September 14, 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
Congress is active once again, and we ask that our members become active in supporting legislation that provides for our family members with intellectual and developmental disabilities, in opposing bills that would impair their ability to receive services, and to engage in initiatives that inform the public and serve neglected populations of individuals with I/DD.

We encourage readers to stay informed about national, statewide, and local actions that affect the lives of our vulnerable family members..

HR 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.

Representative Bob Goodlatte (R.-VA) introduced our long-awaited bill this week. This is the same bill we worked so hard to enact during the 11th and 112th Sessions of Congress. VOR is preparing our campaign to support this legislation. It is not yet time to act, as members of the 115th Congress are on hiatus next week and the text of the bill has not yet been added to the web site at We will keep you informed. Please be ready for our Action Alerts on the Goodlatte bill, which should be coming to your inbox soon.
Following up on VOR's Action Alert on
HR 3506, a Bill to Renew Money Follows the Person

Earlier this week, we sent out our 2nd Action Alert for Congress to pause and reconsider HR 3506, the EMPOWER Act to renew the Money Follows the Person (MFP) program. More than twice as many of our members and supporters engaged and sent letters to their representatives to voice their concerns about this bill. Nonetheless, it passed the House Energy and Commerce Committee by a voice vote, and will be sent to the full House for a vote. We plan to keep you informed and give you another opportunity to take action.

Representatives supporting the MFP renewal claim that the bill is intended to help people access services appropriate to their needs. VOR is not opposed to bills that help individuals receive the services they want, but we are concerned that MFP only works one way. It only serves people who wish to leave larger congregate care facilities and sign on for waiver services. If the sponsors of this legislation wish to ensure that people receive the care they need, why is there nothing to help people who have been underserved in the waiver system access care in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID)?

MFP does not decrease the waiting list. In fact, people who move from ICFs using MFP often take precedence over the people at the top of the waiting list. MFP has been used to decrease the population of ICFs, thereby decreasing their efficiency and economy of scale. This leads to the closure of ICFs, despite the fact that ICFs are an integral part of our full continuum of care and are supported by CMS.

Thousands of people would like to receive ICF-level care. Why is there not a provision in MFP guaranteeing that when an individual leaves an ICF to move into a waiver setting, their bed at the ICF will be given to someone on the waiting list who desires that level of care, thus ensuring the viability of the facility.

We hope that congress will pause and reconsider the full implications of MFP, and create a bill that meets the needs of all people with intellectual disabilities.
From our Friends at ACCSES:
Please Support HR 5658
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!


Donate to candidates who support our values, and who value our support!
Help Needed: Caring for the Forensic Population

Dear Fellow Members of VOR,

I am a parent and a member of the Governor’s Advisory Board at Porterville Developmental Center in California. The Special Treatment Program serves people with intellectual disabilities who are Regional Center clients. Our residents have been involved in a crime, are submitted through the courts because they are incompetent to stand trial. The clients are forensic clients.

The Special Treatment Program services include an array competency training for court appearances and testing, vocational, educational training, medical, dental, and recreational services in addition to individualized services as needed for the client and his family. The program, through professional support, deals with emotional, self-confidence, anger, drug addiction, and other physical issues.

Porterville Developmental Center Special Treatment Program is unique in the state and supported only with state funds. California does not receive Federal Funding for this program.  

Jails are not suitable for our clients. Jails do not provide proper care or individualized programs and can be very dangerous for a person with developmental disabilities. The need is obvious and many family members of people with developmental disabilities, as well as the judges and people in law enforcement, can relate to the security, safety, supports and services this program provides. The Porterville Developmental Center staff are licensed, professional, creative, and trained to work with this special population. Federal funding would allow this program to serve more clients. Currently, we are limited to serve only 211 persons in the program. The program is full and there is a waiting list. 

Please contact me if you are aware of similar programs in your state. I would like to compare funding sources. Email is preferred. I would like to hear from family members, advocates, and staff persons.  Thank you, I look forward to knowing more about the special programs for this very special population in other states.
Sunny Maden
2345 N. Cameron Ave.
Covina, Ca. 91724
Online Survey

Robyn Powell, a researcher at Brandeis University reached out to us earlier this week. She is conducting a study on sexual and reproductive health care for women with intellectual and developmental disabilities.

Currently, she is seeking family caregivers of women with intellectual and developmental disabilities to complete an online survey . The goal of the survey is to understand the perspectives and experiences of family caregivers about sexual and reproductive health care for women with intellectual and developmental disabilities. Family caregivers are people who provide care for or help in some way a family member with an intellectual or developmental disability.

