January 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

Disability Integration Act Re-introduced in Congress

As we told our readers last week, the Disability Integration Act has been re-introduced in the Senate and the House, by Senator Chuck Schumer (D-NY) and Jim Sensenbrenner (R-WI). The bill has been around since Newt Gingrich introduced it in the 105th Congress back in 1997.

This week, Disability Scoop, usually a good source of news and opinion on matters regarding I/DD, published an article on the bill. In the interest of keeping our readers abreast of issues, we are posting the article below:
Bill Would Prohibit Waiting Lists For Community-Based Services
By Michelle Diament, Disability Scoop, January 24, 2019

Community-based services are often much harder to obtain than access to institutional care, but there is a new push underway to change that.

A bill introduced in Congress this month would ensure that people with disabilities who are eligible for institutional care would have the right to access those same services in their own homes, if they choose.

The legislation known as the Disability Integration Act would prohibit states and insurers that cover long-term services and supports from imposing any policies, cost caps, waiting lists or other limitations to community-based offerings that are different from those in place for institutional care.

“Right now a person who needs long-term services and support has a very limited choice where they can receive services and it’s irrational and expensive,” said U.S. Sen. Chuck Schumer, D-N.Y., who introduced the measure, at a recent event with disability advocates. “This bill is ultimately a civil rights bill. At its core it’s about one simple thing, people with disabilities must be treated equally to those without.”

Effectively, backers say that the legislation would strengthen the integration mandate within the Americans with Disabilities Act and bolster the Supreme Court’s 1999 ruling in Olmstead v. L.C. which found that people with disabilities have the right to access services in the community.

Under the measure, states and insurers would be responsible for establishing adequate pay rates for support workers to ensure that workforce issues do not impede access to community-based services. Additionally, they would be required to inform individuals with disabilities of options to receive services in the community before institutionalizing them. And, those who choose to be institutionalized would need to be notified regularly of the opportunity to be supported in the community.

This is not the first time that the Disability Integration Act has been brought forward, but advocates say they have high hopes that it can gain approval this time around. They are urging the House to pass the bill by July 26, the anniversary of the ADA.

The two bills can be found at:

National News:
For Many Kids With Autism, Health Care Needs Go Unaddressed
By Shaun Heasley, Disability Scoop, January 22, 2019

Children with autism are twice as likely as those with other disabilities to have unmet health care needs, according to a new report.

Nearly 1 in 5 kids on the spectrum have gone without a needed medical or mental health service. By comparison, fewer than 10 percent of children with other types of disabilities and just 2.6 percent of those who are typically developing have missed out on such services. The findings come from a study published online in the Journal of Autism and Developmental Disorders.

Researchers from Autism Speaks looked at data collected through the 2016 National Survey of Children’s Health, a government survey of parents of more than 50,000 children across the country. Parents were asked if there was any time within the previous year when their child needed health care — including medical, dental, vision and mental health services — when they did not receive it. If so, the survey asked parents why.

Ultimately, among moms and dads of children with autism, 18.8 percent reported that their son or daughter had forgone needed health care. The reasons included lack of quality insurance, problems accessing family-centered care and family challenges like financial hardship, unemployment and divorce, among other issues.

The high number of children with autism missing out on needed services is particularly acute, the study authors said, since 93 percent of those with ASD had at least one co-occurring medical condition like gastrointestinal issues, sleep problems or depression compared to just 63 percent of children with other disabilities.

Government Shutdown Takes Toll On People With Disabilities
By Courtney Perkes, Disability Scoop, January 21, 2019
People with disabilities are feeling pressure from the nation’s longest-ever government shutdown, whether they work for a shuttered federal agency, live in subsidized housing or receive food stamps, advocates say.

Although some of the primary federal agencies that serve people with disabilities are open, such as the Social Security Administration, Centers for Medicare and Medicaid Services and the U.S. Department of Education, the effects are still widespread. For instance, new direct support workers to help those with disabilities can’t get hired and furloughed parents of children with disabilities are struggling to pay for therapies.

