July 13, 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: Making Ripples
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”      - Mother Teresa

Our lead article this week comes from The Chicago Tribune in Illinois. VOR's own Rita Winkeler, President of the Murray Parents Association, has worked closely with her state representative Charlie Meier to defend ICFs in Illinois. Rep. Meier worked with the state's Auditor General to look into how state funds are being spent. The auditor released a 227 page report this week. It is a thorough, date-driven document, notable both in the depth of research and the level of detail reported.

Rita and Rep. Meier have also been working with reporters at the Chicago Tribune to bring wider attention to these issues.

On VOR's Facebook page, Rita Winkeler wrote:

"From 2012 to 2015 the then Governor of Illinois attempted to closure Murray Developmental Center, a large congregate care center in Illinois. The company (CRA) hired to close the center was hired under questionable circumstances, and the Murray family group, along with the staff at the center, and surrounding communities fought to keep our center open. After a federal law suit, and a new governor we remain open, and are admitting residents. Rep. Meier fought the fight with us throughout the whole ordeal, and continues to fight for the right to choice. This audit of the CILAs (group homes) and the company CRA was initiated by Rep. Meier. We owe him a debt of gratitude. His dedication to our special DD individuals is making a change in how they are cared for in Illinois."

Thank you Rita, for casting your stone across the waters and creating ripples.
Audit Rips Illinois' Oversight of Group Homes for Adults with Disabilities
By Christy Gutowski, The Chicago Tribune, July 19, 2018
A damning state auditor general report released Thursday found systemic failures in Illinois’ licensing and oversight of thousands of taxpayer-funded group homes for adults with disabilities, problems first exposed in a 2016 Tribune investigation that documented substandard conditions and widespread harm.

The nearly 230-page report also questioned whether the state did enough in recent years to ensure the safe transition of more than 400 vulnerable adults from large developmental centers into the smaller group homes. And auditors found the state used “questionable procurement strategies” when it awarded multimillion-dollar contracts to the company managing that transition.

The Illinois Department of Human Services, which oversees the group homes and larger centers, said the critical report is largely based on dated information that does not include changes underway to address the problems.

The audit focuses on the state’s oversight of more than 3,000 group homes — one-third of which are in Cook County — that serve about 10,000 adults with developmental and intellectual disabilities. It covers a four-year period ending June 30, 2016.
The auditors cited findings by the Tribune’s investigative series “Suffering in Secret,” which in late 2016 detailed deaths and mistreatment that occurred inside the group homes and day programs and found the public often was unaware of the tragedies because of secrecy and inaccurate reporting.

Tribune reporters identified 1,311 cases of documented harm dating back to summer 2011 — hundreds more cases than the state had publicly reported. In response, state officials retracted erroneous reports and promised widespread reforms.
Among other issues, Thursday’s report by Auditor General Frank Mautino’s office found communication failures between various divisions within Human Services. For example, the audit noted, officials who license the group homes “routinely” did not receive findings and reports from those who investigate abuse, neglect and exploitation complaints. That allowed vulnerable adults to languish in facilities where serious deficiencies persisted, auditors said.

The audit was conducted after legislators approved a resolution introduced by state Rep. Charlie Meier early last year. Meier said he will push for statewide legislative hearings this year “to improve the way our state cares for the developmentally disabled.”

“This audit reaffirms that more work must be done to improve the quality of care our most vulnerable population should expect to receive. Not all group homes are bad, but there is no excuse for these mistakes to happen again,” said Meier, a Republican from Okawville who has long worked with citizens in his district to keep open the Murray Developmental Center in Centralia. “Since 2015 the state has made improvements; however, there is always room for improvement.”

The Executive Summary of the Auditor General's Report appears below:
State News
Ohio - Closing of residential center for disabled might separate longtime friends
By Rita Price, The Columbus Dispatch, July 14, 2018
Mildred Blumenfeld’s youngest child was about to head to kindergarten when she learned that his developmental problems were unlikely to improve with time. Back then, few families acknowledged having a son or daughter with intellectual disabilities, and doctors often advised parents to opt for an institution.

