compared to white populations, people of color are more likely to receive no services at all. When they do get treatment, expenditures are lower, even when controlling for need and other factors. At our Commission’s hearings, parents and others said those inequities remain.

Location matters too, even within the same region of the state. For example, per-patient spending at South Central Regional Center and Harbor Regional Center varies by $5,000 per year, even though both are located in Los Angeles County.

In recent years, California has invested $66 million dollars to address these problems. It’s a good start, but we must do more.

The state should ensure consistency in client experiences across regional centers. This would include developing a standardized client intake process, establishing requirements for regional center websites, and identifying a set of core services.

We must also address and reduce ethnic and racial inequalities in treatment and access to services. To do so would mean creating standard categories to measure racial and ethnic demographics among clients receiving services, tracking and monitoring disparities using existing data, and requiring regional centers to consistently report on additional metrics such as denial of services.


Illinois - Support Valley Sheltered Workshop at 54th Annual Pancake Breakfast Fundraiser      

Submitted by Valley Sheltered Workshop, April 24, 2023

The Valley Sheltered Workshop, 325 Main St. in Batavia, invites the community to its 54th annual Pancake Breakfast on Sunday, May 7.

The menu will include pancakes, sausages, an asssortment of fruit, juice, and freshly made coffee.

The fundraiser also will include raffle baskets, a silent auction, and a cash drawing. Cost is $10 or free for age 3 or younger.

For information, visit valleyshelteredworkshop.org/events/ or facebook.com/valleyshelteredworkshop/.

Sheltered workshops are places where adults with disabilities can work and learn new skills in a supportive environment. They provide a safe and structured space for people with disabilities to gain confidence and learn new skills. Sheltered workshops can also provide a sense of community and belonging for people with disabilities. They can be valuable places of learning, socialization, and pride for workers and perhaps respite for their caregivers.

Valley Sheltered Workshop is a 501(c)3 nonprofit that operates without fees to its participants. For over 50 years, it has collaborated with the Fox River Valley community to create meaningful and dignified work opportunities for its participants. Each participant earns a paycheck for everything they do with the workshop, as the workshop believes in cultivating a path towards independence at their own pace. The workshop provides opportunities both in the workshop and in the community with like-minded organizations and employers to enrich the lives of its participants no matter where they are on their journey.

Help Valley Sheltered Workshop meet its $25,000 goal by contributing to the annual fundraising event, the pancake breakfast, which helps the nonprofit continue this mission.

Your donation will help to provide vocational training and employment opportunities to adults with disabilities in the Batavia area. With your help, they can create a more inclusive community and provide meaningful work opportunities for those in need.

To make a donation, go to www.pledge.to/2023-pancake-breakfast.

And after the breakfast, we hope you will join us for

VOR's 2023 Legislative Initiative!

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.

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