February 3, 2023

VOR's Weekly News Update

VOR is a national non-profit organization that advocates for

high quality care and human rights for all people with

intellectual and developmental disabilities.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


It's February!

For many folks, February is a month of Winter Doldrums, but for those who like to find the glass half-full, there's really so much to like about it.

The days are getting longer. We've made it through the ridiculousness of Groundhogs Day. We can celebrate Washington's Birthday, and Lincoln's Birthday, or take the day off for both of them on President's Day. We can learn and appreciate our country's history in a deeper perspective in Black History Month. And if you're into Sports, or Sports Betting, or wearing Sports Jerseys or eating Buffalo wings, nachos, and other sports-related snacks, there's going to be a Super Bowl this month.

But best of all, it's going to be Valentine's Day again, real soon!

And we would like for you to share your love with us,

on our Facebook page.

We have put up a VOR Valentines post on our Facebook Page for all our families and friends to post a loving thought to their family member with I/DD, a special caregiver or DSP, or whoever you can think of, with whom you would like to share a Valentine's wish or expression of gratitude.

It you would like to post a picture, you may send it to our wonderful Secretary, Rita Winkeler, at [email protected], and she will post it on our website.

So please, join us in spreading a little warmth in this Frosty February!

Another Way to Say Thank You

Have you thought about maybe making a recurring donation to VOR?

Many folks have found that recurring donations are an easier, more budget-friendly way to contribute.

May we suggest $19 per month?

We don't know why, but that seems to be the popular amount that many charitable organizations suggest. No matter; we are grateful for any gifts we may receive, be they recurring, annual, spur-of-the-moment, or in gratitude for past benefits or paying it forward for the future.

Click here to contribute to VOR

National News:

Study Finds Autism Rates have Tripled among Young Kids

By Katie Kindelan, ABC News, January 27, 2023

Autism is on the rise among young children, according to a new study.

The study, published Thursday in the journal Pediatrics, found that autism rates tripled over the last 16 years.

Researchers at Rutgers University looked at more than 4,000 8-year-olds in the New York and New Jersey areas.

They said the sharp rise in autism rates is largely due to greater awareness, better diagnosis tools and a broader definition of autism. Researchers also noted the greatest increases in diagnoses were amongst affluent children, concluding that children in underserved communities are not getting the same access to medical resources.

Autism, also known as autism spectrum disorder, is defined by the Centers for Disease Control and Prevention as a "developmental disability that can cause significant social, communication and behavioral challenges."

On the national scale, around one in 44 children has been diagnosed with autism spectrum disorder, according to the CDC. The “spectrum” means that there’s a wide range of symptoms and severity.

People with autism have a wide variety of traits affecting communication, behavior and socialization, according to the CDC.

A child of any race, socioeconomic status or ethnic group can get ASD. Boys, however, are four times more likely to be diagnosed with autism than girls based on a study of children aged 8 years old. Kids that have a sibling with autism, and especially a twin, are more likely to have autism. Those with developmental disabilities or genetic and chromosomal diseases such as Down syndrome are also more likely to have ASD. There is also evidence that kids born to older parents have an increased risk of autism, according to several studies.

Read the full article here

Related story:

Study: Even With Fivefold Increase, Autism Likely Undercounted

By Shaun Heasley, Disability Scoop, January 26, 2023

New research suggests that autism prevalence rose as much as 500% in recent decades, but it still may be underdiagnosed.

In an analysis of data on 8-year-olds in the New York-New Jersey metropolitan area between 2000 and 2016, researchers found that the number of children with autism and intellectual disability doubled over the time period. Among those without intellectual disability, however, the increase was fivefold.

Still, the study published online Thursday in the journal Pediatrics finds that disparities in diagnosis persist and many kids may remain overlooked. Children from affluent areas were 80% more likely than those from underserved areas to be flagged as having autism with no intellectual disability while Black children in this category were 30% less likely to be identified as compared to white kids.

“Better awareness of and testing for ASD does play a role,” said Walter Zahorodny, an associate professor at the Rutgers New Jersey Medical School and a senior author on the study. “But the fact that we saw a 500% increase in autism among kids without any intellectual disabilities — children we know are falling through the cracks — suggests that something else is also driving the surge.”

