November 1, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for 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 and YOU:
It's Fundraising Season!

Fall is always our best fundraising season. This year, we have set some pretty high goals. And yes, that means that you will be seeing an uptick in our pleas for donations over the next two months.

* Sigh *

To keep things interesting, we have asked some of our members to introduce themselves and their loved ones, and to see how your generous donations have been appreciated over the years.
Be a Part of the Team By Rebecca Japko

As you join our team at VOR, you will be helping to touch the lives of thousands, whether it is families who are facing an imminent closure, parents and guardians who needs direction in understanding disability policy, or people just looking for ways improve their loved one’s quality of life. There are so many families like mine, left in crisis after the death of a caregiver. When families are in crisis with no experience in navigating the system, they have nowhere to turn. In our case and for many families across the county, the family is instructed to go seek assistance in the Emergency Room.  

My sister Linda's life was changed dramatically by the many events that followed. This experience has changed our whole family. And now, after the crisis has abated, I have learned about the work of VOR and support its mission. VOR exists to serve you and your family, to provide hope and understanding. VOR's efforts are to assist and support families to protect the rights of their loved one to live in the community of their choosing that meets their needs.

Linda and Becky in Linda's room at Brenham State Supported Living Center, Brenham, TX
Becky Japko is the Chair of VOR's Communications Committee and
a member of our Board of Directors.

She also serves as Vice President of the
Family Association of the Brenham State Supported Living Center.
National News:
Acetaminophen Use During Pregnancy Linked To Higher Rate Of Autism, ADHD
By Rita Giordano, The Philadelphia Inquirer, October 31, 2019
Exposure to acetaminophen in the womb may have some connection with a child’s risk for attention deficit/hyperactivity disorder (ADHD) and autism spectrum disorder, suggests a new study published Wednesday in JAMA-Psychiatry.

But experts caution that it is too soon to tell pregnant women not to use the over-the-counter painkiller, better known as Tylenol.

The study, conducted by researchers with the Johns Hopkins University Bloomberg School of Public Health and funded by the National Institutes of Health, does not prove a causal relationship between the common over-the-counter pain medication and the disorders.

The authors and other experts said more research is warranted to determine if there is a connection between the medicine and the conditions.

“In the past, acetaminophen use during pregnancy was considered to be safe,” said study author
Xiaobin Wang, a Johns Hopkins pediatrics professor. “Our findings along with previousstudies raise the concern about potential risk of acetaminophen use during pregnancy. This information helps the women and their providers to weigh the risk and benefit of acetaminophen use during pregnancy and make informed decisions.”

Unlike much of past research that relied on women self-reporting acetaminophen use during pregnancy, the new findings are based on acetaminophen levels detected in actual umbilical cord blood samples of 996 births. Researchers used data from the Boston Birth Cohort, a long-term study of factors influencing pregnancy and child development.

Most Older People With Down Syndrome Have Dementia, Study Finds
By Michelle Diament, disability Scoop, October 29, 2019
It’s long been known that people with Down syndrome are more susceptible to Alzheimer’s disease, but now a new study is quantifying just how common memory issues are in this population.

By age 55, three out of every five individuals with Down syndrome will be diagnosed with Alzheimer’s disease or another neurodegenerative condition, according to research published online Monday in the journal JAMA Neurology.

Meanwhile, the study found that the odds of dementia are 40 percent for those ages 40 to 54.
The findings are based on an analysis of Medicaid claims data from more than 2,900 adults with Down syndrome living in Wisconsin between 2008 and 2018.

State News:
Note: Several of the articles in this week's newsletter concern cuts to Nursing Homes, Group Homes, and Skilled Nursing Facilities. We feel these cuts are indicative of a larger trend that is cutting services and leading to poorer quality care throughout the system, and want our readers to see this as part of the larger picture.
Maine - Biddeford Man’s Tragic Death Reveals Gaps in Maine’s Safety Net
By Eric Russell, Portland Press-Herald, October 27, 2019
Experts in caring for intellectually disabled adults in Maine say there’s ample blame to go around in the case of a 62-year-old Biddeford man who died after he failed to receive insulin required to treat his diabetes.

