August 17, 2018
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
Incentives Floated For Treating People With Developmental Disabilities
By Courtney Perkes, Disability Scoop, August 13, 2018
Federal lawmakers are looking to make doctors and other health care services far more available for people with intellectual and developmental disabilities.

A bipartisan bill introduced late last month in Washington would for the first time designate people with intellectual and developmental disabilities as a “medically underserved population” and qualify this group for additional resources under more than two dozen federal programs.

Health care experts say passage of the legislation would increase access to medical and dental care, reduce health disparities and improve specialized training for medical providers.

It’s exciting to see it starting to get some traction,” Dr. Stephen Sulkes, a developmental-behavioral pediatrician and president of the American Academy of Developmental Medicine and Dentistry, said of the proposal. “This is going to encourage health care providers to pay attention
to this population and learn what it takes to provide appropriate care, to be good listeners, to be understanding and responsive in ways that will enhance care.”

The so-called MUP designation would allow doctors to receive higher payments from Medicare and Medicaid for seeing patients with intellectual and developmental disabilities. It would also offer repayment of student loans for health professionals who serve this population and provide funding for research on topics affecting this group, according to U.S. Reps. Seth Moulton, D-Mass., and Gregg Harper, R-Miss., who sponsored the bill known as the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population, or HEADs Up, Act of 2018.

Pompeo Ignores Plea From Diplomats With Children With Special Needs
By Robbie Gramer, FP - Foreign Policy, August 14, 2018
State Department diplomats who have children with disabilities and mental health issues say U.S. Secretary of State Mike Pompeo has been ignoring their pleas for help in a struggle they’ve been waging for more than a year now against the erosion of their medical and education benefits.

A group of foreign service officers representing some 1,400 families sent Pompeo a letter in May saying the State Department had slashed benefit options and funding for children with special needs.

In the letter, obtained recently by Foreign Policy, the officials warned that the State Department Bureau of Medical Services was taking “deleterious actions” to restrict funding access for benefits the department is required to offer under U.S. disability law.

Now, nearly three months later, the secretary of state has yet to respond to the letter.

The group said the cuts have prevented skilled diplomats from taking up important posts or forced them to hide their children’s medical problems.
“Increasingly, Foreign Service employees are choosing to conceal issues related to their
children’s educational and health needs rather than suffer career and family repercussions,” the letter said.

As U.S. diplomats travel to assignments around the world, the State Department’s medical bureau ensures they and their family members are healthy enough to live in the assigned country. In the case of some 1,400 families with children with special needs, the bureau is also in charge of ensuring adequate care is available in the assigned country.

But an investigation by FP in April found that, starting in 2015, the medical office has been arbitrarily cutting funding for children with autism, attention deficit hyperactivity disorder (ADHD), or other special needs or mental health issues. It has also revoked the medical clearances for some children that are required for foreign posting, forcing some diplomats out of their jobs because of their children’s special needs.

Blog - Regulating Community Services for People with Disabilities: a Promise Fulfilled or a Barrier to Appropriate Services?
By Jill Barker, The DD News Blog, August 12, 2018

In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.

Many IDD advocacy groups, most notably those receiving federal funding under the federal Developmental Disabilities Act, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (IDD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities…” [ emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. 

To what extent is implementation of the Settings Rule improving the lives of people with IDD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars? Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with IDD and their families who are losing services and programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. 

Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else.

Opinion - Eliminating Subminimum Wage Waivers will Harm Hundreds of Thousands of People with Disabilities
By David Ordan, The Hill, August 10, 2018

The road to hell is paved with good intentions. That is perhaps the most generous statement that can be said about efforts to eliminate subminimum wage waivers that benefit — yes benefit — hundreds of thousands of people with disabilities across the U.S.

The legal precedent for paying disabled workers less than minimum wage dates back to the 1938 Fair Labors and Standards Act. Under a provision known as 14(c), employers were permitted to pay less than minimum wage to disabled workers — in order to help them gain entry to the workforce.

