December 16, 2022

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


One Size Still Does Not Fit All

We know we are preaching to the choir when we say this, but it never fails to surprise us how so many people in the I/DD and autism communities continue to advance the myth of one-size-fits-all, and how many people are marginalized and discriminated against by this ideology. How often have we heard that people are "languishing in institutions" with no recognition of the section of Olmstead that says that, for some people, an institution may be the most appropriate environment. Why do we never see articles recommending states increase Home and Community Based Services and also strengthen their ICF system to support those with higher needs that are not receiving the care they need in HCBS settings?

VOR supports HCBS for those who desire that level of care. But we also recognize the diversity of the I/DD population, and we believe that those with severe/profound I/DD and autism are almost always excluded from news reports, as well as state and federal legislation.

This week, several articles appeared in our newsfeed espousing this idea, or implying that the failures of the HCBS system are somehow the fault of the ICF system. We don't support these views, but we try to remind our readers that this is what we are up against - a system that prefers to pretend people with more severe I/DD and autism don't even exist.

But first, we'll report on a couple of states that are trying to get a few things right.

(After a few words from our sponsor, that is....)

Save the date:

VOR's January Networking Meeting

Tuesday, January 24

4 pm Eastern, 3 pm Central, 2 pm Mountain, 1 pm Pacific

We invite you to join us on Zoom to meet with like-minded advocates and families of individuals with I/DD and autism.

Our topic this month will be a look at the

118th Congress

and the issues that we may be bringing to their attention in coming session.

The forum will be moderated by Roslyn Leehey. and feature a presentation from Gayle Gerdes of Health Policy Solutions and

VOR's President Joanne St. Amand & Executive Director Hugo Dwyer

Registration will be free.

Stay tuned for more details.

Two Weeks Left to Give!

Our 2022 Year-End Fundraising Campaign

This year we have set a pretty high goal for our fundraising.

We are aiming at raising


We would like to increase our membership by adding 100 new families.

We have a long way to go.

We would like to share with you that we have received a gift from the

New Jersey Association for Individuals with Intellectual Disabilities

in the amount of $10,000!

We would like to thank them for their generosity, and for their appreciation of VOR's commitment to families of people with I/DD.

Nonetheless, we still have a long way to go to meet our goal.

We hope that the NJAIID's generosity will serve as inspiration to others to dig a little deeper this year.



    Click Here to Give Two VOR Gift Memberships     For the Price of One!

The Perfect Holiday Gift!

Give Two VOR Gift Memberships for the Price of One!

From now until December 31st, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

Special Offer!

For the months of November and December,

anyone donating $250 or more to VOR

will receive a first-edition copy of


new book


Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Please click here to Donate

State News:

Tennessee - Rare Genetic Disorder Case Inspires New ER Protocol, Emphasizing Empathy and Respect 

By Kat Gerasimenko, Fox17 News, December 9, 2022

When 19-year-old Jadyne Kancir had to go to the ER in March 2021, her mother says she was treated like a psychiatric patient. Except she wasn’t one.

The problem was that doctors had protocols to follow that were not meant for people like Jadyne.

Jadyne has a rare genetic disorder called SYNGAP1. In fact, she was the first person to be diagnosed with the disorder in Nashville back in 2019. She was 16 years old.

Her mother says she knew within the few first weeks of Jadyne being born that something was wrong, and this concern only continued to increase for every milestone she missed. The diagnosis provided relief to Jackie Kancir, Jadyne's mom.

The true diagnosis helped me realize that it wasn’t something I did. It took the potential guilt out of the equation,” says Kancir.

The diagnosis came after years of searching for a potential disorder that could have been affecting Jadyne.

SYNGAP1 is characterized as an intellectual and developmental disorder with high rates of autism and epilepsy coupled with delays in language development and difficulties with fine and gross motor skills.

The problem is that someone with SYNGAP1 has significant behavioral issues, and can display aggression that can be unsafe to the other people around him or her. This can be easy to interpret as something of psychiatric nature, especially if the person trying to deal with the issue is unequipped to deal with SYNGAP1 or is not familiar with the disorder.

This is what happened when Jadyne had an incident at the dentist in 2021. She was displaying aggression, and the situation became unsafe very quickly. A trip to the ER was necessary. Unfortunately, there was no protocol in place for how to de-escalate situations involving those with developmental and intellectual disabilities at the time. They also were not designed for cases like Jadyne's.

In fact, she was given a psychological assessment and had psychological holds put on her, even though her mom and those taking care of Jadyne already knew what she needed.

The goal ideally for everyone was to get Jadyne home as soon as possible, yet ineffective policies were slowing the process down.

Eventually, Jaydne was able to go home.

Yet, her mom knew that she had to do something so that what Jadyne experienced would not happen to her or others again.

Kancir went on to email the Tennessee Council on Developmental Disabilities' main email inbox.

She explained what had happened.

