June 3, 2022
VOR 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.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & YOU:
VOR's Annual Members' Meeting

Celebrate VOR's 39th Year of Family Advocacy

ALL ARE WELCOME TO ATTEND!

Sunday, June 12, 2022
11:30 am - 5:30 pm (Eastern)
On Zoom

This year, there will be two VOR Bears awarded!


Schedule of Events

Part 1 - VOR Board of Directors Presentations
  • 11:30 am - Opening remarks from President Joanne St. Amand, Presentation from VOR Board of Directors and Committee Chairs on the State of VOR

Part 2 - Guest Speakers:
  • 12:30 pm - Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • 1:30 pm - Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • 2:30 pm - Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”

Part 3 - State Reports and Networking
  • 3:30 pm - Reports from the States - VOR members present updates on the State of their State. To be followed by an Open Networking Meeting

Closing Remarks - 5:30 pm


All times and events are subject to change...
National News:
Feds Push Forward With New Medicaid Waiver Rule
By Michelle Diament, Disability Scoop, June 1, 2022

After multiple delays, federal officials say they are plowing ahead with implementing a long-awaited Medicaid rule establishing standards for what counts as home and community-based services for people with disabilities.

The Centers for Medicare & Medicaid Services outlined a strategy late last month for imposing a 2014 regulation spelling out the criteria programs must meet in order to be considered community based and thereby eligible for funding provided by Medicaid home and community-based services waivers.

The rule requires that home and community-based settings are places individuals choose to live that are integrated in and provide full access to the community. Such settings must offer privacy, dignity and respect and allow people with disabilities the ability to make independent choices about their daily activities, physical environment and who they are in contact with.

CMS has indicated that the changes are expected to have implications for more than a million people receiving home and community-based services through Medicaid. The agency created the rule after hearing reports of homes built on the sites of former institutions that were being labeled as community based.
Originally, states were given a five-year transition period — ending in 2019 — to comply with the new standards. But in 2017, the Trump administration extended the deadline by three years. Then, with the onset of the COVID-19 pandemic, officials pushed things back again to March 17, 2023.

Now, the Biden administration says it’s sticking to that plan. Under the newly released strategy, states must have a transition plan approved and meet the new criteria by the deadline next March, but there are some caveats in light of the ongoing public health emergency, or PHE, brought on by the pandemic.

“States and providers must be in compliance with all settings criteria not directly impacted by PHE disruptions, including PHE-related workforce challenges, by March 17, 2023,” CMS said in its update. “Time-limited corrective action plans (CAPs) will be available to states to authorize additional time to achieve full compliance with settings criteria that are directly impacted by PHE disruptions, when states document the efforts to meet these requirements to the fullest extent possible, and are in compliance with all other settings criteria.”
Iowa - Julie Beckett, Who Fought for Change in Medicaid System, Dies
By Michaela Ramm, The Gazette, May 18, 2022
Iowa mother was responsible for creating the Katie Beckett Waiver

More than 40 years ago, Julianne “Julie” Beckett fought to bring her daughter home.The Cedar Rapids resident advocated to remove red tape that prevented her for caring for her disabled daughter at home, eventually bringing her case to Congress and the White House.

Policymakers and disability rights advocates say Beckett was instrumental in bringing fundamental changes to the federal Medicaid program that ultimately improved the lives of hundreds of thousands of families nationwide. She become a lifelong advocate for improving health care for children with disabilities and boosting support for families caring for loved ones with complex medical needs.

Beckett died Friday, May 13, in her Cedar Rapids home. She was 72.

Beckett’s daughter, Katie Beckett, was born in 1978 and contracted viral encephalitis — a serious infection that causes inflammation of the brain — when she was 6 months old. The infection resulted in a paralyzed diaphragm, significantly affecting her ability to breathe on her own. A tracheotomy tube was placed in her throat and she used a ventilator to help her breathe for the rest of her life.

Katie spent the next three and a half years in the hospital.

Medicaid took over coverage of Katie’s care after her parents’ insurance hit the $1 million benefit limit for coverage. At the time, the Medicaid program supported only hospital-based care, meaning Katie’s care would not be covered if she were discharged home.

