May 31, 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


Once again, our action for this week is to keep calling
Members of the House of Reprsentatives
to tell them you oppose the
Disability Integration Act (H.R. 555)

Let them know that ADAPT does not speak for you!

If you have not already engaged
in our email campaign to
Please do so now!
The DIA has been gaining dangerous momentum in the House of Representatives.
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~

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


or bring your pre-printed reports to the conference

Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor
National News:
NOTE: The US Department of Labor has opened a forum for people to speak out about closing work centers and eliminating 14(c) wage certificates. Proponents of this movement claim that everyone who can work in a sheltered environment can work in competitive, integrated employment.

We disagree.

We know a different truth. People who are more severely impacted with intellectual disabilities will not fare well in the employment market. Work centers are equipped with people prepared to encounter frequent seizures, outwardly dangerous or self-injurious behaviors, and the need to change adult diapers. They understand that some people do not, can not, or will not work at a level that is competitive with other employees.

For these individuals, it's not about the pay. it's about the opportunity to be productive, to work in a safe environment tailored to their unique needs and abilities, and to interact with peers. Without specialzed 14(c) wage certificates, these individuals will be forced into day programs and more restrictive activities.

VOR asks you to go to and fill out this survey, and to stand up for 14(c) wage certificates for individuals with intellectual disabilities.

Remember: No one is being forced into 14(c) work centers. Anyone may refuse to participate and to seek competitive, integrated employment.

Supporting competitive, integrated employment programs for those who seek competitive wages should not come at the cost of opportunities for people who are unable to qualify for those programs.
Labor Department Seeks Input On Subminimum Wage
By Michelle Diament, Disability Scoop, May 31, 2019
Amid ongoing debate about whether employers should be able to pay people with disabilities less than minimum wage, federal officials are asking the public to weigh in.

The U.S. Department of Labor says it wants to hear about “ideas, individual stories and personal experiences” related to subminimum wage employment.

Under current law, employers can obtain what are known as 14(c) certificates from the Labor Department, which allow them to pay workers with disabilities less than the federal minimum wage of $7.25 per hour. Employees who are paid at a lower rate are supposed to be compensated based upon their productivity level compared to that of someone without a disability.

The agency’s Office of Disability Employment Policy is holding what it’s calling a national online dialogue to solicit feedback on the program.
“The goal of this online dialogue is to capture perspectives about section 14(c) based on individual input from those ‘on the ground,'” the Labor Department said.

Comments and ideas collected through a special website will be summarized to provide an overview of what’s happening across the country, officials indicated.

The Labor Department said that it’s hoping to hear from people with disabilities, their families, service providers, disability groups, employers, researchers and other stakeholders.

Opinion: Federal Deinstitutionalization Bill Would Lower Human Services Care Standards
By Dave Kassel, The COFAR Blog, May 31, 2019
Unfortunately, the entire Massachusetts congressional delegation has signed onto a newly filed bill in Washington, which, as currently written, would encourage further unchecked privatization of human services, diminished oversight, and reduced standards of care across the country.

In Massachusetts, the bill, known as the federal Disability Integration Act of 2019 ( HR.555 and S.117), would threaten the Wrentham Developmental and Hogan Regional centers, the state’s only two remaining residential facilities for the developmentally disabled that meet federal Intermediate Care Facility (ICF) standards.

Moreover, we think the bill does not comply with the law under the 1999 U.S. Supreme Court decision in Olmstead v. L.C., which recognized the value and legitimacy of institutional or congregate care for those who want and need it.

HR.555 (and the Senate version, S.117) calls explicitly for the the “transition of individuals with all types of disabilities at all ages out of institutions and into the most integrated setting…” (emphasis added). The legislation specifies that the federal government would provide funding for technical assistance to states “to prevent or eliminate institutionalization” of persons with developmental disabilities.

This language does not comport with Olmstead, which held that that the Americans with Disabilities Act (ADA) does not condone or require removing
individuals from institutional settings when they are unable to benefit from a community-based setting. In addition, the ADA does not require the imposition of community-based treatment on patients who do not desire it.

