December 10, 2021
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
Human Rights Day
December 10, 2021

VOR's Mission has always been to advocate for
Human Rights and High Quality Care for all people with
Intellectual and Developmental Disabilities

Today, we celebrate Human Rights Day by protecting
A Family's Right To Choose
the best residential treatment settings and employment opportunities
for their loved ones with I/DD.
VOR's End of Year Fundraising Campaign

Our goal for this year is to make at least $45,000 in donations during the months of November, December, and January. So far, we're halfway there, but there we still have a good way to go.

And please don't think we wouldn't be delighted to exceed our goal. In past years, we have even surpassed $65,000!

We rely on your support, to support families like yours who rely on us to keep them informed, to advocate and to educate, and to speak

Please help us to reach, and to exceed, our goal for this year.
We are happy to announce that we did receive enough donations before Thanksgiving to qualify for the $5,000 match that one of our donors had promised.

We are even happier to announce that they have now extended their offer to
match another $5,000 if we receive it by Christmas!

So please help us. The first $5,000 in donations we receive in the next 15 days will bring us double the value in

International and National News:
First-of-its-Kind Commission Defines ‘Profound Autism,’ and Issues Recommendations
By Laura Dattaro, Spectrum News, December 6, 2021

The term ‘profound autism’ should be used to describe autistic people who require round-the-clock, lifelong care, a team of autism researchers, clinicians, autistic adults and parents of autistic people announced today.

The guidance is part of a set of suggestions for the field to improve autistic people’s medical care and clinical research on the condition. Other recommendations include a shift toward personalized medicine; adapting services for low- and middle-income countries; and prioritizing funding for research projects that can immediately enhance the lives of autistic people.

The team decided to focus on improvements that could be implemented in the next five years rather than longer-term goals, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles, who co-led the group, which was convened by the editors of The Lancet. That meant turning away from basic science research, such as identifying biomarkers or developing treatments that are gene-specific.

“The question is not, ‘Should we stop doing that?’ — which absolutely we should not stop doing that,” Lord says. “It’s, ‘What do we do in the meantime?’”

The Lancet commission on autism also decided to make recommendations that could be adapted in any country, regardless of resource level, members of the commission say.

The group of 32 representatives from 10 countries first met at the 2019 International Society for Autism Research annual meeting in Montreal, Canada, followed by gatherings at the University of California, Los Angeles, in late 2019 and at the journal’s London office in February 2020, just before the start of the pandemic.

he report formally introduces the term ‘profound autism’ to refer to autistic people with severe intellectual disability, limited communication abilities or both. The term should not be used for children younger than about 8 years old, and it may be more appropriate for adolescents and adults, the report notes.“The main purpose was to call attention to the fact that these kids and adults exist, and that they do need different services,” Lord says. “And that we can predict who they will be, not at age 2 but by age 8 or 9, and we need to plan for them.”

The term is a welcome introduction, says Bölte, who has worked to define autism functioning categories for the World Health Organization’s International Classification of Functioning, Disability and Health. It should also help researchers clarify who is participating in their studies, he says.

“Autism is a huge spectrum, and you can have people with very, very high clinical demands and services,” Bölte says. “They need very comprehensive clinical attention.”

Opinion: Lancet Commission Calls for New Category: "Profound Autism"
By Amy S. F. Lutz, Psychology Today, December 7, 2021
Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”

This move represents just the most recent example of a growing dissatisfaction with the monolithic diagnosis of Autism Spectrum Disorder that was introduced in DSM-5 eight years ago in place of more narrowly defined categories such as Asperger Syndrome, Autistic Disorder, and Pervasive Developmental Disability, Not Otherwise Specified (PDD-NOS). Last month, the National Council on Severe Autism (NCSA) — on whose board I serve — issued a position statement calling for a “distinct, stand-alone diagnostic category” for the most impaired, and the use of “autisms” rather than “autism” to emphasize the extraordinarily diverse presentations of the disorder has been popular for several years at the most prominent autism conferences, such as the International Society for Autism Research (INSAR).

Advice to Families:
If You Have a Child with Special Needs, Here’s How to Plan For Their Life After You Pass
Deborah Nason, CNBC Personal Finance, December 6, 2021

Note: VOR does not endorse the specific financial advice presented in the article below. We do wish to use this as a way to remind families of the need to plan for your loved ones with I/DD, and we encourage you to consult with your own financial experts to determine how best to provide.

For parents who have a child with special needs, planning for their loved one’s life after they themselves are gone can be overwhelming. Breaking the process down into manageable parts and working with specialized professionals and companies can help.

