October 25, 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
VOR and YOU:
Update on Pennsylvania Closures

While Governor Wolf of Pennsylvania has not rescinded his order to close the Polk and White Haven Developmental Centers, members of the State Senate and Assembly have been moving on a moratorium to prevent the closures. Representatives Gerald Mullery and Tarah Toohil have introduced a bill, HB1918, in the assembly.

Senator Michelle Brooks has joined with Senators Scott Hutchinson, John Yudichak, and Lisa Baker in offering legislation that would institute a moratorium on the scheduled closing of the Polk and White Haven State Centers.

This week, VOR sent an open letter to Governor Wolf asking him to reconsider and reverse his decision. Susan Jennings, our PA state coordinator and one of the leading advocates in the fight to save the state developmental centers, has shared the letter with members of the state legislature.

Earlier this week, another round of hearings took place in the State Capitol.

VOR's Rebecca Japko has created smaller clips of testimony at the hearings and posted them to our YouTube page:
National News:
HHS Funding Legislation Introduced in Senate
HomeCare, October 18, 2019

Recently the Senate Appropriations Committee announced legislation funding the departments of Labor, Health and Human Services (HHS), and Education. This legislation outlines discretionary spending limits allowable to HHS as well as recommendations from Congress on how the money is allocated within agencies and programs. This is an annual process dictating spending levels for the upcoming fiscal year.

While much of home health and hospice spending is mandatory and not subject to appropriations there are several programs of interest that are subject to this annual process.Included within this package is funding for the Administration for Community Living (ACL) to carry out the Older Americans Act, as well as the Office of Medicare Hearings and Appeals (OMHA), which is the office that handles appeals of Medicare claims denied for payments for providers. The legislation calls for allowing $182 million to be available to Sept. 30, 2021. This funding level is consistent with recent years’ allocations.

For the ACL, the committee is recommending an overall allocation of $2.175 billion.

Study Exposes ‘Significant Shortcomings’ In Autism Screening
By Michelle Diament, Disability Scoop, October 21, 2019
The primary method that pediatricians use to identify children with autism is missing more kids with the developmental disorder than it catches, new research suggests.

Less than 40 percent of children later diagnosed with autism screened positive on what’s known as the Modified Checklist for Autism in Toddlers with Follow-Up, or M-CHAT/F, when they were assessed as youngsters.
That’s the finding of a large new study published this month in the journal Pediatrics.

On Halloween, Blue Buckets Ease Way For Kids Who Are Nonverbal
By Nara Schoenberg, Chicago Tribune via Disability Scoop, October 25, 2019

Last year, Halloween was a challenge for Luke Taylor.

His mom, Omairis Taylor, didn’t think he’d need to carry a blue bucket indicating he had autism; he was so little at age 2, she reasoned, that she could just speak for him. But after four or five houses, it was clear that Luke, who is nonverbal, was feeling stressed. Other kids lined up behind him as well-meaning grown-ups waited for him to say “trick or treat.”

The noise, the lights and the crowding left him overwhelmed and clinging to his mom.

Taylor, a U.S. Army staff sergeant in Honolulu, was just trying to make this year a little better when she posted on Facebook last week, saying that, this year, 3-year-old Luke would be carrying a blue bucket, and she hoped people would understand when she said “trick or treat” for him. But the post was shared and reshared: first by members of the local military Facebook page where it initially appeared, then by parents and well-wishers across the U.S.

To date, the post has been shared more than 155,000 times.

Campaign Aims To Create One Million Jobs For People With Disabilities
By Michelle Diament, Disability Scoop, October 24, 2019
Three of the nation’s most prominent disability organizations are banding together in an effort to bring about a million jobs for people with developmental disabilities by 2025.

Autism Speaks, Special Olympics and Best Buddies said this week that they are launching a campaign called Delivering Jobs to encourage employers across the country to hire people with disabilities and to give job seekers the tools needed to prepare for opportunities in the workforce.
The campaign is also aimed at educating the public about low rates of employment among those with developmental disabilities and the need to advocate for inclusion, the groups said.

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State News:
Minnesota - A Medicaid Waiver System So Confusing That Families Hire Guides
By Chris Serres and Glenn Howatt, Star Tribune, October 22, 2019
Stacey Vogele was weaving through rush-hour traffic in her white SUV, searching for the house of Sam, a 21-year-old with Down syndrome and developmental delays.It had already been a hectic morning. Vogele had cared for her 18-year-old daughter, who has a severe neurological disorder and was recovering from back-to-back seizures.

