April 19, 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



or bring your pre-printed reports to the conference

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

Sunday, June 9th - Conference Speakers
James Edmondson, M.D. PhD. - States Transitioning to Medicaid Managed Care
Amy S. F. Lutz - National Council on Severe Autism and The EASI Foundation
More speakers TBA soon!
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
Need a roommate for the conference?
Contact us at [email protected] and we will try to help!
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.

The VOR Conference and Legislative Initiative is your opportunity to advocate on behalf of your loved one on a national level. It is an opportunity to network with families and guardians from across the country. This conference brings individuals who bring a historical perspective on important legislative issues as well personal interest stories You will be taking part in hands on lobbying activities around the capitol pertinent to preserving our residential living centers. Through your participation you can acquire the knowledge and experience that will serve you in meeting with your state legislative offices. Most importantly this is an opportunity to meet like-minded individuals and form friendships outside of our communities that can inspire and motivate.
Tom Diaz M.D. Houston Texas
National News:
Feds to Investigate Whether Medicaid Firms are Unfairly Denying Care to Disabled People
By Tony Leys, Des Moines Register, April 17, 2019
Federal investigators will look into whether private Medicaid management companies, including those covering more than 600,000 poor or disabled Iowans, are unfairly denying services.

U.S. Sen. Bob Casey requested the review last week. The Pennsylvania Democrat wrote to the Department of Health and Human Services that he was troubled by media reports that the companies were cutting care to disabled Americans who rely on Medicaid.

Casey cited articles from the Des Moines Register and the Dallas Morning News about managed care organizations denying care.

“It is the duty of MCOs, as a steward of taxpayer dollars, to spend Medicaid funds responsibly in pursuit of the health of our families,” he wrote.

“What the Dallas Morning News and Des Moines Register uncovered, however, were actions taken by the MCOs focused squarely on delivering
"If I can't get the help, who's getting it?"
-- Jamie Campbell

profits to wealthy shareholders at the expense of those most in need of care.”

The federal agency’s Office of Inspector General agreed to look into the matter. A listing on its website says a report could be expected in 2020.

Iowa shifted almost its entire Medicaid program to private management in 2016. Supporters, including Republican Gov. Kim Reynolds, say the shift is making the program more sustainable by providing efficient care. Critics say it is leading to cuts in services, snarls of red tape and rising costs.

CDC Finds More Preschoolers Have Autism
By Michelle Diament, Disability Scoop, April 15, 2019
New federal figures indicate that autism prevalence among young children is on the rise.
The number of 4-year-olds with the developmental disorder increased from 1 in 75 children in 2010 to 1 in 59 kids in 2014, according to data published late last week in the Center for Disease Control and Prevention’s Morbidity and Mortality Weekly Report.

The findings are the latest to emerge from the CDC’s Autism and Developmental Disabilities Monitoring Network. Traditionally, the network tracks prevalence among 8-year-olds using a review of health and educational records in certain geographic areas across the country. More recently, the agency has expanded its surveillance work to look at 4-year-olds and 16-year-olds.
The report out this month is among the first to detail the CDC’s findings on 4-year-olds. It is based on information collected by researchers at sites in Arizona, Colorado, Missouri, New Jersey, North Carolina, Utah and Wisconsin in 2010, 2012 and 2014. Some sites collected data in all three years, but others only participated part of the time.

Safety Net Hospitals Near 'Breaking Point,' Advocacy Group Says
By Les Masterson, HealthCare Dive, April 12, 2019
The group representing about 300 U.S. safety net hospitals warned in a new report the facilities are struggling to keep up with uncompensated and charity care. Medicaid's pending disproportionate share hospital cuts would push the facilities to a "breaking point" unless Congress steps in, America's Essential Hospitals CEO Bruce Siegel said. A $4 billion reduction in DSH payments is slated to go into effect in October.

AEH hospitals operated with an average margin of 1.6% in 2017, which was half what they had in the previous year and below the 7.8% average of other hospitals, according to the annual financial report released Thursday.

Safety net hospitals make up about 5% of U.S. hospitals but in 2017 provided 17.4% of uncompensated care, totaling $6.7 billion, and 23% of charity care, which added up to $5.5 billion. That's up from 20% of all charity care and $5.5 billion in overall uncompensated care in 2016.

