August 24, 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
Nice News of the Week
Garden Allows Residents to Learn, Flourish Skills
By Marisa Hicks, The Log Cabin Democrat, August 23, 2018
Not only did a handful of Conway Human Development Center residents help create a hidden gem at the facility, but they also ensure it remains maintained throughout the year.

While CHDC features a community garden, it also has a “behind the scenes” garden that is maintained by two staff members and 10 residents. The garden features a variety of seasonal fruits, veggies and flowers.

The Log Cabin Democrat had the opportunity Thursday afternoon to see firsthand the work three of the 10 residents put in to maintaining this garden.

Strategically located to keep wanderers from preying on the fruits of their labor, the CHDC garden allows residents involved to learn responsibility through upkeep and in harvesting vegetation.
Caleb Ross is one of two residents who has his own personal section within the boundaries of the CHDC garden.

“He comes out and waters and picks every day,” Bryan Nicolle, a rehabilitation instructor who works in the garden, said as the LCD watched Ross get to work and begin watering a cluster of flourishing cucumber plants. “Caleb is one of two that has his own beds that I don’t touch. And, [he does] amazing.”

State Spotlight - Indiana
For several months, officials in Indiana have created an Intellectual and Developmental Disability Task Force which has toured the state and opened forums to allow families to voice their concerns and hopes for how the state may better meet the needs of the IDD community. Several stories appeared in the news this week regarding this effort. Two stories on the Task Force's forum in Southern Indiana are featured below.
Southern Indiana Disability Advocates Plead State Task Force to Address Their Issues
By Danielle Grady, The News & Tribune, August 22, 2018
Connie Baugh is tired. Tired of therapy for her children that not working, tired of driving 45 minutes to therapy she thinks might actually work, tired of being looked down upon by her neighbors. Tired of not receiving the help she and her two children with autism need. 

Baugh hopes that a state task force, dedicated to creating a ten-year comprehensive plan that will address intellectual and developmental disability issues, will be that help. 

“I think it’s long overdue. Very much long overdue,” Baugh said. “The last one was created in 1997 and that is way too long, and especially for us with autism and, again, not having one but having two children and not being able to function as a normal family.” 

Baugh, who lives in Floyd County, was among several Southern Indiana residents who told the Intellectual and Development Disabilities Task Force at an Indiana University Southeast meeting Wednesday what they would like to see addressed in the comprehensive plan. 

The beleaguered speakers — parents of children with disabilities, professionals and self-advocates — spoke of injustices brought upon by federal and state policy.
Cathy Summers’ main issue is housing. Summers’ brother lives in Rauch, Inc.’s Hawthorn Glen housing community in Clark County. He and two of his peers live in one home together, supervised by staff. “He loves it,” Summers said. 

Bob Summers enjoys riding his three-wheel tricycle around the neighborhood and leaving to go visit his family or take a trip to the bowling alley. All this, though, could be taken away by a new federal rule. 

The United States government is making a move to more integrated community living for individuals
with disabilities, and Rauch’s Hawthorn Glen homes, despite being in a subdivision with people who don’t have disabilities, are all located right next to each other.

If the government rules later this year that Rauch’s homes aren’t integrated enough, the nonprofit could lose its funding, said Loren Pilcher, Rauch’s director of supported living.
Finally, Jennifer Owens, the director of family services for Blue River Services, Inc. in Harrison County, an organization that assists people with disabilities, would like for the task force to address the state’s funding for First Steps, an Indiana program that provides early-intervention to young children with disabilities. 

Since 2002, the state has cut funding for the program three times, which has caused multiple providers to stop participating, said state Rep. Ed Clere. Blue River Services is still involved in First Steps, but it’s becoming more and more difficult for them to pay their therapists a competitive wage, which leads to hiring and retention problems, Owens said. 

Baugh is so worried about the lack of help from the government that she believes some of the children who aren’t being treated today could end up doing bad things in the future (although most people with developmental disabilities do not display aggressive or self injurious behavior, according to the University of California San Diego’s website). 
“Then you sit back and you say, ‘well where were their parents?’” Baugh said. 

She has an answer: Their parents were advocating for them. It was the lawmakers who weren’t listening.

Southern Indiana calls on State Task Force to step up Services for People with Disabilities
By Rachel Krause, WAVE 3 News, August 22, 2018
Big changes to services and support for thousands of Hoosiers are coming. A task force is gathering input all around the state of Indiana, putting together a plan to implement community-based services for those with disabilities. The possibility for change has many in the southern Indiana community concerned.

