October 4, 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
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National News:
Adults with Intellectual and Developmental Disabilities 'Invisible' in National Data
By The Ohio State University, Medical XPress, October 4, 2019
People with intellectual and developmental disabilities (IDD) are often "invisible" in national population surveys that collect only the minimum data for disability, according to researchers at The Ohio State University College of Medicine who are looking into the lack of data.

"Inadequate health surveillance of people with intellectual and developmental disabilities hampers our understanding of their health status, health determinants and health needs," said Susan M. Havercamp, associate professor in the Department of Psychiatry and Behavioral Health at Ohio State's College of Medicine.

"In 2002, the U.S. Surgeon General's report, Closing the Gap, highlighted the need for better data on people with intellectual and developmental disabilities. This concern persists today," said Dr. K. Craig Kent, dean of the College of Medicine.

"These researchers explain how public health and policy planning for adults with IDD is imperiled by the lack of ongoing national surveillance data on the prevalence and health status of these individuals, and why this matters."
The Affordable Care Act of 2010 required establishing minimum data collection standards for disability status as well as for race, ethnicity, sex and primary language in all national population health surveys. This requirement ensures that these marginalized groups are counted and reported in national data; however, the minimum standards don't allow for ready identification of persons with IDD within the disability group.

Recent changes to two national surveillance systems—National Health Interview Survey and the Survey on Income and Program Participation—eliminated questions that have been used to identify adults with IDD.

"Without specific questions that allow for ready identification of respondents with IDD, this population becomes invisible in the data," said Havercamp.

President Signs Autism Renewal
By Michelle Diament< Disability Scoop, October 2, 2019

With little time to spare, President Donald Trump approved an extension of the nation’s primary autism law, authorizing $1.8 billion in spending on the developmental disorder in the coming years.

Trump signed the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act, late Monday. Without action, the prior incarnation of the legislation was set to expire at the end of September.

The act, which originated in 2006, allocates funding for research, prevalence tracking, screening, professional training and other government activities related to autism. Rep. Chris Smith, R-N.J., who authored the legislation, hailed its passage.

The “comprehensive new law … will fund critical biomedical autism research as well as the development of best practices to enhance the lives of persons with autism,” he said. “We need answers now and treatment options and interventions that work.”

Autism Insurance Coverage Now Required In All 50 States
By Blythe Bernhard, Disability Scoop, October 1, 2019

After officials in the last holdout state enacted a new rule, all 50 states and Washington, D.C. have mandates that require some level of insurance coverage for the treatment of autism.

The Tennessee Department of Commerce and Insurance now requires all individual, small and large group insurance plans issued in the state to cover treatment for autism that is “medically necessary and appropriate and is not experimental,” including applied behavior analysis, or ABA, at the same level as any other medical condition.

Before the new rule was issued in August, insurance companies in the state could define their own mental health benefits, but now they must cover the treatment of autism and any other condition as listed in the Diagnostic and Statistical Manual of Mental Disorders.

NIH Funding For Down Syndrome Research Balloons
By Shaun Heasley, Disability Scoop, September 30, 2019
With millions of new dollars for research on Down syndrome, federal officials have effectively doubled their investment in understanding the chromosomal disorder in the last year alone.

The National Institutes of Health said it has committed to some $35 million in additional grants for the 2019 fiscal year, bringing the agency’s total spend on Down syndrome research to $77 million.
As of this time last year, NIH funding for Down syndrome stood at $36.8 million.

Pennsylvania ICF Closure Updates:
Please support the Residents, Families, and Caregivers of The Polk and White Haven Centers!

If you haven't already signed this petition in support of keeping these two centers open, please do so now. Families and caregivers, county officials and state legislators were denied a voice in the Governor's closed door decision to close the centers.

Only the ARC had the ear of Teresa Miller and the Pennsylvania Department of Human Services.

It's time to stand up to the closure and support state-operated ICFs

Pennsylvania House of Representatives Seeks Moratorium On Closing of White Haven and Polk State Centers

Representatives Gerald J. Mullery, Tarah Toohil, R. Lee James are seeking support from their colleagues in the Pennsylvania House of Representatives to call for a moratorium on closing the Polk and White Haven State Centers.

