January 3, 2020
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
It's not too early to start planning!

VOR's 2020 Annual Meeting & Legislative Initiative

Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10
VOR's Annual Meeting and Legislative Initiative will be held on June 6 - 10th this year.
Details will be forthcoming.

If you are planning on creating a crowdfunding campaign, now is the time to begin!

Our room reservation block at the Hyatt won't open for several weeks, but it's not too early to start planning your stay and making reservations for air or train travel.
VOR and YOU:

As parents, siblings, friends, guardians, and caregivers for people with intellectual and developmental disabilities, we face every new year with a feeling of hope and a sense of challenge for what lies ahead.

2020 is no exception.

Several of the articles that appear in this, the first newsletter of 2020, will remind us of those hopes and challenges. While our readers may not be happy with some of the news or agree with some of the opinions in the stories below, we know that we become better advocates by being aware of these issues in the disability community.

At VOR, our mission, as always, is to advocate for high quality care and human rights for ALL people with intellectual and developmental disabilities.
National News:
Disability Life In Ten Years: Fears And Hopes For 2030
By Andrew Pulrang, Forbes, December 29, 2019
As we start a new decade, we can see hopeful signs of improvement for people with disabilities. At the same time, it’s hard not to notice more negative trends — evidence that in some ways we may be heading in the wrong direction on disability issues and culture.

What will life be like for disabled people ten years from now? Will today’s worrying trends turn into frightening realities? Or will we finally achieve some of the access, equality, and opportunity breakthroughs we have been working on for decades?

Let’s first look at three ways things could end up much worse for disabled people in 2030, given current trends:
1. Division
2. The sinister side of innovation
3. Back to institutions

Now that we have reviewed some realistic fears, let’s look at three entirely feasible hopes for how life could actually be much better for people with disabilities by 2030:

1. Health insurance for everyone
2. End of the poverty trap
3. Accessibility is done

Severity of Autism Symptoms Varies Greatly Among Identical Twins
Findings from NIH-funded study could inform treatment strategies.
Press release from the National Institute of Health, December 27, 2019

Identical twins with autism spectrum disorder (ASD) often experience large differences in symptom severity even though they share the same DNA, according to an analysis funded by the National Institutes of Health. The findings suggest that identifying the causes of this variability may inform the treatment of ASD-related symptoms. The study was conducted by John Constantino, M.D., of Washington University School of Medicine in St. Louis, and colleagues. Funding was provided by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The study appears in Behavior Genetics.

ASD is a developmental disorder that affects how a person behaves, interacts with others and learns. Previous studies have found that when one identical twin has ASD, chances are extremely likely that the other twin has it, too.

The authors analyzed data from three previous studies comprising a total of 366 identical twin pairs with and without ASD. The severity of autism traits and symptoms in the twins was measured by a clinician’s assessment or by parents’ ratings on a standardized questionnaire. Some cases were diagnosed by both methods. The researchers determined a 96% chance that if one twin has ASD, the other has it, too. However, symptom scores varied greatly between twins diagnosed with ASD. The researchers estimated that genetic factors contributed to only 9% of the cause of trait variation among these twins. In contrast, among pairs of identical twins without ASD, the scores for traits were very similar.

State News :
Illinois - Why Adults with Developmental Disabilities are Waiting Seven Years, Or Longer, for Programs They Need to Live On Their Own
By Marie Fazio, The Chicago Tribune, December 3, 2019
Nick Redfern, diagnosed with autism, filled his school days with lessons and field trips that taught him skills he needs for a life on his own.

But that all changed when he turned 22.

Aging out of the state's public special education system, Nick now stays at home, where his mother worries he is becoming more and more isolated and losing what he has learned. She wants to get him into adult programs funded by the state that would continue his training and maybe even set him up in a group home.

Susie Redfern has been waiting for a spot to open for three years. Her son is now 25.

“I’m hoping he’ll have activities and work every day and get the support he needs to basically have a life that’s more than just me and my husband,”
Redfern said. “Because we’re not going to be here forever.”

