November 16, 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
All Aboard!
From our Friends and Families at the Conway Human Developmental Center
By Marisa Hicks, The Log Cabin Democrat, November 9, 2018

As the Christmas season approaches, the Conway Human Development Center is gearing up for its fourth annual Polar Express event and welcomes area residents to climb aboard.

Attendees are encouraged to wear their most festive pajamas for the upcoming event as organizers work to add a magical touch to the Christmas celebration. Santa and his beloved Mrs. Claus will be on site for photo ops as little elves help guide attendees along the wonderland adventure at the CHDC campus.
The event is free and open to the public.

“The Polar Express is our favorite annual event here on grounds,” CHDC Superintendent Sarah Murphy told the Log Cabin Democrat. “This event is all about the joys of the Christmas season. CHDC being blessed to have our own train just makes the experience even more special.”
Rail road volunteers who worked faithfully to get the train up and running continue tending to the facility’s needs to ensure the Old Century Flyer, transformed into the Polar Express, runs smoothly for the holiday season.

The Polar Express event, which welcomes families from across the county, is organized by the CHDC’s Volunteer Council.

“It is fitting that that rail road volunteers who worked tirelessly to get it fully operational, and to this day keep it running smoothly, are volunteers,” Murphy said. “CHDC has the best volunteer group, which is called the CHDC Volunteer Council, which is a group made up of parents, community members and staff whose mission is to enhance the lives of the individuals served at CHDC. We are able to enjoy events like the Polar Express because of our volunteers.”

Autism News:
With Insurance Change, Access To ABA Therapy Expected To Grow
By Blythe Bernhard, Disability Scoop, November 12, 2018
A change to medical billing codes for the most common behavior therapy for autism will mean better insurance coverage for families and less hassle for providers, advocates say.

Current Procedural Terminology, or CPT, codes are used by medical providers to bill insurance companies for services. The codes are maintained by the American Medical Association, with labels of temporary (more experimental, but still effective treatments) or permanent (proven effective under more rigorous standards).
The CPT codes for applied behavior analysis — widely considered the gold standard of autism therapy — will move from temporary to permanent starting Jan. 1, 2019, generally requiring insurance companies to reimburse for the therapy and conferring legitimacy to its effectiveness, advocates say.

Saliva Test May Help Speed Up Autism Diagnosis
By Michelle Diament, Disability Scoop, November 13, 2018

New research suggests that determining whether or not a child likely has autism could one day be as simple as spitting in a cup.

By looking at RNA in saliva, researchers say they can identify kids on the spectrum with 85 percent accuracy.

The findings come from a study of 456 children ages 19 months to 6 years from various locations across the country, 238 of whom had autism, 84 with developmental delay and 134 who were typically developing. RNA levels were measured from each child’s saliva sample. Then, researchers used machine-learning algorithms to identify the top RNAs in 372 of the samples, which were validated in the other 84 samples.

“Though children with autism have diverse genetic backgrounds, we found that a set of 32 RNA factors in their saliva could accurately distinguish them from peers without autism,” said Dr. Steven Hicks of the Pennsylvania State College of Medicine who led the study published this month in the journal Frontiers in Genetics.

500,000 Teens With ASD Are Headed To Adulthood. Where Will They Work?
By Suzanne Garofalo, Houston Chronicle, October 30, 2018
When Olivia Shanks landed in the hospital, it changed her life.

She didn’t arrive as a patient, though — she came to work. The 21-year-old, who has high-functioning autism, has struggled to get places on time. Some basic workplace tasks stressed her out.

Dependence on others dinged her self-confidence.
Her work in Memorial Hermann Southwest Hospital’s food-services department came via one of Houston’s nonprofit groups providing job training and support for a population that’s exploding but finds few opportunities to live as fully as possible.

“I basically learned everything here. I didn’t know how to organize silverware,” said Shanks, who also learned about teamwork and following a schedule. “Even though I’m still not good at it, I’ve gotten less scatterbrained with time management or pressure.”

The climb of autism diagnoses is alarming. This year, the Centers for Disease Control and
Prevention upped its estimate to 1 in 59 U.S. births — twice the 2004 rate of 1 in 125. National advocacy group Autism Speaks estimates 500,000 teens with autism will reach adulthood over the next 10 years.