The survey is available at:

Robyn Powell, MA, JD
Research Associate
Lurie Institute for Disability Policy
The Heller School for Social Policy & Management
Brandeis University
State News
Iowa - Candidates for Iowa Legislature talk Privatization, Worker Rights, Education
By Andy Mitchell, The Daily Iowan, September 10, 2018
Iowa’s privatized Medicaid system dominated conversation in a Monday afternoon forum, where six local legislative candidates took questions from a small crowd at the Coralville Public Library.

One of the first questions in the forum concerned the reported refusal of Medicaid company payments for items such as wheelchairs, shower stools, and nutritional supplements, and how the candidates would address the issue.

Kevin Kinney, the four-year Democratic incumbent for Senate District 39, criticized the 2015 decision to shift the responsibility for the state’s Medicaid system to private managed-care organizations.
He specifically talked about one of his constituents, who he described as a young man who was employed, but unable to travel to and from his job without the help of a mechanical wheelchair, for which he was denied coverage under care of the private companies.

“I have a number of constituents who reach out to me on a weekly basis that are being denied the critical care devices which they need and we need to have governmental legislative oversight,” Kinney said.

Kinney’s opponent, Republican candidate Heather Hora, was not in attendance at the forum.

Patrick Wronkiewicz, a University of Iowa student and Republican challenger to incumbent Joe Bolkcom’s Senate District 39 seat, said he thought Iowa’s current model for privatized healthcare was pushed too fast without fully considering the
consequences. However, he said if elected, he would not push to return to state-run Medicaid.
“This was going to bankrupt our state,” Wronkiewicz said. “Going back to the way it was was unsustainable.”

Bolkcom said the decision to privatize Medicaid after models seen in such states as Kansas was made unilaterally without the consent of the Legislature.

“Medicaid is there for all should you suffer a catastrophic disability or injury; it’s your safety net,” Bolkcom said.

Libertarian candidate for Senate District 37 Carl Krambeck said he would be open to bringing back state-run care for groups like the elderly and the long-term disabled as private companies would not be able to profit off of providing them care. He called the current privatized system “crony capitalism.”

“They’re giving all of this money to private organizations, they’re giving it to their friends, and they’re giving it to a small group of insurance companies that give them money for re-election,” Krambeck said.

His opponent, Democratic candidate Zach Wahls, said he’d support transferring Medicaid back to a government-run system.

Video - The Privatization of Medicaid in Iowa
A look at Iowa's privatized managed care system
From the DD News Blog, Sept. 13, 2018

Washington - Olympia Medical Center Faces Massive Cut in Medicare Reimbursements
By Jesse Major, Penninsula Daily News, September 10, 2018

Olympic Medical Center is urging people to comment on a Centers for Medicare and Medicaid Services proposal that would significantly cut reimbursements for the hospital’s off-site clinics — costing the public hospital $47 million over the next decade.OMC CEO Eric Lewis said Thursday he was unsure how the hospital could absorb the 60 percent cuts to reimbursements for visits to off-site clinics — such as the Primary Care Clinic on Eighth Street in Port Angeles and the Sequim clinics.
“We haven’t thought about that yet,” he said. “What we’re doing right now is focusing on stopping this from being implemented.”
Comments on the proposal are due by Sept. 24.
The changes don’t affect Jefferson Healthcare in Port Townsend or Forks Community Hospital, which are designated as critical access hospitals. The critical-access designation allows rural hospitals with 25 beds or fewer, and which fulfill other criteria, to receive 100 percent Medicare reimbursement.
“Jefferson Healthcare is unaffected by the proposed change because all of our provider-based clinics are located on campus,” said Hilary Whittington, chief financial officer & chief administrative officer for Jefferson Healthcare.
“However, we vigorously oppose the change because we believe it will undermine access to care for the most vulnerable patients on the North Olympic Peninsula.”
Lewis said the cuts OMC would see if the Centers for Medicare and Medicaid Services’ proposal moves forward would only worsen the area’s shortage of health care providers and could increase visits to the emergency room.
The rules would reduce OMC’s expense reimbursement from $118.35 per visit to $47.34 per visit — a 60 percent cut — at its off-site clinics. That would be a $3.4 million loss in funding for next year.
“In my 30 years in health care, I’ve never seen a cut this big,” Lewis said. “We want to inform the public about this proposal then, if they want, they can choose to tell [the Centers for Medicare and Medicaid Services] their comments on it.”

