June 15, 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
News from
VOR's Annual Meeting & Legislative Initiative
We are pleased to announce the success of our 2018 Annual Meeting and Legislative Initiative. VOR members from across the country gathered in Washington, D.C. to share their experience, compare strategies, and advocate for their loved ones with I/DD in the offices of their Senators and Representatives.


Bob and Jane Anthony speak with Larry Innis as Registration opens for the 2018 Annual Meeting
Executive Director Hugo Dwyer and President Joanne St. Amand
Cheri Ellis-Reeves and Karen House of Kentucky
VOR's "Tackling State Legislation Forum"
Mary Vitale delivers her report on Issues Oversight
Liz Belile and Tom Diaz bring Texas back to VOR
VOR's 2018-19 Board of Directors L->R: Larry Innis, Rita Hoover, Mary Vitale, Mary Kay Cowen, Brad Whitehead, Sue Jennings (hidden), Ann Knighton, Linda Lotzi, Rita Winkeler, George Mavridis, Joanne St. Amand. Missing: Cindy Bartman, Terry Lafleur, Mary Reese, Laurie Stengler.


<-- (Left) Ann Knighton conducts the Official Board Swearing-In Ceremony
Due to a printing error, Terri Anderson received two copies of the VOICE Award for distinguished service.
Hugo Dwyer flanked by Team Rita (Rita Winkeler and Rita Hoover) who received a VOICE Award for their work on the State Coordinators program.
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Dinner At The Dubliner
For more pictures from the conference, please visit
VOR's homepage on Facebook
VOR and YOU

VOR's 2018 Annual Meeting & Legislative Initiative:
What you can do if you were unable to attend this year

Unable to come to D.C. this year? We understand, of course. But there are still things you can do to support VOR from the comfort of your own home.

  • Follow us on Facebook and Twitter. Re-post, Like, or Retweet our posts
  • Follow up with your senators and representatives this August, when they come back to their state offices. All of the materials from VOR's Legislative Initiative will be available on our web site after the conference
National News
Nation Spending More On Community Living
By Shaun Heasley, Disability Scoop, June 14, 2018
Government spending on home and community-based services has risen dramatically, with a new report finding that growth doubled year-over-year as funding for institutions declined.

Some $167 billion in federal and state Medicaid funds went toward long-term services and supports across the country during the 2016 fiscal year, up from $159 billion the year prior.
Of that, 57 percent was devoted to community-based services, according to a new report produced for the Centers for Medicare and Medicaid Services.

Significantly, dollars for community-based services rose 10 percent from 2015 to 2016, twice the average rate of growth seen in the program between 2011 and 2015. And, community living accounted for the majority of spending in 29 states and Washington, D.C., up from 28 states the year prior.

Funding for institutions fell 2 percent during the same time period, the report found.
The trend toward community-based services appears to be largely due to shifting expectations for people with developmental disabilities, with 78 percent of spending on this population going to community-based settings.

Meanwhile, most funds for services aimed at people with mental health and substance use disorders as well as older adults and those with physical disabilities went to institutional settings.
However, even among services for people with developmental disabilities, the report found significant variation by state.


Low Medicaid Rates Preventing Children From Getting ABA Therapy
By Michael Ollove, Stateline, via Disability Scoop, June 12,2018
Reagan Wright, who is nearly 14, is devoted to all things American Girls, and dreams of becoming a veterinarian. For a child with autism spectrum disorder, Reagan is considered high-functioning.

Which isn’t to say, her mother Emily Wright emphasizes, that Reagan is not a handful.

“There are social issues,” Emily said. “Troublemaking and keeping friends. She says inappropriate things. And there are outbursts. Lots and lots of meltdowns.” The Wrights pulled Reagan out of public school this year, and she now is taught at home through a state-approved, virtual school.

Reagan’s medical providers recommend she undergo applied behavior analysis, one of the most common and effective treatments for children with autism. Referred to as “ABA” for short, the intensive treatment rewards children with autism for substituting positive behaviors for problematic conduct.

Yet, while the South Carolina Medicaid agency has approved Reagan for the treatment, her mother Emily says it’s unlikely she’ll be able to find a provider willing to accept the amount of money South Carolina Medicaid pays for ABA.

“They won’t say how long their waiting lists are, but I’m told it’ll take years,” Emily said.
The reason, according to a class action federal lawsuit filed last month against the South Carolina Department of Health and Human Services, is that its Medicaid reimbursement rate for ABA “is among the worst in the nation and has severely limited and will continue to limit children’s access to medically necessary legally required treatment.”

