May 20, 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's Annual Members' Meeting

Celebrate VOR's 39th Year of Family Advocacy


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

Schedule of Events

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

  • 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

Opportunities to Meet with Other Families!
Our World Renowned Cakeless Bake Sale!

All times are subject to change...

Registration is Open!

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.
State News:
Oklahoma - Almost $200M Expected to Eliminate 13-Year-Long Waiting List for Disability Services
By Ali Meyer, KFOR News, May 17, 2022
Oklahoma state leaders have announced their intention to end the waiting list for developmental disability services.News 4 has been reporting on this important issue for months.

The waiting list for these services has grown to 13 years long.

That means, Oklahomans who first applied for a Medicaid waiver in 2009 are still waiting.

This week, the state legislature has unveiled their plan to use taxpayer dollars to eliminate the waiting list and fund services for every eligible Oklahoman on the list as of May 1, 2022.

As of this month, 5,134 Oklahoma families are waiting.

The Department of Human Services (DHS) has been trying to cut down on the waiting list for years. But the most funding the agency has ever requested from the legislative budget process is an additional $2 million a year.

This year, they asked for $21.3 million.

The legislature is poised to appropriate the entire $21.3 million, plus an additional $11 million to increase pay for care staff workers.

The state budget includes $32 million in state appropriation to eliminate the waiting list.

DHS has pledged an additional $19 million in cash, from operational efficiencies.
That’s $51.6 million in state funding.

A state contribution of federal funding draws another $122 million in for a total investment of $174 million.

The measure also increases the rate to direct care staff workers by 25 percent.

“We did something to try to get provider rates increase, so we can have providers,” said Senator Paul Rosino of Moore. “We can’t get rid of the list if we don’t have providers. So, they are looking at that and trying to find ways to fund them also.”

Stable providers are a lifeline for Oklahomans like Wanda Felty, whose daughter was on the waiting list for years.

She was moved off the list two decades ago, but has recently had trouble getting services for her daughter because of a labor shortage, exacerbated by low pay.

“This is incredible,” Felty said. “The opportunity to provide extra pay for the direct care staff that come into the home, and I’m going to tell you, I have seen that underpaid staff saved my daughter’s life.”

The federal dollars should start coming in by the end of the year.

Iowa - State Lawmakers Debate How to Fund Transition at Glenwood Resource Center
By Ryan Matheny, KMA News, May 19, 2022

State lawmakers are still debating how they will fund various transition costs associated with the upcoming closure of the Glenwood Resource Center.

Last month, Governor Kim Reynolds announced the state would close the state-run facility that provides residential care for Iowans with intellectual and developmental disabilities in the wake of a federal investigation into abuses by staff. This week, members of the Senate Appropriations Committee debated a funding bill for the Department of Health and Human Services. The House version of the bill -- which was passed prior to the closure announcement -- does not include any funding for transitioning residents to the state's other facility in Woodward or to community-based services. State Senator Mark Costello -- a Republican from Imogene -- chairs the HHS Appropriations Subcommittee. He says discussions are ongoing about how to fund the transition over the next two years.

"There is going to be a transition cost here," said Costello. "Community providers will need to be built up and strengthened. I believe there will be money in there for that, a substantial amount."

Additionally, state officials announced that current staff at GRC would be offered retention bonuses to stay through the closure before finding new jobs. Costello says how to fund those bonuses remains a point of contention between House and Senate members and the Governor's office.

"We also need to make sure that the Resource Center -- now that the announcement's been made -- that people still stay there until the clients can be transferred," said Costello. "So we're having to spend some money to keep people there, so they don't go off and find another job right away. We are trying to work that out and that's one of the issues is we're trying to make sure where that money is coming from. That's one of the issues we're still trying to clear up here."

Costello says there is a chance the GRC transition could be funded using some of the American Rescue Plan money allocated to the state from Congress.

"There are discussions as to how we can fund that," said Costello. "Whether it's through money that the governor has and she can use different ways or whether we can do it in the budget. That is one of the things we want to verify before this budget is finalized."

Senator Joe Bolkcom -- a Democrat from Iowa City -- cautioned against using ARPA funds for something he says should clearly be included in the budget. ARPA funds are used at the discretion of the governor and are not subject to budgeting from legislators. Bolkcom also worries that using temporary funds to pay for an ongoing issue could present challenges.