Beckett began advocating for the ability to care for her daughter at home. In 1981, she contacted former U.S. Rep. Thomas Tauke, a Republican who at the time was representing Iowa’s 2nd Congressional District.

Katie’s hospital care was about $12,000 per month, but costs would drop to about $2,000 per month if her parents were allowed to care for her at home with the help of home health nurses.

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria.

Any and all contributions will be graciously accepted.

Please help us to help you.
Please help us to help families like yours.
Autism:
Sabrina’s Parents Love Her. But the Meltdowns Are Too Much.
By Joseph Goldstein, New York Times, June 1, 2022
Unpredictable violence, chaotic outbursts and countless trips to the emergency room. What happens when an autistic teenager becomes unmanageable at home?

The other children were heading home after school. But not Sabrina Benedict. A progression of mishaps had sent her into a tailspin. Earlier in gym class, a much smaller boy had sprinted toward her, scaring her. Then a teaching assistant had deviated slightly from their usual goodbye routine.

Now mid-meltdown, she lay prone on the sidewalk outside her school, her legs dangling in the street. She was only 13 years old, but she was 6-foot-2 and 250 pounds, far larger than any of the teachers or school administrators who stood nearby, watching with concern. For a moment, the only sound was Sabrina’s loud moans. She threw a shoe at a teacher. She took off her shirt. She cursed at the school staff arranged around her in a protective circle.

Summoned to the scene, her parents tried to soothe her. She kicked and swung until they backed off. On the Sabrina tantrum scale, so far this registered only a 4 out of 10, declared her father, Jeremy Benedict, who was pacing nearby. “It could go either way.”

She might stand up, ready to go home. Or she might start smashing her head on the pavement. A knot tightening in his chest, her father focused on his breathing exercises.

This was the third time this week he had rushed to school for one of Sabrina’s meltdowns. Lately, similar scenes had unfolded in doctors’ offices, parking lots, Walmart, hospitals, on street corners and inside the raised ranch house where the Benedict family lives in Homer, N.Y., a town of 6,293 nestled in a valley near the geographic center of the state.

Sabrina, who was given a diagnosis of autism coupled with a rare genetic disorder, has exhibited aggressive behavior since she was a little girl. Now she towers over her parents. When she is happy, she gives them great big hugs, knocking them slightly off balance. When she is feeling shy, she crouches behind them. When she is frustrated, she sometimes hits them.

There have been so many 911 calls this past year that the family invited over several police officers and paramedics to meet Sabrina under more positive circumstances, when they weren’t restraining her or strapping her to an ambulance stretcher.

On that October afternoon outside school, Sabrina eventually calmed herself. It was just another day, soon difficult to remember, as Sabrina’s outbursts accelerated.
There is no widely recognizable name for the crisis that has gripped the Benedict family. But dozens of New York families with an autistic child are struggling through a version of it right now.

What the children and their caregivers are going through is not new. By adolescence, or sometimes earlier, a small percentage of children with autism become unmanageable for their parents, and no amount of parental patience or devotion will change that.

The pandemic has made matters worse, drawing more families into crisis and deepening it for those already there. When New York shut down in March 2020, the carefully designed routines and support systems relied on by families of autistic children largely vanished. Without school and day programming, the behavior of many autistic children regressed. Some stopped sleeping through the night; others began harming themselves for the first time.

‘We’re not safe, and she’s not safe"

In interviews, parents across New York State described the same scenes of fear and helplessness: being attacked by an adolescent child, now bigger and more aggressive than before. The dread that their child might turn on a younger sibling. Their growing helplessness as their child’s self-injuring behavior — relatively common among autistic children — escalates. The emergency room visits when there was nowhere else to go. And their eventual realization that the family home may be the wrong setting for their child.

The state’s answer to these families is to provide more support in the home. The Benedicts, like many people in a similar situation, were given a case manager and a budget to hire a home aide for their child. But a single aide is often unable to handle an aggressive teenager.
But if home life is untenable, where should Sabrina live?