State News:
Florida - Court Allows DOJ Lawsuit Over ‘Fragile’ Kids
By The News Service Of Florida, Fla Pol Com, September 19, 2019
Note: VOR has been following developments in this case since 2017, as the ruling by Judge Wm. Zloch determined that DOJ had no standing in class action lawsuits citing Title II of the ADA.

In a long-running dispute stemming from concerns about “medically fragile” children being placed in nursing homes, a federal appeals court this week backed the U.S. Department of Justice’s authority to pursue a lawsuit against Florida over alleged violations of the Americans with Disabilities Act.

A three-judge panel of the 11th U.S. Circuit Court of Appeals, in a 2-1 decision Tuesday, overturned a lower-court ruling that said the Department of Justice did not have legal standing in the case.

The issue of care for medically fragile children, who have severe health conditions, drew attention in 2012 after a Department of Justice investigation found Florida was unnecessarily institutionalizing children with disabilities in nursing homes. The department also said the state’s Medicaid program placed other children at risk of institutionalization.

The Florida Agency for Health Care Administration, which runs much of the state’s Medicaid program, vehemently disputed the allegations.

Attorneys for a group of children filed a federal lawsuit alleging, in part, that the state was violating the Americans with Disabilities Act by failing to provide services that would allow children with severe medical problems to stay in their homes and communities. The Department of Justice tried to negotiate an agreement with the state but wound up filing a lawsuit in July 2013, Wednesday’s ruling said.
In addition to finding that the Department of Justice did not have standing, a lower-court judge in 2017 ruled against the group of plaintiffs because of changes Florida made in the Medicaid program. Senior U.S. District Judge William Zloch approved recommendations from a magistrate who wrote that the plaintiffs could no longer show they were in danger of being denied medically necessary private-duty nursing services — a key issue in the case — or that they were at risk of institutionalization.

That ruling against the plaintiffs was upheld in April by the same panel of the 11th U.S. Circuit Court of Appeals that issued Tuesday’s decision. But the question of whether the Department of Justice had the legal authority to sue the state over compliance with part of the Americans with Disabilities Act remained unresolved.

The panel’s majority issued a 58-page ruling Tuesday that reversed the lower-court decision and backed the Department of Justice’s ability to file lawsuits under what is known as Title II of the Americans with Disabilities Act. The majority pointed to other laws that had been incorporated into that part of the Americans with Disabilities Act and that allow the Department of Justice to pursue lawsuits.

Michigan - Whitmer's Veto Pen Hit her 'Ally' at Autism Alliance of Michigan
By Chad Livengood, Crain's Detroit Business, October 1, 2019
At the Autism Alliance of Michigan's annual gala in April, Gov. Gretchen Whitmer praised the Bingham Farms-based organization for its efforts helping adults with the sensory, communication and social skills disorder obtain gainful employment.

"It's made a difference in businesses and the lives of families across this state," Whitmer said. "… I want you to know, I recognize how important this is. And I am going to be an ally and a great partner as we continue to push forward and make Michigan a great state to be home … even if you've got a hurdle in front of you."

On Sept. 8, the governor signed a proclamation recognizing the work of direct support professionals who work with individuals on the autism spectrum.

Then on Monday, Whitmer line-item vetoed $1.47 million in grants for autism programs, including a $1.025 million appropriation that funds one-fourth of the Autism Alliance of Michigan's services to adults and children on the autism spectrum who need help navigating medical, educational and insurance issues.
Autism advocates expressed shock Tuesday that their navigator program had been defunded by the stroke of the Democratic governor's veto pen as part of $947 million in spending she axed through 147 line-item vetoes in a budgetary standoff with the Republican-controlled Legislature.

"It's definitely a bit of a slap in the face. But we try not to look at it that way," said Colleen Allen, president and CEO of the Autism Alliance for Michigan. "I just don't know why she would use people with autism as leverage in a budget fight."

Elimination of the grant may lead to the program's demise, Allen said.

"This essentially disconnects families from their lifeline to support services and consultation," Allen said. "This is a complex disorder and families often do not know where to go."

Missouri Looking To Fix 'Disastrous' Pay System For Developmentally Disabled Care
By Aviva Okeson-Haberman, KCUR/All Things Considered, October 2, 2019
Missouri's methods of reimbursing community providers who care for people with developmental disabilities are complex, confusing and conflict with federal Medicaid rules. That’s because providers are reimbursed at vastly different rates for the same level of care.