The study is based on data from the New Jersey Autism Study, which looks at 8-year-olds in four New Jersey counties biannually as part of the Centers for Disease Control and Prevention’s efforts to track autism prevalence. Across the 16-year study period, researchers found 4,661 kids with autism in the region, just over 32% of whom had co-occurring intellectual disability while the remainder did not.

“One of the assumptions about ASD is that it occurs alongside intellectual disabilities,” said Josephine Shenouda, an adjunct professor at the Rutgers School of Public Health and the lead author of the study, who pointed to older studies showing that as many as 75% of kids with autism have intellectual disability. “What our paper shows is that this assumption is not true.”


Congressman Glenn Grothman’s Bill to Expand Workplace Choice for Individuals with Disabilities 

Press Release by Kyle Amato, Office of Congressman Glenn Grothman, January 31, 2023

Congressman Glenn Grothman (WI-06) has introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act, a bill that will significantly increase career opportunities for individuals with disabilities. This legislation is endorsed by A-Team USA, a grassroots organization that advocates for individuals with disabilities.

Community Rehabilitation Providers (CRPs) are essential to the well-being of individuals with disabilities because they provide employment and vocational training opportunities for these individuals in their communities. Through CRPs, individuals with disabilities have access to qualified rehabilitation professionals, employment security, and a social network. CRPs provide the individuals who work there more than simply a job and a wage — they provide a sense of purpose and a community that supports them. The rewards of being employed go far beyond just the employee, extending to the families of those with disabilities, the organizations they touch, and the entire surrounding community.

Unfortunately, in 2014, Congress amended the Rehabilitation Act of 1973 via the Workforce Innovation and Opportunity Act (WIOA), which, along with subsequent guidance, has taken away work opportunities for individuals with disabilities.

Previously, CRPs qualified as competitive integrated employment (CIE), a term used to define employment that is integrated with the non-disabled workforce. Now, guidance from the Department of Education has narrowed the definition of CIE, which caused confusion for many state vocational rehabilitation agencies when referring individuals with disabilities to jobs at CRPs. As a result, many vocational rehabilitation agencies have since adopted a blanket denial approach that deprives individuals with disabilities from being referred to valuable employment opportunities at CRPs.

Grothman’s Workplace Choice and Flexibility for Individuals with Disabilities Act will correct the misguided regulatory and sub-regulatory guidance that restricted Congress’s definition of CIE and reduced employment and vocational training opportunities for individuals with disabilities. CIE should include work that involves social and interpersonal interactions with colleagues, vendors, customers, superiors, or other individuals that the employee may encounter during the workday.

Read the full press release here

Lawmakers Revive Effort To Prop Up Disability Services

By Michelle Diament, Disability Scoop, January 27, 2023

As a new Congress gets underway, federal lawmakers are resurrecting efforts to shore up the nation’s beleaguered home and community-based services system.

A bill introduced this week would increase Medicaid funding in order to shrink waiting lists for people with disabilities and address staffing woes.

The move comes after lawmakers failed last year to follow through on a proposal to inject $400 billion in spending on home and community-based services.

The current bill known as the “Better Care Better Jobs Act” would provide states with a permanent 10 percentage point increase in federal Medicaid matching funds for home and community-based services if they meet certain criteria including requiring coverage of personal care services, offering enhanced supports for family caregivers, increasing access to behavioral health care and improving coordination of housing, transportation and employment supports.

In addition, the legislation calls for payment rates for home and community-based services to be regularly updated and stipulates that such adjustments should yield wage increases for direct care workers.


Note: While VOR appreciates increasing funding for people with I/DD and autism, we believe that all people with I/DD and autism who receive Medicaid Long-Term Services and Supports through CMS deserve to benefit from such an increase, not only those who receive services under the HCBS waiver.

We believe that this bill, as written, discriminates against the most vulnerable, who need services not provided under the HCBS waivers.