As such, it is a myth to say that paying subminimum wages to workers with disabilities leaves them vulnerable to exploitation and keeps them out of the general employment market, as claimed by Sen. Elizabeth Warren (D-Mass.) at a Senate Health Committee Hearing in Oct. 2017. She continues to argue this point to this day.
Furthermore, it is not true that employers across the country are using this waiver to acquire cheap labor instead of paying minimum wage for the same work and performance as able-bodied workers.

The truth is that the vast majority of “employers” making use of this waiver are in fact, sheltered workshops, rather than private employers. Based on April, 2015 data from Wages and Hours Division of the Department of Labor, 2,820 entities in the United States hold Section 14(c) subminimum wage certificates. Almost all — 89 percent— are sheltered workshops.

In 2014, 75 percent of individuals with I/DD receiving day or employment services through a state I/DD system were attending a sheltered or facility-based environment.

This means that efforts to remove 14 (c) subminimum wage certificates are essentially targeting one group, and one group alone: people with disabilities who choose to attend sheltered workshops. Few if any employers in the wider community are making use of this waiver.

Several states have actually closed sheltered workshops, and the result is not pretty. Rather than increasing employment, the exact opposite has occurred.

To cite one example, Maine ordered a phase-out of disabled workshops starting in 2008. Two-thirds of those onetime employees were unable to find other paid positions, according to a June 2015 study by George Washington University, and enrollment in daycare and other programs soared to 3,178, from 550.

The study found that people with intellectual disabilities in Maine show an average of 12 hours worked per week in 2011, the lowest in the nation. According to the 2012 American Community Survey approximately 34 percent of people with disabilities in Maine were working, compared with nearly 80 percent of people without disabilities.

Furthermore, efforts to create integrated employment in that state are going in the opposite direction, as the percentage of people served in integrated employment settings decreased from 31 percent in 2001 to 23 percent in 2010.

In Vermont, the percentage of working age people in supported employment dropped from 39 percent in 2007 to 36 percent in 2010. The average hours worked per week had dropped in 2010 to 9, down from 15 hours in 1999.

There is little evidence to suggest that other states will fare any better. In the end, eliminating 14c will do irreparable harm to hundreds of thousands of people with disabilities across the country.

CDC: 1 in 4 Adults have a Disability that Impacts Daily Life
By Allen Cone, UPI Health, August 16, 2018
One in four adults reported they have a disability that impacts major life activities with the most dominant one affecting mobility, according to a report issued Thursday by the Centers for Disease Control and Prevention.

In the CDC's Morbidity and Mortality Weekly Report, data were studied from the 2016 Behavioral Risk Factor Surveillance System. This is the first CDC report of the percentage of adults across six disability types: mobility, cognition, hearing, vision, independent living and self-care.

"At some point in their lives, most people will either have a disability or know someone who has one,"
Dr. Coleen Boyle, director of CDC's National Center on Birth Defects and Developmental Disabilities, said in a press release.

"Learning more about people with disabilities in the United States can help us better understand and meet their health needs."

Researchers find key protein linked to autism development

Researchers have identified a molecule that is part of defects in 200 genes correlated with autism.CPEB4, which regulates protein synthesis, is linked to about 200 genes and susceptibility to autism. The findings by researchers in Spain were published Wednesday in the journal Nature.

"Understanding the biological bases of autism may facilitate the design of future experimental treatments and diagnosis tools for this condition," the scientists concluded in their study.

Researchers in the past have been able to find correlations between defects in the expression and/or function of these genes and susceptibility
to autism. But the reasons for these defects in people with autism were unknown.

Last April, the Centers for Disease Control and Prevention reported the prevalence of autism in 1 in 59 children in tracking of 11 communities across the country.

First Human Trial of Zika Vaccine gets Underway
By Allen Cone, UPI Health, August 16, 2018
The first clinical trial of a Zika vaccine in humans has begun, the National Institute of Allergy and Infectious Diseases announced on Thursday.The vaccine for Zika, a disease mainly spread by mosquitoes, was developed by scientists at the NIAID, the agency announced.