The AEH report confirmed that safety net hospitals take on a disproportionate share of at-risk patients,
who are frequently uninsured. Those facilities saw 15 million people in their emergency departments and 80 million in non-emergency outpatient visits.

The report found that three-quarters of those patients were uninsured or covered by Medicaid or Medicare, which pay lower reimbursement rates than private payers.

AEH isn't the only group concerned about cuts. The Medicaid and CHIP Payment and Access Commission recently warned they could result in financial instability for some safety net hospitals and recommended the federal government stagger DSH payment reductions. Rather than cut payments by $4 billion in fiscal year 2020 and then $8 billion annually between fiscal years 2021 to 2025, MACPAC suggested reducing payments by $2 billion in FY20, $4 billion in FY21, $6 billion in FY22 and $8 billion annually between FY23 to FY29.

Opinion: Trump’s Budget Is Full of Cuts Aimed at People With Disabilities
By Tom Ridge,
Chairman, National Organization on Disability,
The New York Times, April 17, 2019
Last month’s proposal from Secretary of Education Betsy DeVos to cut millions of dollars in funding for Special Olympics caused a public uproar and a bipartisan backlash fierce enough to force President Trump to restore it days later. That reversal was welcome. But it was also incomplete. Most Americans do not know that the 2020 budget is still full of cuts that aim directly at many other programs that support people with disabilities.

The Trump administration’s fiscal year 2020 budget would make cuts across multiple agencies and offices that serve Americans with disabilities, stripping them of essential resources. Of particular urgency to me and many of my colleagues are the devastating impacts that the weakening of these agencies would have on job seekers with disabilities.

Independent living centers, assistive-technology programs, supports for individuals living with brain injuries and family caregiver support services are among those programs and services on the chopping block.
So too is the Office of Disability Employment Policy. This office, within the Labor Department, is the only nonregulatory federal agency that promotes policies and coordinates with employers and all levels of government to increase workplace success for people with disabilities.

Combined, these cuts total in the tens of millions of dollars. Cutting funding to these critical programs — that turn tax consumers into taxpayers — is not only unjust but also fiscally foolish.

State News:
Louisiana - 'We're Not Asking for a Handout': Advocates Plead for More Funding at Budget Panel
By Sam Karlin, The Advocate, April 17, 2019
The Louisiana Legislature, for once, is not facing a major fiscal crisis as lawmakers craft the state’s budget.

But advocates for people with disabilities, the elderly and people with mental health disorders still showed up in full force for public testimony day at the House Appropriations Committee, where they pleaded for additional money for services and lamented funding levels for certain programs that have remained low for a decade.

“We’re here today asking you, pleading with you, restore our funding so we can continue to operate, so our doors can continue to open,” said Sharon Gomez, of Evergreen Life Services, which provides services for people with developmental disabilities. “35,000 citizens with intellectual and developmental disabilities are counting on you to do what it takes so their livelihood can continue.”
With often tearful testimony, advocates asked for several million dollars to fund programs like TEFRA, which would give people coverage for children with developmental disabilities even if they don’t normally qualify for Medicaid. Others sought about $6 million for two human services authorities, including the Florida Parishes Human Service Authority, which would bolster developmental disabilities services. Mental health advocates said their programs remain fragmented and underfunded. 

Gomez said the rates paid for things like home and community based waivers have stayed stagnant for years, even as costs have risen. Her organization, based in the Shreveport area, has increasingly turned to fundraising to try to keep up.

New Mexico - Left Behind: Special Needs Students Suffer when Schools Skimp on Funding
By Ed Williams, Searchlight New Mexico, April 17. 2019
When the fire alarm sounded before lunch in November of 2017, the staff at Alta Vista Elementary School knew they had a problem. A 6-year-old boy confined to a wheelchair needed to evacuate with the rest of his class. Unfortunately, the school had never purchased a chair that would let him leave the building. As the alarm kept sounding, teachers hovered nearby and debated what to do. The school had never put together an evacuation plan for the child. Finally, a physical therapist picked up the distraught boy and carried him out in her arms.

Though it wasn’t a real emergency (a student had pulled the alarm as a prank), the event laid bare the dire situation of special needs students in a district that suffers from severe – and often self-inflicted – budget woes.