"There will be a time in the next two years that the American Rescue Plan money is not going to be there," said Bolkcom. "This committee is going to have to dig in and find the money. We're going to lose all this (Federal Medical Assistance Percentage) money in '25, Medicaid is going to bump in '25 and I think we're going to see the final deal have a lot of American Rescue Plan money supporting basic stuff that the state of Iowa should be supporting. We're going to get some of this out-of-state money to support Iowa stuff. I think the committee is setting itself up for a pretty substantial cliff in two years."

‘Like Torture’: For Californians with Special Needs, Getting to see a Dentist can take Years
By Kristen Hwang, Cal Matters, May 17, 2022
Tens of thousands of Californians with disabilities require special accommodations for dental care, but only 14 centers in the state can treat them.

The first time Namirah Jones visited the dentist at age 5, her meltdown brought the office to a halt. Her mother, Mia Costley, her grandmother and a dental assistant held her down while she screamed. The dentist couldn’t even get a mirror in her mouth.

“That’s when it was determined that no dentist could ever work on her; she would have to be put to sleep,” Costley said from their apartment in Corona.

Jones, now 19, has severe autism and an intellectual disability. She’s among tens of thousands of patients across the state whose disabilities — ranging from cognitive and physical disabilities like autism and cerebral palsy to complex health conditions like Alzheimer’s and Parkinson’s — require sedation during dental procedures, making basic dental care largely inaccessible.

A typical dental office cannot perform general anesthesia nor can it accommodate other disabilities requiring wheelchair lifts or other specialized equipment.

Instead, disabled patients languish on waiting lists for years at the few places that can see them — usually dental schools. When they get an appointment, it’s frequently a financial hardship requiring time off of work for caregivers, long drives from remote areas of the state, overnight hotel stays and out-of-pocket surgical fees.

“For more serious procedures people can be waiting for a year, which if you think about it, living with dental pain for a year is like torture,” said Tony Anderson, executive director of Valley Mountain Regional Center in Stockton. Regional centers oversee the coordination and delivery of services for Californians with disabilities. 

The situation is untenable, said California Dental Association president Ariane Terlet. The association is asking the Legislature to include $50 million in the budget to build special needs clinics and surgery centers across the state.

“The state is responsible for ensuring access to dental care for patients with special health care needs,” Terlet said. “If California is serious about its commitment to health equity, people with special health care needs must be provided timely access to dental care.”

Massachusetts - ‘This is tragic’: Mass Exodus of Human Services Workers Leaves Industry in Shambles
By Cameron Morsberger, Lowell Sun, May 14, 2022 (updated May 20, 2022)

The Baker administration and Massachusetts House have proposed $230 million in the FY23 budget be put into a rate reserve to incrementally raise the pay of human services provider agency workers, such as health care and group home workers, aides, therapists and other specialists.

But with inflation, increased interest in hybrid work, and small wages, a great number of people are quitting their jobs for the retail or food industry. And it’s causing a workforce crisis that some warn may destroy the human services field entirely.

Chris Tuttle, CEO and president of health provider Bridgewell, said the severe lack of funding has threatened to shut down some of its services. Bridgewell has more than 100 programs across eastern Massachusetts, serving 6,500 people each year in group homes, habilitation programs and mental health clinics in Lowell, Danvers and Lynn.

Tuttle said the state funding for these nonprofits, provided through Chapter 257, is simply not enough. Without an additional $351 million — over double the current allotment from the state — they will not survive, he said. At the current salaries they provide, Tuttle said human services work is no longer sustainable, but they are at the mercy of the state.

“The Chapter 257 line item at $230 million sounds like a lot, and it is, but the median salary is roughly $16.79 an hour, which is only about $34,923 a year. That’s before taxes,” Tuttle said. “We cannot attract staff, and because we can’t attract staff, we cannot expand our services. And in all honesty, we’re going to have to start looking about potentially taking services offline.”

Since the pandemic, more than 5,000 people have yet to return to programs throughout the state primarily due to the staffing shortage. Many of those people, Tuttle said, have developmental disabilities and are thereby losing valuable life skills support.

A couple of years ago, Bridgewell had about 140 to 150 job openings, but now, 317 jobs are unfilled. That’s nearly a quarter of the organization, Tuttle said.

Minnesota - 11% of State’s Nursing Homes Facing Closure
By Danielle Brown, McKnight's Long-Term Care News, May 9, 2022

About 11% of nursing home operators in Minnesota are considering selling their facility or closing their doors due to continued financial strain caused by the COVID-19 pandemic, a new survey has found. 

