May 17, 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


This week, we are asking our members to support the
Autism CARES Act of 2019
(H.R. 1058 / S. 427)

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2019 (the Autism CARES Act) would reauthorize the federal autism programs that were last authorized by the Autism CARES Act of 2014. The new bill would extend the authorization for these programs through 2024, and expand the original bill to include further research into the causes, diagnosis, and early and ongoing detection, prevention, and treatment of autism spectrum disorder across the lifespan.
The renewal emphasizes the fact that autism does not disappear at adulthood or at any stage of life, and that all of these programs need to account for people with autism across their lifespan.
If you have not already engaged
in our campaign to
Please do so now!
The DIA has been gaining dangerous momentum in the House of Representatives.
The Spring Issue of the VOR VOICE
is now available for download
on our website!
Conference Speakers - June 9th Legislative Initiative:

Melissa Stone - Director, Division of Developmental Disabilities Services, Arkansas Department of Human Services

Amy Lutz - National Council on Severe Autism, EASI Foundation

James Edmondson, M.D. PhD. On Medicaid Managed Care
VOR's 2019
June 8 - 12, 2019
Hyatt Regency Capitol Hill - Washington, D.C.

~ Registration includes a one-year membership in VOR ~



or bring your pre-printed reports to the conference

Hyatt Regency Capitol Hill      400 New Jersey Ave, NW    Washington, D.C.    20001

We have a bloc of rooms available for conference attendees. The VOR Group rate is $259 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.

Call 1-800-233-1234 and mention “VOR’s Annual Conference” when making your reservation.


Can't Attend the Conference This Year?

You can help by donating to VOR
or by becoming a Legislative Initiative Sponsor
National News:
Study Finds ‘Huge Gaps’ In Support For Job Seekers With Autism
By Shaun Heasley, Disability Scoop, May 13, 2019
Many people with autism are not getting the assistance they’re entitled to from a government program that’s supposed to help individuals with disabilities land jobs.

Access to services through vocational rehabilitation varies dramatically from one state to the next, according to a study published recently in the Journal of Autism and Developmental Disorders.
The vocational rehabilitation program is paid for jointly through federal and state funds and offers individuals with disabilities help exploring job opportunities and finding work in addition to support once they are employed.

Congressional Briefing Highlights Needs of Transition Age Youth with I/DD and Behavioral Health Conditions
By Ron Manderscheid, PhD, Exec Dir, NACBHDD and NARMH, Behavioral HealthCare, May 16,2019
On May 15, Representatives Grace Napolitano (D-CA) and John Katko (R-NY), co-chairs of the Congressional Mental Health Caucus, hosted a very important Hill briefing as part of Mental Health Awareness Month. This briefing addressed the decarceration of transition age youth with intellectual/developmental disabilities (I/DD) and mental disorders. Key presentations outlined the issue, its impact, including upon families, and needed solutions.

Napolitano opened with welcoming remarks. She decried the plight of many children and young adults with disabilities, and she emphasized the need to move toward community care. 

Jeff Cross, Benchmark Human Services, and I described the growth and seriousness of this problem. In recent years, growing numbers of transition age youth with I/DD and mental illness have become incarcerated in our county and cityjails.
Although no federal data are available on the extensiveness of this issue, the best field estimates are that these youth now represent between 5-10% of county and city jail populations.

Some of these youth have complex health problems, including mental illness or substance use conditions. Most have fallen off the radar of local health and human services programs. Almost all have failed to make the transition from youth to adult services. County and city jails are not an appropriate care setting for them.

Susan Fowler, a retired dean of education at the University of Illinois and a parent, spoke eloquently about the extremely serious impact of this problem on her son, Chris, and on her own family. She noted that aging out of child services triggered a whole series of events for her son which culminated in jail and probation time.

Reps. Olson, Engel Lead 300 Members of Congress In Bipartisan Effort To Preserve Lifeline For Safety-Net Hospitals
Press Release, May 16, 2019

Representatives Eliot L. Engel (NY-16) and Pete Olson (TX-22) co-lead a bipartisan letter to Congressional leaders requesting a delay to Medicaid Disproportionate Share Hospital (DSH) cuts.

The letter, signed by 300 Members of Congress, calls for a delay to cuts for Medicaid DSH payments for at least two years, or until a more sustainable, permanent solution is reached. The delay must be implemented before the scheduled cuts go into effect on October 1st, 2019. Medicaid DSH payments help sustain hospitals that serve a disproportionate number of low-income and uninsured patients. In doing so, these hospitals incur tremendous uncompensated costs. Medicaid DSH payments help make up for those losses and, in turn, allow hospitals to keep their doors open and continue caring for the most vulnerable among us.

