February 28, 2020
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's 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR's Annual Meeting and Legislative Initiative will be held on June 6 - 10th this year.

Details will be forthcoming.

If you are planning on creating a crowdfunding campaign, now is the time to begin!

Our room reservation block at the Hyatt won't open for several weeks, but it's not too early to start planning your stay and making reservations for air or train travel.
VOR and YOU:
~ March is Developmental Disabilities Awareness Month ~

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.
National News :
Study Aims To Identify Risk Of Autism Through Newborn Screening
By Gary Robbins, The San Diego Union-Tribune via Disability Scoop, February 25, 2020
The University of California, San Diego is seeking 400 families to participate in a study that will test whether it is possible to predict if a newborn is at risk for developing autism before symptoms appear, allowing for early treatment and potentially preventing a disorder that doesn’t have a cure.

The study is open to California families who are willing to give UCSD permission to analyze dried and stored spots of blood from samples that were collected from their child shortly after birth.

California collects a few drops of blood from all newborns, stores them on filter paper, then screens them for scores of genetic and congenital disorders.

Scientists say that the blood samples might contain “tell-tale” molecules and chemicals that indicate that the child is at risk for developing autism spectrum disorder, sometimes called ASD for short.
“We want to apply a new test that looks at over 1,000 natural chemicals and some man-made chemicals that are present in all of us to see if we can accurately predict when children might be at risk for developing autism,” said Dr. Robert Naviaux, the principal investigator of the UC San Diego Newborn Screening-Autism Risk Study.

The study will pay special attention to how the chemicals and compounds found in the blood interact with genes.

“We see genes and the environment as being absolutely required together to lead to autism spectrum disorder,” Naviaux said. “For that reason, we call ASD an eco-genetic disease. Your ecology and your genes have to interact.”

Related Story: Predicting Autism Risk May Begin With a Drop of Blood
By Scott LaFee, UCSD Health News, February 13, 2020

Excerpted from the above article:

Naviaux said the new study is important for two reasons: the dramatic rise in diagnosed cases of ASD and increasing evidence that early intervention in children at risk of ASD can significantly improve outcomes.

The prevalence of ASD has risen from 20 in 100,000 births in the 1970s to 1,700 in 100,000 in 2014, according to the U.S. Centers for Disease Control and Prevention — an 84-times increase. Approximately one in 59 children is diagnosed with ASD. Statistics from the U.S. Department of Education and other government agencies indicate autism diagnoses are increasing at the rate of 10 to 17 percent per year.

Changes in diagnostic criteria and reporting practices account for 60 percent of the rise, at most, according to previously published research. “This means that even by the most conservative estimates, the prevalence of ASD has increased at least 34 times,” said Naviaux. The overarching question for Naviaux and others is why? Is it genetics? The environment?

“Our genes have not changed significantly in the past 50 years,” said Naviaux. Single gene mutations play a causal role in approximately 10 percent of ASD cases. The vast majority of ASD cases are idiopathic or of unknown cause, most likely the result of a combination of genes, environmental factors or something yet to be identified.

Validating Toolbox to Evaluate Cognitive Processing in People with Intellectual Disability
Health study a 'big first step' in standardizing assessments
EurekaAlert, February 24, 2020

Researchers at the UC Davis MIND Institute have updated and validated a series of tests delivered on an iPad to accurately assess cognitive processing in people with intellectual disability. The validation opens new opportunities for more rigorous and sensitive studies in this population, historically difficult to evaluate.

The widely used NIH Toolbox was designed for use in the general population. It had not been applied as a rule to people with intellectual disability. Intellectual disability is characterized by significant limitations in both cognitive functioning and in adaptive behavior such as everyday social and practical skills. The most common genetic causes of intellectual disability are Down syndrome and fragile X syndrome.

The article "Validation of the NIH Toolbox Cognitive Battery in Intellectual Disability," published February 24 in Neurology©, the medical journal of the American Academy of Neurology, determined that the tests accurately measure cognitive skills in individuals with a mental age of 5 or above. Additional modifications to the test are needed before it can be shown to be equally good at measuring skills in people with lower functioning.

"Our study assessed how the battery is performing in people with intellectual disability. We made some adaptations to the assessment so that it works well in this population," said Rebecca Shields, the first author on the study and a UC Davis graduate student in human development working in the laboratory of David Hessl. "This is a big first step showing how it works in these individuals. Applying it consistently across this unique population means other researchers and clinicians can use it too."