A similar class action federal lawsuit was filed late last month in Northern California on behalf of young children with severe disabilities who, the suit alleges, were not receiving the approved in-home nursing care that the lawsuit contends would keep them from institutionalization. That case also alleges a shortage of available nurses willing to accept low Medicaid reimbursement rates.

Both cases assert that the states are violating the law by not providing medically necessary treatment and, as the South Carolina suit alleges, are causing “irreparable injury” to children in need of those services. Neither case specifically asks the states to pay providers more, but legal and health policy analysts say that could be the eventual result. Medicaid, which provides health care coverage to low-income people, is a joint federal-state program.

Book Helps Explain Alzheimer’s To Those With Down Syndrome
By Beth Reese Cravey, Florida Times-Union via Disability Scoop, June 15, 2018

A year earlier, drastic behavioral changes and memory loss had descended like a dark cloud over their son.The diagnosis that finally came — early-onset Alzheimer’s disease — was devastating enough. But for Sherri and Lee Henderson, who founded an Orange Park nonprofit that works with people who have developmental disabilities, the grief was compounded. They could find no books, videos or other resources to help them explain the disease to their son, 29-year-old Trey, who has Down syndrome, in simple terms that he could understand.

“I couldn’t find anything to use … There was nothing to explain the process of the disease,” Sherri Henderson said. “I just got angry.”

So she created her own resource. She wrote “Picture Memories: Understanding Dementia,” a short but compelling picture book. It describes how the disease slowly robs its victims of the “picture memories” their brains began taking when they were small, pictures of people, places and things.

The book has since been endorsed by local and national experts in the field, including the head of the National Down Syndrome Society, not only for those who have Alzheimer’s and developmental delays but for young relatives of others with the condition, as well as caregivers and adult family members.

State News
Nebraska - More than a Decade after Mental Health Reform began in Nebraska, Availability of Care an Issue
By Riley Johnson, Lincoln Journal-Star, June 10, 2018
Kasey Moyer remembers feeling hopeful in 2004 as she watched then-Gov. Mike Johanns sign a mental health care reform bill that would shift the focus of treatment from state psychiatric hospitals to community care.

“We were really excited about transformation,” said Moyer, executive director of the Mental Health Association of Nebraska.

But 14 years later, that promise of reform remains unfulfilled, she and other mental health advocates and care providers say.

The system that serves more than 32,000 Nebraskans each year is plagued by care provider shortages in 88 of the state’s 93 counties, long waits for service and few beds for those whose conditions deteriorate and require hospital care.
Hospitalizations because of mental illness surged by 20 percent across the state between 2007 and 2014, adding up to 85,000 stays during that time period, according to a report that assessed the state's behavioral health needs.

Concern is also growing that more people with mental illness are ending up in jail or the state's prisons, which now operate their own mental health unit.
Since 2003, the state has eliminated more than 200 inpatient beds at its three psychiatric hospitals as it poured the corresponding money into community services, according to the Nebraska Department of Health and Human Services.
But despite increases in state mental health spending per capita, adequate reimbursement remains an issue, and it has pressured some programs to close, care providers say.

“(The people) went to the community, and the money didn’t follow,” said Tom Adams, who recently retired as executive director of the National Alliance on Mental Illness for Nebraska.


The above story covers the entire mental health system in Nebraska. Currently, the state is evaluating plans to close the Beatrice State Developmental Center.

Ohio - Direct-care Agency Bumps Pay to Attract New Workers, Reduce Turnover
By Rita Price, The Columbus Dispatch, June 15, 2018
Saying its front-line workers have been overburdened and underpaid, a local agency that provides support services for people with disabilities is raising its starting pay rate by nearly 28 percent, to $13 an hour.

“They haven’t just gone that extra mile. They’ve gone about five extra miles for us,” said Matt Hobbs, human resources director at Boundless. “These employees are the heart of what we do.”

He and other administrators are taking “a leap of faith,” hoping that higher wages will attract workers and reduce soaring overtime and staff turnover costs. Ohio and most other states throughout the nation are facing a severe shortage of workers who provide support and care for people with developmental and intellectual disabilities.

In a special report in April, The Dispatch wrote about how that workforce crisis is affecting thousands of people with disabilities and their families as wages rarely exceed $11 to $12 an hour. Turnover rates approach 50 percent.

John Martin, director of the Ohio Department of Developmental Disabilities, praised the change at Boundless. “From our perspective at the department, we are really impressed when providers do everything they can to financially support their workforce,” Martin said Thursday.

“We like to hear it.”
The new pay ranges at Boundless affect about 250 workers and were effective Sunday, Hobbs said. Starting pay is now $15 an hour for site supervisors and $17 for assistant managers. The starting pay for a new direct-support worker had been $10.17 an hour before the raise.