“The three main structures a family should put in place to provide future protection for their child relate to money management, self-care and housing,” said certified financial planner Michael Beloff, partner and Chartered Special Needs Consultant with Belvedere Wealth Partners in Stamford, Connecticut.

Money management: If the child receives government benefits, such as Supplemental Security Income or Medicaid, parents will usually establish a so-called special needs trust that will shield assets to allow the child continued access to those benefits. The trustee is the person who oversees the funds and other trust provisions not under the child’s control, Beloff said.

Life insurance is essential, said CFP Colin Meeks, founder of Maryland Financial Advocates in Baltimore.
“It’s the cheapest way to fund a trust,” he said. “Because you need to know what’s left over [from your estate] in order to care for the child, it creates that certain bucket of money.”

Self-care: Parents must arrange the services their child will need to live independently or semi-independently (e.g., household management, medication management, doctor visits, personal care, etc.).
These supports may be overseen by a court-appointed conservator (or guardian, depending on the state) who makes all decisions regarding an individual’s financial and/or personal affairs, or by a person with power of attorney, who can make decisions, as well as the individual, Beloff said.

Parents are encouraged to write a “letter of intent,” a common planning tool that serves as a guide for those who will care for the child in the future. It should cover family history, medical care, benefits, daily routines, diet, behavior management, residential arrangements, education, social life, career, religion and end-of-life decisions.

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

  1. Just go to instead of the regular 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. Then paste a link to AmazonSmile into your bookmarks, and use that link every time you shop!

Thank you for supporting VOR!
State News:
Iowa - Feds say Iowa is ‘Heavily Biased’ Toward Institutionalizing the Disabled
By Clark Kauffman, Iowa Capitol Dispatch, December 8, 2021

The U.S. Department of Justice announced Wednesday that Iowa is “heavily biased” toward institutionalizing people with intellectual disabilities.

The findings are the result of a long-running investigation into the state-run Glenwood and Woodward resource centers for people with intellectual and developmental disabilities. The investigation centered on the issue of whether residents of facilities are subjected to unnecessary institutionalization in violation of the Americans with Disabilities Act.

The Glenwood and Woodward facilities are run by the Iowa Department of Human Services, which said Wednesday that it is “not surprised by anything” in the Justice Department’s report and remains proud of the work that has been done in an effort to address the issues cited by federal investigators.

In its report, the Justice Department said there is “reasonable cause” to believe Iowa fails to provide services to residents of the two centers in the most community-integrated settings that are appropriate to their needs.

Iowa’s system of care for people with intellectual and developmental disabilities is “heavily biased toward institutionalization,” the Justice Department stated in its report. Critical services and support that would allow residents to live in their own homes and communities — such as behavioral, crisis and physical health supports — are often unavailable outside the centers.

Iowa also fails to provide residents and their guardians with sufficient information about community options that do exist, the Justice Department said. As a result, many resource center residents who could receive desired services in the community are needlessly segregated in institutions.

Iowa - Worker Shortage Causes Pella Group Home to Close
By Staff, KYOU-TV. December 3, 2021
The worker shortage is causing pain for a Pella family. They just learned their son’s group home must close because their provider can’t find support staff to work there.

And that’s bad news for JR Van Vark. He has been washing dishes at Pella High School since he was a student — more than 25 years ago. It’s a job that he loves and that easily accommodates his autism and learning disabilities.

“On some days it can be a little hectic. But other times not so much,” Van Vark said.

But his life is in for a big change. He recently moved into a Pella group home with three other men to spend more time on his own, away from his parents.

“We would hate to see him have to move out of town. Our concern is for him,” said JR’s father, Greg Van Vark.

Greg got the shock of his life a few weeks ago when his son’s group home announced it was closing.
“We want a stable environment for JR, and we thought we had that,” Greg said.

Christian Opportunity Center operates several group homes in Central Iowa. And they suffer with a major problem. They can’t find support staff to work in the homes. That means closing the doors to the Pella home.

“We hate doing it, because this is what we do,” said Christian Opportunity Center Executive Director John Eilers.

EiIers says he regrets telling families about the shutdown of one of their homes. He says he has 50 job openings, so cutting back is the only option.

“This is far more critical than we’ve ever experienced before, and it’s not just us. Other organizations like us are having the same struggles,” Eilers added.

New York Group Homes Have a Staffing "Crisis", Syracuse Families are Paying the Price
By Conor Wight, CNY Central, December 9, 2021
Staffing levels in group homes have reached a "crisis" point according to the New York State Office of People with Developmental Disabilities, and families in Central New York are paying the price.