Senate Passes Bill Expanding Access To Respite Care
By Shaun Heasley, Disability Scoop, February 26, 2020
Lawmakers are pressing ahead with a plan to increase federal funding to support respite care for families of those with disabilities and other special needs.

The U.S. Senate unanimously approved a bill this week known as the Lifespan Respite Care Reauthorization Act of 2019, or S.995, which would authorize $50 million over the next five years for the Lifespan Respite Care Program, a system of community-based respite care services across the country.

The bipartisan measure would renew an existing law that dates back to 2006 and boost spending on the effort to $10 million annually. Traditionally, the program has received just $2.5 million each year.
To date, the federal government has provided grants to 37 states and Washington, D.C. through the respite care program to streamline the delivery of services, coordinate resources and offer training to respite providers and family caregivers.

Backers of the bill note that there are an estimated 45 million family caregivers in the U.S. providing some $470 billion annually in uncompensated care. Most have not used any respite care services at all.

State News:
Oregon - Editorial: Remember, Some of the Homeless are the Most Vulnerable Among Us
By Deb Patterson, Statesman Journal, February 21, 2020

Recently, I attended three “State of the Cities” addresses given by Mayor Bennett of Salem, Mayor McCardle of Independence and Mayor Koontz of Monmouth. 

All three addresses proved informative, highlighting exciting developments in the region, and outlining some common challenges. One comment made by Mayor McCardle stood out. He said no one should be left outside to freeze in America. I couldn’t agree more.

The number of people living without housing in our region is of growing concern. Many people mention the shortage of affordable housing, the lack of mental health and addiction providers, and the dearth of services for youth and families in crisis. Seniors, too, are joining the ranks of the homeless at an alarming rate.

One group among the homeless, however, is being overlooked, I believe. People with intellectual and developmental disabilities (IDD) are overrepresented among the homeless, and few people are aware.

According to a 2015 report in the Texas Observer, about 9% of the homeless have IDD, about three times the rate of folks with IDD in the general population. As the mother of a young adult daughter with IDD, I find this a terribly troubling statistic.

Who are the people experiencing IDD? In Oregon, DHS stipulates that a diagnosis of IDD involves “significantly sub-average intellectual functioning with an intelligence quotient (IQ) of 70 and under as measured by a qualified professional, along with a lack of daily living skills (adaptive behavior) such as, but not limited to, communicating, grooming, dressing, safety and social skills, that show up prior to 18 years of age.” 

Folks with IDD are vulnerable. NPR ran a 2018 series showing that “people with intellectual disabilities – women and men – are the victims of sexual assaults at rates more than seven times those for people without disabilities.” 

They are also far more likely to experience physical, emotional, and financial abuse, which can lead to landing them on the streets – or in prison. According to a recent report published by The Arc, which serves people with IDD, “while those with intellectual disabilities comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population.”

New Jersey - Minimum Wage Increase Has Created Budget Challenge (DSPs)
Press Release from NJ State Senator Declan O'Scanlon, Insider NJ, February 24, 2020
Direct Support Professionals Asking for $16.5 Million to Cover Minimum Wage Increase
When the Democrats in Trenton passed legislation in 2019 to increase the state minimum wage incrementally until it reaches $15 per hour in 2024, Senator Declan O’Scanlon and Republicans in both houses warned of the consequences for New Jersey taxpayers, those providing essential services and those that depend on those services.

Two months after the implementation of the second annual increase raising the state hourly minimum from $10 to $11, O’Scanlon’s cautions are being proven.

“There isn’t any level of government or a single taxpayer that will be spared from paying in one way or another for higher wage costs fueled by the Democrats’ minimum wage increase,” said O’Scanlon (R-13). “I raised this issue early on in the debate and it was ignored. The Governor stunningly ignored the increases in costs inflicted on government-dependent entities, on which our most vulnerable depend, in last year’s budget.

Now we see the next dead canary in the coal mine with this notice from DSP services.

“If the budget presented tomorrow doesn’t preemptively include additional funds, to pay for
the impact of the policy the Governor himself advocated for, it will be a shocking display of short-sightedness, and a devastating blow to these dedicated third party providers of basic, life altering/saving services to our most vulnerable. This has to be a priority and the funds must be found within the budget. The vital need to provide these funds can’t simply be used to justify a tax increase. We already have gross unfunded debt obligations with the public employee pension and health benefits systems,” O’Scanlon added.

