August 3, 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
VOR and YOU:
Medicaid and You

This week, a television station in Idaho aired a feature on the importance of Medicaid to people with Intellectual and Developmental Disabilities. While there are no current proposals in congress to make changes to Medicaid like there were last year, it is important to remember the importance of Medicaid, and that we need to remain vigilant in protecting this lifeline for Americans with disabilities.
Idahoans with Disabilities Rely on Medicaid Services to Live in Community
By Morgan Boydston, KTVB-7, July 31, 2018
Medicaid’s Adult Developmental Disabilities (DD) Services gives thousands of Idahoans access to the care they need to live.

When the government talks about cutting or capping dollars, anxiety wells up inside many adults who use the DD waivers and their families.

There's no immediate plan to scale back Medicaid spending right now, as was heavily debated in Congress last year. We are told nothing is currently in the works to cut Idaho’s DD program, but KTVB took a close look at some of the Idahoans relying on the services to survive to highlight the program and anxieties surrounding it.
This affects thousands with disabilities living in the community - which wasn't an option for many Idahoans until the last couple decades.

The idea of support dwindling looms over many heads whenever health care is debated.

National News
Federal Disability Policy Office Proposed
By Michelle Diament, Disability Scoop, July 31, 2018
Federal policy is often implemented with little consideration for how it will impact people with disabilities, but that could change under a new proposal.

A bill introduced this month in the U.S. Senate calls for the creation of an Office of Disability Policy.

Housed within the nonpartisan Government Accountability Office, the proposed entity would be specifically tasked with reviewing legislative and regulatory plans to assess how they would affect Americans with disabilities.
If established, members of Congress would be able to request reviews looking at how legislation, guidance and regulations might impact those with disabilities and the individuals who support them, much like lawmakers can already seek input from GAO on matters generally.

Trump Signs Law Delaying Caregiver Check-In Mandate
By Courtney Perks, Disability Scoop, Aug. 1, 2018
President Donald Trump has signed into law bipartisan legislation that will delay until 2020 the start of a Medicaid requirement that personal care attendants electronically check in when they assist people with disabilities.

The one-year delay of what’s known as electronic visit verification, or EVV, was sought by a number of disability rights groups largely because of concerns about privacy and the timeline for states to comply with the mandate which was originally slated to take effect in January 2019. While praising the new law, some advocates said they want to see more legislation passed to narrow the reach of EVV.

“We were grateful to see that the EVV delay
legislation became law,” said Nicole Jorwic,director of rights policy for The Arc. “It’s a good first step of fixing the underlying issues that we have seen around implementation at the state level around the country.”

Trump signed the legislation late Monday, but advocacy groups plan to strategize on what comes next.

State News
New Jersey Halts Admissions for Troubled Group Home Company
By Audrey Quinn, WNYC, August 3, 2018
In August 2012, the Saccoh family thought they’d finally found a good home for the youngest of the family’s eight adult siblings, near their home in Trenton.

Abdulaye, then twenty, is autistic and intellectually disabled. A quick-to-laugh computer whiz and Special Olympics track star, he’d spent two years at the North Jersey Developmental Center after he started having behavioral issues at the age of 18.
The family was eager to move him out of an institutional setting when Bellwether Behavioral Health approached them and offered Abdulaye a new placement.

“We were like, ‘Finally!’ ” his sister Fatou remembers thinking. “They told us that they had a program that will fit his needs and he's going be placed in a group home,” says his mom, Emma Adoula.

Bellwether gave Abdulaye a spot in one of their Branchburg homes.

“It’s a beautiful house,” Fatou observed when she visited Abdulaye in his new setting. “It’s clean, he’ll be comfortable here.”

Bellwether Behavioral Health is a private equity-owned developmental disability services company based in Delaware. It's also gone by the name Advoserv. For decades it’s offered group homes and day programs to people whose care needs qualify them for Home and Community-Based Services Medicaid waivers, funding dispensed by state disability agencies.

Concerns over Bellwether’s treatment of clients
has lead state agencies in New York, Maryland, Delaware, and Florida to cut ties with Bellwetherfacilities. But New Jersey’s Division of Developmental Disabilities continued to defend the company, which has a reputation of taking clients other group homes turn away. Bellwether has 62 licenses across the state and serves over 450 New Jerseyans.