Maine - Behavioral Crises Landing People With Disabilities In ER
by Matthew Stone, Bangor Daily News Via Disability Scoop, September 14, 2018
Kyle Roderick and Robbie Faloon weren’t injured or physically ill, but the local hospital emergency room was the only place for them to go.Both men, who have autism, were living in separate group homes for adults with intellectual disabilities. But due to their tendency to act aggressively and violently, it became dangerous for housemates and group home staffers to be around them.

In the week before he arrived at the Eastern Maine Medical Center emergency department on July 14, 2017, Roderick, 20, headbutted his housemate at a Bangor group home, giving her two black eyes. He had previously punched a group home staff member, overturned a table, broken his tablet and damaged an SUV.

He remained in the emergency room for 35 days.

“It was horrid,” said Roderick’s mother, Danielle Longsworth. “It was heartbreaking.”

Faloon, 30, has ended up in the emergency departments of two different hospitals for extended stays in the past year following confrontations with staff members and housemates at two different group homes.
He spent last Christmas in the emergency room of Houlton Regional Hospital during a 39-day stay after living several months at a Houlton group home. In July, he spent 21 days in the emergency room of St. Mary’s Regional Medical Center in Lewiston. He ended up there after a stay at the New Gloucester group home where he moved from the Houlton emergency room.

“You worry, and you try to contact people and see that everything is going OK for him, or try to get down there,” said Faloon’s mother, Sandy Davis, who lives in East Millinocket. “It’s scary.”

Over the past four decades, Maine has built up a system of services to prevent these kinds of situations. Court decisions and laws at the state and federal levels have guaranteed adults with intellectual disabilities, like Roderick and Faloon, the right to receive state-funded services in their communities, rather than in hospitals or other institutional settings.

But long emergency room stays have become more common in recent years as crucial elements of Maine’s system for serving adults like Roderick and Faloon have disappeared or shrunken.

Maine law requires that the state “maintain an adequate capacity” of crisis beds — temporary placements where people with disabilities can go when they’re experiencing behavioral crises and can’t safely stay in their homes or group homes.

But the state last year lost 16 of its 24 crisis beds when it allowed a contract with an outside service provider to lapse. The Maine Department of Health and Human Services has yet to restore the lost beds, despite a pledge last fall to “move quickly” from former Commissioner Ricker Hamilton.

Texas Influx Of Students Likely To Exacerbate Special Ed Teacher Shortage
By Alejandra Matos, Houston Chronicle via Disability Scoop, September 11, 2018

Thousands of additional children will soon be eligible for special education services after state officials eliminated an illegal cap that artificially tamped down Texas special education rolls for a decade.

But even if the state fully funds the estimated $3 billion cost of providing that extra instruction, educators say one big question remains: Where will schools find up to 9,000 new special education teachers?

Schools already have a hard time recruiting special education teachers, so much so that the state offers incentives such as student loan forgiveness programs. But those incentives aren’t enough to meet the demand, leaving schools across the state struggling every year to find enough teachers to provide specialized services to students. Now as the number of students needing extra services is expected to rise dramatically, finding educators will be even more difficult, state education officials and advocacy groups say.

“Nationally, we do not have enough special education teachers in the country,” said Penny Schwinn, the Texas Education Agency’s deputy commissioner for academics. “Texas is no different. We have shortages at the local level and in almost every state, and that’s because it’s a very high needs field. It’s a very challenging job.”

National Direct Support Professionals Week is Sept. 9-15

National Direct Support Professionals Recognition Week celebrates the essential contributions of more than 3.6 million direct support professionals, direct care workers, personal care assistants, personal attendants, in-home support workers and paraprofessionals who provide quality support to people with disabilities.

These unsung heroes are frequently in the background, serving as the hands, feet and backbone of the direct service industry. They work in people’s homes, residential facilities, day training centers and in the community. They assist people with personal and medical care, learning daily living skills, participating in the community, pursuing employment, developing relationships and more.
South Dakota - A New Credentialing Program for Direct Support Professionals
By Joshua Rundell, Black Hills Works, January 31, 2018
(Yes, we missed this article at the time, but it's even more timely during National DSP Week!)

For Brandi Buskohl, a direct support professional (DSP) at Black Hills Works (BHW), taking a new credentialing class at work seemed like a no-brainer. Buskohl’s role is to help mentor new DSPs, the people on the front lines at Black Hills Works supporting more than 600 adults with varying disabilities. Their role involves teaching people to learn to cook, clean, do laundry, go to appointments, take medications, socialize, and generally become more independent.

