July 19, 2019
United States Capitol, Washington, D.C. - July 15, 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

National News:
On Thursday, July 18, the House of Representatives voted in favor of passing H.R. 582, the Raise the Wage Act. Tucked into this bill are provisions that would end Section 14(c) wage certificates and re-structure wages paid by work centers, forcing tens of thousands of people with intellectual disabilities who are unlikely to participate in competitive employment, out of their existing opportunities to work at facility based employment.

While some of our members may support raising the minimum wage while others may not, VOR members have come together to oppose this bill as written, in order to protect individuals who benefit from 14(c) and work centers that are designed to accommodate their specific needs and abilities.

Except for the article below, most coverage of this bill has only mentioned the increase in the minimum wage, with no mention of the effect this would have on people who would be unhireable under competitive integrated employment. Once again, the most vulnerable Americans are suffering discrimination at the hands of agencies that are supposed to protect their interests, and by the work of advocates and self-advocates who focus only on one segment of the community of people with intellectual disabilities.
House Votes To End Subminimum Wage
By Michelle Diament, Disability Scoop, July 19, 2019
For the first time, federal lawmakers have approved legislation that would end a practice allowing employers to pay people with disabilities less than minimum wage.

The U.S. House of Representatives voted 231 to 199 Thursday to pass the Raise the Wage Act, a bill chiefly designed to increase the federal minimum wage to $15 per hour by 2025.

Tucked inside the legislation, however, is a provision that would phase out subminimum wage for workers with disabilities.

Employers are currently able to obtain so-called 14(c) certificates from the Department of Labor allowing them to pay workers with disabilities less than minimum wage under a federal law dating back to the 1930s. The measure approved this week would require the Labor Department to stop issuing new 14(c) certificates and it would increase the minimum wage for workers employed under existing certificates gradually over the course of six years. At that point, any remaining 14(c) certificates would be invalid and employees with disabilities would need to be paid at least the prevailing federal minimum wage.

“We’re thrilled by the inclusion of phasing out 14(c) in the bill. Everyone deserves a fair wage for their work,” said Julia Bascom, executive director of the Autistic Self Advocacy Network. “Disability rights are workers rights, and it’s encouraging to see that recognized in this bill.”

But, many families have opposed such legislation arguing that subminimum wage employment gives people with more severe disabilities who may not be able to succeed in typical jobs a sense of purpose and an opportunity to contribute.

E.P.A. Won’t Ban Chlorpyrifos, Pesticide Tied to Children’s Health Problems
By Lisa Friedman, The New York Times, July 18, 2019
The Trump administration took a major step to weaken the regulation of toxic chemicals on Thursday when the Environmental Protection Agency announced that it would not ban a widely used pesticide that its own experts have linked to serious health problems in children.

The decision by Andrew R. Wheeler, the E.P.A. administrator, represents a victory for the chemical industry and for farmers who have lobbied to continue using the substance, chlorpyrifos, arguing it is necessary to protect crops.

It was the administration’s second major move this year to roll back or eliminate chemical safety rules. In April, the agency disregarded the advice of its own experts when officials issued a rule that restricted but did not ban asbestos, a known carcinogen. Agency scientists and lawyers had urged the E.P.A. to ban asbestos outright, as do most other industrialized nations.

The substance, sold under the commercial name Lorsban, has already been banned for household use but remains in widespread use by farmers for more than 50 fruit, nut, cereal and vegetable crops. In 2016, more than 640,000 acres were treated with chlorpyrifos in California alone.

The Obama administration announced in 2015 that it would ban chlorpyrifos after scientific studies produced by the E.P.A. showed the pesticide had
the potential to damage brain development in children. That ban had not yet come into force when, in 2017, Scott Pruitt, then the administrator of the E.P.A., reversed that decision, setting off a wave of legal challenges.

Those lawsuits culminated in April when a federal appeals court ordered the E.P.A. to issue a final ruling on whether to ban chlorpyrifos by this month.

Patti Goldman, a lawyer for Earthjustice, an environmental group that brought a legal challenge against the E.P.A.’s 2017 decision on behalf of farmworker organizations and others, criticized the decision. She said groups would sue again and ask the United States Court of Appeals for the Ninth Circuit to expedite the case.