In New York State, there are around 50 residential schools, mostly private and expensive, that specialize in working with children with disabilities ranging from autism to traumatic brain injuries. But the demand for spots is great, and these institutions are generally able to pick and choose whom to accept.

Each year, to meet this need, New York will pay, often grudgingly, for around 300 children with disabilities to attend out-of-state programs. Autistic children make up the largest share.
Somalis in Minnesota Create New Terms to Define Autism and Build Acceptance
The Somali language hasn't included a word for "autism." 
By Hibah Ansari, Star-Tribune, May 28, 2022
As a mother of three children, Anisa Hagi-Mohamed knows what autism looks like. Her two oldest — a 6-year-old son, Uthmaan and a 4-year-old daughter, Nasteexo — received an autism diagnosis in the past couple of years. Hagi-Mohamed also knows that she doesn't see autism represented accurately in the media or in her community.

"You'll see on TV a very stereotypical white man who's a supergenius. That's not what it always looks like," said Hagi-Mohamed, who is Somali. "Then I thought about, in my language and culture, how is it seen? The reality is autism is seen with a very negative stigma attached to it."

On top of that, she added, the word "autism" doesn't exist in Somali.

But that's changing: Over the past year, a group of medical professionals, people with autism, and parents have been leading efforts to come up with positive terms to talk about autism and neurodiversity in Somali.

Hussein Awjama, a recent pharmacy school graduate, also joined the call to share research he had been doing since 2020 about autism terminology in Somali.

After coming up with five terms, the group narrowed the list down to two. One of them, maangaar, translates to "unique mind." For Hagi-Mohamed, it was the perfect way to describe her children.
The word "autism" comes from the Greek word for being withdrawn into one's self. The term was first created in 1911 by psychiatrist Paul Eugen Bleuler. Autism spectrum disorder is a developmental disability caused by differences in the brain, according to the Centers for Disease Control and Prevention (CDC). People with autism may communicate, behave, interact, and learn in different ways from other people.

Scant data exist on the prevalence of autism in specific immigrant communities. But the Minnesota-Autism Developmental Disabilities Monitoring Network, a group of programs funded through the CDC, researches the number of children with autism and other developmental disabilities in Hennepin and Ramsey counties.

The monitoring group reports that autism rates for Somali 8-year-olds track closely with the state's overall autism rates in 2018, according to Jennifer Hall-Lande, the project's principal investigator. Overall, 1 in 36 8-year-old children in Minnesota have autism. In the Somali community, 1 in 29 8-year-olds have autism.

Among 4-year-olds, Somali children registered higher autism rates than other racial and ethnic groups. In Minnesota, 1 in 44 4-year-olds have autism, compared to 1 in 21 Somali children of the same age.
State News:
Delaware - JFC Votes to Increase Funding to Support Adults with Intellectual and Developmental Disabilities
By Paul Kiefer, Delaware Public Media, May 25, 2022
The budget-writing Joint Finance Committee votes to provide long-promised funding for people working with adults with intellectual and developmental disabilities.

The dollars are part of the Michael McNesby Act, which the state legislature passed unanimously in 2018. The act intended to increase pay for service providers, whose incomes – dependent on reimbursement by the state and federal government – had not kept pace with the value of their labor.

After four years, JFC signed off on an additional $16.5 million to help compensate and retain support staff; the federal government will provide another $27.5 million in matching funds. Those dollars would add to another $17.2 million increase in reimbursement rates for service providers included in the 2022 budget.

Ability Network Delaware assistant executive director Carolyn Petrak says the funding will benefit service providers and family members who count on them.

“Many of them are elderly in their 70s and 80s or older and they're caring for themselves and their adult — and sometimes elderly adult — children that need a place to go and someone to take care of them when their parents are no longer here," she said.
Family members in the committee’s hearing room on Tuesday burst into cheers when the committee announced that it would fund the McNesby Act.
Petrak added that the funding will be critical to dealing with high vacancy rates and turnover among service providers.

“The work that direct support professionals do far exceeds the work of the average minimum wage job, making it extremely hard to recruit and retain qualified people to do this work," she said. "Now that we have full funding, hopefully we will be able to compete with growing wages in other sectors."