It’s a situation that’s also leading to low pay for the providers’ workers and exacerbating the state’s already high turnover. 

The Centers for Medicare and Medicaid Services put the state on a five-year corrective action plan earlier this year. So to address the issue, the Division of Developmental Disabilities will request $58.1 million from Missouri lawmakers next year on top of the $20 million extra it received this year. Many providers say it’s long overdue.

“It's really a disastrous and embarrassing system right now,” according to Dr. Rez Farid. He’s a former board president at ACT, a Columbia, Missouri-based provider for people with developmental disabilities.

About 5,300 developmentally disabled people in Missouri are a part of individualized supported living services (ISL), which provides support for people to live in a home or an apartment for them and up to three other people.

When ISL services started about three decades ago, each provider would negotiate a rate with the state.
“So if you joined our system in 1992, you got your rate set by what the provider said it was going to cost you in 1992,” Missouri Division of Developmental Disabilities Director Val Huhn said.
These rates typically didn’t keep up with inflation, creating a disparity. For example, a provider that started in 2010 would have a higher reimbursement rate than an older provider.

In 2013, the division started reimbursing agencies based on a 1-7 rank for the level of support someone needed. Someone with a score of one might be fairly independent and just need reminders to take medications or help cooking, Huhn said, while someone with a score of seven might run away frequently or have aggressive behaviors.

This way of reimbursing agencies applied to all new people entering the system, but the state didn’t have the roughly $80 million needed to adjust rates for the people already in the system.
 A 2018 analysis by the Kansas City provider Center for Developmentally Disabled showed 325 different rates across the state for people with a score of one.

Florida - Limited Cuts Recommended for Medicaid Program for People with Disabilities
By Elizabeth Koh, The Miami Herald, September 30, 2019
State health officials recommended limited cuts to a Medicaid program for people with disabilities Monday, after months of deliberating on potential changes that could affect more than 34,500 clients who depend on the program for services.

The recommended cuts were much lower than advocates for clients with developmental disabilities had feared. But the decision will be up to the Legislature, which ordered a redesign of the program and will consider the recommendations in its 2020 session.

The recommendations include some caps on services like companion care, supported employment and adult day training, which could affect about 1,500 Floridians. They also suggest moving some costs to the state’s main healthcare agency to lower costs for the state’s Agency for Persons with Disabilities.

Despite draft reports that suggested administrators might consider implementing managed care or eliminating services to lower the budget, neither of those suggestions was recommended in the agencies’ plan, easing some advocates’ fears.
“I think they did listen to what we had to say,” said Ven Sequenzia Jr., who had argued against managed care with hundreds of other advocates at a public comment meeting in July. Noting that the 105-page plan would still need more review, he said he was “cautiously optimistic.”

But the proposed caps on some services had others concerned that the recommended changes could curtail the access some people with disabilities have to their communities.
Some clients depend heavily on programs like supported employment to work outside their homes, said advocate Karen Clay.

“It’s not even about the money,” she said. “It’s about the fact they can go out into the community and do that and be wage-earning, tax-paying citizens.”

More than 34,500 people with developmental disabilities — such as mental disabilities, cerebral palsy, autism and Down syndrome — rely on the program, with 21,900 others on the waiting list.

By Michael Bernick, Fox and Hounds, October 4, 2019
The Sonoma Developmental Center (pictured), which once housed 3200 children and adults with disabilities, closed at the end of 2018, among the last in the state hospital system. Over the past fifty years, a community-based system has gradually replaced the state hospitals, promising fuller inclusion. 

The California Department of Developmental Services (DDS) oversees a vast network of community-based services for over 333,000 youth and adults with developmental disabilities. Other states have similar sprawling networks—nearly all rooted in disability inclusion theories by confident reformers of the 1960s and early 1970s.

Today, these networks are being buffeted on all sides: soaring caseload numbers and budgets; frustration by service providers with high client-to-staff rations and rapid turnover of personnel; and on going fear of clients and family members that options will be reduced at any time. “
The disability services system is at a crossroads”, explains Rick Rollens, an expert in disability services and costs. Indeed, this fall task forces are being launched in several states, including California, to identify how disability services might be delivered differently in the future. 

