June 2, 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)

Please Click Here to Register!

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 - 5:00 - 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 State Reports to

[email protected]


5:00 - 5:30 - Closing Ceremonies

2023 Voice Award Presentation

Swearing in the 2023-24 Board of Directors

Raffle for the 40th Anniversary VOR Bear


Please Click Here to Register

This event is open to all.

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.

The Zoom Link for the meeting is available on our website at:


VOR's 2023 Annual Meeting

The Importance of Sharing Our State Reports

This is a great opportunity to actively participate in VOR's mission of sharing information to help other members to better understand the bigger picture of what is happening across the country (and around the world) that affects people with I/DD and autism.

Our State Report forum is a longstanding tradition at our annual meeting. It gives us an opportunity to get to know one another, to learn from the experience of others, and to find out about trends that we might not otherwise know about until it's too late.

We hope that Conference Participants will contribute a short (1-2 pages) report on the “State of their State”, speaking about the status of residential care services, competitive employment opportunities or sheltered workshops, the shortage of direct support professionals, guardianship concerns, activities involving state protection and advocacy agencies or DD Councils, or any legislation that involves people with I/DD and autism. 

If you can, please coordinate with others in your state, but we are always happy to present multiple submissions when they occur.

Please send your reports to us at [email protected]

Welcome Our New Friends From Australia!

We were delighted to have been approached recently by Amy Clark of Perth, Australia, who found us through our website and emailed us about attending our Annual Meeting. Amy and her friends Janette Gee and Phil Hayes Brown advocate on behalf of people with I/DD and autism through their organization, Our Voice Australia (OVA).

Though a world away, OVA is advocating along similar lines as VOR. They are currently fighting to preserve employment opportunities at Australian Disability Enterprises (ADEs), which are remarkably similar to our own Sheltered Workshops and 14(c) Programs.

We have held two Zoom meetings with OVA in the last two weeks, first with Amy, Janette, Joanne, and Hugo to introduce our two organizations, followed by another Zoom that included Phil along with Colleen Stuart and Kit Brewer of the Coalition for the Preservation of Employment Choice, as a way of expanding our advocacy and increasing support for our common goals.

There is no describing the joy we all felt during these meetings. It was a chance for new/old friends to speak about our shared challenges and our shared visions for a better future. We look forward to continuing this friendship and expanding our advocacy with others who speak for the needs of those who do not have a voice.

OVA's website is https://www.ourvoiceaustralia.asn.au

And be sure to check out their

Joint Submission from OVA and AAT to the Australian Royal Commission:

A Word About Those VOR Teddy Bears...

In another longstanding tradition of the VOR Annual Meeting, Our Mary Reese has hand-crafted Teddy Bears to auction off each year. This year is no different.

Except, this year, there will be two bears! The first, above, is the one-time-only VOR 40th Anniversary Bear! This lovely creature will go to the individual making the highest donation to VOR during the months of May and June of this year.

The second bear will be a custom order - the winner will be able to select from a range of color options and add a name to the bear if they so desire. This bear will be given away to a random attendee of the Annual Meeting on June 11th. Just enter your name and email in the Chat, and we will choose the winner at random.

National News:

One of the commonly referenced reports concerning people with I/DD and autism is that issued by the National Core Indicators program. Their most recent report has just been presented:

National Core Indicators - Intellectual and Developmental Disability - In-Person Survey National Report 2021-2022

Provided by the Human Services Research Institute, May 28, 2023

The National Core Indicators (NCI) program announces the release of the National Core Indicators Intellectual and Developmental Disability (NCI-IDD) - In-Person Survey (IPS) National Report for the year 2021-2022. This comprehensive report is based on data collected by 27 states from 13,559 adults receiving long term services and supports (LTSS) from their state Developmental Disabilities (DD) service systems. This report provides a vital snapshot of the demographics and self-reported outcomes among people using LTSS from DD systems in the United States.

Read the article explaing the methodology of the NCI Report, and download it here

Or just download the National and State Reports here

As Medicaid Purge Begins, ‘Staggering Numbers’ of Americans Lose Coverage

By Hannah Recht, KFF Health News, June 1, 2023  

More than 600,000 Americans have lost Medicaid coverage since pandemic protections ended on April 1. And a KFF Health News analysis of state data shows the vast majority were removed from state rolls for not completing paperwork.

Under normal circumstances, states review their Medicaid enrollment lists regularly to ensure every recipient qualifies for coverage. But because of a nationwide pause in those reviews during the pandemic, the health insurance program for low-income and disabled Americans kept people covered even if they no longer qualified.

Now, in what’s known as the Medicaid unwinding, states are combing through rolls and deciding who stays and who goes. People who are no longer eligible or don’t complete paperwork in time will be dropped.

The overwhelming majority of people who have lost coverage in most states were dropped because of technicalities, not because state officials determined they no longer meet Medicaid income limits. Four out of every five people dropped so far either never returned the paperwork or omitted required documents, according to a KFF Health News analysis of data from 11 states that provided details on recent cancellations. Now, lawmakers and advocates are expressing alarm over the volume of people losing coverage and, in some states, calling to pause the process.