The delay in funding has already taken a toll. The committee's vote came just days after one Wilmington care provider—the facility where Michael McNesby, an advocate for whom the bill was named, worked for nearly three decades— closed its doors. Earlier this week, Gov. John Carney deployed Delaware’s National Guard to assist a state-run residential provider struggling with staffing shortages, which were exacerbated by the COVID-19 pandemic.
By Dave Kassel, COFAR Blog, May 31, 2022

COFAR is urging state legislative leaders to correct language in state budget legislation that mistakenly implies that the U.S. Supreme Court ordered the closures of institutions for persons with developmental disabilities.

The language in a budget line item cites Olmstead v. L.C., the Supreme Court’s landmark 1999 decision, which considered a petition by two residents of an institution in Georgia to be moved to community-based care. The Olmstead decision has been frequently mischaracterized as requiring the closure of all remaining state-run congregate care facilities in the country.
According to this characterization, Olmstead further required that all residents of those facilities, which include Intermediate Care Facilities (ICFs), be transferred to community-based group homes.
In one of three instances in which COFAR is seeking changes or corrections, the Massachusetts budget line item language states that the Department of Developmental Services (DDS) must report as of December 15 to the House and Senate Ways and Means Committees on “all efforts to comply with …Olmstead…and… the steps taken to consolidate or close an ICF…”

However, in letters sent last week to the chairs of the House and Senate Ways and Means Committtees, COFAR noted that closing institutions was not the intent of the Olmstead decision, which was written by the late Justice Ruth Bader Ginsburg.

As our national affiliate, the VOR, has pointed out, “the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual.”

We are concerned that the misstatements in the ICF line item in the state budget each year could allow the administration and Legislature to justify continuing to underfund the line item, and possibly to seek the eventual closures of all remaining ICFs in Massachusetts. Those ICFs consist of the Wrentham and Hogan Developmental Centers, and three state-run group homes on the campus of the former Templeton Developmental Center.

The problematic language in line item 5930-1000 is included in both the House and Senate Ways and Means Committee versions of the budget for Fiscal Year 2023, which begins on July 1.
New York - NYS OPWDD Announces Release of Five-Year Draft Strategic Plan

Press Release from the NY Office of People with Developmental Disabilities, May 27, 2022

Seeks Additional Public Comment on Plan Developed in Collaboration with Stakeholders to Enhance System of Supports

The New York State Office for People With Developmental Disabilities (OPWDD) has released the agency’s 2023-2027 Draft Strategic Plan for public review and comment.

“This draft Strategic Plan represents a new direction informed by our stakeholders throughout a significant feedback process,” said Kerri E. Neifeld, OPWDD Commissioner. “With the input and support of all of our stakeholders – people who receive services, their families, advocates, provider agencies and Care Coordination Organizations – it presents an agreed-upon course of action, a shared vision of our top priorities and the activities and projects we will undertake to achieve them.”

The draft Strategic Plan, now available on OPWDD’s website represents the culmination of an extensive planning process undertaken in 2021 in collaboration with OPWDD’s stakeholders and service system partners throughout New York State.

With release of the draft Strategic Plan, OPWDD invites the public to provide comment by participating in one of two virtual public hearings on the draft plan. Hearings will be held June 8th from 11 am to 1 pm and June 9th from 5:30 pm to 7:30 pm. To listen to the hearings, visit this link. To request to speak at the hearings follow this link to register.

OPWDD will also collect feedback on the draft plan through an online form or by email at [email protected]. In addition, OPWDD will schedule numerous in-person opportunities for interested parties to comment on the draft plan throughout the summer months in locations soon to be announced across the state.