NIAIA is sponsoring the trial among 28 healthy, non-pregnant adults ages 18 to 50 at the Johns Hopkins Bloomberg School of Public Health Center for Immunization Research in Baltimore, Md., and at the Vaccine Testing Center at the Larner College of Medicine at the University of Vermont in Burlington.
Twenty participants will receive the Zika vaccine and eight will get a placebo, according to ClinicalTrials,gov.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
State News
Pennsylvania - Somber Ceremony Marks Official Closing of Hamburg Center
By Jim Vasil, WFMZ-TV 69, August 3, 2018
Former employees of the Hamburg Center in Berks County gathered Friday for an emotional ceremony that marked the center's official closing. The institution in Windsor Township served the developmentally disabled for 58 years.

About 100 people attended a closing ceremony, mostly former employees of the center. At the end of the ceremony, a Hamburg State Center flag was lowered for the final time.

Officials said 80 patients and around 350 employees have now moved on. Officials said the former employees have found other jobs. Some, like Debbie Herman and Donna Donahue, have retired.

"It's a very sad day," said Herman. "It's nice that they had this ceremony for us to find some

"My last couple months of working here, I went to visit folks in the community, and I tell you, it's a wonderful feeling to see they are thriving and doing well," said Donahue.

Herman has a message for the residents she served for three decades:

"I hope they are doing well. We didn't forget you. We remember. You'll always be in our thoughts," she said.

Montana - Montana Lacks Money to Treat its Most Vulnerable Residents
By Jan Anderson, Boulder Monitor, August 9, 2018
Fran Sadowski has seen firsthand the dangers of limited options.

During a study on services for "dually diagnosed" individuals with both developmental disabilities and mental illness, the CEO of Missoula Developmental Services Corporation shared the story of a 28-year-old client.

The client was living in a community-based facility when he became seriously self-injurious. Because the state legislature had ordered the closure of the Montana Developmental Center in Boulder, there was no place for him to go. The state's only public residential facility – and the only Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IID), public or private, in Montana – the MDC was the only place where a dually diagnosed individual could be placed by court order in a crisis.

Left with no alternative to hospitalizing him in a facility never intended for individuals like him, Sadowski could do nothing as he suffered two major seizures and went into a paralytic state.

Serving at the time on the state's advisory council to recommend steps for completing the MDC
closure, Sadowski choked back tears as she told the group about the situation. She advocated for a state crisis facility where the courts could place someone in severe need.

At the same time, Sadowski recognized the need for more money going into community-based services for individuals with developmental disabilities and/or mental illness. Through nearly a year and a half of meetings, Sadowski consistently maintained there was simply not enough money in the funding pot. Wages for direct care staff in private community group homes, driven by federal dollars, were too low to keep staff, she said.

And she recognized that the community-based services and the MDC were all drawing from the same – too small – pot of money. But doing away with the MDC, which some had argued to the legislature would free up funds for community providers, was not the answer, either, she said
Believing "let's close MDC and everything's going to be okay" is not true, she said, urging the council to take a broader view of "what does the system need in the community to be successful."

Montana - Funding Restored, But Providers Say Damage Has Been Done
By Adrian Horton, Daily Inter Lake, August 9, 2018

The latest twists in public funding for mental health care in Montana have left providers in the Flathead and across the state cautiously optimistic, yet adamant that more must be done to repair community health solutions following last year’s devastating budget cuts.

In the latest response to the cuts, Gov. Steve Bullock announced a restoration of around $30 million to the Department of Public Health and Human Services by Sept. 1. But a lawsuit filed last week on behalf of disability advocates seeks to put a stay on slashed rates and restore funding sooner.