"Medicaid is a critical lifeline for nearly a third of New Yorkers. Just as important are the safety-net hospitals that deliver quality care and serve them," Rep. Eliot Engel said. "These hospitals already operate on slim margins. If Medicaid DSH cuts were implemented, it would have a devasting impact on these critical facilities, potentially leading many to close their doors. We have a moral imperative to ensure that doesn't happen. I thank my colleague Rep. Olson for working with me across the aisle to help prevent these harmful cuts."

"The success of community hospitals in Texas and across America is crucial for folks who rely on Medicaid," Rep. Pete Olson said. "The Medicaid DSH program plays a critical role in ensuring quality care for low income families. Any cut to this program would have an immediate and harmful impact on our country's most vulnerable citizens, including children, the elderly and the disabled. The proposed cuts could cause community hospitals to close their doors, creating an immediate void for essential healthcare. I will continue to fight for this important safeguard for our nation's hospitals and patients. I thank my colleague, Rep. Engel, for working with me to protect patients."

State News:
Oregon: ‘Diagnosis of dying’: How One Man’s Tumor Exposes Deep Flaws in Safety Net for Oregon’s Most Vulnerable
By Brad Schmidt, The Oregonian, May 6, 2019
The diagnosis felt like a death sentence.

Pam Dahl had just driven four hours to visit her adult son, Derrick, at the southern Oregon group home where he received round-the-clock care. A gaunt man with dark hair and blue eyes, Derrick Dahl, 35, was diagnosed in childhood with developmental disabilities that leave him largely unable to communicate.

During the March 2018 visit, Dahl’s mother recalls a caregiver saying in passing that her son had been diagnosed with a dangerous tumor.
Pam Dahl was shocked. She pressed for more information.

She remembered the caregiver saying her son’s tumor was discovered almost six months earlier but doctors thought surgery would be risky. Pam Dahl said she was told that the tumor could be deadly if left untreated. Doctors hadn’t scheduled Dahl for an operation.
Successfully pushing for a fresh examination of her son’s case led to another shock. A cancer specialist gave her hope Dahl’s tumor could be treated. She talked to a Portland doctor who was able to remove a baseball-size mass from Dahl during a November surgery.

“Somebody, somewhere, should have said, ‘You need to get a second opinion,’” Pam Dahl said of the care her son received. “You’ve just given this person a diagnosis of dying.”

Her effort to help her son highlights holes in a state safety net meant to protect vulnerable Oregonians who cannot advocate for themselves. It provides a cautionary tale for any family that lacks legal guardianship of a loved one who, because of a developmental disability, cannot make medical decisions.

Oregon Department of Justice Reviewing Nonprofit for Adults with Developmental Disabilities
By Brad Schmidt, The Oregonian, May 11, 2019
The Oregon Department of Justice is reviewing the activities of a nonprofit that provides care to adults with developmental disabilities following reporting by The Oregonian/OregonLive.

The scope of the review is unclear, but it could last several months.

Action by the state comes after The Oregonian/OregonLive spotlighted an interweaving of family and financial interests within Alternative Services-Oregon. Five relatives of Alternative Services’ executive director have worked for or contracted with the nonprofit, and two board members personally own properties that they lease to the nonprofit.

Alternative Services-Oregon has previously said its board ensured the interested parties were walled off from decisions that affected them, and that its conflict-of-interest policies were followed.
Kristina Edmunson, a spokeswoman for the Department of Justice, said the agency is “now taking a more formal look” at issues involving
Alternative Services-Oregon. She declined further comment Friday, saying “our review is ongoing.”

Alternative Services-Oregon receives about $17 million a year from the Department of Human Services to operate 37 group homes across the state for adults with developmental disabilities. A spokeswoman for the Department of Human Services said the agency was not notified that state attorneys are conducting a more formal review of Alternative Services-Oregon.

According to tax filings, Alternative Services-Oregon paid a total of $2.4 million over five years to family members of Allen-Sleeman, the executive director.

Arkansas - Providers Unsure of Care for Disabled
State: Problem is Being Addressed
By Andy Davis, The Arkansas Democrat-Gazette, May 17, 2019

More than a year after managed-care companies began coordinating the care of certain Medicaid recipients with expensive health needs, some of their employees are still learning about the services that are available for the developmentally disabled, a state official told a legislative task force on Thursday.

Melissa Stone, director of the state Department of Human Services' Developmental Disabilities Services Division, told the Arkansas Legislative Task Force on Autism that she realized the companies' care coordinators needed more training after seeing posts on social media from the parents of developmentally disabled children about their meetings with the coordinators.