OPWDD will consider all feedback received and use it to finalize the draft Strategic Plan for submission to the New York State Legislature by November 1, 2022.
Medical Research:
Disclaimer - We have been publishing an unusual number of articles on medical research into intellectual disabilities, autism, and brain development in the Weekly Newsletter recently. Obviously, we are in no position to peer-review any of these studies. We present them in a spirit of gratitude that researchers are devoting time and resources to these matters, and in the hopes that they will be of interest to our readers.
Broad Spectrum of Autism Depends on Spectrum of Genetic Factors
By Scott LaFee, UC San Diego News Center, June 2,2022

Autism Spectrum Disorder (ASD) is referred to as a “spectrum” because clinical features of ASD range from mild social impairments in some people to severe intellectual disability or epilepsy in others. Genetic studies have offered clues, identifying genes associated with ASD, but despite finding many pieces to the puzzle, scientists have not yet figured out how they all fit together, and why there is such wide variation in ASD symptoms.

In a new study, published in the June 2, 2022 online issue of Nature Genetics, an international team of scientists, led by researchers at the University of California San Diego School of Medicine, report significant progress in understanding how the combined effects of rare mutations and common genetic variation determine whether a child will develop ASD.

“We have known that the genetics of autism is complex, but we didn’t really have a picture of how genetic inheritance of rare and common variants works in families,” said senior study author Jonathan Sebat, PhD, professor and chief of the Beyster Center for Molecular Genomics of Neuropsychiatric Diseases at UC San Diego School of Medicine.

In the latest study, Sebat’s team analyzed the genomes of 37,375 individuals from 11,213 families in which at least one member (child or parent) had diagnosed ASD. The goal was to determine how combinations of genetic factors contribute to risk and clinical symptoms. The researchers looked at a variety of factors, such as de novo mutations, which are new genetic changes that occur for the first time in a child; rare variants that are inherited from the parents; and polygenic scores that quantify the genetic load of common variants of small effect.

“When you combine all the major factors that we can detect in a genome,” said Sebat, “the predictive value of DNA sequencing more than doubles compared to when you test just one category at time. Combining rare gene mutations with polygenic scores has the potential to make genetic testing more accurate.”

Sex is another major factor that influences autism risk. Males are diagnosed with ASD at ratio of 4 to 1 compared to females. In the new study, the authors showed that the lower prevalence of ASD in females is in part due to a “female protective effect” in which females have a greater tolerance for genetic risk than males. They found that the total genetic load was greater on average in females than in males, both in children with ASD and in their typically developing siblings. “Both rare variants and polygenic scores show evidence of a ‘female protective effect’”, said Sebat, “This suggests that the ‘liability threshold’ for autism differs by sex with females having a greater threshold than males.”

The researchers also looked at the effects of genetic factors on a variety of behaviors, including social communication, repetitive behaviors and motor coordination. They found that genetic factors influenced the severity of symptoms in children with ASD and in their typically developing siblings and parents. They also found that different factors were associated with different symptoms. Rare variants and polygenic scores had an influence on social communication, but only rare variants had an influence on motor coordination.
Scientists Uncover Key Factor In Human Brain Development
Texas A&M College of Medicine researchers have answered a major question about how the neocortex develops, offering insights into the underlying causes of intellectual disabilities.
By Lindsey Hendrix, Texas A&M University Health Science Center June 2, 2022
Scientists at the Texas A&M University College of Medicine have made a breakthrough discovery about the development of the brain. This new information contributes to our understanding of how the part of the brain that makes humans more intelligent than other mammals develops, and offers insights into what causes intellectual disabilities, including autism spectrum disorders.

For years, experts have known that a thin layer of cells in the neocortex — the part of the brain that controls higher order functions such as cognition, perception and language — is directly correlated with intelligence in mammals. The larger the surface area of the neocortex, the more highly developed the mental capacity of that organism. For example, the thickness of the human neocortex is only about three-fold greater than that of mice. Yet, the surface area of the human neocortex is 1,000-fold greater than that of mice. Malformations in this part of the brain progress to developmental deficits that include autism spectrum disorders and intellectual disabilities.

What’s not understood is how evolutionary expansion of this part of the brain occurs preferentially in favor of expanding surface area of the neocortex at the expense of increasing its thickness. How the earliest populations of neural stem cells — the building blocks of the brain — distribute themselves is a key factor in this process.