Recently, it was revealed that pay increases for non-skilled private sector jobs has created a crisis among Direct Support Professionals (DSP) who provide crucial assistance to people with intellectual and developmental disabilities.

As salaries for retail employees have eclipsed the $12 per hour rate for DSP workers, the turnover rate has reached 40 percent and almost one third of the job slots are unfilled.

New York - Funds for New Yorkers with Developmental Disabilities May Be Cut: Advocates
By Denis Slattery, New York Daily News, February 24, 2020
Service providers working with New York’s developmentally disabled population say something is amiss when it comes to the state’s math.A group of the state’s largest nonprofit associations representing service providers supporting New Yorkers with intellectual and developmental disabilities claim the state is not only ignoring their pleas for more funding, but pulling already promised money amid an ongoing Medicaid budget battle.

While the Cuomo administration is seeking ways to close a projected $6 billion budget gap without cutting services, the New York Disability Advocates claim they were blindsided by a recently unveiled 2% cut to rates across the board for service providers.

“What this means is that one more time agencies that are already struggling will be struggling much more in order to keep operating,” said Susan Constantino, a member of the New York Disability Advocates coalition and the president and CEO of the Cerebral Palsy Associations of New York State.

When the groups, which provide care to New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, and autism spectrum disorders, banded together earlier this year, they began asking for an annual 3% increase in funding for the next five years to correct what they say is a severe funding shortage.

The Cuomo administration countered the request by saying the state has made “substantial investments” in the direct care workforce and funded $355 million for salary increases since 2015, including a 2% increase in reimbursements that cover salaries for certain workers slated for January and another 2% in April.

But at a budget hearing earlier this month, the director of the Office for People With Developmental Disabilities hinted at a 2% across-the-board cut that Constantino and others say cancels out about two-thirds of the salary increases the state said it would cover and force them to cut elsewhere.

New York - Man with Cerebral Palsy Fighting Against Medicaid Cuts
By Atyia Collins, Rochester First, February 26, 2020

Medicaid could be taking a huge blow throughout New York, both by state and federal funding cuts. First, state cuts were announced within Governor Cuomo’s State budget and now, an application for an $8 billion grant going towards health care providers in the state has also been denied.

This loss of funding across the board could put many programs at risk like those the Slomba family are part of.

“All I’m trying to do is keep my family together I don’t want my son to go to a nursing home,” said Nancy Slomba, whose family participate in the Medicaid funded Consumer Directed Personal Assistance Program.

The Slomba family is fighting against the cuts to Medicaid programs that were announced in Governor Cuomo’s budget.

They participate in a Medicaid program that provides money for the care of her son Joseph Slomba, who has cerebella palsy.

“The CD-PAP program it means a lot to me because without the CD-PAP program it’s like telling someone okay, you don’t need your parents anymore, you can walk out on your own take care of yourself and to be honest with you, I need my parent’s every day,” said Joseph Slomba.

For the Slomba family, they are still pushing for the state to find a better solution to the Medicaid challenges.

“When Medicaid makes a cut like that they didn’t present an alternative program. They didn’t consider the far-reaching ramifications of something like that of taking away somebody’s daily care,” said Nancy Slomba.

New York - State Policy Leads to Closure of Sheltered Workshop in Auburn
By David Wilcox, AuburnPub, February 27, 2020
An Auburn workplace for people with disabilities is closed after almost 50 years due to a divisive change in state policy. 

The workplace was known as a sheltered workshop, where people with disabilities could work for pay in a supervised environment. Located at 180 North St., the Auburn workshop was operated by the Arc of Seneca Cayuga. It opened in 1972, and at its peak, employed up to 200 people. They performed light tasks like packaging and assembling parts for clients that included Welch Allyn, Tessy Plastics and Lowe's, said Allen Connely, CEO of Mozaic, the new organization formed when the Arc of Seneca Cayuga merged with the Arc of Yates at the beginning of this year.

In 2013, however, the state Office for People with Developmental Disabilities began to transition away from sheltered workshops. This followed the U.S. Supreme Court's 1999 Olmstead vs. L.C. ruling, which established that people with disabilities should be integrated into the community whenever appropriate. Sheltered workshops, then, were criticized as segregationist.

[T]he Office for People with Developmental Disabilities ended new admissions to sheltered workshops on July 1, 2013, and ended funding to them after 2020.