"They weren't going well," Stone said. "Moms, in particular, were put out with a lot of us."
In response, she said, she asked the companies to each assign at least two of their employees to receiving training from the department on the services that are available.

Since April 12, she said the coordinators have been meeting in her office every Friday for weekly training sessions. She noted that people with developmental disabilities make up only about 7,000 of the 43,000 Medicaid recipients whose care is being provided under the managed-care initiative.

"We've had a couple of really trying cases that would have been trying for our own staff that have happened in the last 75 days, that I would not have known what I would have done with these particular clients," Stone said. "You put that on top of a new process -- for the DD arena I think it's been a harder transition."

The managed-care initiative is designed to reduce the cost of caring for Medicaid recipients with significant developmental disabilities or mental illness while generating premium tax revenue that can be used to reduce the number of people who are on a waiting list for services for the developmentally disabled.

As of February, about 4,600 Arkansans were receiving the services and more than 3,100 others were on the waiting list.

Arkansas - Autism Services Lacking in Northwest Arkansas
By Andy Davis, The Northwest Arkansas Democrat-Gazette, May 12, 2019
Sarah Thomas stopped speaking just shy of turning 2. Her doctor recommended she be evaluated for autism at the Schmieding Developmental Center in Lowell, one of the only clinics in Northwest Arkansas where specialists diagnose the developmental disorder.

"Your doctor has to send a referral to Schmieding. They call you. You fill out this big stack of paperwork, and then they're like, 'OK, it's going to be nine months or so,'" said Riana Thomas, Sarah's mom.

The Schmieding Center is on track to receive 2,000 autism evaluation referrals this year but can only do about 300, said Dr. Mary Ann Scott, the center's section chief. About 40 percent, or 800, of the referrals complete the process to get on Schmieding's wait list. The list is about nine to 15 months long, Scott said.

Insurance typically won't cover all the needed treatment without an official diagnosis.

Local children on the autism spectrum also struggle to get treatment, a problem parents and professionals attribute to a lack of services and professionals in the field. Simultaneously, autism is more commonly diagnosed in children, some as young as 2.

Thomas walked out after a daylong evaluation at Schmieding with her then 3-year-old daughter with an autism diagnosis, a recommendation to get 20-40 hours of applied behavior analysis therapy a week and uncertainty about how to go about getting the therapy or other resources. Her daughter also needed two hours a week each of physical therapy, occupational therapy and speech therapy, Riana Thomas said.
It took nearly a year for Thomas to get her daughter into applied behavior analysis therapy.

Applied behavior analysis therapy seeks to break down social behaviors step-by-step and provide reinforcements based on a kid's interests. The goal is for the child to exhibit those behaviors in other settings, said Brandon Sikes, a board certified behavior analyst.

Schmieding cannot do more evaluations because it has a limited number of providers who diagnose autism and an evaluation generally takes a provider's entire work day, Scott said.

Diagnosing autism can be difficult because there's no physical medical test, such as a blood test, to diagnose it, according to the Centers for Disease Control. The diagnosis is based on the child's behavior and development.

Dr. Liz Lorah, a board certified behavior analyst and University of Arkansas professor, said children need to be diagnosed at an early age so they receive services as soon as possible. She said it's much easier to close a six-month speaking delay in a 2-year-old, for example, than a 2½-year gap in a 4-year-old.

California - Advocates Call for Increased Funds to Support Californians with Intellectual, Developmental Disabilities
By Natalya Estrada, California Health Report, May 16, 2019

For close to four decades, the Lanterman Act has supported people with intellectual and developmental disabilities in California with a network of centers offering specialized care. Today, there are close to 330,000 adults who depend on the Lanterman Act for the support they need to lead more independent and normal lives.

Advocates, including several state senators and assemblymen, formed a group called The Lanterman Act Coalition and fought for an 8 percent increase in funding for the Lanterman Act. The proposed increase included approximately $290 million to stabilize and restore the system.
Instead, the governor’s May revision of the state budget, released on May 9, increased funding by 4.85 percent.

In an emailed statement, Senator Henry Stern, who helped propose the fund increase and signed a budget request letter with 13 other California legislators, said hundreds of thousands of Californians with these disabilities deserve the opportunity to live a full, integrated life, and the workers who care for them deserve a living wage.

“The support structure serving our IDD community is embarrassingly underfunded. Forty-five percent of surveyed service providers have to turn away or place on a waitlist Californians who need assistance,” he wrote. “That’s a deep, profound moral failure, and it’s on us to ensure that no Californian with an intellectual or developmental disability is denied the care they need.”