At the very least, the language in this bill should be changed to respect the choice of individuals, families, and guardians, either to apply to get into, or to remain in congregate-level care facilities.

HR.555 perpetuates the myth of institutions as providing “segregated” care. It fails to acknowledge the relentless pursuit of deinstitutionalization in recent decades, which has caused “human harm, including death and financial and emotional hardship.”

What the bill particularly fails to take into account are the major upgrades in care and standards in congregate-care facilities since the 1970s, largely as a result of federal lawsuits brought in Massachusetts and other states.

The irony is that while those lawsuits also led to the introduction and growth of privatized, community-based care throughout the country, poor oversight and low pay and training of staff in the privatized group-home system has recreated many of the warehouse-like characteristics of large institutions prior to the 1980s.

State News:
Ohio - State Looks To Help Families Of Kids With Severe Behaviors
By Rita Price, The Columbus Dispatch Via Disability Scoop, May 30, 2019
By the time Julie Callahan reported herself to child protective services, she had done everything in her power to avoid making that phone call.Callahan never abused her teenage son. She didn’t neglect him.

All she did was try, and fail through no fault of her own, to secure the care and treatment 14-year-old Jackson Hurt needs so he won’t be such a danger to himself and others.

So he can stop putting his head through windows. Stop blackening his mother’s eyes and pulling out her hair. Stop traumatizing his younger brother and older sister, who had to be instructed on how to inform police that Jackson doesn’t mean to harm his family and that he has severe autism and mental illness and can’t help it.

“In my mind, I knew I was doing the right thing,” Callahan said of her decision to turn to Franklin County Children Services last fall. “In my heart, it was the worst.”

The Grove City resident is among an untold number of Ohio parents who have had to relinquish custody of a troubled child simply because they don’t have unlimited amounts of money and insurance coverage. Surrendering custody to a system designed to protect kids from abusive or inadequate caregivers is bitter, they say, but it’s sometimes the only way to obtain desperately needed services.
“I was treated, at first, as a mom who was abandoning her child,” Callahan said. “I had to have a pretty thick skin.”

State and local officials have long said that no parent should have to make such a heart-wrenching choice. But the past few years of attempts to set aside funds that can be tapped to prevent custody relinquishment haven’t produced much in the way of additional support for families.

“The goal of the state should always be to maintain families,” said state Sen. Jay Hottinger, R-Newark. “You scratch your head and say, ‘How is this loving mother or father having to make the heart-wrenching decision to relinquish custody?'”

Hottinger introduced an amendment to the biennial budget bill last week that would provide $6 million in the first year and $12 million in the second specifically to “prevent the use of custody relinquishment as the only means for parents to get care and treatment for multisystem youth.”

Texas' Medicaid system hurt vulnerable people as insurers got rich. Now major reforms Head to Gov. Abbott
By I. David McSwane, Dallas Morning News, May 27, 2019
In 2016, a foster baby born with severe defects needed constant monitoring from a nurse, to ensure he didn't pull out his breathing tube and choke to death. The insurance company Texas pays to provide that care refused, saving Superior HealthPlan as much as $500 a day. Then the state's appeal system failed D'ashon, deferring to Superior. Months later, as D'ashon's nurses and foster mother warned would happen, the baby tugged out his breathing tube when his nurse wasn't around and suffocated for so long that he's now in a permanent "vegetative state."

If bills that passed the Texas Legislature this week had been enacted then, D'ashon might have been saved. 

It's too late for D'ashon, but If Gov. Greg Abbott signs those fixes into law, thousands of other sick and disabled Texans might have a fighting chance when they're refused care by Medicaid companies that pocket more money when they spend less on care.

Those measures were prompted by "Pain & Profit," a Dallas Morning News investigation that found widespread failures in Texas' privatized system known as Medicaid "managed care."