The longer Abdulaye stayed in the Branchburg home, the more his family became concerned. He didn’t seem to be receiving any kind of therapy or vocational development, and he appeared anxious when they visited.

“He was looking like somebody who was not eating,” Emma says. “His body was just a big skeleton standing there.”

House staff brushed off her concerns, but over a year she says the once broad-shouldered 6’5” Abdulaye lost nearly 100 pounds. Fatou kept photographs on her phone to document the growing number of scratches and other wounds the family found on his body. At one point, he had a broken clavicle.

Such injuries are weekly occurrences at Bellwether group homes across the state, according to records from New Jersey police departments obtained by WNYC.

Ohio Presses Ahead on Controversial Medicaid ‘Electronic Verification’
By Rita Price, The Columbus Dispatch (via the Alliance Review), July 29, 2018

Ohio won’t be taking advantage of new legislation that allows states to delay for a year the required implementation of “electronic visit verification” systems, which use technology to log the visits of home-health workers and personal-care aides.

The decision by the Ohio Department of Medicaid to stick to the current timeline disappoints many consumers and advocacy groups. The initial rollout of the system has been far from popular, drawing complaints about glitches, a lack of communication and training and — perhaps the most contentious issue — what many view as an invasion of privacy.

“Ohio is the only state that is GPS-tracking people,” said Alicia Hopkins, an Akron resident and disability-rights advocate who has been leading an online campaign against “invasive” electronic visit verification. “What about our civil rights? You’re forcing us to use this and not accepting any of our input.”

States are being required to establish some type of electronic verification system as part of a federal push to reduce Medicaid fraud. Ohio’s uses repurposed cellphones with GPS monitoring capability, and the devices are supposed to remain with the consumer wherever they receive services.

New York-based Sandata Technologies has a seven-year, $66.5 million contract to administer the system in Ohio.

In addition to the privacy worries, Hopkins and others say the methods aren’t likely to work well for people with significant developmental and intellectual disabilities, a group scheduled to be using electronic verification next spring. The federal legislation recently passed by Congress would let states postpone implementation until January 2020.

Texas - Couples Feel Pressure To Divorce To Help Their Kids With Disabilities
By Sara Coello, The Dallas Morning News via Disability Scoop, July 30, 2018
Three-year-old Annalynne Magallon has cerebral palsy, but her family is ineligible for Medicaid to help pay for her care because her father earns too much at the Fort Worth Police Department.

“He’s putting criminals away who are getting Medicaid and federal benefits that we can’t get,” said Brandon Magallon’s wife, Jayme.
The taxes they pay are going to cover criminals’ benefits.

They’re among couples who have been pushed to consider divorce as a way to provide long-term care for their children with disabilities and illnesses.

Jayme Magallon knows what benefits would be available to her if she were a single mother, so she and her husband discussed divorcing to qualify for coverage that would pay for Annalynne’s medical equipment.

The Burleson couple decided against splitting up, for religious reasons. Now Jayme Magallon just tries to ignore the bruises she gets every time she has to lift Annalynne’s heavy wheelchair into their car.

Working families who have children with disabilities can get help from the Medicaid buy-in
program, but they can’t qualify for it if they earn more than 150 percent of the federal poverty level.
Texas’ limit — $36,450 for a family of four in 2017 — is one of the lowest in the country, a Kaiser Family Foundation survey found.

“There are a lot of families who find themselves in situations like this where they either have to get rid of assets or leave jobs,” said Hannah Mehta, executive director of Protect TX Fragile Kids. “Unless they’ve ever been exposed to this world, it’s not something most people even consider.”

In recent years, families have been able to register on first-come, first-served lists for equipment, home care and other services. But financing has fallen short, and many families may wait more than 10 years to be considered for aid.

Because Texas has declined to expand Medicaid, most of the lists have stretched to thousands of names, with the longest at more than 93,000.
“Every time we get a new governor in, they take another couple million out of the pot,” Dallas health-care attorney Lee Craig said.