State mental health funding has long been a roller coaster for providers, with ups and downs depending on the state’s financial stability. According to a report by the Bozeman Daily Chronicle, mental health spending per resident increased in the decade up until 2015. But inaccurate forecasting and a severe fire season last year left the state far short of its projected budget. In order to address the shortfall, a special legislative session in late 2017 passed a series of cuts to services for mentally ill or disabled residents.

Since the cuts went into effect earlier this year, mental health providers have adapted with layoffs, closures and overworking personnel. Many families and providers were particularly outraged by the cuts to case management services, which nearly halved the funding for those who work consistently with
clients — helping them find jobs, pay rent, or make appointments — to prevent mental health crises.

The path to stabilize the situation is growing clearer, but many worry that the damage far exceeds a quick fix.

“They dismantled a system that took decades to build — you can’t rebuild those overnight,” said Sheila Smith, director of the Western Montana Mental Health Center in Kalispell.

Potomac Center to Receive Patients from Carroll County Psychiatric Hospital
By Dan Dearth, Herald-Mail Media, August 15, 2018
The Maryland Department of Health plans to transfer patients from a psychiatric hospital in Carroll County, Md., to the Potomac Center in Hagerstown, a state residential facility for adults with developmental disabilities.

Brittany Fowler, a state health department spokeswoman, confirmed in an email that the Secure Evaluation and Therapeutic Treatment (SETT) unit will move from Springfield Hospital Center in Sykesville to the Potomac Center on Marshall Street around mid-September.

She said employees, residents, families and advocates have been informed about the move.
Hagerstown Police Chief Paul Kifer, who heard about the move through a rumor, said his initial concern was that the patients coming in might be violent or criminally insane.

The (Baltimore) Sun has reported that on Thanksgiving Day in 2016, patients at Springfield rioted and took over a housing unit there.
"Patients threw chairs, knocked over file cabinets and tried to break into the staff's Plexiglas-enclosed refuge," the Sun story said. "The patients poured cooking oil over the floors, making them slippery. One patient tried to crawl into the office through the suspended ceiling."
The story said a Maryland State Police SWAT team entered the unit and freed nine patient care and security workers who locked themselves in three offices.

Asked if any incoming patients would be dangerous and whether the Potomac Center is equipped to handle patients with violent backgrounds, Fowler responded in an email:

"The Potomac Center and the SETT, which both have previously served and will continue to serve residents who have been involved in the criminal justice system, will continue to have police officer staff on the campus 24/7 and as part of the therapeutic interdisciplinary team. While there are police officers and security officers on site, the Potomac Center is responsible for providing needed services to people who have intellectual and developmental disabilities while working to integrate them into less restrictive settings in the community."

Missouri - After Missouri Cuts Funding for the Disabled, some fear they may be Forced into Nursing Homes
By Samantha Liss, St. Louis Post-Dispatch, August 17, 2018

Last year the state Legislature slashed $50 million from a program that provides in-home care to disabled Missourians. Even though some money was eventually restored, some advocates say those cuts have created a dire situation and could force some people into nursing homes.

For some disabled Missourians, the cuts mean fewer hours with the personal attendants who assist them with daily tasks they cannot perform.
Less help poses problems for Steve Foelsch, 53, of St. Louis, a quadriplegic who is paralyzed from the chest down.

He relies on his attendants for the most basic of needs: They get him out of bed each morning and put him in bed at night, prepare meals for him and bathe him.
The cuts have forced him to nearly max out his credit card so he could pay for attendants to stay longer, time the state will no longer pay for.
“When you make a cut like this, I’m just dangerously close to going into a nursing home,” Foelsch said.

Sending him to a nursing home would end up costing taxpayers more money and would force him to leave his job, he said. He teaches at Maryville University and also works as director of education and training at Starkloff Disability Institute. Because he’s working, he pays taxes and a premium to Medicaid, the state-run insurance program that he benefits from, he said.