Laura Means' son Christopher is never far from her mind. Christopher is 26-years-old and has disabilities resulting from a brain injury that happened 20 years ago, she said. 

"He suffers from seizures and motor planning problems," Means said. "But he works at Rauch sheltered workshop four days a week, goes in and puts in a full day's work, loves what he does, loves to be with people."Means said the job gives her son a sense of purpose, gives him the chance to make money to buy things for himself and gives him a sense of belonging.
With a state task force in southern Indiana gathering feedback about changes to the services and programs offered to people with disabilities in the state, concerns over Christopher's job and his future brought her in to advocate for him before the task force. She wasn't alone, dozens of other parents and employees of groups that help provide services or programs to people with disabilities showed up to speak before the task force, urging them to keep their programs or to increase funding to help encourage their staff to stay. 

"There have been several states that have gotten rid of their shelter workshops and that this was something that was possibly being looked at. And we don't want to see that option taken away from those that really need that," Means said.

Rauch's Workshop At Issue for State Disability Task Force
By Danielle Grady, The News & Tribune, August 21, 2018
Christy Smith has two jobs. For 20 hours a week, she’s an employee at the Goodwill in Clarksville. The rest of the time, she packages margarita salt at Rauch, Inc., a nonprofit organization that advocates for Southern Indiana residents with disabilities and their families, helping many of them get jobs either in the community or at their New Albany manufacturing facility.

Both of Smith’s jobs, the Goodwill gig and the production one, are made possible by Rauch. They give her a sense of purpose, she said, and she especially likes knowing that if her Clarksville job disappeared, she’d have another one to fall back on.

The two positions are different and not just to Smith. Her Goodwill job is considered supported employment, meaning she found a position out in the community with the help of an organization.

Her job with Rauch is called sheltered employment, which is when a person with a disability works alongside their peers in a protected environment
.Lt. Gov. Suzanne Crouch, the chair of Indiana’s Intellectual and Development Disabilities Task Force, who toured Rauch on Tuesday, sees the benefits of both kinds of work. But in the disability services realm, the options are polarizing.

Supported employment is seen as a way to integrate people with disabilities into the community, but many employees and their families feel more comfortable working in a sheltered workshop with their peers and staff that are trained to deal with their needs. But there’s also criticism that sheltered work results in below average wages for people with disabilities who are paid based on productivity, not minimum wage standards.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
National News
CDC Expands Autism Monitoring Efforts
By Michelle Diament, Disability Scoop, August 23, 2018
For the first time, the government’s autism surveillance network will begin factoring the experiences of teenagers with the developmental disorder. The Centers for Disease Control and Prevention is currently seeking out research centers to participate in the next round of regular autism tracking efforts through its Autism and Developmental Disabilities Monitoring Network.

Traditionally, the CDC has selected researchers at sites across the country to comb through health and educational records for 8-year-olds in their areas to assess how many qualify for an autism diagnosis. This data is then used to estimate autism prevalence, which was pegged at 1 in 59 children in the latest count released this spring.

More recently, the network expanded to include data on 4-year-olds as well as information on other conditions like cerebral palsy and intellectual disability. Now, the CDC is eyeing teens. For the monitoring reviewing data from 2018 and 2020, the agency wants researchers at up to two sites to look at 16-year-olds who were previously identified as having autism symptoms in the network’s tracking when they were age 8.

State News
West Virginia - New Neurodevelopmental Center for Children
By Mariah Congedo, WDTV 5, August 23, 2018
Over the last year, WVU Medicine Children's has been working on a new treatment center for kids with Neurodevelopmental disabilities.

The center provides intensive one-on-one services for children with a variety of disabilities. Autism Spectrum Disorder, Developmental Delay, Cerebral Palsy, Neuromuscular Disease and Tourette Syndrom are just a few.

"To really give them a chance to develop normally and to lead a normal life," said Albert Wright the President and CEO of the WVU Health System.

About 1 in 58 children in West Virginia are diagnosed with autism. This treatment center gives them social interaction, speech, physical and occupational therapy, feeding programs and independence through scientific research.
"Our treatment is based on scientific research. It's the most effective and successful treatment that will work with young children who are developing and who have some of the characteristics of autism," said Dr. Susannah Poe the Director of ABA Servies for WVU Medicine Children's.

"The service we provide is very helpful to families. It teaches them, as well as what we teach the children, exactly how you intervene and what kinds of ways are successful," said Poe.

The center will take in their first child on Sept. 4.