KFF Health News sought data from the 19 states that started cancellations by May 1. Based on records from 14 states that provided detailed numbers, either in response to a public records request or by posting online, 36% of people whose eligibility was reviewed have been disenrolled.

In Indiana, 53,000 residents lost coverage in the first month of the unwinding, 89% for procedural reasons like not returning renewal forms. State Rep. Ed Clere, a Republican, expressed dismay at those “staggering numbers” in a May 24 Medicaid advisory group meeting, repeatedly questioning state officials about forms mailed to out-of-date addresses and urging them to give people more than two weeks’ notice before canceling their coverage.

Clere warned that the cancellations set in motion an avoidable revolving door. Some people dropped from Medicaid will have to forgo filling prescriptions and cancel doctor visits because they can’t afford care. Months down the line, after untreated chronic illnesses spiral out of control, they’ll end up in the emergency room where social workers will need to again help them join the program, he said.

Read the full article here

State News:

Currently, there are two separate issues at play in Connecticut. The State Legislature is working on a bill to reduce the waiting lists for HCBS services, and the union of DSPs providing caregiving services in group homes across the state has been on strike for a week while the Governor presents a budget that appeals to Wall St. but casts these workers aside.

Connecticut - Protesters Arrested as Lamont, Lawmakers Strike CT Budget Deal  

By Keith Phaneuf and Mark Pazniokas, CT Mirror, June 1, 2023

With a budget centered on middle-class tax relief largely finalized Thursday, protesters occupied a crossroad outside the state Capitol, still demanding more spending on wages for striking caregivers and an expansion of Medicaid for the undocumented and disabled.

A protest that ended with more than 50 arrests came as Gov. Ned Lamont confirmed that a deal on a $51 billion spending plan for the next two years was essentially done, providing what Lamont said would be “the biggest middle-class tax cut in the history of the state” but falling well short of protesters’ demands for “a moral budget.”

“We’ve got a deal. Now it goes to the bean counters. They’re making sure all the numbers add up,” Lamont said. “This will be voted on, I believe, early next week. It will be an honest and balanced budget. It will keep within the fiscal guardrails established by the legislature.”

Staying within those guardrails in a time of historic surpluses has set the Democratic governor and legislative majority at odds with vocal elements of the Democratic coalition: a major union, SEIU 1199NE, and advocacy groups representing state-funded nonprofit service providers and their clients.

As he watched his members and others prepare to be arrested, Rob Baril, the president of 1199NE, said the governor can convince them of his appreciation by using the state’s stronger fiscal condition to make a leap forward in a time of economic strength, not incremental progress.

“This is not a time when the state of Connecticut should hide behind the idea of fiscal discipline, keeping us from addressing critical needs,” Baril said. “For 15 years, working class folks in the state have been asked to wait. They’ve been told there’s nothing for them. They’ve been told that they’re not at the end of the line, they’re not even in the line.”

Tamir Capehart of Norwich, a Black woman who cares for a disabled neighbor, said the fight for better wages is a battle for recognition of people of color who tend to be overlooked.

“We are not invisible. The services we provide are not invisible,” she said.

Read the full article here

Connecticut - House Passes Expansion of Autism, Disability Services  

By Katy Golvala, CT Mirror, May 30, 2023

A bipartisan bill to expand resources and support services for residents with intellectual or developmental disabilities won unanimous passage Tuesday in the House of Representatives on a 148-0 vote.

“This population has been left behind for many years of budget cuts and lack of real investment,” said Rep. Lucy Dathan, D-New Canaan, during the House debate. “While we’ve expanded services in the last budget cycle, there’s still more work to do.”

House Bill 5001 — An Act Concerning Resources and Support Services for Persons With an Intellectual or Developmental Disability — addresses waitlists for Medicaid waiver programs and establishes plans to address the needs of residents with intellectual and developmental disabilities across a range of areas, including education, employment, housing and transportation.

The fiscal note filed Tuesday morning stated that the bill would be funded through $30 million from the General Fund and $400,000 from the Special Transportation Fund over the next two years. 


Oklahoma - Families Coming Off Developmental Disability Services Waitlist Still Facing Problems

By Amanda Slee, KJRH 2 News, May 29, 2023

People on a decade-long waitlist for developmental disability services are finally coming off that list.

It's all in an effort by the state to end the waitlist, but families coming off that list are still running into issues that are delaying those services.

The developmental disability services waitlist has thousands of names, and those families have been waiting 7-15 years to come off of it and get connected to services.

Sawyer Pittsely has been diagnosed with several disabilities, including developmental delays, autism, and cerebral palsy. He’s been on the disability service waitlist for seven years and finally came off in June last year because of an emergency situation that put him in the hospital.

The problem is his mom Amber Pittsely wasn’t able to get connected to services right away.

“When we came home, he was on about 23 medications, so we were trying to manage that, and he had a G-tube surgical site and needed wound care," Pittsely said.