Findings were released Thursday by the Long-Term Care Imperative, a collaborative initiative by LeadingAge Minnesota and Care Providers of Minnesota. They reflect pressures occurring around the country, though Minnesota’s situation is believed to be worse than many others.

The analysis also revealed that the average nursing home is operating with a negative 8.7% operating margin and will lose about $900,000 annually. The poor financial performance is primarily driven by increased expenses, which includes wage increases and temporary staff use. 

“The staffing crisis is not brand new. We’ve had ongoing staffing issues in this profession, and until it’s viewed as a true profession where people want to come work in our communities, it is going to be a chronic problem,” Patti Cullen, president and CEO of the Care Providers of Minnesota said. “It needs to get addressed.”

Cullen added that the most surprising finding from the survey was that 44.8% of providers are operating on margins lower than negative 10%. 

“That’s unsustainable. Thinking about the ripple effect of that is pretty severe,” Cullen told McKnight’s Long-Term Care News on Friday. 

A separate survey recently found that Minnesota long-term care facilities have dealt with the most staffing shortages when compared to other states. 

Minnesota officials and lawmakers have pushed for solutions to address the shortages in the state, including calling for a $1 billion investment to boost pay for long-term care and other direct care workers and establishing a training program to increase the number of certified nursing assistants in facilities.

Rhode Island - State Must Pay $75K, Create Ombudsman for Failure to Provide Child's Special Needs Services
By Katie Mulvaney, The Providence Journal, May 16, 2022

The U.S. Department of Justice awarded the parents of a son diagnosed on the autism spectrum $75,000 in damages from the state for failing to ensure the family could access in-home services needed for the boy to continue to live at home. 

U.S. Attorney Zachary Cunha’s office announced Wednesday that justice officials had entered a settlement agreement with the Rhode Island Executive Office of Health and Human Services to resolve alleged violations of the Americans with Disabilities Act.

The settlement grew from a 2018 complaint made by the parents of the unnamed minor to the U.S. Attorney’s office, alleging that the state failed to provide their son with home support services under the Rhode Island Medicaid/Katie Beckett Program administered through the state Executive Office of Health and Human Services. The Katie Beckett program allows certain children under age 19 who have long-term disabilities or complex medical needs to become Medicaid eligible. 

The parents complained that the state authorized the boy to receive 25 to 34 hours per week of home-based therapeutic services and/or applied behavior analysis therapy in his family home beginning in at least 2014, according to Cunha’s office. The state provides such services to enable children with disabilities to remain in their own homes and communities. 

The parents alleged, however, that the state continually failed to reasonably adjust its policies to provide back-up care when staff became unavailable, and instead provided only half of the hours of services authorized per week, on average, federal prosecutors said. 

The parents said that the lack of needed services placed their son at serious risk of unnecessary segregation from the community. As a result, the parents feared that their son would be forced to leave their home and move to an institution. 

After the U.S. Department of Justice opened an investigation, the child entered an out-of-state residential treatment facility for several months.

Under the agreement, Rhode Island will modify its policies so that children with intellectual and developmental disabilities such as autism will receive the community-based services that they are authorized. It will require, too, that every family receive a family care plan, allow families to receive services from different provider agencies, and provide oversight to make sure children with disabilities receive authorized community-based services. The state will also create an ombudsman program to allow individuals and their family members to express concerns.

National News:
Murray, Warren, Wyden, Sanders Blast Private Equity Giant KKR for Grossly Substandard Care and Unsafe Living Conditions in Group Homes for People with Intellectual and Developmental Disabilities
Press release from the Senate HELP Committee (Health, Education, Labor, and Pensions)

(This press release refers to an article by BuzzFeed that was featured in the April 29th edition of the VOR Weekly Update Newsletter)

U.S. Senators Patty Murray (D-Wash.), Chair of the Senate Health, Education, Labor, and Pensions Committee; Elizabeth Warren (D-Mass.), a member of the Senate Finance and Banking, Housing, and Urban Affairs Committees; Ron Wyden (D-Ore.), Chair of the Senate Finance Committee; and Bernie Sanders (I-Vt.), Chair of the Senate Budget Committee, sent a letter to the Co-CEOs of the private equity firm KKR, blasting the company after a BuzzFeed News investigation revealed that following KKR’s acquisition of BrightSpring Health in 2019, the company provided grossly substandard care and unsafe living conditions in its intermediate care facilities (ICFs) – group homes for people with intellectual and developmental disabilities. Executives at KKR and BrightSpring are poised to cash out while patient safety and care quality is declining. The senators are seeking answers from KKR about its troubling business practices, which put the safety of patients at risk.  