Linda Landry, a Los Angeles based council member for Family Voices of California, said services for these specific individuals is in decline and has been for many years.

“We had the Lanterman Act, IDEA for Individuals with Disabilities Education and California Children’s Services. The support needs to be better, because we’re falling behind,” Landry said.

Family Voices of California estimates that 28,000 programs for intellectual and developmental disabilities have closed across the state, which means people are put on waitlists for these services. The funding shortage also means service providers cannot recruit or retain skilled direct care professionals to staff the system.

“We’re losing doctors all over. They’re going to different states,” Landry said.

California - More resources needed for people with intellectual, developmental disabilities in Humboldt County
By Sonia Waraich, The Times-Standard, May 12, 2019
The needs of people with intellectual and developmental disabilities in the county are varied and complex, but advocates say what’s missing is clear.

A lack of resources was at the top of the list of issues people with these disabilities face, locals told state Assemblymen Jim Wood (D-Santa Rosa) and Jim Frazier (D-Discovery Bay) at a hearing of the state Assembly’s Select Committee on Intellectual and Developmental Disabilities in the Eureka City Council chambers on Saturday.

“Need outstrips supply in every area,” said Kim Smalley, behavior analyst and autism clinical specialist at the Redwood Coast Regional Center, one of 21 state-mandated centers across California set up to meet the needs of those with intellectual and developmental disabilities.

Intellectual disabilities are characterized by problems with the ability to learn, reason and
problem solve, among other things, and problems with everyday social and life skills, according to the National Institute of Child Health and Human Development. Developmental disabilities are broader in scope and affect intellectual development, physical development or both, according to the governmental research organization.

Smalley said the center had a good grasp of what this population needs, but it was “a perpetual struggle” to implement programs well with a lack of funding and trained staff.

“We simply do not have enough providers to go around for the needs of people on the Autism Spectrum Disorder at any age group or for people with severe and significant challenging behaviors,” Smalley said.

Massachusetts - State Auditor finds Direct-Care Workers were Bypassed in Funding Boost for Providers
By Dave Kassel, The COFAR Blog, May 17, 2019

The State Auditor has reported that a major boost in state funding in recent years resulted in surplus revenues for human services providers in Massachusetts, but that those additional revenues have led to only minimal increases in wages for direct-care workers.

Meanwhile, the leadership of the Massachusetts House of Representatives quashed a state budget amendment last month that would have raised direct-care wages to $20 an hour. That amendment had been co-sponsored by more than a majority of the House membership.

In a May 8 report, State Auditor Suzanne Bump’s office reported that so called Chapter 257 funding, which was at least partly intended to boost direct-care wages, “likely did not have any material effect on improving the financial wellbeing of these direct-care workers.”

The state auditor examined financial records of 89 human services providers, most of them under contract with the Department of Developmental Services. Among those surveyed providers, Chapter 257 funding helped boost their surplus of revenues over expenses on average from roughly $120,000 in Fiscal Year 2010 to $404,000 in Fiscal 2017, the audit stated. That is an increase of 237%, or an increase of almost 30% a year, in surplus revenues.

However, the audit stated that during that time, the average hourly rates paid direct-care workers increased by only 24% in total, or about 3.1% per year, on average. The audit pointed out that the yearly increase in average direct-care wages only exceeded inflation by about 1% per year.

The audit found that the average hourly direct-care wage was $11.92 in Fiscal 2010, and rose to $14.76 as of Fiscal 2017.

Michigan’s Mental Health System is Failing Many with Severe Autism
By Jill Barker, The DD News Blog, May 16, 2019
I have two adult sons with profound intellectual and developmental disabilities (IDD) as well as friends who have severely autistic family members. What these disabled populations have in common is that they are difficult and expensive to serve, no matter where they live. Finding appropriate services and residential settings is a relentless and frustrating task for most families, especially when choices are deliberately limited to encourage a one-size-fits-all mentality that promotes the idea that everyone can be fully integrated into "the community".

These stories about severely autistic children and adults have many parallels in the world of severe and profound IDD.

“Falling through the cracks” is a phrase that is frequently used to describe what happens to
people with severe autism when they move from school to adult life without the safety net of services provided by the educational system. This also describes what happens to autistic children, many of whom have intellectual and other developmental disabilities, whose problems are too much for the educational system to handle. They are shunted into a world of psychiatric services that were never designed or intended to help people with IDD. 

North Carolina - Group Home Worker Charged with Assaulting Three Patients with Disabilities
By Tina Terry, WSOC-TV, May 10, 2019
A worker at a Statesville group home is accused of assaulting three clients. Investigators said one of them was as young as 12-years-old. 