After Norman Fisher’s death in late August, the Department of Health and Human Services took the rare step of canceling its contracts with the private company that operated the transitional home in Portland where he died. The provider, Residential and Community Support Services, has appealed that decision and said it’s being scapegoated.

Other treatment providers said even though DHHS likely did the right thing in taking decisive action against RCSS, the state still bears some responsibility, as Fisher was under the guardianship of a DHHS employee. They also point to the state’s record of lapses in meeting the needs of adults with intellectual disabilities, as well as a history of failing to thoroughly investigate deaths and serious injuries among this population.

Richard Estabrook, who until 2012 was chief of the now-defunct Office of Advocacy within DHHS, used to advocate for people like Fisher. He said he believes the state, as guardian, did have a responsibility to ensure that Fisher was placed in a
safe, secure environment. But he also said staff at RCSS had a duty to provide him with emergency medical care.

Ray Nagel, executive director of the Brunswick-based provider Independence Association, said Fisher’s death was a failure of the system.

“The state is just as guilty as the provider, in part because it has failed to recognize the needs of those with significant behavioral challenges,” Nagel said, adding that he thinks the state did the right thing in cutting ties with RCSS and said the current administration seems to be trying to fix things. “DHHS can’t be blamed for the sins of the people before them. This is a long-neglected system.”

Fisher is the latest tragic reminder that even though Maine has spent three decades building a community-based system for caring for intellectually and developmentally disabled adults, significant gaps remain.

Florida - First He Was Shot At By Police. Now He Is Being Evicted From His Group Home
By Carol Marbin Miller, Daniel Chang and Elizabeth Koh, Miami Herald, October 24, 2019
Arnaldo Rios-Soto has been involuntarily committed, handcuffed, forcibly restrained, tranquilized and shot at by police.Now, he’s about to be homeless.

Rios-Soto, 29, has the intellect of a child, but the strength and size of a grown man. He became the troubled face of Florida’s disability program in 2016 when a North Miami police officer, mistaking Rios-Soto’s toy truck for a handgun, shot at him. The officer’s bullet instead struck Rios-Soto’s caregiver, who was sprawled in the street with his hands in the air, shouting, “Why did you shoot me?”

The photos and video that followed — caregiver Charles Kinsey splayed out on the asphalt with his arms nearly perpendicular to his legs, Rios-Soto grasping his favorite toy — become the iconic image of a story that led the national news.

In the three years since, Rios-Soto has ping-ponged between group homes and psychiatric hospitals in three Florida counties, eventually landing at the Beechdale Home in Orlando. The home’s operator officially informed him last week
through a court notice that he’s being evicted, after state disability administrators announced they were cutting Rios-Soto’s care plan.

This year, Florida’s Agency for Persons with Disabilities reduced funding for Rios-Soto to a maximum of $440,000 per year, a 14 percent cut, according to court documents filed by the state — figures that Craig Cook, who operates the home, disputes, saying the trims actually were far deeper. The cuts diminished Rios-Soto’s care plan to three workers to supervise him during waking hours, two to watch him overnight, and one to monitor him during certain daytime training activities.

“It’s all about the money,” said Gladys Soto, Rios-Soto’s mother. “They don’t see that he’s a boy, that he’s a human being, that although he has a man’s body he has a 4-year-old’s mentality, that he has been through so much trauma and so many problems and now that he’s improving they want to move him out and put him in a new home, to start from zero.”

California - Frail Nursing Home Patients Told to Relocate as their Medi-Cal Plans Cut Off Payment
By Jocelyn Wiener, California Healthline / Sacramento Bee, October 28, 2019
Some of California’s most vulnerable nursing home residents, many of whom have nowhere else to go, are receiving letters from their health care plans saying they are no longer eligible for long-term care.

In one notable example, three dozen nursing home residents in San Luis Obispo County were informed on the same day that their Medi-Cal managed care plan was cutting off payment for nursing home care, said Karen Jones, the county’s long-term care ombudsman.

The residents included a 68-year-old amputee with diabetes, memory loss and kidney disease who required dialysis three times a week, and an 82-year-old man with congestive heart failure and diabetes who wasn’t strong enough to transfer himself from his bed to a wheelchair, Jones said.

“It just felt like we were tossing our seniors and disabled adults,” Jones said of the letters, which arrived in September 2018 and sparked a year-long dispute. “‘Sorry, we’re going to save some money here.’ That’s exactly what it felt like.”