Such workshops were especially suited to people with severe disabilities, In integrated work environments, where everyone is expected to be equally productive, their disabilities can lead to resentment from co-workers. But in sheltered
workshops, they could work at their own pace, knowing clinical support is close by.

That's why Lorna Glendinning, of Throop, said the closure of Mozaic's workshop was "heartbreaking."
Glendinning's son, Scott Stack, 49, has Down syndrome and requires oxygen, she said. So integrated work environments aren't ideal for him.

Even working at Finger Lakes Textiles would be too disruptive. But at Mozaic's workshop, he could spend time with friends somewhere his needs were met, she said, and collect a paycheck every two weeks.

Scott is now set to start working at a coffee shop at Mozaic's facility on Clark Street Road in Aurelius, Glendinning said, but she has yet to be told whether it'll be a paid or volunteer position.

"The government feels these people should be out working. Someone said (the workshop) was like a sweat shop," she said. "But most of their jobs were sit-down, putting things together."

Glendinning said she wrote several politicians about the workshop's closure, hoping her son could keep working there, but to no avail.
"I spent nights crying, thinking about it," she said. "It's very upsetting."

West Virginia - Committee OKs Amended Budget Bill
By Steve Allen Adams, The Inter-Mountain. February 27, 2020

Gov. Jim Justice might not get all the items on his budget wish list under a version of the budget bill moved by the Senate Finance Committee Wednesday night after both the state Senate and House of Delegates wrapped up Crossover Day.

During his State of the State address Jan. 8, Justice presented the Legislature with a general revenue budget proposal for fiscal year 2021 (starting July 1) of $4.585 billion, a 2.31 percent decrease from the fiscal year 2020 budget that went into effect in July. The Senate Finance Committee’s budget proposal would decrease the Governor’s budget proposal to $4.558 billion – a $27 million decrease from Justice’s proposal.

The Senate Finance budget includes $49 million in cuts. Some of the cuts include: $10.5 million in cuts to the Jobs and Hope substance abuse treatment and job training program; $3 million in cuts to the WV Invests Grant Program, a program created by Senate Bill 1 last year to provide last-dollar-in grants to West Virginians wanting to attend community and technical colleges; a $4 million decrease in tourism funding, and $10 million from the intellectual and development disability waiver program.

Justice had proposed increasing funding by $19.7 million for the I/DD waiver program to end the wait list, which sits at more than 1,000 families. With several I/DD families sitting in the audience, committee members asked why the Senate Finance budget proposal was going back on a promise by the Governor to end the wait list.

Senate Finance Chairman Craig Blair, R-Berkeley said that while ending the wait list was a good idea, surrounding states also have I/DD waiver wait lists. Blair said it would be better to only increase the funding by $10 million instead of $19.7 million and monitor the wait list.

“It was a noble idea what the Governor was trying to do, but the fact of the matter is we could do $20 million and it would be base building,” Blair said. “That’s $20 million every year and it eliminates that wait list, but that wait list would re-appear again immediately. If we do $10 million this year on it, we can actually monitor throughout the year and see if the wait list grows even more.”

West Virginia - Justice Wants Waiver Funding Restored
By Steve Allen Adams, The Inter-Mountain. February 27, 2020

A day after the Senate Finance Committee passed its version of the budget with reduced funding for intellectual and developmental disability waivers,

Gov. Jim Justice said he wants that funding restored.Justice released a statement Thursday saying he would refuse to accept any proposed budget from the Legislature that didn’t include the $19.7 million increase to the I/DD waiver program to end the waitlist.

“I will not support a budget that does not include a full elimination of the I/DD waiver waitlist,” Justice said. “When it comes to the health and well-being of some of our most vulnerable men, women and children in West Virginia, I’m not interested in taking half-measures.”

The I/DD waiver program through the Department of Health and Human Resources allows individuals with intellectual or development disabilities to remain with family members instead of being placed in institutions and provides funding to assist with their care.

According to Justice, 1,060 families remain on the waitlist, including 600 children. The waiver program also costs 46 percent less than putting these individuals in state institutions.

“Many of these people have been waiting for more than four years now, which is far too long,” Justice said. “My proposed budget includes the funding to accomplish this goal.”

In his Jan. 8 State of the State address, Justice announced a $19.7 million increase in the I/DD waiver funding to eliminate the wait list. The additional money came from a Medicaid surplus due to a decrease in enrollment and an increase in the federal Medicaid match rate.