Before getting in the car she had fielded a call from a county official who told her she needed to submit more paperwork for one of her clients, a mother in desperate need of home nursing care for a newborn with cerebral palsy.

Now, as she drove, Vogele was calmly rehearsing the points she would make to Sam and his parents, who had just begun the process of applying for a Medicaid waiver.

“I know they’re going to be stressed out and overwhelmed, so the key today is to help them understand that’s normal and to believe in their own power,” Vogele said, as she pulled into the family’s driveway.

Vogele is among a growing army of consultants, known as support planners, who help parents of
children who are medically fragile navigate the maze of rules and regulations that make up Minnesota’s system of Medicaid waivers. They explain disability benefits, help fill out paperwork and write support plans, charging $40 to $65 an hour for their skills.

Their work is subsidized by taxpayers — rolled into the other expenses for which families can use waiver money. And it would not exist were it not for the system’s complexity.

“In a perfect world, our profession would not be necessary,” said Scott Price, a support planner from Andover. “But we have created a waiver system with so many layers of complexity that most parents don’t have the wherewithal to go it alone.”
Minnesota has nearly 1,000 of these state-certified consultants, and those with a reputation for vigilance have hundreds of paying clients. Vogele herself has nearly 100 client families across the state.

Tennessee - Opinion: Medicaid is Critical for Tennesseans Who Have Intellectual-Developmental Disabilities
By Carrie Hobbs Guiden, Guest Columnist, The Tennessean, October 19, 2019
(The author Executive Director of the Arc of TN)

The state proposes to convert TennCare into a block grant. As advocates for Tennesseans with intellectual and developmental disabilities (I/DD) and their families, The Arc Tennessee opposes the block grant, because it will endanger the lives of vulnerable Tennesseans.

Governor Bill Lee has suggested that advocates “do not understand block grants” and that we are misinformed about the proposal. On the contrary, it is precisely because we understand block grants and the specifics of this proposal that we are opposed.

State officials suggest that they know better than the federal government what is best for Tennesseans. They suggest that TennCare meets the needs of vulnerable Tennesseans so well it shouldn’t have to follow important federal rules that protect patients and taxpayers. TennCare claims the block grant should garner the state a billion dollars in “savings” that is now going to the federal government.

TennCare has had its share of challenges. Recently, thousands of children were reportedly
disenrolled from TennCare even though they were eligible because paperwork didn’t get to the right place. A new computer system had $400 million in cost overruns and still isn’t fully functional. Taxpayers and patients need for TennCare to be more accountable, not less.

It pains us to hear officials brag about how much money TennCare has saved when for years over 6,000 people with I/DD have been on waiting lists in desperate need of services. Aging parents struggle to care for their loved ones even as their own health fails, yet this need goes unmentioned in the proposal. Recent gains for children with complex disabilities and medical needs are at risk with this proposal, too.

The state wants to achieve “savings” by cutting medical services, and such cuts fall most heavily on those with the greatest medical needs, including many with I/DD. For example, the state wants to only cover one drug per diagnosis. That will hurt many people with I/DD, especially those with mental illness, who often do not respond to medications the same way as someone without an I/DD.

California - An 87 hour Work-Week for $4 an Hour: Caregiver Abuse is Widespread in CA
By Margot Roosevelt, Los Angeles Times, October 18. 2019
A chain of Orange County residential care homes for the disabled paid their workers as little as $4 an hour and made them work more than 87 hours a week, according to a federal lawsuit.

In a settlement announced Wednesday, the U.S. Department of Labor said the facilities in Mission Viejo and Lake Forest were assessed $1.1 million in back wages and penalties for 66 workers after falsifying records and intimidating workers.
The three-year court case brought by federal officials also charged Lilibeth and Gerardo Ortiz, owners of the homes, with retaliation against live-in caregivers and licensed vocational nurses for filing complaints, serving them with eviction notices. Attorneys for the couple “coerced employees into signing false or misleading statements about their working conditions,” the lawsuit said.

“In addition to subjecting employees to oppressive working conditions, the defendants attempted to silence workers and prevent them from exercising their rights,” said Janet Herold, the labor department’s regional solicitor, in a statement. She praised “brave employees who come forward … notwithstanding the defendants’ concerted efforts at intimidation.”
Residential-care facilities, which house a maximum of six disabled or elderly patients, are the subject of growing government crackdowns among immigrant-heavy industries, including construction, carwashes and janitorial companies.