Nick is among nearly 20,000 people with developmental disabilities in Illinois who are on a waiting list to get into adult programs. Many of them come from families who don’t have a way to pay for home care, job coaches or other services.
Most wait an average of seven years before they are selected, despite a court order in 2011 that Illinois shrink the list and do other things to improve how it serves developmentally disabled adults.

One family told the Tribune they signed up their child when he was just 5 and he still did not get a spot when he turned 22 this year.

North Carolina - ‘What Happens When We die?’ NC parents Seek Housing for Adult Children with Disabilities
By Trent Brown, The News & Observer, December 27, 2019
Dylan Hoyle paces back and forth through his kitchen and living room. He does that sometimes when his environment changes abruptly. This time it’s because two new guests just walked in.

Noticing his pacing, Dotty Foley asks her son, “What is it you want me to do that will make you feel good right now?”

“Dr. Pepper?” he asks. She’s busy, but a member of his support staff is there to walk with him down the street to Harris Teeter.

Dylan, 29, has autism and lives by himself with the help of supported living staff.
This house, just off East Franklin Street in Chapel Hill, has been good for him over the past two years. It’s the latest in a series of living situations he’s had over the past decade, since he moved out of his parents’ house.

But his family has been told that he’s soon going to lose the services that let him stay.

Wisconsin - Chaotic Care - In Wisconsin, People with Disabilities Direct Their Own Lives
By Chris Serres, The Star-Tribune, December 29, 2019
A decade ago, Lori Sabby-Lemke was working two jobs while caring alone for her teenage son Dustin, who was born with a severe form of cerebral palsy.She was tired, lonely and broke.

Dustin’s only means of mobility — a rusted, wheelchair-accessible minivan with holes in the floorboards — sat idle in the weeds outside her mobile home because she had no money to fix it. Worse, her insurance company repeatedly denied requests for more supports to care for Dustin at home.

Then, in the fall of 2010, a social worker told Sabby-Lemke of a new state program that could change everything. It was called IRIS and it was designed to give people like Dustin power over their lives. For the first time, the family would control their own medical budget. Equipment and services that once seemed unattainable — such as a wheelchair-accessible bathroom and a working van — suddenly were within reach.

“It felt like we had emerged from the darkness and into the light,” Sabby-Lemke said.

With IRIS (Include, Respect, I Self-Direct), Wisconsin became one of the first states in the nation to adopt a model known as self-directed Medicaid benefits. The controversial move shifted the balance of power away from insurers and government bureaucrats, and empowered individuals to make their own choices.
Today, Wisconsin leads the nation in most measures of promoting independence and quality of life among people with disabilities. Fully 33% of Wisconsin residents with intellectual and developmental disabilities report directing their own Medicaid services — nearly three times the national average, according to a 2018 national survey.

“The IRIS program is the best thing that ever happened in this state,” said Patti Rood, of Elk Mound, Wis., whose adult son is enrolled in the program. “It’s living proof that, when you trust people to make their own decisions, they live richer and fuller lives.”

So far, Wisconsin’s fervor for self-direction hasn’t spread west across the border. In Minnesota, county case managers and large service providers still dictate major decisions for people with disabilities, consigning thousands to isolating group homes rather than independent lives in the community. In Minnesota, only 8% of people with intellectual and developmental disabilities report directing their own services, among the lowest rates in the nation.

Iowa - Superintendent at Iowa Center for People with Disabilities is Fired; Center under Federal, State Investigations
By Barbara Rodriguez, Des Moines Register, December 30., 2019
The top official at a state-run institution that provides care to people with severe intellectual disabilities has been fired from his job amid state and federal investigations into the facility.
Jerry Rea, the superintendent of the Glenwood Resource Center, was notified in a letter Monday that he was being "discharged from employment" at the Iowa Department of Human Services.

"This action is being taken as a result of a mounting list of disregard for policies and procedures," according to the letter, which was signed by Rick Shults, who oversees the agency's mental health and disability services division.

Rea has been on leave from the center since early December, in the wake of a federal investigation into possible rights violations of the people with disabilities cared for at the southwestern Iowa facility. The investigation includes allegations of uncontrolled human subject experimentation, inadequate medical care and "incidents causing needless physical injury."