In First, Pediatricians Get Guidance On Hospitalized Teens With I/DD

By Michelle Diament, Disbility Scoop, January 30, 2023

The nation’s pediatricians are for the first time receiving guidance on how best to care for young people with developmental disabilities when they are hospitalized.

The guidelines are part of a policy statement and clinical report issued this month by the American Academy of Pediatricians on meeting the needs of all those ages 13 to 18 when they are hospitalized.

In particular, the guidance notes that hospitalized patients with developmental disabilities should be given the opportunity to participate in their care.

“It is important to involve individuals with disabilities in their own care to the best extent possible to ensure that providers do not minimize patients’ autonomy because of the presence of a disability and tailor participation to their ability,” reads the clinical report published online in the journal Pediatrics.

The pediatrics group cites evidence from studies on adults suggesting that people with intellectual disabilities are more likely than others hospitalized for the same diagnoses to have longer stays, spend more time in the intensive care unit and have higher rates of surgical complications.

Pediatricians are advised to be mindful that changes in environment can be “very stressful” for people with developmental disabilities. Adolescents in this population may associate hospitals with illness and pain and they may struggle with the noises, influx of people and change in routine that occurs when they are admitted.

Parents and families are “encouraged to be ‘experts on their child,'” according to the guidelines.

“Caregivers can provide insight into the adolescent’s developmental stage and familiarize hospital personnel with the individual’s preferences and routines,” the report states. “It is important for the hospital team to establish a rapport, assess the developmental stage, and explain all aspects of the hospitalization, including treatments and procedures, in a developmentally appropriate way, when possible.”

The guidance also includes information on circumstances where patients with developmental disabilities require sedation and about ways to assess pain in those with communication difficulties.


State News:

New Jersey - Would Cameras Make Group Homes Safer? Debate Rages Over Privacy

By Susan K. Livio, NJ.com/TNS via Disability Scoop, February 1, 2023

Since 2018, Children’s Aid and Family Services has used video cameras to keep a close eye on the residents inside the 18 group homes it runs for people with developmental disabilities in north Jersey.

The Paramus-based nonprofit spent about $10,000 a home to install cameras in doorways, living rooms and kitchens and train employees what to do, or not do, when a resident is experiencing a behavioral crisis, said Melinda Iannarone Geraghty, the agency’s vice president for Disability Support Services. The video recordings are evidence when investigating a resident’s injury and an allegation of abuse.

“You also get to see these touching moments,” between residents and staff, she said, “when they are playing a board game and rubbing their arm and head in a positive and endearing way.”

Steven Cook from the Arc of Mercer said putting cameras in all 19 group homes, as well as in their fleet of cars, has saved money and improved quality.

“If you are trying to understand what happened, cameras used appropriately are a tool to protect (the employee) and consumer and maintain the integrity of your program,” Cook said.

But for all the talk about cameras being an astute investment for some, the group home industry’s lobbyists and some disability activists have united against a bill that would require video surveillance systems in all group homes in New Jersey.

The idea emerged after the 2017 death of 33-year-old Billy Cray, whose body was found in his bedroom closet in his Somers Point group home. An autopsy said he died of natural causes, but his mother, Martha Cray said she has never received satisfactory answers about his supervision and care.

In 2020, Billy’s Law was introduced with the vocal backing of a core group of parents with distressing stories and photographs about their children’s unexplained injuries. An hours-long, emotional hearing on the bill that December also featured sharp opposition from disability advocates and group home operators who argued the law would diminish the right to privacy everyone should expect wherever they live.

“If surveillance becomes a common factor in their lives, privacy is in danger of no longer being considered the inherent human right of this minority population,” according to testimony from the Alliance for Betterment for Citizens with Disabilities.

The bill’s original sponsor, state Assemblywoman Joann Downey, D-Monmouth, lost reelection a year later. State Sen. Ed Durr, R-Gloucester, a freshman lawmaker from the minority party in the Statehouse, reintroduced the bill in March 2022. But Sen. Joseph Vitale, D-Middlesex, chairman of the Senate Health, Human Services and Senior Citizens Committee has not scheduled it for a hearing yet.

Vitale said he has told Durr he is waiting for him to meet with the opposing sides and fashion a compromise. The issues are too complex to hammer out at a marathon hearing.