Caleb Smith is currently living in a child group home in Rome, but he won't be eligible to stay there by next summer. Caleb turns 21 next week and is expected to graduate from the program in June - which means he'll need an adult group home. The major problem, according to his sister Madelyn, is actually finding one that will take him.

"If there's an individual that needs more care or has a behavior plan, then they're getting rejected because these agencies just don't have the staff to support those houses," said Madelyn.

They're experiencing something that Madelyn's caseworker tells her is common for many families across the state, unable to move to group homes as a result of staffing issues - others are being moved from homes they already live in, as the state's OPWDD consolidates some facilities amid the "crisis".

According to OPWDD, they have closed 9 state-operated group homes in Central New York
counties since September; they've also lost 259 staff members across the region since April of 2020, according to the agency.

CNY Central reached out to OPWDD Thursday to ask whether adult group homes are unable to accept new residents at this time, and why Caleb may be in the situation that he's in.

The agency sent this in response, not answering the question: “Requests for residential services are based on need and a person-centered planning process is used to help people find supports in the most integrated environment possible. The Office for People With Developmental Disabilities (OPWDD) provides housing supports to over 40,000 New Yorkers with developmental disabilities. Every year, more than 1000 people move from home into OPWDD-funded housing.”

Nebraska - Labor Shortage Disrupts Developmental Disability Services; 2,866 Nebraskans on Waiting List
By Martha Stoddard, Omaha World-Herald, December 3, 2021

Nebraska's workforce crunch has stymied efforts to shrink the list of people waiting for developmental disability services, a panel of state lawmakers was told Friday.

The state budget included enough money to add long-awaited services for 500 people this fiscal year. But five months into the fiscal year, none have been able to start services because providers don't have enough staff, according to Alana Schriver, executive director of the Nebraska Association of Service Providers.

"In fact, many providers are being forced to send notices to people already in service that their needs can no longer be safely met, let alone serve new referrals," she said. "We are in a worse position today than at this same time last year."

To hang on and compete for workers, Schriver said providers need a 30% boost in payment rates from the state. The increase, which would cost an estimated $43 million, would be similar to the pay raises recently approved for front-line employees at the Beatrice State Developmental Center, a state-run institution for people with developmental disabilities.

Schriver spoke at a Health and Human Services Committee interim study hearing about the state's developmental disability services waiting list.

Lawmakers also heard from Tony Green, director of the Developmental Disabilities Division of the Nebraska Department of Health and Human Services. He reported that there were 2,866 people on the waiting list as of Nov. 1. They are seeking a wide range of services, including job coaches, group homes, respite, transportation, independent living support and adult day care. Some people are receiving some services but are on the waiting list to get additional ones.

Many have spent years on the waiting list. Green said the current budget should allow the state to offer services to people who applied as of June 1, 2015.

But Schriver said a survey of providers showed that they are 30% short of the staff needed to provide essential services for current clients, forcing them to make heavy use of overtime and to operate with minimal staff. In at least one case, she said, the agency director has been covering overnight shifts at group homes.

Related News: Crisis In Other CMS Long-Term Care Facilities:
Long-Term Care Providers Get Help from National Guard
By Danielle Brown, McKnight's Long-term Care News, December 6, 2021

Providers in New York and Minnesota are receiving additional help from National Guard forces to aid with severe staffing shortages amid worries about the omicron variant.

NY Gov. Kathy Hochul (D) last week announced her state was ready to deploy National Guard members to help short-staffed nursing homes. On Thursday, she released additional details about the plans and said that National Guard medical teams will be supporting identified facilities where additional help and resources are needed.

One of those facilities is the 589-bed A. Holly Patterson Extended Care facility in Uniondale, Newsday reported this weekend. Ten Guard members are being sent to the five-star facility early this week, and some 120 medical Guard members will be available statewide, typically in teams of two.

In Minnesota, National Guard members have begun practicing bedside care on mannequins and each other as they prepare to be deployed into nursing homes.

The weeklong training is being given to about 300 troops since most don’t have any prior training in nursing care.

That lack of experience had been a criticism of long-term care providers in New York and elsewhere who received Guard support during previous COVID waves.

Nursing homes lost about 221,000 jobs between March 2020 and October 2021. Hiring has also failed to recover. Federal data showed that nursing homes lost another 8,400 jobs in October.

How Nursing Homes’ Worst Offenses Are Hidden From the Public
Thousands of problems identified by state inspectors were never publicly disclosed because of a secretive appeals process.
By Robert Gebeloff, Katie Thomas and Jessica Silver-Greenberg, New York Times, December 9, 2021
The biggest component of nursing homes’ star ratings are the inspections conducted by state health investigators. Facilities that ace their inspections are on track to get up to five stars, whereas those that flunk will struggle to get more than one or two stars.