“The BuzzFeed News investigation revealed that, after KKR’s acquisition, care at BrightSpring ICFs deteriorated, with regulators finding 118 instances of ‘dangerously low staffing’ in seven states – double the rate found in non-KKR owned facilities. During that same period, KKR boasted that the company increased BrightSpring’s revenue from $2.5 billion in 2018 to $5.6 billion in 2022. But there is no indication that these revenues were used to improve quality of care in ICFs: ‘conditions [at BrightSpring ICFs] grew so dire that nurses and caretakers quit in droves, a state prohibited the company from accepting new residents, and some of the most vulnerable people in its care suffered and died,’” wrote the senators. 
The senators called out the long-standing problem of private equity’s role in health care – which places short-term profit maximization above considerations for quality of care and patients. While KKR’s BrightSpring-owned small-scale ICFs in California, Indiana, Louisiana, North Carolina, Ohio, Texas, and West Virginia made up just 16% of ICFs, they accounted for a striking 40% of serious citations in these states. The BuzzFeed investigation revealed that nurses and other care workers had alarmingly high turnover rates, uncompetitive salaries, and inadequate training. 
BrightSpring and KKR’s failure to protect ICF patients and efforts to maximize profits also resulted in preventable injuries and deaths. In West Virginia, state officials accused BrightSpring of ignoring several warnings that led to at least one preventable death, and ordered BrightSpring to stop accepting new patients, eventually closing down 20% of the organization’s homes in the state. Managers at facilities reported facing pressure to keep homes full, even with patients they were unable to care for, to maximize profits.

Autism & Medical Research:
New Research May Change How We Think About the Autism Spectrum
By Amy S.F. Lutz, Inspectrum via Psychology Today, May 16, 2022

University of Toronto child neurologist Evdokia Anagnostou dropped a bombshell in her keynote at the annual meeting of the International Society of Autism Research (INSAR) in Austin, Texas, which may call into question the validity of the autism spectrum disorder (ASD) diagnosis.

Anagnostou and her colleagues had set out to use neuroimaging to identify brain differences unique to ASD, as compared to other neurodevelopmental differences like ADHD, OCD, and intellectual disability. And they did find that brain differences clustered into different groups—but not by diagnosis. In fact, brain scans could not distinguish children who had been diagnosed with ASD from those who had been diagnosed with ADHD or OCD.

“Dr. Anagnostou reported data from multiple papers that looked at over 3,500 children,” Dr. Alycia Halladay, Chief Science Officer at the Autism Science Foundation, explained to me. “These studies looked at multiple structural and functional features of the brain—including cortical gyrification (the way the brain folds in the cortex), connectivity of different brain regions, and the thickness of the cortical area—and found no differences based on diagnosis.”

Groupings did emerge, but they were along totally different axes. Added Halladay, “The brains themselves were more similar based on cognitive ability, hyperactivity, and adaptive behavior.” In other words, the brains of mildly affected autistic children looked much more like the brains of kids with ADHD than they did like those of severely autistic children.

Validity of the Autism Spectrum Diagnosis May Be at Stake

If replicated, these findings could have tremendous implications for our current diagnostic framework.

In 2021, the Lancet Commission—a group of 32 researchers, clinicians, autistic individuals, and family members—called for the creation of a new label, “profound autism,” that would carve out those autistic individuals who also suffer from cognitive and language impairments and require round-the-clock supervision. “Anagnostou’s data converge nicely with the Lancet Commission’s proposal,” Halladay observed. “They provide biological evidence for a category that was originally defined solely by external criteria.”

At the very least. The real question is whether this work demands an even more radical re-imagining of our classification of neurodevelopmental differences. If, as Anagnostou’s data demonstrates, cognition and hyperactivity are much more correlated with brain difference than variables like social deficit that have been considered core symptoms of autism, then perhaps it’s time to scrap our current model and introduce new diagnoses based on these more salient dimensions. Aligning our diagnostic system with underlying biology is the first step in the development of targeted interventions for some of the most intractable and dangerous behaviors exhibited by the developmentally disabled, such as aggression, elopement, self-injury, and pica (the compulsion to eat inedible objects).

As Anagnostou opened her talk, “Nature doesn’t read the DSM.” But, as our understanding of the brain advances, shouldn’t the DSM reflect these divisions in nature?