“My job is to show DSPs the proper ways to help the people we support,” said Buskohl. “Through our credentialing program, I’m learning new techniques for training. I’m also currently working on a piece for staff appreciation. When our work environment is happy, the people we support feed off that energy. In my two years at Black Hills Works, I’ve seen the individuals I work with grow leaps and bounds. Working here is life-changing.”

The Black Hills Works DSP credentialing program started earlier this fall. There are three stages to the program with various competencies to master. Each stage takes about a year to complete. Currently, 16 DSPs are enrolled. “This credentialing program is based on a national initiative through National Alliance of Direct Support Professionals (NADSP),” said Gayle Steiger, vice president of human resources. “We tried to get funding through the state, but we were denied. So, we’re doing our own pilot because we think it is important—critical, in fact, to our work.”

DSPs in the program have worked at BHW for at least six months—or have experience in the field. “This is very challenging work—and rewarding too—and the number of people with disabilities is growing. More and more people need our help, and many have co-occurring diagnoses,” said Steiger. “We do a lot of training, but there has never been any kind of certification. This credentialing program offers an industry standard. If the pilot is a success, the goal is that employees would have to go through the program upon hiring.”

Sheena Keogh has worked as a DSP at Black Hills Works for a year and a half. She’s excited to be in the credentialing program, where she truly feels her value. “This program is putting more emphasis on how much we’re needed,” she said. “I didn’t realize how much I meant to people.”

Keogh has a cousin supported by Black Hills Works and an 8-year-old son with special needs. These factors influenced her to want to be a voice for those who couldn’t speak for themselves. She looks forward to every credentialing class, highlighting it on her calendar. Some classes last all day, some last for half a day, and some exist in online modules. Currently, Keogh spends one day a week attending her credentialing class.

“There are always new concepts coming out, so I’m glad the program is three years,” said Keogh. “I’m learning a lot and feeling more confident. I’ve already encouraged three other people I work with to consider applying for the program.”

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
National News
Living With Mom And Dad May Impede Access To Autism Services
by Shaun Heasley, Disabiity Scoop, September 12, 2018
As more children with autism enter adulthood, new research finds that residing with family may predict more than anything how much access they have to services.

The findings come from a study published recently in the Journal of Autism and Developmental Disorders.

Researchers looked at 274 adults with autism all of whom had been diagnosed as children by clinicians at the University of North Carolina TEACCH Autism Program sometime between 1969 and 2000.

Caregivers for each of the individuals were surveyed to find out how adults on the spectrum used services, what types of unmet needs they had and what obstacles they faced in accessing help within the previous two years.

Just over half of those with autism in the study lived with family members while 10 percent lived
independently and the remainder resided in a group home or other type of facility.

Caregivers across the board pointed most frequently to a need for daytime activities and employment supports for adults with autism, the study found. Race and age played some role with white caregivers less likely than others to say they didn’t know where to find services and those responsible for older adults reporting a greater need for services.

However, after accounting for various demographic factors, the study found that those who lived with relatives were receiving fewer services, reported a greater need for assistance and had more trouble obtaining it.

Families Of Kids With Special Needs Say Military Is Failing Them
by Dianna Cahn, Stars and Stripes via Disability Scoop, September 11, 2018

Shortly after his baby daughter’s open heart surgery in Boston nearly six years ago, Army 1st Sgt. Joshua Carrigg was reassigned to Joint Base Lewis-McChord in Washington state and an uneasy fit for the family of five became a nearly three-year nightmare.Carrigg and his wife, Austin, said they couldn’t get the services they needed for their two younger children with special needs — including therapy or a school aide for their son with autism. Their assigned doctor denied their baby girl — who also has Down syndrome — the hearing treatment she required and refused to acknowledge their son’s diagnosed life-threatening condition, leaving him in peril, they said.

They thought it was their personal struggle.

But now, in the metro Washington, D.C., area and having restored medical services and diagnoses to both children, the Carriggs know better. Their struggles are all too common for military families with children who have special needs.

Eight years after Congress set in motion legal requirements for the military “to enhance and improve Department of Defense support around the world for families with special needs,” and create an office to provide direct oversight, those families say the military has failed to live up to those requirements.
The Carriggs joined 35 military families last month in a written complaint outlining the Department of Defense’s “failure to follow the law, its history of mismanagement of these critical programs and the inconsistent approaches across the services.”

The complaint, delivered Aug. 9 to the Department of Defense Inspector General, requests an in-depth review and oversight. Their hope is that the repeated promises by the Defense Department to improve its performance for families of those with special needs will finally bear some fruit.

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

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