The closing of the large state institutions for adults with developmental differences was envisioned to usher in a new era of inclusion and community services, and one that would be financially sustainable. What happened and where does the system go from here?

New York - $6 Million for Disabled Adults Who Were Punched and Spat At
By Benjamin Weiser, the New York Times, September 30, 2019
It was five years ago in a Bronx group home for developmentally disabled adults that reports surfaced of workers physically abusing and neglecting residents. Some staff members hit and kicked them, gave them cold showers, spit in their faces and left some with black eyes and other bruises.

When the sister of one resident called the facility, a worker answered, “Good morning, Bronx Zoo,” a civil rights lawsuit alleged.

Now New York State has agreed to pay $6 million to settle that lawsuit, which had been brought on behalf of three residents, all profoundly disabled women, ages 39 to 52, who had been abused at the facility, according to settlement papers filed on Monday in Federal District Court in Manhattan.

In addition, the state spent almost as much defending the lawsuit, paying $5.7 million thus far to more than a dozen private law firms retained to represent the state employees named as defendants, according to the state comptroller’s office.
As part of the settlement, the State Office for People With Developmental Disabilities also agreed to take the extraordinary step of surrendering control of the facility to a private nonprofit agency that will oversee the residents’ care using its own employees — a provision the plaintiffs insisted upon, their lead lawyer, Ilann M. Maazel, said.

“We lost all faith that the agency can run this house effectively,” Mr. Maazel said. “The most important thing the families want is for their loved ones to be safe, and they had no confidence that the state would keep them safe.”

California - No Charges After Man With Intellectual Disability Killed At Costco
By Richard Winton, Los Angeles Times via Disability Scoop, September 30, 2019

The parents of a man fatally shot in the back by an off-duty Los Angeles Police Department officer inside a Costco warehouse store, who themselves were wounded by the gunfire, expressed disgust at the Riverside County district attorney’s decision not to charge the cop, saying they were unarmed and moving a good distance away.

Paola and Russell French questioned what evidence Riverside County District Attorney Mike Hestrin presented to a grand jury this month that led it to decide not to file any charges against Los Angeles Police Officer Salvador Sanchez. The couple said they hoped the California attorney general or federal prosecutors will investigate the June 14 killing of their 32-year-old son, Kenneth French, inside the warehouse store in Corona.

“Salvador Sanchez was clearly wrong, as he was not in imminent danger to fire 10 shots at an entire unarmed family, and that was clear, even in the grainy, poor-quality video,” said Paola French, who was hit by Sanchez’s first shot. Paola and Russell French, along with their other son, Kevin French, said the video shows they were already a considerable distance from the officer when he began shooting and could never be considered any kind of “reasonable threat.”

Overcome with emotion, Paola French said, “We are deeply disappointed in the decision.”

Washington - Seattle Father Offers Facts, Not Figures
By Jack ‘Miles’ Ventimiglia, Richmond News, October 2, 2019
Leaders at sheltered workshops in Missouri, including Richmond, are discussing what might happen if Congress requires them to pay disabled workers the minimum wage.

A father in Seattle, Washington, attorney Buz Humphrey, knows for a fact what will happen – workshops will close.

Humphrey knows because that is what happened in Seattle, where many disabled people lost employment at workshops. His son, Matt, 44, worked for about 22 years at a workshop, Northwest Center.

“He was paid on a piecework basis,” Humphrey said. “Matt would be timed in relationship to what a fully capable worker would do on a particular task and he’d be paid based upon his own productivity. So, it worked out to pennies an hour. … He was working maybe 25 hours a week. He was making maybe 25 bucks a month.”
The work paid little, but the amount seemed fair in terms of Matt’s ability, Humphrey said. Now, Matt has neither that income nor intangibles of greater value – “benefits.”

“He doesn’t have the social interaction, he doesn’t get out of the house as much, he doesn’t take whatever pride he must have experienced in cleaning TV remotes or packaging Christmas presents for various businesses, so I’ve got to think there’s been a diminution in the quality of his life, but I can’t swear to it,” Humphrey said.

VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 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.


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. On September 19, 2019 the Senate Passed the bill and sent it to the president to sign into law.

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).

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