The California Department of Health Care Services, which administers Medi-Cal, the state’s Medicaid program for low-income people, said the terminations by the managed care plan, CenCal
Health, were isolated, a perspective some long-term care advocates share. CenCal said it was just following protocol, examining the books to make sure members still met the qualifications for long-term care under Medi-Cal

Mandatory managed care on horizon

But California Healthline interviewed multiple long-term care advocates and legal aid attorneys on the Central Coast and other parts of the state who said they have witnessed an increase in coverage denials for nursing home residents covered by Medi-Cal managed care plans. They worry such denials may soon become more commonplace: Medi-Cal nursing home care in all 58 counties will be placed under managed care beginning in January 2021, the state announced recently — up from 29 counties currently.

Under managed care, the state pays plans a monthly rate for each recipient to provide all of the medically necessary services that person needs. By comparison, under traditional “fee-for-service” Medi-Cal, the state compensates medical providers directly for each service they render.

VOR's Fall Membership & Fundraising Campaign

VOR relies on donations from families like yours
to help us to give a voice to families like yours.

It's just that simple.
Florida - DeSantis, Lawmakers Ponder Disabilities Program
By Christine Sexton, The News Service of Florida / CBS-12 News, October 29, 2019
Gov. Ron DeSantis said Tuesday he’s “very open” about steps the state should take to rein in costs of caring for people with developmental and intellectual disabilities.

The Florida Agency for Persons with Disabilities and the Agency for Health Care Administration last month suggested a number of options for the state to pursue to bring greater budget predictability in the so-called iBudget program, which is part of Medicaid.

Enrolling people in Medicaid managed-care programs, though, was not one of the recommendations by the agencies in the legislatively mandated review.

But at an annual Associated Press pre-session event Tuesday at the Capitol, DeSantis left the door open to the possibility that managed care could be the answer
“I think it’s been a tough issue fiscally, but I think it’s an issue where some of these folks are in pretty bad shape. And we have a responsibility to do what we can,” DeSantis said when asked why the agencies didn’t recommend rolling the iBudget program into a state requirement that most Medicaid beneficiaries enroll in managed care.“I’m very open about the best way forward. I’m not saying one or the other, but the way it’s gone, it’s not necessarily going in a good direction.”

DeSantis’ comments came the same day that the Florida Developmental Disabilities Council launched a statewide media campaign to “save” the iBudget. The iBudget program provides services to about 35,000 people with developmental and intellectual disabilities, while another 21,000 are on a waiting list.

New York State Sued Twice Over Medicaid Cuts
By Marina Villaneuve, The Bradenton Herald, October 26, 2019
Two lawsuits filed this year against Gov. Andrew Cuomo's administration argue state health officials facing a $1.7 billion shortfall bypassed the public and the legislature while in moving to slash hundreds of millions of Medicaid dollars for elderly and disabled people.

Groups serving over 75,000 senior and disabled New Yorkers are cautiously celebrating a judge's Oct. 11 reversal of what advocates say would amount to a $150 million cut to Medicaid. And nursing home advocacy groups on Thursday lodged a lawsuit saying Cuomo's administration is trying to address the shortfall by jeopardizing $352 million in state and federal funding.

At the heart of both lawsuits is the Democratic administration's strong push to curb ballooning Medicaid spending. About $3.5 billion in Medicaid money this year is going to programs serving people who hire their own personal aides. Another $5 billion is going to nursing homes, which last fall received the first cost-of-living increase in over a decade.
Twelve nursing homes have closed over the past five years, and two dozen Democratic lawmakers have called nursing home cuts "unrealistic and dangerous." Leaders of groups serving elderly and disabled New Yorkers who hire their own personal care aides are worried the state will still push ahead with cuts amid budgetary scrutiny.

Long-term care providers facing a workforce shortage said it has been clear for two decades that New York's population is aging and more people are receiving services. They questioned how much immediate savings budget officials could find and said individuals living with disabilities and in nursing homes shouldn't suffer because of larger national trends.

Texas - Local Dental School Taking Steps to Serve People with Special Needs
By Tiffany Huertas, KSAT News-9, October 28, 2019
Dental school students will soon be required to learn how to care for patients with disabilities under new guidelines. 