The mountain-rimmed village of Questa, just south of the Colorado border, is home to one of the worst performing districts in the state, its schools earning multiple F’s from the Public Education Department.
But in recent years, its most immediate problems have centered on failures providing services to its 68 special needs students. Administrators have time and again denied pay to nurses, therapists and special education staff, according to complaints filed with the state.

Further complicating the problem, the district has lost an astounding number of employees. Michael Lovato, the current superintendent of the Questa Independent School District, is the fifth person to take on the job in two years.

Four school nurses have left since 2018, according to staff emails; in recent years the school has also lost physical therapists, speech therapists and special education teachers. Some lasted only a few weeks.
“It’s just a full-blown mess like nothing I’ve ever seen before,” said Misti Oracion, who until recently worked with parents in Questa as a liaison with the nonprofit group Parents Reaching Out, a statewide organization that advocates for families of children with disabilities.

“Kids who were supposed to be getting physical therapy, occupational therapy, speech therapy, pretty much they were told, ‘We can’t help you; we don’t have the budget.’ Anything they were supposed to be receiving under the [Individuals with Disabilities Education Act], they pretty much stopped receiving.”

Investigators from the Public Education Department have identified such violations as widespread among Questa’s special education students. Responding last school year to a formal complaint from a physical therapist, PED randomly sampled a group of special needs students in Questa and found they had collectively been denied 45 hours of services over a 10-week period.

But based on the district’s budget, the failures don’t add up. The PED funds the bulk of schools’ special education budgets through the state equalization formula, which substantially increases districts’ money based on the number of special needs students.

Physical therapists and other support staff are reimbursed through Medicaid. Additional federal dollars to cover special education for Questa amounted to $134,821 this current school year. Taken together, state and federal funds should ostensibly be enough to cover the services denied to the district’s special ed population.

Tennessee (Follow-up) - Funding for Kids with Severe Disabilities in Need of TennCare Not in Governor's Supplemental Budget
By Jessica Bliss, Nashville Tennessean, April 17, 2019
Families across Tennessee waiting to see if the governor would fund legislation to support children with severe disabilities were disappointed on Tuesday.

Gov. Bill Lee's supplemental budget did not include appropriations for the medically needy children who cannot get state health care because their parents' income exceeds qualifying limits.
Currently, the cost for caring for children with disabilities can bankrupt Tennessee families as working parents pay for the therapies, nursing care and vital equipment that private insurance does not cover.

Legislation making its way through the state House and Senate would allow these children to qualify for TennCare regardless of their parents' salaries and relieve families of what can amount to hundreds of thousands in medical bills each year.
The legislation is named after Katie Beckett, a girl who in the 1980s inspired President Ronald Reagan to change federal law to support families who wanted to raise their severely disabled kids at home.

It comes with an estimated price tag of $27,344,100 in state dollars. It would support approximately 3,000 children in Tennessee.
"Governor Bill Lee had an opportunity to dramatically improve the lives of Tennessee children with long-term disability or chronic illness and their families by including funding for a Katie Beckett Program in his supplemental budget," the Tennessee Disability Coalition said in a statement.

"We are disappointed that the Governor did not prioritize the health of these children, or the economic and family stability of their parents in his budget plans for next fiscal year."

Florida - Proposed Changes to Services for Special Needs Children Prompts Rally at Orlando Park
By Nancy Alvarez, WFTV-9, Apr 18, 2019
Parents rallied Thursday at Barnett Park in Orlando to confront the state about proposed cuts they believe could impact their children with special needs.  
Parents brought their signs, their children and their stories.
“I drove an hour today to be here today and cried almost the whole way in the car,” parent Chantal Buck said.
Buck's daughter is on the autism spectrum.
“It’s heartbreaking to hear from your doctor that your child will never say, ‘Mommy.’ She'll prob never be a functioning adult. Services like behavioral therapy give you hope,” Buck said.

Parents said the special services are in jeopardy because of a series of changes proposed by the Agency for Health Care Administration, or ACHA.

The proposed changes include upcoming reviews of therapy plans and a 50% cut in Medicaid reimbursements for the therapists who work with the children.
Providers said the move would force them to cut staff. “No providers means no services,” Buck said.
In a memo, ACHA said the rate cut was postponed.

“Are you postponing the rate cut or canceling it all together?” Channel 9 anchor Nancy Alvarez asked an ACHA employee.
The only reply given was, “I'm sorry. You need to call the communications officer.” 