“I’ll be more than happy to entertain the legislation when the amendments are written,” Vitale told NJ Advance Media. “No one wants a child to be abused in their home. The stories are heartbreaking.”

Durr said he and his staff have not had success in getting opponents to the negotiating table or even getting their calls returned. He said he will keep trying. He said he has asked Vitale to schedule a hearing to allow the negotiations to play out in public, as he has seen some bills handled this way.

“I have my theories on why it is being stalled,” Durr said. “There’s too much politics being played with people’s lives … We have the responsibility to protect people.”

Whatever is delaying the negotiations, Cray and other parents fighting for more transparency and accountability from group home operators say the longer this process takes, the more harm can come to people like their children who are unable to defend themselves.

“This bill was created out of my son’s memory,” said Cray. “They are stomping all over my son’s memory.”

The measure (S1897) calls for video cameras to be installed in living and dining areas in the group home, including doorways and staircases “upon the collective request of the residents and the residents’ authorized representatives.”

It would also allow guardians to install cameras in a resident’s bedroom, but if there is a roommate, that person must give consent. The state Department of Human Services must annually check to see if the cameras are working properly. Residents and their guardians may request to see the video footage, according to the bill.

Aileen Rivera of Wayne, the mother of a son with a disability who has worked alongside Cray to help pass Billy’s Law, said she and other parents have been calling Vitale’s office and using social media to press for action.

“The bill will help everybody,” Rivera said. “It will provide transparency. If the person fell, you can see why they fell. If someone inflicted in injury or if they injured himself, it takes the blame and the doubt away.”

The issue is so complicated that even the New Jersey Council on Developmental Disabilities, an advisory body made up of self-advocates and guardians, has declined to take a position on the bill.

Privacy is the core issue here, Mercedes Witowsky, the council’s executive director and the parent of 33-year-old daughter with disabilities who lives with her. But privacy needs vary based on the individual, she said.

“There were some people who are, for a lack of a better term, higher functioning who can articulate, ‘I don’t want a camera in my home.’ But if the guardian says I do, who will prevail? Who wants to be put in the middle of that?” she said.

“We met with families who did and didn’t want them, providers who wanted them and (those) not at all interested. At the end of all the meetings, we believed there wasn’t a position that could lead us to saying we support or oppose the bill,” Witowsky said.

Valerie Sellers, CEO of the New Jersey Association of Community Providers, Inc., which represents group operators, said the premise surrounding the bill — that group homes are inherently dangerous places — is not true.

“If a family has concerns with the care being provided to its loved one, then other agencies should be consulted as many do have cameras. A family is not restricted to one agency or home,” Sellers said.

“Abuse, neglect and exploitation does occur, however, it has been portrayed as being rampant within the IDD community,” Sellers wrote in an email, referring to the intellectual and developmental disability community. She said data about the number of substantiated reports of abuse and neglect investigated by the Department of Human Services’ Office of Program Integrity and Accountability, “will provide a realistic picture of what is occurring in relation to abuse, neglect and exploitation.”

But when NJ Advance Media requested the number of reported incidents and substantiated cases across all group homes licensed by the state, a Human Services spokesman said the state does not collect aggregate data.

The Office “performs biannual visits to group homes, supervised apartments and community care residences in accordance with New Jersey statutes to assess whether individuals are at risk of, or are being subjected to abuse, neglect or exploitation,” Human Services spokesman Tom Hester said.

These visits were part of the mandate under the Stephen Komninos’ Law, named for a 22-year-old unsupervised man who choked to death while under the supervision of a day program provider. Last year, state surveyors made 5,671 unannounced visits and investigated 61 reports of abuse, neglect or exploitation, Hester said. About half of those cases were substantiated, he said.

Information is available by request through the Open Public Records Act for each of the 124 group home and day program providers, which are listed on the state website.

The law also has weeded out dangerous front-line staff. The state added 203 to the Central Registry of Offenders Against Individuals with Developmental Disabilities, a 49% increase in the number of offenders on the registry since it was created in May 2011, Hester said.