“I think it’s a step in the right direction,” said Mark Davis, president of the Ohio Provider Resource Association, which represents disabilities-services agencies such as Boundless. “I need to know more about how they’re doing it, to see if it’s a viable model for others.”

Pay for direct-support workers who provide community-based services is largely tied to Medicaid reimbursement rates set by states, and increases over time have been both infrequent and modest.

Boundless employees, who provide care and support for people in residential centers and community homes, are among the relatively few private-agency support workers who have union representation. That’s because the agency once was aligned with Franklin County, and when it privatized, collective bargaining continued.

Feds fault Minnesota for Inadequate Oversight of Adult Day Centers
By Chris Cerres, Star-Tribune, June 14, 2018
The state agency responsible for protecting vulnerable adults failed to provide adequate oversight over 20 adult day centers, which contributed to numerous health and safety violations.

The problems were disclosed in a federal audit released this week by the Office of Inspector General for the federal Department of Health and Human Services. Federal inspectors made unannounced visits to the adult day centers in early 2017 and found that all 20 of the centers reviewed failed to comply with state licensing requirements.

Overall, the agency found 200 violations of health, safety and administrative requirements at the adult day centers, which primarily serve seniors and adults with disabilities, according to the inspector general’s audit report.

The violations ranged in severity from peeling paint and loose plaster to hazardous chemicals and a knife left out in the open and easily accessible to clients. The federal inspectors found 81 instances of noncompliance with health and safety requirements, as well as multiple violations of state record-keeping and background study requirements. The federal audit was focused on adult day centers that serve older Minnesotans enrolled in Medicaid’s “Elderly Waiver” program, which helps low-income seniors live more independently by paying for certain services, such as those provided in the day centers.
Roberta Opheim, the state ombudsman for mental health and developmental disabilities, said the federal audit raises broader concerns about whether DHS is doing a thorough enough job inspecting adult day centers for vulnerable adults.
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The federal agency determined the problems stemmed from low staffing levels at the Minnesota Department of Human Services (DHS), which licenses 195 adult day centers in cities and towns across the state, from Mankato to Hermantown.
A staff shortage prevented the agency from performing routine inspections of the centers, including re-licensing visits every two years, the report said.

The audit comes as DHS, the state’s largest agency, faces widening questions over its oversight of state-licensed programs that serve tens of thousands of vulnerable Minnesotans, including children, seniors and people with disabilities.

Indiana - Task Force For Assessment Of Services & Supports For People With Intellectual & Developmental Disabilities To Meet In Valparaiso
Updated June 15, 2018

The next meeting of the Task Force for Assessment of Services & Supports for People with Intellectual & Developmental Disabilities will be held on Wednesday, June 27, at the Porter County Community Foundation, 1401 Calumet Avenue in Valparaiso, Ind., from 10 a.m. to 2 p.m. CDT.

The meeting is open to the public and will be streamed live. The link to the livestream is:

Public comment will occur at the beginning of the meeting so the task force can receive input regarding services and supports for people with disabilities.

Requests for accommodations should be made by contacting Kristina Blankenship at [email protected] at least 48 hours in advance of the task force meeting.

The task force was established by House Enrolled Act 1102 in the 2017 session of the Indiana General Assembly and will be chaired by Lieutenant Governor Suzanne Crouch. The task force members were named by Governor Eric J. Holcomb in October, and will prepare a complete plan for implementation of community-based services provided to people with intellectual and other developmental disabilities.

For more information, visit: www.in.gov/fssa/ddrs/5455.htm.
From our Friends at ACCSES:
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!
CALENDAR:
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
www.ahcaconvention.org

Indiana - Task Force to Examine Support Needs for Hoosiers with Disabilities

A state plan for the support needs of Hoosiers with intellectual and developmental disabilities will get an update soon for the first time in 20 years. A new state task force aimed at helping the estimated 100,000 Indiana residents has scheduled meetings across the state.

The link to the livestream can be found here.
Dates, times and location for each meeting of the task force are as follows:
  • Wednesday, June 27, 2018, 10 a.m.--2 p.m. CT, Valparaiso
  • Wednesday, Aug. 22, 2018, 11 a.m.--3 p.m. ET, New Albany
  • Wednesday, Oct. 17, 2018, 11 a.m.--3 p.m. ET, Columbia City
All meetings are open to the public and will be streamed live. Public comment will occur prior to the start of each meeting to provide input regarding services and supports for people with disabilities. Requests for accommodations for meetings of the task force should be made by contacting Kristina Blankenship at [email protected] at least 48 hours in advance of the task force meeting.
For more information, visit:

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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