Yet nearly half of 25-year-olds with the disorder have never held a paying job, according to Autism Speaks. Ninety percent of adults with autism are unemployed or underemployed.

Some are too impacted to work once they age out of school-based vocational services by 22. But many who could work face depression and isolation, idle on their parents’ couch, financially dependent on them, government or community organizations. Research shows job activities that encourage independence reduce symptoms and increase daily living skills.

Direct Support Professionals:
Raise Wages for Direct Support Professionals
By Tori Villafana, The Trentonian, November 14, 2018

I am my truest self, working as a direct support professional (DSP). Nothing is as rewarding as providing the supports that enable people with intellectual and developmental disabilities to live as independently as possible in the community. The people I work with are my family and I am dedicated to helping them realize their potential. My work is critical. Critical to the people I support and to the families who rely on my care for their loved one.

The problem is I need to work a second full-time job to afford to work as a DSP. The pay is simply too low to make ends meet. In 10 years in the field, my pay has remained virtually flat. I’m tired from working so much, which makes it hard for me to give all that I am to the people who need me most.

It’s time lawmakers recognize the essential work of DSPs by bringing wages in line with the skill and training required for the job. The people I work with deserve more and so do I.

State News:
Massachusetts - Editorial: Ending Abuse of the Disabled
The Boston Globe Editorial Staff, Nov. 14, 2018
A society is — or should be — judged by how well it protects its most vulnerable citizens. But when it comes to protections for those with intellectual and developmental disabilities, Massachusetts still has a long way to go.

And by every statistic available, the problem of physical and sexual abuse is growing worse with every passing year.

“It is an epidemic of abuse against people with disabilities,” Nancy Alterio, executive director of Massachusetts’ Disabled Persons Protection Commission (DPPC), told a legislative oversight committee recently.

One way to make a dent in the problem is rather straightforward: a registry of caretakers against whom claims of abuse have been substantiated. The idea has gone by many names — often named for those victimized. The current version is called “Nicky’s Law,” after Nicky Chan, whose parents, Nick and Cheryl Chan, were made aware of a caretaker’s physical abuse of their son. The case against their son’s abuser actually went to court — few make it that far — but the caretaker was found not guilty and can, therefore, continue to work in group homes.
“I can tell you that the systems that are in place are not working,” testified Anna Eves, vice president of the Massachusetts Coalition of Families and Advocates. Her son, too, was the victim of abuse and neglect last year. Abuse claims were substantiated against seven people who worked with her son. Two of those workers were still on the job, she said.

The problem is that in many instances the victim is nonverbal, and absent visual evidence — and, sad to say in some cases, even with visual evidence — cases may be “substantiated” by the DPPC but not result in a successful criminal prosecution. (The standard for the latter is much higher.)

The victim remains the victim. But the abusing caregiver is free to move on to the next group home.

Control of South Carolina Disabilities Agencies Must Change, House Panel Says
By Tim Smith, The Greenville News, November 12, 2018
A state agency tasked with caring for some of South Carolina's most vulnerable residents, an agency with problems that have been detailed in recent years by The Greenville News, needs more oversight and accountability, a state House panel has decided.

The House Legislative Oversight Committee has overwhelmingly endorsed a proposal to place the state Department of Disabilities and Special Needs in the governor's cabinet. It also recommends that all county special needs boards become advisory bodies and that their county employees become state workers, in effect making local agencies part of the DDSN.

The recommendations from the bipartisan panel last month are the strongest action to date by lawmakers concerning the agency. 

The recommendations come after a series of
articles by The Greenville News during the past two years detailing allegations of abuse and neglect, long waiting lists for services, questions of financial stewardship and problems with local boards.

With an annual budget of about $762 million, most of it through federal funding, the DDSN oversees the care of people with intellectual disabilities, autism, and brain and spinal-cord injuries through a network of dozens of county disabilities agencies, DDSN-run regional centers, and private for-profit and nonprofit service providers.

Kentucky - Rumors of Oakwood Closing Not True
By Bill Mardis, Commonwealth Journal, November 15, 2018
"That rumor is NOT true ... Bluegrass Oakwood is NOT closing!"

