April 26, 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

Conference Speakers - June 9th Legislative Initiative:

Melissa Stone - Director, Division of Developmental Disabilities Services, Arkansas Department of Human Services

Amy Lutz - National Council on Severe Autism, EASI Foundation

James Edmondson, M.D. PhD. On Medicaid Managed Care
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~

$125 per person if paid by May 5, 2019
$150 per person if paid after May 5, 2019
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C. 20001

Note: Mail in Registration is slow. We recommend registering online.
Additional donations to help defray the event’s costs are always appreciated



or bring your pre-printed reports to the conference

Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001

We have a bloc of rooms available for conference attendees. The VOR Group rate is $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.


To make your reservations online, click here or go to:
If you do not have internet access, c all 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.

Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor

Your donation will help defray the costs of this year's conference
and censure our success sharing our stories with one another and with our legislators on Capitol Hill.
National News:
HHS Office of the Inspector General Report:
CMS Should Do More to Help States Implement Long-Term Care Background Checks
By Lois A. Bowers, McKnight's Senior Living, April 26, 2019
The Centers for Medicare & Medicaid Services should do more to help states fully implement background checks for long-term care employees, recommends a report released Thursday by the Department of Health and Human Services Office of Inspector General.

CMS concurred with the recommendation.
Enacted by legislation in 2010, the National Background Check Program provides grants to states to develop systems to conduct background checks of state and federal criminal history records for prospective long-term-care employees for nine types of long-term-care facilities or providers:

  • providers of personal care services,
  • residential care providers that arrange for long-term-care services or provide long-term-care services,
  • skilled nursing facilities,
  • nursing facilities,
  • providers of adult day care,
  • home health agencies,
  • providers of hospice care,
  • long-term-care hospitals and
  • intermediate-care facilities for individuals with intellectual disabilities.

The OIG reviewed grant-monitoring documents and financial reports and collected additional information to determine the extent to which the 10 states that concluded participation between 2013 and 2016 had implemented certain program requirements.

According to the 40-page report:

  • Alaska, Washington, D.C., Florida, New Mexico and Rhode Island implemented all program requirements and, in fact, conducted background checks for more than the required nine types of facilities and providers.
  • Delaware and Connecticut implemented most of the selected program requirements.
  • Illinois, Maryland and Missouri did not have legislative authority to meet program requirements.
  • Alaska had the highest rate of determinations of ineligibility, at 8%.
  • Florida conducted the greatest number of background checks, resulting in the greatest number of determinations of ineligibility, 64,374.
  • Florida, Illinois, Alaska and New Mexico had the greatest percentages of determinations of ineligibility.
  • The background check programs in Washington, D.C., Connecticut, Rhode Island and Delaware resulted in the lowest rates of determinations of ineligibility of prospective employees.
  • Missouri and Maryland did not report determinations of ineligibility during the grant period.

The OIG suggested that CMS schedule future grant payments based on implementation of requirements or issue deficiency notices. The OIG also recommended that CMS continue to provide technical assistance to participating states that have challenges to implementing aspects of the program.

States Weigh Banning Pesticide Linked To Developmental Disabilities, Even though EPA Won't
By Ana B. Ibarra, Kaiser Health News, April 25, 2019
Lawmakers in several states are trying to ban a widely used pesticide that the Environmental Protection Agency is fighting to keep on the market.

The pesticide, chlorpyrifos, kills insects on contact by attacking their nervous systems.

Several studies have linked prenatal exposure of chlorpyrifos to lower birth weights, lower IQs, attention deficit hyperactivity disorder and other developmental issues in children. But the EPA in 2017 ignored the conclusions of its scientists and rejected a proposal made during the Obama administration to ban its use in fields and orchards.

Hawaii was the first state to pass a full ban last year. Now California, Oregon, New York and Connecticut are trying to do the same.
Should California succeed, the rear-guard action could have a big impact.

“If California is successful, that’s a big deal because it’s such a big state — the biggest agricultural state,” said Virginia Ruiz, director of occupational and environmental health at the Washington, D.C.-based nonprofit Farmworker Justice.

Earlier this year, congressional Democrats also introduced bills to ban the pesticide nationally, but experts believe states are more likely to succeed than Congress. Sen. Kirsten Gillibrand (D-N.Y.), who is running for president, introduced a separate bill last week that would prohibit schools from serving fruits and vegetables sprayed with the pesticide.

“I don’t see this as something we should still be debating,” said Irva Hertz-Picciotto, an epidemiologist and director of the Environmental Health Sciences Center at the University of California-Davis.
Hertz-Picciotto testified during a California Senate Health Committee hearing April 10 on California’s bill to ban the use of the pesticide. She said more than three dozen studies have demonstrated a connection between prenatal exposure of chlorpyrifos and developmental disabilities, including symptoms of autism.

“No study has identified a level at which we can consider it safe,” she told lawmakers.