There’s big money at stake. Because of the weight that people place on the star ratings, researchers have found a connection between better inspection results and greater profits. The Times analyzed nursing homes’ financial statements from 2019 and found that four- and five-star facilities were much more profitable than lower-rated facilities. (For-profit companies own about 70 percent of all U.S. nursing homes.)

Inspectors visit every nursing home once a year or so for general inspections and in response to complaints. They spend several days combing through medical records, tagging along with nurses and aides as they do their work, interviewing staff and residents and even testing the temperature of the morning coffee.

When inspectors encounter problems, they can propose issuing a citation. First, though, they must build a case by compiling things like witness statements and medical records. Supervisors often vet citations before they’re issued to ensure that violations are properly investigated and documented.

The vast majority of citations are minor. But a fraction are deemed serious, faulting nursing homes for putting their residents in “immediate jeopardy” or causing “actual harm.” On each nursing home’s listing on Care Compare, there is a section that shows whether they have received any such citation in recent years.

The violations then are incorporated into a formula that helps determine a facility’s star rating. The more severe the violations, the heavier the toll on the rating.

For decades, federal watchdog agencies have criticized state inspectors for taking a light touch with the nursing homes they oversee.

Inspectors rarely deem problems to be serious enough to harm homes’ star ratings. From 2017 to 2019, The Times found, inspectors wrote up more than 2,000 five-star facilities at least once for not following basic infection-control precautions, like having employees regularly wash their hands.
Life Care Center of Kirkland, Wash., has a top rating

At 40 other five-star homes, inspectors determined that sexual abuse did not constitute actual harm or put residents in immediate jeopardy.

The reasons are complicated. Inspectors tend to be overworked and poorly paid. Writing up a facility for a serious violation requires extra paperwork and additional visits to check that the home has fixed the problem.

Another factor, inspectors say, is that they have been conditioned to expect blowback when they cite homes for serious problems.

“I feel sometimes the things I cite don’t mean anything because it gets tossed out at the state level or they determine it not to be as severe,” an unnamed inspector said in a 2013 survey conducted by the Center for Medicare Advocacy, a consumer rights group. “Sometimes it makes you wonder why we spin our wheels on a problem.”

Public officials have urged inspectors to nudge nursing homes to improve, instead of punishing them.

Oklahoma’s inspections agency referred to nursing homes as its “clients,” according to a letter from the agency reviewed by The Times. Inspectors in Pennsylvania complained about being told to be “kinder and gentler” with nursing homes, according to the 2013 survey. Last year, in the depths of the pandemic, the California department of health told inspectors to act as safety “consultants” to nursing homes and to not take on an enforcement role. (The policy was scrapped after inspectors objected.)

In Arkansas, some inspectors said supervisors discouraged them from citing homes for immediate jeopardy or actual harm, even when they spotted dangerous conditions.

“Deficiencies are thrown out all the time,” said Lisa Thomas, who previously oversaw the training of the state’s inspectors. (She said she was fired in 2019 after complaining to the governor’s office about the agency.)

Gavin Lesnick, a spokesman for the Arkansas Department of Human Services, denied that inspectors were discouraged from citing nursing homes for serious violations. He also denied that Ms. Thomas was fired for her complaint. “The safety and health of the patients is our number-one priority, and why all of our staff come to work every day,” he said.

Nice Story of the Week:
Anyone who grew up in St. Louis remembers these happy cookies from McArthur's, which is now creating cookie decorating jobs for local adults with intellectual and developmental disabilities via Lafayette Industries' StepUp Program.

"Our StepUp team members decorate each oversized butter cookie with great care and truly love their jobs," said McArthur's Bakery owner Scott Rinaberger. "We are happy to bring these special cookies and their job-training mission to a much bigger audience through Schnucks."
"We are excited that Schnucks is able to help local companies like McArthur's bring their delicious products to our customers and thrilled to support their mission of helping adults with intellectual disabilities maximize their abilities," said Janell Schleeper, Schnucks Bakery Category Manager. "Each delicious cookie is individually decorated with a smile by a McArthur's employee, and it warms my heart to think about all the smiles that, together, we will bring to our customers."

Year-End Giving for VOR

For those members who have been blessed to reach their seventies, and who will be required to take a distribution from their IRA's by December 31, 2021, please consider using this opportunity to make a contribution to VOR.

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.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.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. 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 - 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.
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.

What's Happening In Your Community?

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

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