Lauren Pearcy, Executive Director of the Tennessee Council on Developmental Disabilities, said that what made Kancir’s email stand out was that at the end of the message Kancir laid out exactly what she wanted to happen in response to Jadyne's ER experience.

She described how policymakers needed to make the ER a better experience for those with intellectual and developmental disabilities.

Pearcy says that after reading the email, the department showed the email to Michelle Bagby, DIDD Director of Behavioral Health & Crisis Services. They went on to collaborate with Jackie’s behavior analyst, Vanderbilt’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) teams (some of the nation’s top autism experts), as well as the Arc Tennessee (an advocacy organization). The goal was to create a concise, practical document that would help people like Jadyne receive effective care in an emergency situation.

Kancir's advocacy and the dedication of policymakers led to DIDD's recent release of the ER stabilization protocol.

The document that is out now is being used by Vanderbilt Medical Center and is available to all Tennessee hospitals. It has a list of "Do’s" and "Don’t's" for emergency services in the case of dealing with a patient like Jadyne.


Click here for the ER Stabilization Protocol

Texas - WFAA Investigation of Shooting in Group Home Prompts New Legislation

By Jason Trahan and Tanya Eisere, WFAA News, December 14, 2022        

An Arlington state representative on Wednesday filed four new bills in response to WFAA’s “Disabled in Danger” series, which chronicled lax oversight of group and host homes putting people with intellectual and developmental disabilities in harm’s way.

Rep. Chris Turner, D-Arlington, introduced House Bill 1007, known as “Joshua’s Act,” in memory of Joshua Moore, the 28-year-old man featured in a WFAA report after he was shot to death by his state-paid caregiver in a group home.

The bill would prohibit firearms in group homes, intermediate care facilities and state-supported living centers that care for individuals with intellectual and developmental disabilities.

Currently, there is no law banning guns in such facilities.

Moore’s caretaker fatally shot him in the summer of 2021 after Moore attacked him with a knife. The caretaker was cleared of criminal wrongdoing, but was sanctioned by state health officials for leaving the knife where Moore could get it, and for shooting Moore. The company the caretaker worked for said it did not know there was a gun in the house.

“Let the tragedy of what cost Joshua Moore his life pave the way so this will never happen to another mentally challenged intellectually disabled individual," said Don Moore, Joshua’s father. “How many more must perish before we act to protect those who are most vulnerable in our society?”

Turner also filed three other bills in response to previous “Disabled in Danger” investigations.

In 2021, WFAA reported on the death of Raul Olguin, a 24-year-old man with severe autism who was living in a group home when he became malnourished and later died in 2019. His caretaker was allowed to keep caring for other clients while she was under investigation. HB 1008 would prevent this, essentially suspending caretakers until their cases are adjudicated.

In that same case, WFAA found that Olguin’s caretaker should never have been granted a license to care for the disabled because of an Arkansas federal felony conviction – which a Texas state background check missed. Turner’s HB 1009 would require a more thorough federal background check for caregivers in group homes, intermediate care facilities, and state-supported living facilities so that people who have committed crimes in other states do not slip through the cracks.

“When Texans entrust the care of loved ones to a group home, they should have confidence that they will be safe, at a bare minimum,” Rep. Turner said.


One-Sized News of the Week:

Federal Panel’s Shift To ‘Neutral’ Autism Language Prompts Backlash

By Michelle Diament, Disability Scoop, December 15, 2022

As an influential federal autism committee considers moving to “neutral, strengths-based” language, some advocates are pushing back arguing that stripping words will merely “sanitize” the realities many families face.

Every year, the government’s Interagency Autism Coordinating Committee — a panel of government officials and members of the autism community that’s charged with advising the secretary of health and human services and coordinating federal autism activities — is tasked with updating its strategic plan. The plan guides priorities for autism research, services and supports and is relied on by both federal agencies and private organizations.

With work underway on the latest iteration, committee leaders have signaled their intention to shift the type of language that’s included. The updates were incorporated in response to feedback in a survey of IACC members earlier this year.

“There were some comments on language considerations, which we summarized as moving away from deficits-based language and towards more neutral, strengths-based, inclusive language while also balancing the importance of maintaining accuracy when referring to issues that may be scientific, medical or clinical in nature,” Susan Daniels, executive secretary of IACC, said during the committee’s spring meeting.

Sam Crane, legal director at the Quality Trust for Individuals with Disabilities and a member of the IACC, said that the current draft the committee is considering contains “significant changes,” many of which are “for the purpose of reducing stigma and reflecting the community’s prioritization of well-being over a ‘cure.'” She noted that the changes are in line with efforts to refocus research on improving quality of life.

Now, however, some advocates are not on board. The National Council on Severe Autism recently wrote to the IACC criticizing the plan.