Almost two decades ago, the EPA, which regulates pesticides at the federal level, ordered chlorpyrifos for residential use off the market. But the chemical still is used on crops — including citrus, almonds and grapes — and on golf courses and other non-agricultural settings.

Globally, several companies make chlorpyrifos products. In the U.S., the most recognized brand names are Dursban and Lorsban, manufactured by Corteva Agriscience, formerly known as Dow AgroSciences.

Under the administration of President Barack Obama, the EPA in 2015 proposed a complete ban of chlorpyrifos, citing evidence of health risks.

But in 2017, President Donald Trump’s EPA administrator, Scott Pruitt, declined to ban it.

“Despite several years of study, the science addressing neurodevelopmental effects remains unresolved,” the EPA says on its website. The agency did not return requests for comment.

The Search for a Biomarker for Early Autism Diagnosis
By Perri Klass, M.D., The New York Times,
April 22, 2019
Every pediatrician knows that it’s important to diagnose autism when a child is as young as possible, because when younger children get help and intensive therapy, their developmental outcomes improve, as measured in everything from improved language, cognition and social skills to normalized brain activity.

“The signs and symptoms for most children are there between 12 and 24 months,” said Dr. Paul S. Carbone, an associate professor of pediatrics at the University of Utah and a co-author of “Autism Spectrum Disorder: What Every Parent Needs to Know,” published by the American Academy of Pediatrics. “If we can get them in for evaluation by then, the therapies are available as young as those ages, you can easily start by 2,” he said. “We’d like to give kids the benefit of getting started early.”

That means taking parents seriously when they bring up concerns about what they regard as strange behaviors and interactions on the part of babies and toddlers, and it also means that we try to screen all our patients, often with a checklist for parents to complete, like the Modified Checklist for Autism in Toddlers, or M-CHAT. Children whose
scores indicate a concern are then supposed to be referred on for a full developmental assessment.

The Centers for Disease Control and Prevention’s website lists developmental milestones to look for; missing them may be an early sign of autism.
So we all know this is important. We also know that we are not, collectively, doing a very good job of screening all children, that the questionnaires often over-identify children who don’t actually need full assessments, and that the referral process can be plagued with long waits (and when a young child has to wait months for the assessment, that works against the benefit of early diagnosis).

Children in minority groups are diagnosed at an older average age than white children, and therefore get therapy later, contributing to increased disparities.

State News:
California - Cases of Abuse, Neglect of California Disabled Clients Going Unchecked: Whistleblower
By Candace Nguyen, KTVU-Fox 2 News, April 26, 2019
Cases involving starvation, neglect and sexual abuse targeting developmentally disabled clients in California are not being addressed thoroughly or going unchecked altogether, according to a former North Bay care employee who worked with patients.

Roberto Franco, an ex-employee of the North Bay Regional Center in Napa, said he is blowing the whistle on the multi billion dollar care industry that he believes is overwhelmed with cases and allowing serious incidents to fall through the cracks.

“It’s crazy because I’ve been trying to tell people about these things I’ve seen,” he told 2 Investigates.

As the number of clients increases each year so does the amount of public money budgeted to DDS. This year, the governor budgeted $7.8 billion to the state department, $435.2 million more than the previous year. 

Despite the increase in funds for services, numerous misconduct cases are not being properly reported or investigated, according to Franco. If even seemingly small issues go unchecked, he said, they can turn into serious cases of abuse and neglect that fly under the radar of the proper authorities for years. 

Franco was fired from the North Bay Regional Center (NBRC) in January 2018 for being “unprofessional and insubordinate,” according to his termination letter. But he believes regional center management penalized him for being
By law, the California Department of Developmental Services (DDS) is responsible for ensuring more than 330,000 people with developmental disabilities receive services and support. Every year, the department allocates billions of taxpayer dollars to 21 different regional centers statewide to carry out its responsibility. Those regional centers hire and pay service providers to directly house and care for clients whose disabilities include autism, epilepsy, intellectual disabilities and cerebral palsy.
persistently outspoken about client issues. As a service coordinator, it was his job to monitor client care and report problems. 

All caretakers, providers and agencies are legally required to report incidents where a client is hurt or could be hurt. These reports are processed by regional centers and DDS. 

Franco has since filed a whistleblower retaliation complaint with NBRC and DDS. In a letter, NBRC’s executive director, Gabriel Rogin, said the “complaint of wrongful termination does not fall within the scope of [the regional center’s] whistleblower policy...we feel strongly that we have proper basis for termination of employment.”

DDS would not comment about Franco’s whistleblower complaint with the state but said it takes all complaints seriously.

Washington’s Health Care Community Unites to Oppose Medicaid Budget Cuts
By Emily Boerger, Washington State Wire, April 23, 2019
In a series of letters sent to legislators, members of Washington’s health care community have come together to oppose cuts to the state’s Medicaid program in both the House and Senate operating budget proposals.