“By allowing chlorpyrifos to stay in our fruits and vegetables, Trump’s E.P.A. is breaking the law and neglecting the overwhelming scientific evidence that this pesticide harms children’s brains,” Ms. Goldman said in a statement.

After 13 Years, Pioneering Autism Research Registry Shuts Down
By Courtney Perkes, Disability Scoop, July 15, 2019
A first-of-its-kind autism registry that collected research data from thousands of families across the country has closed after 13 years and the publication of hundreds of studies on everything from bullying to mood disorders.

The Interactive Autism Network, known as IAN, ended operations at the end of June after helping its primary funder, the Simons Foundation, launch a broader research initiative, said Dr. Paul Lipkin, director of IAN. The new registry, SPARK (Simons Foundation Powering Autism Research for Knowledge), started in 2016 with a goal of collecting genetic data from 50,000 families.

Parents of children with autism and adults on the spectrum had participated in IAN by responding to online surveys on topics such as medical history, social communication and therapies and updated the information they provided over time.

Additionally, IAN put willing families in touch with outside researchers seeking study participants.

Researchers described IAN as an invaluable resource and said SPARK will continue to facilitate
social and behavioral studies despite its emphasis on biological research.

“If there was no SPARK, losing IAN would have been a devastating loss to us,” said Dr. Antonio Hardan, a psychiatrist and autism researcher at Stanford University. “The fact that we have SPARK now, I think there is considerable overlap between the two.”

Lipkin said IAN was notable for allowing more than 26,000 families to participate in research by responding to surveys in their own homes without traveling to academic research centers.

Additionally, IAN was nimble enough to quickly produce new surveys and then publish research based on real-time concerns raised by parents, such as children wandering.

State News:
South Carolina - Mental Health Patient Suffocated by Hospital Staffers who Failed to Follow Training
By Avery G. Wilks, The Charlotte Observer, July 14, 2019
A state Department of Mental Health patient suffocated to death earlier this year at the bottom of a dogpile of agency employees who failed to follow the department’s training on physically restraining patients.

At least three of the employees involved in the death of 35-year-old William Avant had not been trained properly, according to an ongoing probe by state health regulators reviewed by The State as part of the newspaper’s weeks-long investigation into Avant’s death.

Avant, a Georgetown, S.C., native who had been in Mental Health’s inpatient care for more a dozen years, was killed on Jan. 22 when Mental Health staffers improperly pinned him face down on a Columbia hospital floor and lay atop his back for four minutes, preventing his diaphragm from expanding to deliver oxygen to vital organs.
Hospital staffers failed to check Avant’s breathing as he died beneath them, records show.
Their actions were explicitly prohibited — in red, all-capital letters — in the department’s training manual, raising questions about the agency’s management of employees, including training, and how well Mental Health cares for its 100,000 patients, including 1,500 inpatients who are some of the state’s most vulnerable residents.

Richland County Coroner Gary Watts ruled Avant’s death a homicide, noting that the hospital employees’ actions directly caused Avant’s death, which has not been reported previously.

But the State Law Enforcement Division declined to press criminal charges at the end of its own investigation.

Maryland - Service Provider Sued Over Alleged ‘Dickensian’ Conditions
By Talia Richman, The Baltimore Sun, via Disability Scoop, July 16, 2019

A residential and educational facility for students with disabilities operated under “Dickensian” conditions, failing to provide children with required medication or appropriate supervision and attempting to cover up assaults, according to a lawsuit filed this month by the Maryland Attorney General’s office.AdvoServ Inc. ran a program for people and students with disabilities in Delaware.
Dozens of Maryland children with cognitive
disabilities and mental illnesses were sent to their facilities for treatment and education after the state determined their needs couldn’t be met at home or in their local schools.

But even though the state paid AdvoServ more than $230,000 a year to care for each child, the lawsuit alleges their facilities failed to “provide even minimally adequate care to the children under their protection.”

“Although presenting themselves as a modern, progressive facility able to provide behavioral, medical, and educational services to this special-needs population, the reality was more Dickensian,” the complaint states.

Maryland ended its contract with AdvoServ in 2016. The state planned to sever ties with the company by October of that year but still hadn’t removed the 31 Maryland children in their care when a 15-year-old girl died at the Bear, Del., facility that fall.

The company — whose facilities across the country have a long and troubled history — has since changed its name to Bellwether Behavioral Trade. Representatives did not immediately return calls seeking comment.