“There is nothing inclusive about neutral or strengths-based language that specifically excludes or denies realities of autism, particularly severe autism,” the group wrote. “While the IACC neutralizes language about autism, families on the other hand rely on medical necessity, and the neural and behavioral impairments, disorders and pathologies underlying it, to attain desperately needed supports. For most of us in the real world, impairments, dysfunctions, deficits, disorders, dependency, and not ‘strengths,’ define the daily experience of autism.”

The group argues that altering the language around autism limits the ability to address significant issues like self-injurious behaviors, the rise in autism prevalence and the need for services and housing.

“I actually think that language is a central concern of these debates, as it determines how policy makers and the public more broadly perceive autism,” said Amy Lutz, vice president of the National Council on Severe Autism, who spoke out at the IACC’s October meeting against the move toward neutral language. “If neurodiversity advocates are successful in this new drive to purge discourse of words like ‘severe,’ ‘challenging,’ ‘disorder,’ ‘risk,’ etc., then they will also control the kinds of research that are funded and the supports and services that are provided to individuals like our kids.”

Officials with the National Council on Severe Autism said leaders of several autism groups and some prominent researchers have privately applauded their efforts to speak up, but have not come out publicly against the IACC move to neutral language.


Read Amy's Letter on the NCSA website

Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says

By Michelle Diament, Disability Scoop, December 13, 2022

A report from the National Council on Disability finds that weaknesses in home and community-based services directly contributed to “needless deaths” among people with intellectual and developmental disabilities during the COVID-19 pandemic.

With limited investment in home and community-based services, the report notes that people often spend years on waiting lists and, during the worst days of the pandemic, those living in institutional settings typically had no alternative.

“For many people with disabilities during the pandemic, congregate settings had a devastating impact,” said Andrés Gallegos, chairman of the National Council on Disability, which is charged with advising the president and Congress on disability issues. “In many instances, social distancing wasn’t achievable and the inability to transition out of such a setting became a death trap.”

“Severe shortages of direct care workers and available affordable, accessible housing are just two examples are longstanding fragilities in the HCBS ecosystem,” Gallegos said. “The neglect in addressing these matters led to the preventable deaths of scores of Americans with disabilities and will again if policymakers don’t act.”

The National Council on Disability is calling on Congress to enact legislation within the next year making home and community-based services a mandatory service under Medicaid and add significant funding to the program, among other changes.

Read the full article here

Legislative Committee Recommends Funding Home- and Community-Based Care for 2,400 more Georgians with Disabilities

by Rebecca Grapevine, Capitol Beat News Service, December 14, 2022

Georgia should add 2,400 slots for serving people with intellectual and developmental disabilities in their homes and communities in next year’s budget, a state Senate study committee recommended Wednesday.  

“We’re looking at hopefully being able to eliminate the waiting list over a three-year period,” said state Sen. Sally Harrell, D-Atlanta, co-chairwoman of the committee.

The waiting list currently has more than 7,000 people on it.  

The program pays for support services for people with an intellectual or developmental disability so they can remain in their homes and communities and not languish in large institutions. 

Increasing the funding for the program so that the waiting list can be cleared has long been a priority of the disability advocacy community, and the study committee’s recommendations may be the crucial first step toward decreasing the length of the waiting list.  

The study committee, which held several public meetings this fall, grew out of a resolution passed earlier this year that aimed at addressing the waiting list and other problems faced by Georgians with intellectual and developmental disabilities. The panel adopted 14 recommendations on Wednesday.  


Nielsen To Track Disability Representation On TV

By Shaun Heasley, Disability Scoop, December 12, 2022

It’s long been known that people with disabilities are underrepresented on television, but now a prominent industry service is looking to measure the trend in hopes of prompting more inclusion.

Gracenote, a company owned by television ratings giant Nielsen that collects and provides data on the entertainment industry, says it will start tracking representation of people with disabilities on the small screen.

The company is measuring disability representation for broadcast, cable and streaming television programming in the U.S. as part of Gracenote’s Inclusion Analytics, which already tracks gender, race, ethnicity and sexual orientation of talent. Individuals will be tagged as being part of one or more of six categories — neurodivergence, intellectual/developmental, visual, hearing, physical and mental health.


In A Different Key - Airing on PBS

"A mother tracks down the first person ever diagnosed with autism, now an elderly man living in rural Mississippi, to learn if his life story holds promise for her own autistic son. Her journey exposes a startling record of cruelty and kindness alike, framed by forces like race, money and privilege – but leads to hope that more communities are learning to have the backs of people on the spectrum."

This documentary does take pains to represent individuals with more severe/profound I/DD and autism, though not until late in the first hour of the two-hour film. Right around the 56 minute mark, they speak with Amy Lutz (again, THANK YOU, AMY) about those not usually represented in the media, and unlikely to be included in the Nielsen organizations's tracking of "inclusion" in the article preceding this one.

Nonetheless, the film makes some valid points, and we expect our readers will have some interest in watching this film and forming their own opinions.

A Different Key may be viewed here, on PBS online.

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 join.

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.

VOR Bill Watch:

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


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

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What's Happening In Your Community?

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