Blumenfeld confronted both sentiments, dismissed them immediately and set out to become an advocate. Not just for little Lee. For all kids like him.

“If you do something just for yourself, it disappears,” she said.

Blumenfeld is 94 now, and her husband, Ted, is 91. After more than half a century of championing the rights of people with disabilities, they are gathering themselves once again, searching for the answer to a question the Bexley couple had thought was settled: Where will Lee be when they’re gone?
His home of some 30 years, one that the Blumenfelds helped to establish, soon will cease to exist with the closing of Shalom House North.

The 14-bed residential center on the grounds of Wexner Heritage Village, a nursing home and senior community along College Avenue on the East Side, is structurally unsound, largely because of a shifting foundation.

Shalom House operators decided this spring to shut it down and transfer management to a large disability-services company. REM Ohio, along with case managers from the Franklin County Board of Developmental Disabilities, has been working with residents and their families to find new homes.

“This place was such a blessing,” Ted Blumenfeld said. “Never, never, never did we think it wouldn’t be here.”

South Carolina - DDSN board picks new director: 'She's got the passion for the people we serve'

By Tim Smith, The Greenville News, July 19, 2018

The board of the state's disabilities agency has chosen Mary Poole, the director of York County's disabilities agency, to be the new executive director for the state Department of Disabilities and Special Needs. The DDSN board interviewed finalists for the job Thursday morning before making its selection during the commission's monthly meeting on Thursday afternoon.

Poole replaces interim Executive Director Pat Maley, a former state inspector general, who was hired in November to replace former Executive Director Beverly Buscemi. Buscemi had been the agency's chief executive since 2009. DDSN Chairwoman Eva Ravenel said the board is "very excited" about Poole's selection.
"She's got the passion for the people who we serve," she said. "I think she'll do a really good job."

DDSN oversees the care of people with intellectual disabilities, autism, brain and spinal cord injuries through a network of county disabilities agencies, DDSN-run regional centers, and private for-profit and nonprofit service providers.

Last year, The Greenville News reported on multiple problems in the agency, including a waiting list for services totaling almost 8,000; rising rates of critical incidents and allegations of abuse, neglect and exploitation; and a payment system blamed for one county facility's recent decision to stop operating some of its facilities.

Poole will face a host of issues when she comes on board in about a month, Ravenel said, including filling the post of the deputy director of finances, which is vacant. Ravenel said Maley will continue with the agency in some capacity.

Poole has been working in the field of intellectual disabilities for more than 25 years, according to her county agency's website. She has worked in direct care, as a service coordinator supervisor, and as a residential and day program director before becoming director of the York County Board of Disabilities and Special Needs.

Michigan - Feds: Mich. only state to need special ed intervention
By Jennifer Chambers, The Detroit News, July 16, 2018
Michigan is the only state in the nation that failed to meet federal special education requirements and requires intervention, according to a U.S. Department of Education evaluation.

Federal education officials rated Michigan's annual performance on meeting the Individuals with Disabilities Education Act, or IDEA, for the 2016-17 school year as "needs intervention."

Federal officials use both compliance and results data for a “letter of determination” on whether a state "meets requirements," "needs assistance" or "needs intervention."

Michigan’s rating came from its high drop-out rate and low graduation rate for students with disabilities, education experts say, as well as its poor performance in results data, which includes student assessments.

In Michigan, for students ages 3 through 21, federal education officials said:

  • 29 percent of children with disabilities dropped out of school and 63 percent graduated with a regular high school diploma. That's compared to 15 percent and 74 percent in Massachusetts, for example, a state that meets federal IDEA requirements.
  • 19 percent of eighth-graders with disabilities and 39 percent of fourth-graders scored basic or above in math on the National Assessment of Educational Progress, or NAEP. In Massachusetts, it was 46 percent for eighth-graders and 59 percent for fourth-graders.
  • 22 percent of fourth-graders and 34 percent of eighth-graders scored basic or above in reading on the NAEP, compared to 45 percent and 56 percent respectively in Massachusetts.