But some families say their loved ones — especially those who cannot communicate — need more intervention.

Johanna Burke, a special needs attorney and the mother of a 19-year-old son who is nonverbal, said if cameras had been installed in Aidan’s group home in Sicklerville, she, group home management and state investigators would know what led up to a housemate assaulting her son on two recent occasions. Aidan is supposed to receive one-on-one supervision, she said.

“Why were no staff there to stop this from happening to my son?” Burke said. “I would have been able to see the reason why the other resident attacked my son. They are both nonverbal and neither of them can communicate the reason why anything happened.”


If you do not have a Disability Scoop account, and would like to read the full article, you may sign in to NJ Advance Media to continue reading.

Michigan - Felon Accused of Posing as Therapist at Autism Treatment Center Ordered to Trial

By FOX 2 Staff, Fox news Detroit, February 2, 2023 

An Oakland County woman with a felony record who is accused of faking her credentials to work as a therapist for children with autism is headed to trial.

Kimberly Casey Coden-Diskin is accused of lying about her education and certifications to get a job at Oxford Recovery Center in Brighton in 2018. Her existing criminal record includes identity theft and larceny from a building.

Authorities said she was never licensed by the State of Michigan. She used professional business cards, verbal statements, and written documents to pose as a licensed medical professional. She also presented university degrees that she is alleged not to have earned and utilized the certification number of another state-certified therapist. That doctor said that Coden-Diskin has used her number three times, and records confirmed this.

A FOX 2 story about Coden-Diskin posing as a Board Certified Behavioral Analyst led Michigan Attorney General Dana Nessel to investigate.

"Regrettably, employers can’t always rely upon what an applicant may represent to them. In many cases, due diligence requires verification of legally necessary qualifications," Nessel said. "When circumstances arise that someone misrepresents themselves as a medical professional, my office stands ready to intervene." 

Coden-Diskin was charged with sixteen counts of unauthorized practice of a health profession and two counts of identity theft. She was also charged with one count of witness intimidation for her alleged communications with a witness in the original case.

What happened:

Kim Harden sent her 10-year-old daughter, Kennedy, to the Oxford Recovery Center in Brighton. She had been making great progress through a specialized therapy but she suddenly began to regress. Then Kim learned she wasn't the only parent of a child with this issue. And then it got worse.

Leaving your child in the care of someone else is hard enough. Now imagine your child is non-verbal and needs a specialized therapy program.

"Not being able to communicate with me, it scared me to send her away somewhere and not know what her day is like - and what was going on," Kim said.

When Kennedy came home upset with unexplained injuries, Kim's fears became a reality.

The woman who ran the program, Casey Diskin, was a convicted felon and a fraud who had stolen medical credentials of another certified behavioral analyst for years.

In the beginning, Kennedy's therapy was done in the comfort of her own home using Applied Behavioral Analysis (ABA) therapy. A Board Certified Behavioral Analyst (BCBA) assesses children with severe autism and uses science in an individualized way to improve behavior, communication, learning, and social skills.

And it was working.

"It was going well. She was able to start reciting her name, her address, her age, family members, so we thought this was perfect," Kim said.

It was going so well, the Harden family reached out to Oxford Recovery Center in Brighton, which offers specialized testing and therapy that could further her progress.

That was a decision she's come to regret.

"I get several calls from Casey Diskin who introduces herself as the director of the arts program certified as a BCBA, who studied over in Australia," Kim said.

Diskin gave them a business card that said she was the director of ABA and a BCBA. It was listed on her bio with countless health facilities that focus on autism. She was even featured in a video on the center's website with the founder and CEO, Tami Patterson, where she described her techniques.

But Kim learned Diskin is not a Board Certified Behavioral Analyst. She says Diskin isn't qualified at all. In fact, she said she found out she was using someone else's credentials - a BCBA named Dr. Kimberly Peck.


Please share this offer with your loved one's

Direct Support Professionals!



Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

[email protected]

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

VOR Bill Watch:

Currently, we have not seen the formal text on bills in recently entered in the 118th Congress.

(That should change very soon!)

Please watch this space for information as bills affecting people with I/DD and autism are introduced.


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



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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