The biggest patient protection that cleared both chambers is the creation of an independent arbiter to review cases when so-called managed care organizations, or MCOs, refuse to pay for doctor-ordered treatments and equipment. That "external medical reviewer" represents a potentially life-saving safety net for patients like D'ashon, who currently must exhaust appeals with MCOs, and then if they're determined enough, scale a faulty medical appeal system that heavily favors companies.

Three key bills include other protections, such as more transparency and a bit more oversight — not enough, patient advocates say – around the opaque and ever-changing rules companies cite as justifications when they deny services taxpayers have already paid for.

While Texas and the federal government set broad guidelines, more than a dozen MCOs write their own rules for what is and isn't covered and which treatments require an additional obstacle to being approved.

North Carolina - Funding for Behavioral Health Care Would Drop by Tens of Millions of Dollars under N.C. Senate’s Proposed State Budget
By Richard Craver, Winston-Salem Journal, May 29, 2019
The fractured relationship between state legislative leaders and the seven behavioral health managed care organizations (MCOs) surfaced again Tuesday with the release of the state Senate budget plan.

The MCOs would lose $51.4 million in single-stream funding in the 2019-20 and 2020-21 fiscal years in the Senate proposal, while the House budget cuts would total $36.4 million each fiscal year. The Senate cut would be just under $25 million each year for Cardinal Innovations, while the House would reduce Cardinal by $9.64 million each year.

Cardinal is the state’s largest behavioral health MCO. It serves 20 counties, including Forsyth and five others in the Triad.

Cardinal handles more than $675 million in annual federal and state Medicaid money. It said it served about 26,000 individuals with single-stream funds in fiscal 2017-18.
The state Department of Health and Human defines single-stream funding as a method for paying for services for individuals who have a diagnosis of mental illness, a developmental disability, a substance abuse issue or a combination. Services are delivered by providers contracted with MCOs.

In theory, the more single-stream funding an MCO receives, the more provider services it can deliver. Providers see it differently.
Cardinal said in a statement that “continued cuts to single-stream mental health funds will inhibit us from serving our members with the care and services they need and deserve.”

Meanwhile, behavioral-health advocates and a bipartisan group of state legislative leaders have expressed concerns for several years that the MCOs, in particular Cardinal, may have been limiting recipient services in order to build up their fund balances through stockpiling excess savings.

North Carolina - Would-be Medicaid managed care groups ask judge for second look
By Sarah Ovaska-Few, North Carolina Health News, May 29, 2019
Ongoing court challenges to the DHHS' choices for Medicaid managed care providers threaten to derail the schedule for transitioning the program, set to start this November. More than $30 billion in contracts is at stake.

North Carolina’s ongoing transition to Medicaid managed care system could screech to a temporary halt if an administrative law judge agrees with rejected managed care groups that the process to select contractors was flawed and unfair.

Lawyers for three prepaid health care plans — Aetna Better Health, a commercial managed care company; Optima, a health care group connected to Virginia’s Sentara health care system; and My Health by Health Providers, a provider-led group formed by a dozen of the state’s hospital systems – appeared in administrative law courtrooms in Raleigh this month. All three tried to make the case that each deserved another shot at consideration for a lucrative Medicaid managed care contract.

The groups contend the N.C. Department of Health and Human Services used an inconsistent
and flawed process to decide what groups received lucrative contracts in the new managed care system, in which the state will prepay managed care companies to handle the health care needs of low-income seniors, disabled persons, children and their families who depend on Medicaid.

Accusations lobbed against DHHS in court and in legal filings include assertions the state treated companies differently even when answers to questions were substantially similar; used a process that favored large, commercial plans over state-based, provider-led offerings; and a willingness to overlook compliance issues vendors had in other states.

At stake is a lot of money – an estimated $30 billion over five years – and health care coverage for 1.6 million North Carolinians who depend on Medicaid.

Massachusetts Human Services Providers Unable to Hire, Keep Staff
By Chris Lisinski, State House News Service, May 28, 2019
With stagnant wages, frequent turnover and the growing pressure of student loan debt, human services providers face a staffing crunch that leaves them without sufficient resources to meet the needs of the state’s most vulnerable populations, advocates told lawmakers Tuesday.