Beginning in 2020, all U.S. dental schools must change their programs to be inclusive of patients with intellectual and developmental disabilities. 

  • The Commission on Dental Accreditation approved the following new standards, which affect predoctoral dental, orthodontics, dental hygiene and dental assistant programs:

  • For predoctoral programs and orthodontics programs, dental students must be trained to assess and manage the treatment of patients with “special needs.”
  • For dental hygiene programs, students must be competent in providing care to “special needs” patient populations.

For dental assistant programs, students must familiarize themselves with patients with “special needs,” including patients whose medical, physical, psychological, or social conditions make it necessary to modify regular dental routines.
UT Health San Antonio’s School of Dentistry has already been addressing the needs of patients with special needs. 

Apple’s New Emoji Include Disability-Related Symbols. I’m Not Thrilled.
By Amy Silverman, The Washington Post, October 31, 2019
The other day, I texted my daughter and asked her to describe herself using emoji.

Sophie responded with blue letters spelling “Zzz” — the emoji for sleep. Appropriate, I thought, since she’d just stayed up too late on a school night.
Any more? I asked.

The pretzel emoji. Sleep and carbs — makes sense for a 16-year-old girl. Then a bed (she must have really been tired) and a smiley face with hearts for eyes. Then a smiley face with sunglasses and another with stars in its eyes, followed a few minutes later by a sad face.

Loving, cool, star-struck, a little melancholy.

Check, check, check, check. Sounds like my kid. But there was something missing.

“Do you wish there was an emoji for Down syndrome?” I texted.
“Yes,” she texted back.
“What would a Down syndrome emoji look like?”

“I don't know.”

Me, either, I thought, putting down my phone.

On Monday, as part of its IOS 13.2 release, Apple released 398 new emoji, including a sloth, a flamingo, buttered waffles — and several disability-related symbols, including images of people with different skin tones in wheelchairs, a prosthetic leg, a blind person with a probing cane, a service dog and a hearing aid.

Disability advocates are cheering. I’m not thrilled.

As both the mother of a child with a disability and a journalist who covers disability-related issues, I have trained myself to look past labels to consider individuals. Just as the blue-and-white international “handicapped” symbol falls far short of including all people with disabilities, so does this handful of emoji.

Furthermore, I spent a recent summer revising the style guide for the National Center on Disability and Journalism, housed at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University. I know how hateful certain words can be — and how tough it can be to find the right ones.

Emoji are such a quick read. How easy it will be to use a wheelchair emoji to tell someone, “You’re so lame!” or ask with a hearing aid image, “Are you deaf?!”

If you are wondering if anyone would really use disability emoji to make slurs, search #retarded on Twitter. It’s not pretty out there.
And then there’s Sophie. Intellectual disability is tough to illustrate. Some genetic conditions, such as Down syndrome, do have shared physical tendencies, so I supposed it could be possible to make an emoji of a person with Down syndrome. But would you want to?

When Sophie was a little girl, I thought there should be an American Girl doll with Down syndrome. Now that she’s almost grown up, I’m not so sure anymore. Yes, Down syndrome is a huge part of my daughter’s identity. As my husband, Ray, likes to say, Sophie is our own little science experiment — every single cell in her body is different, thanks to that extra 21st chromosome, some more than others. But it’s not the only thing that makes her Sophie.

I’m often surprised when I meet another person with Down syndrome by how similar Sophie is to them in appearance and mannerisms, but I also note how much she looks and acts like Ray, her sister and me.


The day after Sophie and I texted, I asked her on the drive to school, “Have you come up with an idea for an emoji that represents Down syndrome?”


“How about one to represent you?”

She paused for a minute to think.

“Piglet!” she said.

The A.A. Milne character is Sophie’s favorite. She looks for him every time we visit Disneyland, and has always slept with a stuffed Piglet a friend gave us when Sophie was born.

Piglet is the smallest character in the Hundred Acre Woods (except for Kanga’s baby, Roo, who is not full-grown and therefore doesn’t count) and he’s considered to have a big heart. Because of his short stature, he has to work harder to get ahead.

“That sounds about right,” I told Sophie. “I like it.”
Sophie smiled and turned back to her phone, content.

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]
VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


H.R. 2417 - 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).

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