“There are many, what we’ll call, individual processing units that are horizontally arranged in the neocortex. The more surface area you have, the more of these processing units you can accommodate,” said Vytas A. Bankaitis, Distinguished Professor at the College of Medicine, E.L. Wehner-Welch Foundation Chair in Chemistry, and co-author of this study, which was published in Cell Reports. “The question is, why is the neocortical surface area so much greater relative to its thickness as one climbs up the mammalian evolutionary tree? Why do neural stem cells spread themselves in a lateral direction as they proliferate and not pile on top of each other?”

This question is key because when the cells do not spread out, but instead pile up, it creates a thicker neocortex with a smaller surface area — a characteristic that has been observed in cases of intellectual disability and even autism.

“One of the most studied genetic causes of intellectual disability is a mutation in a gene that was originally called LIS1,” said Zhigang Xie, assistant professor at the College of Medicine and co-author of the study. “This genetic mutation will cause a smooth brain, which is associated with intellectual disability. And one typical observation is that the neocortex of the patient is thicker than normal. There are also very recent studies that identify common differences in the brain of autism that include abnormally thickened regions of the neocortex in those individuals.”

The results of this study uncover an important factor in the underlying causes of autism risk, intellectual disabilities and neural tube birth defects. The new knowledge on the basic principles regulating the shape of the neocortex will also help the design of in vitro brain culture systems that more accurately reflect the developmental processes of interest and improve the prospects for neurological drug development.
Direct Support Professionals:
Opinion: Michigan’s Direct Care Worker Shortage is an Emergency
By Sarah Hubble, Bridge Michigan, May 19, 2022

For people with mental illness or developmental disabilities, daily life can be filled with unknowns. How will they live life fully, despite the obstacles they face? How will they achieve their dreams?

Today, however, there are more urgent questions. How will they remain safe? Where will they find the care they need, given the shortage of skilled workers available?

Here in Michigan, the direct care worker shortage has grown from a slow-burning crisis to an outright emergency. As director of an agency charged with providing behavioral health care to residents in the Midland area, I have never experienced a reality like this. Not only am I struggling to find and retain staff, but I am literally having to turn away individuals and families in need of care.

This is completely unacceptable for a 21st-Century society. And it’s a tragedy for Michigan’s most vulnerable residents. As a state, we can – indeed, we must – do better.

These issues have been caused by multiple complex factors. Over the years, individuals in need of care have increasingly relied on Medicaid-funded services and supports. Federal Medicaid dollars are allocated and distributed by the state through a system known as a pass through. The Michigan Legislature sets the amounts of the pass throughs, and the MDHHS makes them happen.

Through Medicaid-funded support, people can live independently, with the support of Direct Care Workers (DCWs). My agency employs those DCWs here in Bay, Saginaw and Midland counties. Unfortunately, the amount of money allocated for their salaries by the Michigan Legislature is not enough to keep them on the job in today’s labor market.

When fast-food and retail establishments are paying upwards of $18 per hour to high school and college students, it is unconscionable for skilled caregivers to be earning far less. Today’s starting wage for DCWs is around $14 per hour – an amount that is roughly equivalent to the amount young teens can earn at their first job in today’s market.

Worse still, this dollar amount doesn’t increase based on DCW skills or experience. Instead, amazing individuals are kept on a treadmill of incredibly difficult, arduous tasks and paid at the same level they would be if they were a 15-year-old whose only responsibility is scooping ice cream.

My agency is struggling, as are the individuals and families we serve. I can’t keep DCWs on the job because the pay is simply too good elsewhere. I am regularly forced to tell people in urgent need of support that we can’t give them the aid they require.

There’s little I can do to change this reality. Given that these workers are paid via Medicaid wage pass throughs, I can’t simply offer more money. What I can do – creating a supportive work environment, keeping people as happy as possible on the job – is not enough, not in a job market that’s as tight as this one is.

I honestly don’t know how my organization has lasted this long. We’re at the absolute limit of our financial capacity, and every day is a struggle.
VOR ❤️s OUR 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


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]

VOR SUPPORTS:

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.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.


VOR OPPOSES:

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.
Help Us Help:
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to smile.amazon.com instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
droppable-1631310642232
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377