It wasn’t until last month that she was able to get the care her son needs.

“I haven’t been able to work. I had a full-time job, and last year when he was in the hospital, I had to give that up,” she said.

The issue families are running into after being approved is that the agencies who provide the services don’t have enough staff.

"These are wonderful individuals to work with and for. They will provide significant blessings to yourself, but it’s difficult work," said Lisa Kelly, the CEO of the Arc of Oklahoma.

Both Lisa and Amber said the root cause of the shortage of workers has to do with wages.

“When people can go and get a job at a fast food restaurant or a local retail store and make more than they can make proving in-home very personal care, that’s a difficult choice to make,” Kelly said.

In 2022, legislators did appropriate a rate increase of 25%, but Lisa and Amber believe it’s still not enough because as more people come off the waitlist, the problem could get worse if not addressed.

“There’s a big difference between ending a waiting list and getting provided the services you need,” Kelly said. "That's where we want to make sure families are getting."

Read the full article here

Indiana - Families and Students Advocate for SB2026, Show Support for IDD Community

By Annie LaMontagna, Vidette Online, May 31, 2023

Illinois lawmakers approved a wage increase of $2.50 an hour for Direct Support Professionals — those who care for the needs of the intellectually and developmentally disabled (IDD) community.

On April 19, families and students met with legislators at the Illinois Capitol for the Illinois Student Assistance Commission’s (ISAC) Legislative Day.

The goal of this meeting was to advocate for Senate Bill 2026, legislation that supports the IDD community in terms of gaining quality and accessible resources following graduation.

Carolina Schoenbeck, the vice chair of the Illinois Advisory Council on the Education of Students with Disabilities and a Transition 99 program coordinator, helped organize the meeting at the Illinois Capitol. She explained why she invited the parents of kids with special needs to attend ISAC’s Legislative Day.

“I wanted to offer the parents a way to escalate their concerns and struggles,” Schoenbeck said. “Also, by bringing their children, it would allow for legislators to see and give a face to their advocacy work.”

Schoenbeck spoke about how Illinois can better support the IDD community.

“The government needs to support families once their children age out of public education,” Schoenbeck said. “They need to provide more funding for adult day programs…they need to open more facilities to ensure that adults with disabilities are not on waitlists.”

Schoenbeck also said that passing Senate Bill 2026 would benefit the IDD community in many ways.

“The bills increase the pay for professionals working with individuals with disabilities. It is hard to attract quality employees paying a low salary,” Schoenbeck said. “Also, retention is a big struggle in adult services. If people are paid more, it will increase the likelihood of them staying.”

Kathy Dorsey, a parent of an adult with special needs, also attended the Illinois Capitol for ISAC’s Legislative Day. She said that it was discouraging to see the lack of awareness in state legislation.

“The main goal for speaking with legislators at the Capitol was to get better services for people with disabilities,” Dorsey said. “But when speaking to legislators, I learned that they really aren’t aware of how hard it is for adults with disabilities to get services which was very disheartening.”


SB 2026 may be viewed here

Texas - Kimberley Crawford and Her Family Will Lose Necessary Services as She Becomes an Adult

By Sara Diggins, American-Statesman, June 1, 2023

Elena Crawford kisses her daughter, Kimberley, on the forehead after a nail painting session at their home in Paris, Texas, July 20, 2022. Crawford adopted Kimberley, who has cerebral palsy and epilepsy, when she was just over a year old. Now, Kimberley is at risk of losing necessary benefits, like physical therapy and in-home care, as she ages off of one medicaid waiver and is waitlisted for an adult waiver. When Crawford checked Kimberley's status on the waitlist, she was told it would be 16 years until her daughter's name came up.

View the full photo essay here

International News:

While we're learning about the challenges faced in Australia, here's an article that looks at the subject of autism/severe autism.

Australia - The Autism Trials that could Divert Thousands of Children away from the NDIS

By Bianca Hall, The Age, May 28, 2023

Thousands of babies and young children showing early signs of autism could be diverted into early intervention programs each year under changes being considered by the Albanese government to reduce the burden on the National Disability Insurance Scheme (NDIS).

Autism diagnoses are surging, with 11 per cent of boys aged 5 to 7 and 5 per cent of girls in the same age bracket now on the NDIS: a jump of almost one percentage point in just three months. At 54 per cent, autism is the most common disability for NDIS participants under 18 years old.

Children diagnosed with level 2 autism are automatically eligible for NDIS support, without parents needing to show the effect their disability has on their child. In the past six months, almost 17,000 new participants joined the NDIS, with autism listed as their primary disability.

There are concerns within government and among some experts that more severe autism levels are being over-diagnosed, so families can receive support for their struggling kids.

Sarah Hockey is not so sure.

“I think there’s been education around support needs for people with autism,” she said.

“But it’s very simplistic to be relying on levels [of autism to assess care needs]. It should be about the function of the person. It’s all very individual, and it should be based on the person.”

Read the full article here

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) - 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.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

TRep. 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 


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?

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