Since January 2016, U.S. labor officials have assessed $3 million in back wages owed to more than 1,500 California workers in the residential-care home industry.

California officials have also been aggressive. Since 2014, the Labor Commissioner’s Office has issued citations totaling more than $12.8 million to residential-care facilities. In one case last year, a San Fernando Valley chain of six Alzheimer’s and dementia facilities, Adat Shalom Board & Care, was assessed $7.1 million for allegedly paying 149 workers less than $3 an hour.

Missouri - Adults with Disabilities Find More than a Job at a Company with a Larger Mission
By Erin Achenbach, Call Newspapers, October 19, 2019
A South County business has been providing the opportunity for adults with developmental disabilities to work and form a community since 1974.

Heartland Industries, 9727 Green Park Industrial Drive, is a contract packaging business currently located in Green Park that supplies services such as shrink wrapping, packaging, printing, bulk mailing and bindery services.

But it is more than just a business. Heartland Industries is also a nonprofit 501(c)3 organization that is an extended employment “sheltered workshop,” employing adults with a range of high-functioning and low-functioning developmental disabilities, including autism and Down syndrome.

[Heartland] employs around 160 people and provides services for over 80 different companies, including local companies like Urban Chestnut Brewing Company and national ones like the Pioneer Woman.

Under programs like those at Heartland, federal funding comes with each employee that helps subsidize the workplace. But the company also pays each worker at least the federal minimum wage, which is lower for those with developmental disabilities who may not be able to find jobs in the regular marketplace. Heartland has a certificate to pay its 160 workers this “subminimum” wage as an organization licensed by the U.S. Department of Labor’s Community Rehabilitation Program.
It’s a practice that has been in place since the 1930s, but some are fighting to end it.

The U.S. House of Representatives voted 231-199 in July for a bill that would raise the federal minimum wage by 2025, with the added provision that new exceptions for the subminimum wage would also end.

It was the first time a house of Congress has voted to end the practice since it started. Current subminimum employers would have to bring up their minimum wage over six years to the actual federal minimum wage. The U.S. Senate has not passed the legislation.

But for Concord resident Michael Gebauer, Heartland Industries is more than just a company that pays a wage. It is a place that gives his daughter Pam, 52, a sense of purpose and accomplishment.

Pennsylvania - People with Intellectual Disabilities, and their Jobs, at Center of Lawsuit against PA
By Brett Sholtis, WITF, October 24, 2019
For years, the state has paid employers who hired people with intellectual disabilities, encouraging companies to bring people aboard who otherwise might not find jobs.

In May, the state reduced the amount it gives those companies, and now it’s facing a lawsuit from people who say that decision could hurt people with disabilities and the companies that hire them.

The state says it made the change because it wants people with intellectual disabilities to be out in the community rather than at a job with other people with intellectual disabilities.

But the lawsuit alleges that the policy is cutting off needed money and that it might force people with intellectual disabilities into situations that aren’t right for them.

Scott Schwartz is one of those people. The 43-year-old from Philadelphia has a genetic disorder known as fragile x syndrome.

Scott can’t count or spell, but he works about 20 hours a week, packaging products such as bags of cough drops and beverage cans. He works at a company licensed to hire people with disabilities, sometimes referred to as a sheltered workshop.
His father, Theodore Schwartz, said his son’s job has given him purpose and self-esteem.

“The key is structure,” Schwartz said. “Private companies can’t promise that kind of structured employment, where my son can thrive.”

The father and son are plaintiffs on the lawsuit, along with a nonprofit advocacy group and Scott’s employer, Associated Production Services.
That company’s 500-person workforce is made up almost entirely of people with developmental disabilities. Without state funding, it would lose $432,000 per year and would likely go out of business, Schwartz said.

Under the change in state policy, funds that used to go to companies like Associated Production Services are earmarked for service providers that meet certain requirements to get people with intellectual disabilities out in the community.

With the change, providers get more money for each person with an intellectual disability who spends about two hours during the day at a community space such as a park, mall, coffee shop or library.

Other News of Interest:
Ruth Bader Ginsburg Wins $1 Million Berggruen Prize
The award is given annually to a thinker whose ideas “have profoundly shaped human understanding and advancement.”
By Jennifer Schuessler, The New York Times, October 23, 2019
She’s already a Supreme Court justice, and a pop-culture action hero. And now, Justice Ruth Bader Ginsburg can claim another outsize distinction: winner of a $1 million prize.