The letters stem from a cut in excess of $300 million to the Health Care Authority (HCA) that’s included in both the House and Senate proposals. The budgets cut $101.8 million in general funds and $351.5 million in total funds, based on the assumption that Managed Care Organizations (MCOs) will be able to save this money though “program integrity activity recoveries.”

In July 2018, CMS identified areas of concern with MCO oversight, and in a January 2019 report, recommended program integrity activities to save money by combatting provider fraud, waste, and abuse.

An April 8 letter to legislators from Medicaid Director MaryAnne Lindeblad outlines HCA’s concerns with relying on program integrity activities to save the state over $300 million.

“While it is certainly true CMS recently identified areas of concern with managed care program integrity oversight after a focused review of Washington and select MCOs in July 2018, along with similar efforts across the nation, the audit in no way indicated a level of budget savings that could be achieved congruent with the budget,” reads the letter.

“Recovered dollars related to program integrity activities can vary from year to year and are difficult to forecast” as they are based on provider billing behaviors, refunded federal match, and timeliness of the recovery, Lindeblad wrote.

If the $300 million in savings aren’t achieved through these measures, Lindeblad writes that the budget will result in real cuts to the Medicaid program.

Arizona - Gov. Ducey Signs Bill to Protect Vulnerable Adults
By Katie Campbell, Arizona Capitol Times, April 25, 2019
Gov. Doug Ducey on Wednesday signed the first bill meant to better protect vulnerable adults like the woman who was victimized in a center charged with her care last year.

Sen. Heather Carter, R-Cave Creek, introduced Senate Bill 1211 to close a loophole in state law that allowed centers like Hacienda HealthCare to operate without a state license since the 1990s.

Her bill also strengthened background check requirements for intermediate care centers serving people with intellectual disabilities.

Ducey had long indicated his support for the bill and signed it without comment yesterday.
An incapacitated woman was raped at Hacienda, a fact the facility staff were apparently unaware of until she gave birth in December. Her abuse shocked the state and the nation, leading to public conversations about how best to protect others like her who are made victims by the people entrusted with their care.

Former Hacienda nurse Nathan Sutherland was the alleged perpetrator and is awaiting trial.

Arizona - New Dental Clinic Caters to Those with Intellectual Disabilities
By John Genovese, ABC 15 News, April 22, 2019
A new, non-profit Phoenix dental clinic is hoping to help train aspiring dentists and offer a vital resource for patients with physical or intellectual disabilities.

“We’re here to just be a starting point,” said Dr. Jacob Dent, a dentist at the Pacific Dental Services Foundation’s ‘Dentists for Special Needs’ clinic off Bell Road near Tatum Boulevard.

PDSF estimates there are around 52 million people in the U.S. living with a disability, including 600,000 in Arizona. From their research, “only about 10 percent of [dentists] are actually willing to see someone with special needs,” Dent said, especially patients with a condition like autism or Asperger's syndrome.

The clinic, which just opened late last month, allows new patient families to spend an hour becoming acclimated to the environment with no other patients in the office. Younger patients begin their visit in a “sensory room” filled with toys and items to help them adjust. The clinic has a special x-ray machine that can scan a patient’s mouth without them having to put anything inside.
One exam room has no dental chair — instead, a mat to sprawl out — and another is equipped with a velcro restraint, if needed, to prevent a patient from reaching their mouth during an exam.

“The goal for this is we’re trying to avoid having to do a sedation,” Dent said, which can be harmful over time. Dent, who has a 15-year-old son with autism, said families are often forced to make yearly visits to the hospital for a simple teeth cleaning.

“Teeth are teeth,” he said, “anybody can treat teeth but [this] is treating the behaviors, treating the family as a whole.”

Texas - Governor Abbott Reappoints Bithos As Independent Ombudsman For State Supported Living Centers
Austin, Texas / April 25, 2019

Governor Greg Abbott has reappointed George P. Bithos, D.D.S., Ph.D. as the Independent Ombudsman for State Supported Living Centers for a term set to expire February 1, 2021. The Ombudsman’s office provides oversight and protection for residents of state supported living centers, and advocates for residents with Texas Health and Human Services.

George P. Bithos, D.D.S., Ph.D. of Austin is the Independent Ombudsman for State Supported Living Centers, and has served in the position since 2010. This appointment is subject to Senate confirmation.

VOR Bill Watch:
There are currently six bills in Congress that would discriminate against the more disabled members of the IDD community, three in the House of Representatives with companion bills in the Senate. The Money Follows the Person Rebalancing Program renewal has been signed into law by President Trump. (Click on each bill to view details)

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. 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.

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. Bot issues deserve clean, stand-alone bills.

H.R. 1839 - This bill has provisions to extend the Money Follows the Person Rebalancing Program , which has been used as a tool to remove people from ICFs with the intention of shuttering the facilities.
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's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Note: Mail in Registration is slow. We recommend registering online.

Additional donations to help defray the event’s costs are always appreciated

Sponsorship Opportunities Are Available!
If you are unable to attend, or if you or your family association would like to support our conference, you can help by becoming a sponsor
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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