Florida - Behavior Therapists Accused Of Billing For ‘Impossible’ Hours
By Daniel Chang, The Miami Herald via Disability Scoop, August 3, 2018

Six behavioral therapists from a company with offices in Miami Lakes and Fort Lauderdale billed the state of Florida for “impossible” days of service that at times would have meant they worked for more than 24 hours in a day, state investigators concluded as part of a Medicaid fraud inquiry.

The therapists, who mostly work with low-income children with autism and other developmental disabilities, were terminated from Medicaid last month. The company that employed them, DRA Behavioral Health, could not be reached for comment after repeated calls to their offices. DRA was among four South Florida behavioral therapy companies sanctioned by the Agency for Health Care Administration in July for failing to pay fines, hiring unqualified therapists and failing to disclose required information to the state.

AHCA officials noted in the announcement that, “It is critical that the agency ensure the health, safety and welfare of the children receiving this service.”

But while AHCA, the state agency that manages Medicaid in Florida, continues its probe into behavior analysis services paid for by Medicaid, schools and programs that provide the therapy to children say the agency is dragging out authorizations for therapy and approvals of new therapists, effectively preventing children from getting therapy for months while reducing the costs to the state.

The Florida Association for Behavior Analysis, a statewide nonprofit that promotes the therapy — which is designed to correct behavioral issues in children with developmental disabilities — said the delays are hurting kids.

“These delays are inexcusable and are causing heartache for so many children and families who desperately need the services provided by qualified behavior analysts,” Nikki Dickens, president of FABA, said in a written statement. “Our state government simply cannot sit back while these vulnerable children suffer as a result of an ineffective and inefficient bureaucratic system.”

South Carolina - SC Early Autism Project pays $8.8 Million to Settle False Claims
By Rob Dew, ABC-Columbia, Aug 2, 2018

South Carolina’s largest provider of behavioral therapy for children with autism is paying the federal government $8.8 million to settle fraud allegations.

After an investigation the US Attorney’s Office says the EAP submitted false claims to Tricare and the South Carolina Medicaid programs for therapy services for children with autism.

Officials say those services were misrepresented, or not provided at all.

The Early Autism Project released this statement:“Early Autism Project reached a financial settlement with the federal government solely to allow us to continue our focus onproviding life-changing Applied Behavior Analysis
therapy to children with autism spectrum and related disorders. We admit no wrongdoing and the Corporate Integrity Agreement with the government clearly states that the terms apply to Early Autism Project only.

Early Autism Project has been cooperating fully with a government investigation of
billing practices that were in place before ChanceLight began operating EAP in 2013.
Since then, we have been taking every possible action to ensure accuracy and compliance with all regulations.


Louisiana - Woman With Autism Allegedly Forced To Eat Mom’s Ashes
By Emma Discher, The Advocate, via Disability Scoop, July 31, 2018

The physical and psychological abuse of a woman with autism held captive for a year in Tangipahoa Parish included forcing her to eat both dog feces and her mother’s ashes, attempted sex trafficking and numerous beatings, according to charges issued late last week against five Amite residents in federal court in New Orleans.When deputies found the 22-year-old woman, identified in the court documents only as D.P., June 30, 2016 she was malnourished, covered in insect bites and living in a 6-by-8-foot chicken-wire cage outside a Rushing Lane home in Amite.

The arrests of Raylaine Knope, 42, and Terry J. Knope II, 45, who are married, and their three adult children — 21-year-old Bridget Lambert and 23-year-old Jody Lambert, the children of Raylaine Knope, and 20-year-old Taylor Knope, the daughter of Terry Knope — were announced a week later by the Tangipahoa Parish Sheriff’s Office.

Investigators said the abuse started after the death of D.P.’s mother, when the 22-year-old had moved to a mobile home at 57509 Rushing Lane in August of 2015. D.P. is related to Raylaine Knope, according to court records.

Terry Knope became the payee for D.P.’s Supplemental Security Income payments, which she received because of her disabilities. Before his arrest, he had received $8,796 in SSI payments that he was supposed to use exclusively for D.P.’s living expenses. Prosecutors allege he kept the money for himself.

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

From our Friends at ACCSES:
H.R. 5658 - Please sign on!
  • Congressman Glenn Grothman (R-WI-06) recently 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!
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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