Chilling accounts are revealed throughout the 41-page complaint.

Maine - DHHS to Cognitively Impaired Harpswell Man: Relocate to Florida
Wait list swells as disabled adults seek group homes
By Joe Lawlor, Portland Press Herald, July 15, 2019
Hank Homer’s family for years has fought for the 46-year-old to live in Maine, scrambling for suitable housing at a time when group homes for adults with intellectual disabilities like Hank are in critically short supply. 

He nearly was shipped to facilities in Illinois or Virginia in 2015. This year, the Maine Department of Health and Human Services wanted to send him to Florida, after he lost his placement at a group home in Portland where he was having trouble getting along with the staff, family members said. 
“We said no, absolutely not,” said Denise Beavers, Homer’s sister, who advocates for him with Maine DHHS. 

Homer underwent brain surgery for a head injury he suffered as a child and now has a low IQ. He lives – for now – in a small yellow house in rural Monmouth, surrounded by fields and towering pine trees. His social worker cooks him meals and helps him with daily living tasks. The home, operated by Maine DHHS, is supposed to be a temporary crisis placement for people who must live in supported housing but can’t get into community-based group homes because of the housing shortage. 
Homer’s family said they don’t know how long he will live in the temporary crisis home – with the housing shortage, it could be several months. 

The family’s struggle reflects the critical shortage in group home housing for adults with intellectual disabilities, heightened by a lack of workers. The waiting list for housing for adults with intellectual disabilities in a certain part of the Medicaid program – Section 21 – has more than 1,500 people on it, and it can take years to get off the list. 

Homer, of Harpswell, has lived in institutions in New Hampshire, Tennessee and Virginia, but returned to Maine in 2015 when Lakeview Neurorehabilitation Center in Effingham, New Hampshire, closed while under scrutiny for reports of abuse and neglect.

Massachusetts - DDS License Staff Didn’t Appear to Notice Problems Mounting for Resident at Group Home
By Dave Kassel, The COFAR Blog, July 15, 2019

Timothy Cheeks is a 41-year-old man with Down syndrome who lives in East Longmeadow in a group home managed by the Center for Human Development (CHD), a corporate provider to the Department of Developmental Services.

Since 2017, Tim’s foster mother and co-guardian, Mary Phaneuf, has dealt with a string of problems with Tim’s care at the residence including:

  • A lack of proper medical care for Tim, including no documented visits to a primary care physician or dentist for seven years;
  • No documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect;
  • A failure to treat Tim for two years for back pain and a degenerative back problem, and to fill a prescription for pain medication for him;
  • A failure to ensure that Tim was receiving Social Security benefits for at least two years;
  • The unexplained removal of Tim from his day program run by the Work Opportunity Center (WOC) in Agawam without informing Mary of that fact; and
  • The diversion of food stamp benefits for Tim and at least one other resident of a CHD group home

Despite the seriousness of those issues, an online June 2017 DDS licensure inspection report for CHD on the department’s website does not mention those or similar problems in the agency’s group homes. The licensure report recommended deferring a new two-year license for CHD, but for generally worded reasons such as “medication treatments plans must address all required elements,” and “individuals’ funds and expenditures must be fully tracked.”

There was no indication on the DDS provider licensure report website whether a recommended follow-up review of the provider occurred or what the result was.

Medicaid Managed Care / Medicaid Cuts:
Florida - People with Disabilities Worry about Florida’s Cuts to Essential Services
By Elizabeth Koh, The Tampa Bay Times, July 18, 2019
Lawmakers ordered Florida disability administrators this year to restructure its community-based Medicaid program that delivers healthcare to tens of thousands of people with disabilities.But as two state agencies begin to devise the new structure of the program, clients, caregivers and service providers worry that the coming changes to lower the agency’s budget might cut critical services to people who need them.

In a meeting Wednesday to solicit public comments on the upcoming changes, dozens of people urged the agencies — the Agency for Persons with Disabilities and the Agency for Health Care Administration — to improve training, cut down on paperwork and waste, and keep services available for people with developmental disabilities as they determine how to restructure the program.