Federal investigators are looking into whether Glenwood patients were subjects of a "Sexual Arousal Study." The scope of that study, according to a Dec. 2 letter by DOJ investigators, may relate to "identifying antecedents, triggers, or causes of sexual arousal, measuring state of sexual arousal, or suppressing sexual arousal."

The investigation also includes examining whether patients were subject to "Optimal Hydration Projects" that may involve treatment of pneumonia.

Multiple attempts to reach Rea over several weeks have been unsuccessful.

Missouri - New Missouri Minimum Wage Impacting Non-Profits
Non-profits say increases having adverse effects
By Zachary Dodge, KOAM News, January 2, 2020
For the last 21 years, David Young has worked at Joplin Workshops to supplement his income from social security disability.“If it wasn’t for sheltered workshops in general, a lot of people who have disabilities, they wouldn’t be making extra money,” says Young.

That’s why he was originally excited about the minimum wage increase in Missouri. But to put it in his words, it has proven to be a double-edged sword.

“I used to work two jobs seven days a week. This job and another job. And since everything has transpired, I’ve had to cut back,” says Young.
Joplin Workshops Executive Director Jeff Jones
says people who receive benefits like Social Security Disability and Medicaid can’t earn more than a certain amount of money each month, or they will lose their benefits.

“In 2019, they could earn $1220 a month before it started affecting their benefits. It’s changed again, to where they can earn $1260, but the [pay] increase overall for them is $110 a month,” says Jones. “So that actually reduces the hours they can work. So it’s kind of a… well, it’s a bad policy basically.”

International News:
Australia - Darkest Moments: Why Two Mothers Are Considering Giving up Their Children
By Miki Perkins, The Sydney Morning Herald, December 18, 2019
It’s not as if Deborah Frith wants to put her eight-year-old son Jacob in a group home. She loves him deeply, and would give anything to protect him. But looking after a boy who has autism and severely challenging, often violent, behaviours has pushed the sole parent to her breaking point.

“I absolutely adore my child and I'd move hell and high water to keep him,” she says. “But it’s too much to sustain without the correct support. It’s a very unfortunate situation where you’re forced to suggest the things that come to you in your darkest moments.”

Ms Frith is one of two mothers, both sole parents, who have children with disabilities and severely challenging behaviours - including violence and physical aggression - and say they don't get enough NDIS funding for specialist behavioural support.

They say they have suffered numerous physical injuries while caring for their children, and that they
are attacked on an almost-daily basis. Both have been driven to the verge of putting their children into group homes and both have lodged complaints against the National Disability Insurance Agency that could become test cases for their eligibility for funding.

Their complaints, lodged with the Australian Human Rights Commission are believed to be the first legal challenge of this kind in Australia. They allege the length of the NDIS waiting period is causing their children huge detriment compared with children with other disabilities.

They allege they can’t get their children’s plans approved or reviewed in a timely manner. Ms Frith had to wait more than a year to learn that Jacob’s application for behavioural support had not been approved. During that time his behaviour worsened, and she is appealing the decision.

Disability Rights Ohio has Forfeited its Advocacy Role by Ignoring Needs of the Profoundly Disabled
By Robert Columbo, Cleveland . com, December 30, 2019

Ohio’s protection and advocacy system, Disability Rights Ohio, is no longer representing all those in Ohio with developmental disabilities and needs to be reformed. This became evident with Disability Rights Ohio’s 2016 filing of a lawsuit against the state which families have been fighting ever since. On Dec. 17, families testified in federal court in Columbus objecting to the proposed class-action settlement that could adversely affect the funding of residential and work supports of the most profoundly disabled people in our state.

I am a parent of a young lady who is severely developmentally disabled and lives in an Intermediate Care Facility. She has flourished there, needs the care she receives, and without it her safety and her quality of life would be compromised. Disability Rights Ohio should not force Intermediate Care Facilities to close by squeezing the financial support required to adequately maintain these facilities.

Gov. Mike DeWine is charged with appointing the protection and advocacy system in Ohio. We urge him to put in place real reforms so families of individuals with severe developmental disabilities do not have to live in fear of the state’s own protection and advocacy system.

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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