“There are a whole slew of programs that are affected for people with disabilities,” said Sarah Meek, director of legislative affairs for the American Network of Community Options and Resources, or ANCOR. “The federal government
is one of the biggest employers of people with disabilities.”

The most recent federal data shows that as of 2016, 14 percent of the federal workforce had a disability. Meanwhile, 800,000 federal workers are furloughed or have been working without pay since the shutdown began Dec. 22.

“Being a person with a disability tends to cost more,” said Nicole Jorwic, director of rights policy for The Arc. “Any hit to that individual’s bank account and budget is going to hit a little harder. There’s medication, equipment and staffing that they may be paying for themselves.”

The Winter 2018 Edition of the VOR Voice
is available in full color on our website at:

State News:
California - Navigating LAUSD Strike is Especially Tough for Parents of Students with Special Needs
By Matthew Ormseth and Leila Miller, The Los Angeles Times, Jan 18, 2019
Gloria Perez-Stewart was adamant: Her son would not attend school while his teachers at Eagle Rock Jr./Sr. High School were on strike. But for Perez-Stewart and her son, Aidan Villasenor Walker, skipping school involves much more than filling an extra six hours of free time.

Aidan, 19, has autism. At school, he has special education teachers, speech and occupational therapists, and a rigid schedule to help him navigate a world he often struggles to understand.
Losing that network of teachers to picket lines — even briefly — is particularly unsettling for him.

The Los Angeles Unified School District serves more than 60,000 special-needs students, more than 12% of its overall enrollment. The districtwide strike has raised safety concerns for some parents, particularly those whose children have severe intellectual or developmental disabilities. Many have kept their children at home.

Some parents of students with disabilities and some advocates for them say they received no specific information from the district or their schools about how these students would be accommodated. It would have been helpful, they say, in deciding whether to send them to school.
Beth Kauffman, associate superintendent of L.A. Unified’s Division of Special Education, said all pre-strike communication to students and families came from their schools. “We let parents know if they called us or if they reached out to us, but we didn’t send out any kind of blanket call,” she said. “We didn’t know what staff would be attending and coming to work.”

Loreni Delgado, whose 9-year-old son Miles has Down syndrome, said district-run Carpenter Community Charter School in Studio City never told her whether the aide who shadows her son would be working during the strike.

But even if present, she worried the aide might be pulled to help other students on a day with tighter staffing. Delgado also assumed that the special education teachers allowed to help Miles use the bathroom would be on strike, making a decision to keep him home a “no-brainer.”

“When things don’t go the way he expects at school, it’s very difficult for him to have a good day,” Delgado said. “What’s the point of sending him to school when he’s potentially throwing himself on the floor and having people there not knowing what to do with him?”

Arizona - Phoenix Police Arrest Nurse Nathan Sutherland in Hacienda HealthCare Rape Case
By Bree Burkitt, Stephanie Innes and Mackenzie Shuman, Arizona Republic, January 23, 2019
Phoenix police have arrested Nathan Sutherland, a 36-year-old nurse at Hacienda HealthCare facility, alleging he raped and impregnated an incapacitated woman at the center.

The woman gave birth to a boy Dec. 29. Staff members told a 911 operator that they had not known she was pregnant. 

"From the minute we first became aware of the crime, we have virtually worked nonstop seven days a week to resolve this case," Phoenix Police Chief Jeri Williams said in announcing the arrest Wednesday morning.

Williams joined Mayor Thelda Williams at Phoenix police headquarters to provide an "important" update on the investigation into the rape. 
Sutherland is a licensed practical nurse who was primarily responsible for caring for the victim at the time of the assault, according to police. He's worked at Hacienda since 2012. He was booked into Maricopa County Jail on Wednesday, and his attorney said there was "minimum" evidence that his client committed the crime at an initial hearing.
A court commissioner set bail at a half-million dollars.