Illinois - Group Home Death Illustrates Challenges When Suspect Has Special Needs
By Elvia Malagon, Chicago Tribune via Disability Scoop, August 22, 2018
Herbert “Herbie” Rohloff wasn’t expected to live to 53 years old.He was born with Down syndrome, and doctors said they did not think Rohloff would survive past his second birthday, according to relatives. As a teen, he wasn’t expected to make it to adulthood. As he reached middle age, his brother worried that the biggest threat to his life was the busy intersection outside his group home in Chicago’s West Rogers Park neighborhood.
But his family never thought his life would end violently. Last October, a fight with another resident over Halloween candy turned physical, and two weeks later Herbert Rohloff was dead.

Chicago police closed the homicide case by exception, meaning detectives know who committed the killing but aren’t pursuing charges because of the person’s mental capacity, said Anthony Guglielmi, spokesman for the department, in an email. The Cook County state’s attorney’s office declined to comment.

The homicide case, among hundreds in Chicago last year, was complicated from the start because of the suspect’s intellectual disabilities. The legal community has discussed for years how to mete
out justice in such cases. Now an approach known as an individualized justice plan is gaining some traction as a way to hold people with intellectual disabilities accountable while providing alternatives to traditional forms of punishment.

Last year, Illinois lawmakers agreed to create a task force to look at the issue.

Charging people with intellectual disabilities can be complex because it’s unclear whether they could formulate the intent to kill, said Hugh Mundy, an associate professor at the John Marshall Law School.

“Every criminal (offense), or virtually every criminal offense, required a mental state in order to prove the element,” Mundy said. “It’s not just the act itself.”

Texas - After Harvey, Questions Remain about whether Registry Helped People with Disabilities
By Marissa Evans, The Texas Tribune, August 22, 2018
Texas has a system in place to identify people with disabilities who will need extra help during a natural disaster. But it's unclear how many people actually received help through the State of Texas Emergency Assistance Registry, or STEAR, during Hurricane Harvey.

One woman, in a wheelchair, sat in water to her waist when emergency responders arrived. They could not accommodate her chair and told her they’d come back. They never did.

A husband and wife were trapped in their home, with the wife recently out of the hospital and in a wheelchair. A man was turned away from a shelter that wouldn’t admit his service dog.

Those incidents, documented in emails during the frantic hours when Hurricane Harvey’s historic rains and flooding inundated thousands of Houston homes, show disability advocates and government officials scrambling behind the scenes to help disabled Texans trapped by the flooding.
Texas has a system in place to identify people with disabilities who will need extra help during a natural disaster. But it’s unclear whether any of the people described in the emails signed up for or even knew about it. It’s also unclear how many people actually received help through the State of Texas Emergency Assistance Registry, or STEAR, during Harvey.

But as the recovery continues a year after Harvey’s Aug. 25, 2017, landfall, there’s tension and confusion in the disabled community about
whether the registry will actually work when they really need it. As of November, 75,733 Texans were registered with STEAR, according to the Texas Department of Public Safety. The registry allows people with disabilities and special medical needs to sign up to receive priority status for evacuations, shelters, wellness checks, power and water shutdowns and information on support services.

More than half of STEAR registrants have physical, sensory, mental health, cognitive, or intellectual needs that affect their ability to function independently. Many don’t have a vehicle and have no way to evacuate without assistance.
In a disaster, disabled people are more at risk: wheelchairs or walkers may be left behind during an evacuation, a shelter may not be able to fully accommodate needs like accessible showers for people with mobility impairment, quiet areas for people with autism or space for someone who weighs 350 pounds or more. Some cannot afford multiple nights in a hotel.

While the Texas Department of Public Safety’s Division of Emergency Management administers the registry, the agency does not provide direct services to STEAR registrants during emergencies. The agency’s webpage notes that there are no guarantees for help.

New Jersey - Woodbridge to purchase former developmental center site for $5M
By Suzanne Russell, Bridgewater Courier News, August 17, 2018
The township is set to purchase the 50-acre former state-owned Woodbridge Developmental Center site on Rahway Avenue for $5 million.
It's looking at the possibility of medical, educational and commercial uses on the site, but no residential development, according to Woodbridge Mayor John E. McCormac.

"We're still trying to figure out what our plans are," McCormac said. "The Avenel section of town has been getting a lot of our attention with the Station Village and Route 1 Corridor development. This continues our commitment for investing in the Avenel section of town"
The purchase is set to move forward after Gov. Phil Murphy on Friday signed legislation sponsored by state Sen. Joseph F. Vitale (D-19th District) authorizing the state treasurer to sell the parcel of state surplus real estate to the township.

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

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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