Beth Fisher, public information officer for the Cabinet for Health and Family Services was
responding to a rumor that the facility for persons with intellectual and development disabilities is closing. The rumor was probably fanned by the development of a shopping center on the northeast corner of what was part of the 200-acre campus.

Oakwood is an Intermediate Care Facility providing residential services for individuals with intellectual and developmental disabilities (IDD).
Oakwood opened in 1972, a "prize" from then Gov. Louie Nunn. Bluegrass began management of Oakwood in 2006.
The staff provides care 24 hours a day, seven days a week, ensuring each resident's services, created by an interdisciplinary team, are fulfilled.
The Oakwood Specialty Clinic is a state of the art facility providing the highest quality medical, dental and psychiatric care to individuals with IDD. The doctors and staff are experts in treating persons with IDD and communicating with their families. Services are based on best practices in IDD treatment.

National News:
FBI Records Spike In Disability-Related Hate Crimes
By Shaun Heasley, Disability Scoop, Nov.14, 2018
As hate crimes across the U.S. surge, new data indicates that incidents targeting people with disabilities are up sharply too.

There were 128 hate crime offenses reported during 2017 stemming from bias against those with disabilities, according to the FBI. That’s up from 76 the previous year.

The numbers released this week come from the FBI’s Uniform Crime Reporting Program, which tallies data submitted by law enforcement agencies across the country on incidents motivated by disability as well as race, ethnicity, ancestry, religion, sexual orientation, gender and gender identity.
Overall, federal officials said there were 7,175 hate crime incidents in 2017, up some 17 percent from 6,121 the year before.

The report indicates that 1.6 percent of all incidents in 2017 targeted people with disabilities. Those with mental disabilities were affected by 93 of the offenses and 35 targeted people with physical issues.

Lawmakers Revive Plan To Curb Restraint, Seclusion In Schools
By Michelle Diament, Disability Scoop, November 15, 2018

Legislation establishing first-ever federal oversight of restraint and seclusion in the nation’s schools is back on the table.

Democrats in Congress introduced a bill known as the Keeping All Students Safe Act this week. The measure would bar seclusion at any school receiving federal tax dollars and significantly limit the use of restraint to situations where the safety of students and teachers is at risk.

“It’s barbaric for schools to confine students alone in locked rooms, or to use abusive methods to restrain little children. Treating school kids this way should not be tolerated in America. Period,” said U.S. Sen. Chris Murphy, D-Conn., a sponsor of the legislation. “Our bill would establish strong federal standards to keep students safe, while giving school staff alternatives to respond to challenging situations in the right way.”

The move comes little more than a week after Democrats secured control of the House of Representatives in the coming legislative session and signals that they will use their new majority status in the body to press for the legislation.

Data released earlier this year by the Department of Education indicates that 122,000 students were subject to restraint or seclusion in the nation’s schools during the 2015-2016 academic year. Children with disabilities accounted for 71 percent of those restrained and 66 percent of seclusion cases.

At present, rules governing the practices vary significantly from one state to the next.

Legislation to create federal standards on the use of restraint and seclusion in schools passed the House in 2010 but failed to secure support in the Senate.

The latest bill was introduced this week in the House by Reps. Don Beyer, D-Va., and Bobby Scott, D-Va., the top Democrat on the House education committee. A Senate version of the bill was introduced by Murphy and Sen. Patty Murray, D-Wash., the lead Democrat on the Senate education committee.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

Please Support H.R. 5658

Congressman Glenn Grothman (R-WI-06) introduced the Workplace Choice and Flexibility for Individuals with Disabilities Act (H.R. 5658). This bill will restore common sense to the definition of competitive integrated employment and provide increased employment opportunities for people with disabilities. People with disabilities across the country have been denied placements in high-paying jobs because of the regulations that implement the Workforce Innovation and Opportunity Act (WIOA). ACCSES supports expanding opportunities and keeping a full array of options available. We were honored to work with Congressman Grothman and his staff to help draft this legislation. Go to the  ACCSES Action Center  and tell your Members of Congress to cosponsor and pass this important bill to increase employment opportunities for people with disabilities! 
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

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VOR's 2019

June 8 - 12, 2019
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