Alvarez has called the communications officer for weeks, without receiving a specific response.
Parents and providers said they have experienced the same scenario. One by one, they expressed their frustration.

Illinois - ‘Already in Crisis:’ Report Says Medicaid Funding Shortfalls Causing Nursing Homes to Close
By Jerry Nowicki, Daily Chronicle, April 18, 2019
Since March 2014, 20 state-licensed skilled-care nursing homes have closed for financial reasons, while many of those continuing to serve the state’s neediest elderly populations face staffing shortages and operating deficits caused by diminishing state government investment.Nursing home advocates warn that the industry is already in crisis, and a continuance of this trend could mean an unavailability of care for Illinois’ aging population within a decade.

“These facilities are closing, and I can tell you more are going to close,” said Pat Comstock, executive director of the Health Care Council of Illinois, a nursing home advocacy group. “It’s happening because we have a situation in Illinois where they can no longer financially survive.”

The pace of closures has quickened in recent years, with five skilled-care nursing facilities – those that house the sickest and most vulnerable – closing from 2014 to 2016, six closing in each of 2017 and 2018, and three already shutting their doors in 2019, according to the Illinois Department of Public Health. 
To fully quantify the issues facing the industry and their possible solutions, HCCI commissioned a study conducted by the business advisory firm Plante Moran, the Claude Pepper Center of Florida State University, and managed care Medicaid expert Meredith Duncan.

The 85-page report states Illinois’ Medicaid ranks 49th in the nation for Medicaid reimbursement rates, and nursing homes lose approximately $15,000 per year – or an average of $41 per day – for each Medicaid-funded patient. Those shortages create a $649 million single-year funding shortfall across the industry in Illinois.

Illinois Shut Down his Group Home Network over Risk to Residents. Now He's been Convicted of Health Care Fraud for Unneeded Medical Tests
By Christy Gutowski, The Chicago Tribune, April 16, 2019
The head of a shuttered Chicago-area network of group homes for adults with disabilities has been convicted of accepting kickbacks in a scheme to steer biological samples to a St. Louis laboratory for publicly funded testing.

A federal jury found Reuben F. Goodwin Sr., 53, guilty of 11 counts of health care fraud and a conspiracy-related charge earlier this month in Missouri. A sentencing hearing is set for July 12.
The state-funded group homes run by Goodwin were among those spotlighted in a November 2016 Tribune investigation that detailed deaths, injuries and mistreatment inside various facilities and day programs across Illinois. The Illinois Department of Human Services revoked Goodwin’s license to operate his facilities after state inspectors visited the properties and determined that all 45 residents faced an “imminent risk” of harm.
In a federal indictment the following year, prosecutors said Goodwin and an employee, Phillip L. Jones, were part of a kickback plot with the St. Louis medical lab to split profits from Medicare and Medicaid reimbursements formedically unauthorized tests. Goodwin and Jones acted as marketers for the owners of the lab, collecting blood, saliva and urine specimens in 2014 and 2015 from large public fairs and churches in Indiana and Illinois, according to the indictment.

Authorities said the men also targeted residents with “severe” mental health issues who lived in a Goodwin facility and could not travel to a doctor’s office on their own. Many of the tests performed by the lab were never approved by a doctor, despite documentation submitted by the defendants indicating that a treating physician had ordered the tests.

Massachusetts - DPPC Ordered to Clarify its Abuse Reporting System Following Data Inflation Admission
By Dave Kassel, COFAR Blog, April 16, 2019

In the wake of an acknowledgement by the Disabled Persons Protection Commission (DPPC) that some of the data it had provided COFAR on abuse may be inflated, the state’s public records supervisor has ordered the agency to clarify the nature of the data it publishes.

The April 12 decision by Public Records Supervisor Rebecca Murray is in response to an appeal filed by COFAR after the DPPC stated that it was unable to provide data on the actual number of “abuse allegations” the agency receives each year and the number of such allegations that are substantiated by investigations.

In emails in March, Andrew Levrault, DPPC assistant general counsel, stated that spreadsheet data on abuse complaints and investigations, which the DPPC had previously provided to COFAR, “may be inflated.” He later stated, in a response to COFAR’s appeal, that the DPPC’s data may be “deflated” in some other instances.