Brionna Sherrill, 24, worked inside the Bonnie Lane Group Home. Detectives said she was supposed to help people with mental and physical disabilities. She was, however, accused in March of crossing the line and assaulting the three patients.

“The victims who are all mentally, and physically disabled are 20 years old, a 16 year old and 12 years old” said detectives with Iredell County Sheriff’s Office.

“You would hope that someone who chooses to work with those individuals would be more caring and more concerned about these folks than what appears to be at this point in time,” Capt. William Hamby said.

Warrants said that in one case Sherrill raised a victim’s face shield and hit him in the face. In another case, she slapped a client and hit another in the back of the head.

Sherill was immediately placed on suspension pending an investigation into the case and local law enforcement was notified, said Danny F.
officer of RHA Health Services, which manages the group home. He said Sherrill is no longer an employee of RHA Health Services at this time.

“RHA Health Services has zero tolerance for any abuse committed against the people we support, and their safety and well-being are our primary concern. We are cooperating completely with the investigation being conducted by the Iredell County Sheriff's Office,” he said.

Channel 9 pulled state records from the Department of Health and Human Services that showed several problems at the group home since 2018.

In one case someone named Brianna Sherrill was observed smacking a client in the mouth “over his mouth piece and directly on his mouth (about) six times”.

The state said the facility in that case and others “failed to conduct thorough investigations of the allegations” and failed “to request nursing to physically observe all clients” for possible injuries.

Tennessee - Man Charged with Beating Patient in his Care With Belt
By WTVC, May 13th 2019
A 29-year-old Chattanooga man faces exploitation of an adult charges after police say he beat a patient in his care with a belt.

A police affidavit obtained by NewsChannel 9 says the incident happened on January 9th at a home for developmentally disabled patients at 8504 Igou Gap Road. Three patients lived in the home at the time of the incident.

The affidavit says another worker noticed several bruises and abrasions on the head and body of a patient.

Several witnesses told investigators that Tyler Lawaun Evans had become frustrated with one patient's demands for a soda, and at sloppy living conditions.

Louisiana - Arrest Warrant Issued for Man Tied to Filthy Group Homes in East Baton Rouge
By Chris Nakamoto and Erin McWilliams, WBRZ News, May 15, 2019
A judge issued an arrest warrant for a man who has a troubled history of being tied to group homes that have caught the attention of state leaders.

The WBRZ Investigative Unit profiled the squalid conditions residents were living in last year. Following our stories, State Fire Marshal Butch Browning cited Erracia "Eric" Davenport for not following the state's fire code. Browning said Davenport was given a cease-and-desist notice but was still operating after he was shut down.

State Senator Regina Barrow said complaints she received and after watching a story on WBRZ-TV helped her realize something had to be done. There are relatively no regulations for group homes, which allows them to go unchecked and undetected. Barrow authored a bill that would force those running group homes to register them in a database.
"The bill is simply trying to ensure safety for those who don't have a voice," Barrow said.

The bill recently made it out of a senate committee and awaits debate on the senate floor.

"If you want to have a group home, there needs to be some level of registry," Barrow said. "So we know who owns it and how to get in contact with you if something happens and right now we have none of that information."

Barrow said until something is done, our community's most vulnerable people are at risk.

New Jersey - Whistleblower Says NJ Violated Civil Rights of Psychiatric Patients with Disabilities
By Kim Mulford, Cherry Hill Courier-Post, May 16, 2019
A whistleblower lawsuit claims New Jerseyans with intellectual or developmental disabilities were inappropriately diagnosed with mental illnesses, given psychotropic drugs and forced to stay in state psychiatric hospitals long after they were deemed stable enough to return to the community.

As a result, the suit claims, New Jersey routinely violated the civil rights of patients with disabilities. Reportedly kept in overly restrictive institutional settings long after they were cleared for discharge, vulnerable patients with special needs were often sexually assaulted by other patients, and sometimes used to transport contraband, including drugs, the lawsuit claims.
The allegations were made by Micaela Bennett, a former legal analyst who worked primarily at Greystone Park Psychiatric Hospital in Parsippany, Morris County. 

Her lawsuit claims officials at the state Division of Developmental Disabilities, in order to reduce costs, deliberately denied residential services for psychiatric patients who were previously eligible for support.

VOR Bill Watch:

H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

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).


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. 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.

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. Bot issues deserve clean, stand-alone bills.
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's 2019

June 8 - 12, 2019
Hyatt Regency Capitol Hill
Washington, D.C.

Note: Mail in Registration is slow. We recommend registering online.

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