More than a dozen bills were before the Joint Committee on Children, Families and Persons with Disabilities for a hearing, but a common theme ran through many of them: addressing the plight of service employees who, despite helping those with significant physical and mental needs, cannot make ends meet.

“We’re in a crisis,” said Justice Resource Institute CEO Andy Pond, who was one of several speakers to describe the situation that way. “We can’t find the staff we need or keep the ones that want to stay. In many cases, they’re forced to abandon the work that they love, thereby depriving the commonwealth of some of its most important workers.”

Several legislative solutions are on the table that both employees and employers said Tuesday would have significant positive effects, particularly a state-administered loan repayment program and an effort to reduce the wage gap between state and community-based human services jobs.

Under the proposed loan program (S 56 / H 163), full-time human services employees who earn less
than $50,000 per year — a higher salary than many in the field make in entry- and mid-level positions — would qualify to receive $150 per week from the state for up to four years to help defray the costs of student loans. Supporters did not offer an estimate Tuesday of how much the program would cost.

Half a dozen such workers offered personal testimony Tuesday, describing tens of thousands of dollars they owe on loans as a burden that prevents them from purchasing a house or starting a family. Some shared stories of colleagues who jumped to better-paying work in research or biotechnology, leaving fewer employees to help those in need.

“I am imprisoned by my debt and have to put my life on hold,” said Eileen Foley, a mental health clinician at NFI Massachusetts who faces more than $140,000 from earning her master’s degree. “Outside of myself, student loan debt is casting a shadow over the health field, and my concern is the barrier that student loans will put on the health care field, in turn creating a crisis.”

New Jersey - State bars Bellwether Behavioral Health from running group homes in NJ. Now what?
By Lindy Washburn, Eugene Myers and Kimberly Mulford, North Jersey Record, May 26, 2019
More than 400 vulnerable people living in group homes run by Bellwether Behavioral Health, the troubled company barred by the state from future business in New Jersey, should see better conditions as new management takes over the homes, officials said.  

Moving quickly to protect the safety and health of the developmentally disabled residents of Bellwether’s 62 homes after a scathing report by a state-appointed monitor, human services officials have chosen nine different social service providers to assume responsibility for their operations.  

“Each provider agency will take over operations of a specific set of homes and/or day programs by region and service specialty,” said Tom Hester, a
spokesman for the state Department of Human Services. “Working with multiple agencies helps to ensure that transitions happen safely and as quickly as possible.”

More than a quarter of the 62 Bellwether homes in New Jersey currently fall short of state licensing standards and are operating under provisional licenses; 10 recently returned to full license status, state officials said. The number of incidents at Bellwether homes investigated by the state over the last year — 71 — was more than three times higher than for any other agency, according to state records. 

Parents appalled by autistic son's alleged abuse at group home
By Spencer Blake, AZ Family, May 22, 2019
A caretaker at a group home in Mesa is facing charges for allegedly beating up a teenager who has severe autism. The victim’s parents say he had marks and bruises on his body from the assault.

Mesa police say Nick was abused at Care and Dignity, a group home for the developmentally disabled. Fourteen-year-old Nick lived there day and night on weekdays.

“He had a lot of bruising around his eye. He had some marks on his chest from where he got stomped,” said his mom Denise Hill about the alleged abuse occurring on May 13.

Nick’s parents heard what happened from the staff at the home. In an incident report to the state, the staff said: "staff member Anthony Adusei began to punch Nicholas in the face three times then kicked him."
Police arrested Adusei in Mesa on May 13. The report says he initially denied hitting Nick and told police he was trying to prevent him from biting. Police say he later changed his story and admitted to hitting Nick one time.

Hill and her ex-husband removed Nick from the home. He’s now splitting his time between his mom and dad’s houses for the time being. It's a hard adjustment to make for someone who thrives on routines. Since the trauma, mom and dad say Nick regressed to behaviors he hasn’t had in years.

VOR Bill Watch:

H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

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. 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.
What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

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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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