State nursing records show Sutherland was born in Haiti, completed his certified nursing assistant training at the now-closed Seven HealthCare Academy in Tempe in 2005. He completed his licensed practical nurse training at the for-profit Fortis College in Phoenix in 2011.

He passed the National Council Licensure Examination for Practical Nurses in October 2011. Records show his license allows him to practice in multiple states, and it's not due to expire until April 2020. His self-reported answers to background questions on the application listed no felony offenses and no prior disciplinary actions.

California - El Dorado Hills School where Special-Needs Student Died Will Close
By Hannah Fry, The Los Angeles Times, Jan 22, 2019
An El Dorado Hills school at the center of an investigation over the death of a 13-year-old autistic student announced this week that it plans to close its doors permanently on Friday.

Guiding Hands School, a private school that has served students with disabilities since 1993, made headlines when a student, identified as Max Benson, died after being placed in a face-down restraint by school staff in November. The California Department of Education said the boy was held down for an hour and 45 minutes, according to Sacramento Superior Court records.

El Dorado County Sheriff’s officials said the boy turned violent and had to be restrained by staff to prevent other people from getting hurt. During the restraint, Max stopped breathing and a teacher began CPR until paramedics arrived. He was taken to a Folsom hospital, then to a UC Davis hospital, where he died.
The incident sparked an investigation by sheriff’s officials and the Department of Education. The Sheriff’s Department found no evidence of foul play, but the Education Department suspended the school’s state certification in December, barring it from accepting new students. In January, the department revoked the certification, which meant public districts no longer could use special-education funds to pay for students to attend the school.

Guiding Hands said in a statement Monday that its decision to close makes room for another nonpublic school to take over the four-acre campus. A new school would be able to hire former staffers and enroll Guiding Hands’ students.

New Jersey - CFO for Freehold Nonprofit Pleads Guilty to $115,000 Theft from People with Autism
By Erik Larsen, Asbury Park Press, January 22, 2019
A former chief financial officer for a nonprofit organization that provides services to people with autism pleaded guilty Tuesday to stealing almost $115,000 from the organization for his personal use, announced state Attorney General Gurbir S. Grewal.

Peter Pflug, 56, of Freehold, the CFO for New Horizons in Autism, is expected to be sentenced on March 22 to three years in state prison and will be required to pay full restitution, Grewal said in a prepared statement.

Pflug had been entrusted with use of the organization’s credit cards and checking accounts to make purchases for the nonprofit. The investigation revealed that between June 2015 and February 2018, Pflug used the nonprofit organization’s accounts to make about $114,917 in personal expenditures.
Pflug betrayed the nonprofit that employed him and the clients it served, said Thomas Eicher, director of the Office of Public Integrity and Accountability. “Moreover, he stole from New Jersey taxpayers,” Eicher said. “We have zero tolerance for this type of corrupt conduct.”

New Horizons receives the vast majority of the funding for its programs through a contract with the New Jersey Division of Developmental Disabilities

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?

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The American Health Care Association / National Council for Assisted Living

AHCA/NCAL’s Annual Hill Fly-In Event
Wednesday, March 6, 2019

AHCA/NCAL’s Intellectual and Developmental Disabilities (ID/DD) Residential Services Providers will be in Washington, D.C., for our annual Hill Fly-In event on Wednesday, March 6, 2019.

Participants will hear from Congressional speakers and others. The event runs from 8 am – 10:15 am ET. After the morning event is over, the ID/DD providers will head to Capitol Hill to discuss critical issues, including Medicaid.

If you have any questions relating to this event or would like to attend (it is free to attend for anyone interested, and breakfast and lunch are provided), please don’t hesitate to contact AHCA’s Senior Director of Not for Profit & Constituent Services,  Dana Halvorson .  

VOR's 2019

June 8 - 12, 2019
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