Texas - State May Need Billions To Bring IDEA Services Up To Standards
By Alejandra Matos, The Houston Chronicle via Disability Scoop, August 14, 2018

Texas needs to find up to $3.2 billion in the next three years to provide special education services to students who were previously denied them.A 2016 Houston Chronicle investigation and a subsequent federal audit found that the Texas Education Agency illegally set up an 8.5 percent benchmark, or de-facto cap, on the number of students receiving special education services. The cap was in place for more than a decade, and was well below the national average of 13 percent.

In eliminating that cap, state officials estimate that it will cost the state billions of dollars to provide special education services to an additional 189,000 students who need them.

The state legislature eliminated caps on special education services last year, and the federal government is requiring school districts to evaluate students with special needs and offer compensatory services. As more students are identified, the state will have to pay for those resources. TEA officials told a group of lawmakers last week that it estimates the state will need an additional $682 million for special education services in fiscal year 2019, an additional $1 billion in 2020 and $1.55 billion in 2021. That’s more than $3.2 billion in the next three years.

“The truth is that children with disabilities have borne the brunt of spending cuts in special education, early childhood intervention and Medicaid for many years,” said Cheryl Fries, a co-founder of the Texans for Special Education Reform and a parent of a child with disabilities. “Though the price of providing those services sounds high, the cost of not providing them over the long run is much higher to society, both fiscally and morally.”

It’s potentially a staggering new cost for a state that has cut its share of education spending over the past decade, and it will throw a wrench in lawmakers’ budget plans for next year. The legislature is already grappling with major obligations such as paying more than $2.2 billion for Hurricane Harvey recovery and a $2.5 billion Medicaid bill.

Nice News of the Week
Inspired by Daughter, Dad builds Water Park for People with Disabilities
By Paige Levin, CNN, August 9, 2018
At Morgan's Inspiration Island water park in San Antonio, visitors don't have to face any wheelchair ramps at one of the park's main attractions: The riverboat adventure.

Instead, the boats rise to meet them, so guests with disabilities can avoid the trouble that often accompanies those with special needs at amusement parks.

That's the idea behind the world's first ultra-accessible water park, creator Gordon Hartman said. The main goal: Inclusion for those with and without disabilities.

"Children and adults who have special needs are sometimes left out, not because they want to be but because sometimes things are not always adequate for them to use," Hartman said.

That's not the case at this $17 million tropical-themed park, which held its grand opening on Saturday.

Admission also is free for those with disabilities.

"It's not about the rides," Hartman said. "It's about the culture and the feeling people have in the park."
Morgan's Inspiration Island sits just next door to Hartman's first endeavor, Morgan's Wonderland. That fully accessible theme park developed from Hartman's experience with his daughter. Morgan, 23, deals with both cognitive and physical challenges.

Attendance at Morgan's water park is always limited to half of capacity to ensure that no one gets overwhelmed.

"She wanted to experience activities and felt left out of opportunities," he said.

So he opened the $35 million park in 2010. Three years later, a small area called Water Works inside Morgan's Wonderland sparked an idea.
"What we've already seen is that it does work,"

Hartman said. "We've had children of severe special needs playing alongside other children in a water environment."

New Jersey - FCP Unveils Art Chair Project
Hunterdon County Democrat, August 13, 2018
The Resident Artists of the Hunterdon Developmental Center were thrilled to participate in "Let's Sit Together," the Flemington Community Partnership's Art Chair Project. This community-based public art exhibit opened Saturday, Aug. 4 at the Flemington Beer, Corn, and Tomato Festival. Visitors, residents, friends, and neighbors were invited to sit together on original hand-crafted, hand-painted Adirondack chairs strategically placed throughout Flemington to relax, take in the sights and enjoy the rich history of Flemington.
The Hunterdon Development Center is a state-run residential facility for intellectual and developmentally disabled individuals in Union Township, near Clinton.

Our Friends at the American Health Care Association (AHCA) / National Center for Assisted Living (NCAL)
Invite you to attend the
2018 Convention
October 7-10
San Diego, CA

Tuesday, October 9 is ID/DD Day
For more information go to

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