Protein Linked to Intellectual Disability Has Complex Role
By Tamara Bhandari, Washington University School of Medicine St. Louis, May 17, 2022

Finding therapies for fragile X may depend on understanding the many ways protein’s loss affects brain

Fragile X syndrome, the leading inherited cause of intellectual disability, is due to a genetic mutation that largely eliminates the fragile X protein, a critical element of normal brain development and function.
The fragile X protein modulates neuronal functions, including neurons within the so-called GABAergic system that regulates the activity of neural circuits. The protein’s absence throws that system off kilter, and so far, experimental therapies designed to reset the system by compensating for the missing protein’s functions have not been effective in clinical trials.

Now, researchers at Washington University School of Medicine in St. Louis have identified a previously unknown role for the fragile X protein in the GABAergic system. They have shown that the protein regulates the opening and closing of the GABA-A receptor in neurons from the brain’s memory center, thereby influencing how such neurons process information, a central part of learning and memory.
The findings, published May 17 in Cell Reports, indicate that the fragile X protein’s role is more complex than previously thought, and that finding effective therapies may depend on a more nuanced understanding of the myriad ways loss of this protein affects the brain.

“People think that since fragile X is related to the loss of a single protein, it is a simple disease that we can quickly understand and fix,” said senior author Vitaly A. Klyachko, PhD, a professor of cell biology & physiology. “But the reality is that the more we study, the more we understand it’s not simple at all. I think part of the reason why clinical trials fail may be because we don’t really understand what’s going on very well. It is possible that we need to fix more than one mechanism at the same time for patients to see any meaningful improvement.”

People with fragile X syndrome have intellectual or learning disabilities, social and behavioral problems, and characteristic physical features such as large ears and long faces. They also often are noted for their friendly dispositions. The condition affects about 1 in 7,000 males and 1 in 11,000 females, with males typically more severely affected. The fragile X gene is located on the X chromosome, so females inherit one good and one bad copy of the gene, but males have only the bad copy. There are no treatments that address the underlying cause.

What Are Early Signs of Autism Spectrum Disorder?
Here’s what parents should look out for in their kids
Cleveland Clinic Health Essentials, May 16, 2022
According to 2018 estimates from the Centers for Disease Control and Prevention (CDC)’s Autism and Developmental Disabilities Monitoring (ADDM) Network, the prevalence of autism spectrum disorder (ASD) is 1 in every 44 8-year-old children.

The signs and symptoms of autism spectrum disorder differ from person to person. “Autism spectrum disorder is a lifelong neurodevelopmental disorder that can be characterized by social challenges or repetitive behavior,” says Chiara Graver, BCBA, COBA, a behavior analyst with the Center for Autism at Cleveland Clinic. “Or maybe the way you communicate, learn or interact is different.”

You might be surprised to learn that signs and symptoms can often begin to appear early in a child’s life. “Parents and physicians typically start to notice signs before age 3,” Graver says.
“A good assessment can probably diagnose a child as early as a year-and-a-half old.” Kids start going to preschool around age 3, she adds, so that also might be why these signs are noticed more.

Diagnosing autism spectrum disorder isn’t necessarily something that happens by crossing items off a checklist. “It’s not like we have 10 check boxes where we say yes, yes, yes, yes, yes — autism spectrum disorder,” Graver says. “There are a lot of symptoms that overlap with other medical diagnoses.” However, here are some common signs that you might see:

Caring for Seniors with Autism
Parent Giving

When we hear about autism spectrum disorder (ASD), we often think about small children and the challenges they will need to face throughout their lives, but most often than not we forget that these children will grow up and turn into young adults and then seniors.

Although autism can’t be cured, there are many approaches that you, as a caregiver - whether you are a beloved family member or a paid professional - can make to facilitate the life of an elderly that has been diagnosed with ASD.

Autism Spectrum Disorder can be diagnosed at any stage in life, however, when it is rather later than earlier, it can be a little more challenging - but not impossible - to adjust. If diagnosed at a later stage in life, usually, a series of changes in the daily routine and care needs to be made.

If the diagnosis was made in the early years, this is something that you will be more accustomed to and dealing with a senior with Autism could be a little less changeling for the family.
We must all agree that one of the most important aspects of our existence is having a good quality of life, and so, with that in mind, here are some great tips on how to take care of seniors with ASD.

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]


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.


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:
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.

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What's Happening In Your Community?

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Do you have information or a news story you would like to share?
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