On Wednesday, the Senate Finance Committee amended Senate Bill 150, the governor’s fiscal 2021 budget. The Senate Finance Committee’s budget proposal would decrease the governor’s budget proposal from $4.585 billion to $4.558 billion, a $27 million decrease.

Iowa - State Documents: Top DHS Manager Knew of Arousal Study Plans
By David Pitt, Associated Press via CT Post, February 24. 2020
A recently retired official overseeing Iowa’s mental health and disability services programs knew almost two years ago of plans to perform sexual experiments at a state-run institution, document released Monday indicate.

The Iowa Department of Human Services released letters, emails, a power point presentation and other documents that indicate top management of the agency knew of serious management problems at the Glenwood Resource Center. The documents show increasing concerns by nurses, doctors and other staff members about sexual arousal experiments on patients.

An email written to Rick Shults on May 21, 2018, shows he approved of a research plan drawn up by Jerry Rea, the former superintendent at Glenwood who was fired in December.

A DHS employee in charge of purchases wrote the email to Shults asking to buy computer software for Rea to conduct sexual arousal studies on patients at Glenwood, a facility 115 miles (185 kilometers) southwest of Des Moines that cares for about 250 individuals with intellectual disabilities.
It detailed the research Rea was engaged in that “has implications for treatment of sexual preoccupation issues” for patients at Glenwood and a separate state facility that holds sexual offenders.
“Nice write up. Yes, I approve. Please keep the justification and my approval should questions arise later,” Shults responded. Shults as director of the DHS Division of Mental Health and Disability Service, had broad oversight of the DHS mental health programs including Glenwood and other facilities. He retired last month.

The pitch went on to discuss use of a penile device used for measuring arousal and said if the research was successful it could be used at other locations including a state mental health facility at Cherokee and a civil commitment location for sex offenders in Kansas.

The release of the documents comes after two doctors and four other former Glenwood employees filed a federal civil rights lawsuit earlier this month against DHS and several top officials, alleging a conspiracy to silence complaints about the sexual arousal research.

Pennsylvania - Opinion: Group Homes for Pennsylvania’s Disabled People Create Conditions that Allow Abuse
By Susan Jennings, PennLive, February 24, 2020

A recent federal report dated January, 2020, faults Pennsylvania’s oversight of group homes for the disabled. And the report is damning, citing 18,880 unreported emergency room visits and 2,708 unreported hospital stays, along with un-investigated deaths among the report’s findings. These findings which deeply concern families and regular folk don’t upset the State Center closure advocates however because:

They say:

1. All problems detailed by this damning federal Inspector General report have been fixed now (Never mind that these are many of the same problems identified by then Pennsylvania Inspector General Bob Casey 20 years ago in the year 2000. Same old system, same old problems.)

2. The abuse/neglect in the "Community" is the fault of the Pennsylvania legislators - they didn't give the ARC and DHS enough money in the first place

“Governor to ask for more money to improve human services,” reads the latest headline.

(Say - if the “Community” can do everything the State Centers can do for less money, then why do they need more and more money to keep their residents safe?)

3. We can prevent abuse/neglect in “Community” services with enough “training.” Yep, “Training” should fix everything, and you can pay us to provide it, too! The Office of Developmental Programs has just issued a training needs survey.

As journalist John Hirschauer put it so well: “When there is an incident of abuse and neglect in what the prevailing advocacy voices deem a “community setting,” then that incident is an aberration that can be resolved by more funding and better training techniques. When there is an incident of abuse and neglect in what the prevailing advocacy voices deem an “institution,” not only must the institution in question close, but all such facilities, which are even mildly evocative of the 1. size; 2. architecture; 3. location of the institution in question, must close as well.”

The real problem is the seclusion and isolation of the scattered, dispersed, four-person “group homes” and apartments in “Community” where abuse/neglect can go on behind closed doors where no one can see and where there is no real oversight.

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]
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
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.

Money Follows the Person Renewal (Authorization and Appropriations) - Money Follows the Person (MFP) has been a popular program that has helped many people to move from congregate care into smaller, settings. Unfortunately, it has been used by some states to force the closure of ICFs and move people into "integrated" settings without their consent. We ask that MFP not be renewed until this and other shortcomings have been remedied. MFP has passed through Congress by voice votes, without discussion of these problems.


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).

H.R. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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