Levrault said that the probable data inflation occurred because the agency does not track actual abuse allegations, but rather tracks abuse “intakes,” which are calls made to the agency. He said there may be “multiple” intake calls for each allegation, and that the DPPC is unable to “extract” the number of actual allegations that the agency receives.

Levrault’s statements appear to leave it unclear whether data listed in the DPPC’s annual reports accurately represents the number of abuse allegations or incidents that the agency is informed of or investigates. Levrault did claim in an email that the numbers in the annual reports are not inflated.
In her April 12 decision, Murray stated that while the DPPC has noted that it cannot extract data by allegation, “the DPPC did not clarify whether it could produce the data to back up the numbers DPPC uses to draft its Annual Reports.”

Pennsylvania - ‘This Shouldn’t Happen to Any Kid, Especially Kids This Vulnerable': Woods Services Faces New Lawsuits
By Harold Brubaker, The Inquirer, April 16, 2019
Nicholas Diaz acted out last summer when staffers at the group home for the intellectually disabled in Langhorne where he was staying denied him a snack. Diaz, a 21-year-old who has autism and suffers seizures, was beaten up by the caretakers, who left him with a black eye and other injuries to his face, neck, and arms.

Patricia Legare, another resident under the care of Langhorne-based Woods Services, had a shoe print on her back after an assault by a staffer in May 2017. Legare, 15 at the time, has autism and obsessive-compulsive disorder.

Those allegations are part of two lawsuits alleging abuse and neglect at Woods, which claims to serve 4,000 children and adults with intellectual and developmental disabilities, behavioral problems, and brain trauma.
“A kid has a shoe print on her back. This is clearly a major problem at the facility,” said Michael D. Shaffer, a Center City lawyer who is representing Diaz and Legare. “These kids are defenseless. This shouldn’t happen to any kid, especially kids this vulnerable.”

The complaints on behalf of Diaz and Legare, both New York residents, allege that the victims now have post-traumatic stress disorder and have become fearful of mental health workers.
The Legare lawsuit, filed Monday in U.S. District Court for the Eastern District of Pennsylvania, is Shaffer’s fourth against Woods, which had $134 million in revenue in the year ended June 30, 2018, not including affiliated nonprofits located away from Langhorne.

Georgia - CEO Of Disability Nonprofit Ordered To Pay $150K For Medicaid Fraud
By Zachary Hansen, The Atlanta Journal-Constitution via Disability Scoop, April 16, 2019

The operator of a Gwinnett County nonprofit pleaded guilty last week to being involved in scamming adults with disabilities out of money they were entitled to through the Georgia Medicaid program, authorities said.Jennifer Lynn Robinette, the CEO of Wishes 4 Me Foundation, Inc., pleaded guilty to a count of Medicaid fraud, exploitation of an adult with a disability and two counts of first-degree forgery, the Georgia Attorney General’s Office said.

She was accused of defrauding the Independent Care Waiver Program (ICWP), which is a Georgia Medicaid program intended to help adults with disabilities live more independently in their own homes.

She was sentenced to six months of house arrest with an electric ankle monitor, followed by 9 1/2 years of probation.

Robinette, 55, wrongfully used the Georgia Medicaid program to fund the nonprofit, which claimed to provide “structured living for adults with disabilities” and help “disabled adults live a more active lifestyle,” according to its website.

However, she assumed control of her residents’ participation in the program, forging their names on documents submitted to the Department of Community Health, the attorney general’s office said. That led to a raid on the residents’ homes and facilities last month.

While managing the nonprofit, she convinced residents to open joint bank accounts with her, which she used to transfer funds without their knowledge or permission, the attorney general’s office said. In total, she pleaded guilty to facilitating the payment of more than $800,000 to herself and others, $150,000 of which was deposited into her own bank accounts.

In addition to her 10-year sentence, she also was ordered to pay $150,000 in restitution to the Georgia Medicaid program and $2,500 to a former resident of Wishes 4 Me.

VOR Bill Watch:
There are currently seven 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, and one that has passed the House and Senate and is awaiting the President's signature. We are following them closely, and over the next few weeks/months may ask our members to sign on to Action Alerts to share our objections with our elected officials. (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. MFP has been renewed for first three months of this year. The new bills would renew it for another 5 years. MFP was included in a package of 6 previously-approved healthcare bills, and passed in the House and Senate by voice votes without discussion. The bill is likely to be signed by the President soon.
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
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