They also outlined a host of concerns, chief among them that shifting healthcare delivery to a system of managed care, where private contractors manage patients’ care and control what clients of the program are able to get, including services like in-home nursing care, speech and physical therapy and behavioral support to manage difficult behaviors.
Almost all of the state’s Medicaid services are now run through a statewide managed care program, though advocates say it is ill-suited for people with long-term conditions. While cuts to such programs would save taxpayer dollars, advocates for people with disabilities worry people dependent on the program will suffer or be forced to move into institutions. (see note below)

Barbara Braun, who runs a case management agency in the Suncoast Region, told state officials at the meeting that the program needed more resources, not less: “We need funding — y’all need to fund this program. Enough of this [BS].”

The Agency for Persons with Disabilities’ Medicaid services, run through what’s known as “iBudget,” operates under a “waiver” of federal rules that allows the state to be more flexible in how it delivers and spends on services. iBudget’s structure is meant to allow clients to live as independently as possible in their homes or communities, and gives individuals budgets they can use on services.

Note: The phrase " People will be forced to move into institutions" is a falsehood, an idle threat, a lie that would be comical if it were not so cruel.
People who seek admission to ICFs are prevented from accessing these facilities by the very people who frequently resort to using this phrase.
Alaska - Providers Await Impacts of Medicaid Cuts; Dental Services Axed
By Elizabeth Earl, Alaska Journal of Commerce, July 17, 2019
Gov. Michael J. Dunleavy’s cuts to the state Medicaid budget have providers holding their breaths as they wait to see the impacts.

Dunleavy vetoed about $58 million of general fund support for Medicaid programs from the Legislature’s enacted budget on June 28. The Legislature, divided between special sessions in Wasilla and Juneau, failed to override the vetoes, and so the cut stands for now.

Because Medicaid is a federally matched program, the dollars the state cuts lead to forfeited federal dollars as well. The $58 million general fund cut is compounded by those federal dollars, meaning at least $77 million less in total.

Though there’s no immediate impact for hospitals, but one of their concerns is for the end of the next fiscal year, when money starts running out to reimburse providers. The state suspended payments for about two weeks in June due to a Medicaid funding shortfall, forcing hospitals to wait until the turnover of the fiscal year to be paid.

While hospitals are again being paid, there’s the possibility that if funding is cut, the suspension could go on for longer next year, said Jeannie Monk, senior vice president of the Alaska State Hospital and Nursing Home Association.
One Medicaid service would be eliminated entirely if the vetoes stand: adult preventive dental medical coverage. Up until this year, Medicaid recipients were able to access preventive dental services such as cleanings and X-rays. Dunleavy vetoed $27 million supporting the program, which would stop the preventive program, though emergency situations would still be covered, according to the Alaska Department of Health and Social Services.

Providers say it’s more than a luxury. During the regular session, legislators and providers argued for the retention of the program, saying it was an essential part of preventative health and provided opportunities for people to encounter the medical system who might not have otherwise gone in for a doctor’s appointment.

Without the benefit, there’s a concern that those patients will just wind up in the emergency rooms with abscesses and acute dental conditions, Monk said.

VOR Bill Watch:

Earlier this week, the House passed the "Raise The Wage Act" and sent it to the Senate. This bill contains provisions that would eliminate 14(c) wage certificates and shutter some work centers that provide employment opportunities for people with intellectual disabilities who may never be able to participate in competitive integrated employment.


Last month, the House combined the bill to reauthorize Money Follows the Person (MFP) with several other bills to create a new bill, H.R. 3253, the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 . A few days after introducing the bill, Congressswoman Debbie Dingell (D-MI) asked for a suspension of House rules, and called for a vote on the new bill without deliberation and without providing an opportunity for public comment. The bill passed the House and headed for the Senate. This bill would authorize $1.992 Billion to MFP for four years.

To date, the bill has not been officially introduced in the Senate. There is no bill number. It has been assigned to no committee.

The last time this happened, the bill suddenly appeared and passed in the Senate by voice vote. VOR is concerned that this will again be the case. We are in the process of reaching out to members of the Senate to request an audit of the Money Follows the Person Demonstration Program before allowing any re-authorization of funds. VOR contends that MFP has been used to close down ICFs, move people out against their will, and weaken the ICF system of care for our most vulnerable citizens.


Click on blue link to view information about the bill


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. 3253 & S ??? - Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019 - This bill would authorize nearly two billion dollars over four years for the Money Follows the Person Demonstration Program.

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. Both issues deserve clean, stand-alone bills.
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