Justice Ginsburg has been named the recipient of the 2019 Berggruen Prize, which is given annually to a thinker whose ideas “have profoundly shaped human self-understanding and advancement in a rapidly changing world.”

The previous winners of the prize, which was first awarded in 2016, have all been philosophers. Justice Ginsburg, 86, who was chosen from a pool of more than 500 nominees, will direct the prize money to a charitable or nonprofit organization.

She was hailed by the prize committee as “a lifelong trailblazer for human rights and gender equality,” and “a constant voice in favor of equality, the rights of workers and the separation of church and state.”
“Few in our era have done more to bring vital philosophical ideas to fruition in practical affairs than Ruth Bader Ginsburg,” the philosopher Kwame Anthony Appiah, chairman of the prize committee and a professor at New York University, said in a news release. “She has been both a visionary and a strategic leader in securing equality, fairness, and the rule of law not only in the realm of theory, but in social institutions and the lives of individuals.”

To the families of VOR, Ruth Bader Ginsburg will always be known as the author of the Majority Decision in Olmstead, and the woman who had the foresight and the humanity to understand that community inclusion for some needs to be balanced by protecting the rights of others to reside in larger congregate settings.
Opinion: "On the Spectrum" Is the New "Retarded"
By Patrick Coleman, Fatherly, October 21, 2019

(Note: this editorial is presented as a point of interest for our readers, and does not reflect official policy of VOR)

The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), the main source of psychiatric information for American doctors, officially codified Autism Spectrum Disorder (ASD) in 2013. The creation of ASD was a response to the growing medical consensus that autism was a disorder encompassing a variety of conditions that affected individuals with varying degrees of severity. ASD gave practitioners a new framework in which to diagnose autism patients. There were no longer distinct modes of autism from Asperger’s to childhood disintegrative disorder — but the severity of autism was measured “on the spectrum.”

In the five years since the release of the DSM-V, “on the spectrum” has been taken up by the public and used to speak to socially, culturally, and, mentally divergent behavior. In other words, it’s been co-opted by non-professionals to explain away behavior considered odd. It’s wrong, yes, but also potentially damaging to people living with ASD whose disorder is increasingly misunderstood as it is weaponized.

Autism Spectrum Disorder wouldn’t be the first term to become weaponized slang. Look at the term “retarded.” Mental retardation was a common diagnosis used to label people with intellectual disabilities in the early twentieth century. Mental retardation was considered the more nuanced diagnosis, replacing “moron” and “idiot” in medical parlance. But as those terms fell out of medical usage, they remained a rhetorical cudgel for labeling people who scored low on IQ tests.

Broad deinstitutionalization in the 1970s meant that the public started to have greater contact with people affected by intellectual disabilities. At that time, the word “retarded” was still used as a medical diagnosis for anyone in the neurologically divergent community. But the term was quickly turned into an insult.

Everyone knew what it meant — it meant being different, helpless, childlike and intellectually deficient in an intractable way. But more importantly, it meant that being perceived as having any of those qualities was a terrible thing.

The use of the r-word has become strictly taboo. That makes sense because people affected by intellectual and developmental disabilities are more integral parts of our communities. More exposure to neurologically diversity has created a progressive movement to recognize the abilities of all people. More care has been taken to understand people as individuals.

Like the term “mentally retarded,” the term “on the spectrum” is a refinement of a diagnosis. But where mental retardation was adopted because the previous words had become insulting, ASD came from doctors understanding there were no distinct genetic marker for specific autism disorders like “Asperger’s” and “Rett” syndrome. A generalized cause for similar behavior traits required an inclusive diagnosis that captured them all.

And that’s why the use of “on the spectrum” by laypeople to cast shade on weird behavior is all the more harmful. It harkens back the the bastardization of the term “retarded” as a way to demean people with a diagnosis while simultaneously demeaning people without a diagnosis. All of it stems from a deep lack of understanding about the lived experience of individuals with intellectual disabilities. “On the spectrum” may feel more harmless because it’s the more scientifically current term but instead, it’s warping a diagnosis and spreading disinformation in an aggressive manner.

What's Happening In Your Community?

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

Contact us at [email protected]
VOR 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. 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. 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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


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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