Michigan is the only state to receive the "needs intervention" ranking, alongside Washington, D.C., Palau and Northern Mariana Islands, a U.S. Commonwealth.

California - Kids Endure Long Waits For Needed Medical Equipment
By Jocelyn Wiener, Kaiser Health News via Disability Scoop, July 20, 2018

Bev Baker-Ajene waited so long to get an adult-sized wheelchair for her teenage daughter, Savitri, that she eventually forgot she’d ordered it.

For the better part of a year, Baker-Ajene pushed Savitri — who has cerebral palsy, spastic quadriplegia and epilepsy — in a child-sized chair that was too small for her. Baker-Ajene said she also has run into problems getting an appropriate shower chair for 17-year-old Savitri. Because of that, she mostly gives her daughter sponge baths in bed.

“It’s ridiculously difficult to get what you need for your child,” said the 62-year-old Clovis, Calif., resident and graphic designer. “I’m tired now. I try not to argue with people anymore, because I need my energy for her.”

Many California children with serious health care needs often wait months, or even years, before they receive essential medical equipment like custom wheelchairs, shower chairs and hospital beds, according to a recent report.

For some children, these long waits aggravate existing health problems, cause pain and pressure sores, or exacerbate developmental delays, said the report, published in May by the Lucile Packard Foundation for Children’s Health.

“It’s a big bureaucratic mess, and kids are suffering,” said Maryann O’Sullivan, an independent health policy consultant and author of the report.

In one case Sullivan documented, a boy with muscular dystrophy started kindergarten in a stroller because his parents could not get him an appropriate wheelchair in time, in part due to the slow insurance approval process. In another case, a 7-year-old with a serious bone disorder has remained in diapers for years while waiting for a state public health program for children to find a vendor to supply him with a modified commode.

A variety of factors lead to the delays. Families say they are often bounced between private health insurance companies and publicly funded programs such as Medicare, Medi-Cal and California Children’s Services (CCS), which provides coverage for 200,000 children with special health care needs. Once families have navigated that bureaucratic maze to obtain approval for equipment, low reimbursement rates paid by some of the public insurers can make it difficult to find vendors willing to provide the equipment.

Juno Duenas, the executive director of the San Francisco-based Support for Families of Children With Disabilities, said appropriate equipment can be essential to a child’s independence, future job prospects and ability to contribute to society.

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!
National News

The following article covers incidents that occurred last week. They have been reported only by third-person accounts, and the details may have been exaggerated or misrepresented by some of those with ideological leanings against choice and a full continuum of care.

For years, the Administration for Community Living (ACL) has promoted a "One-Size-Fits-All" policy of closing ICFs and moving everyone into HCBS waiver settings. VOR has been trying to alter that policy and promote a full continuum of care that includes ICFs for those who need them. We find it difficult to believe that a member of the ACL would support "Reinstitutionalization" as some people contend is Ms. Lazare's intent. We also believe that many of the advocates involved have been misrepresenting Olmstead for years, and are using their narrow interpretation of the Olmstead Decision in their attacks on Ms. Lazare.

At the moment, there appears to be no record of what Ms. Lazare actually said at the meeting. We ask that people read the following article with an open mind, and hope that we can continue to work for a system that offers a full range of supports for this very diverse population.

Talk Of Segregating People With Disabilities Alarms Members Of Congress
by Michelle Diament, Disability Scoop, July 18, 2018

A bipartisan group of lawmakers is looking for answers after a top official at the federal agency responsible for community living reportedly said publicly that she favored “segregation” of people with disabilities.

Mary Lazare, who serves as principal deputy administrator for the U.S. Department of Health and Human Services’ Administration for Community Living, allegedly made the controversial remarks during a keynote address last week at the Autism Society’s national conference in Bethesda, Md. Shortly thereafter, Lazare issued a statement on the Administration for Community Living’s Twitter page appearing to backtrack.

“I regret & apologize for my words at #ASAconf18,” the statement read. “ACL believes ppl w/disabilities have the right & choice to live in the community. We work to expand those opptys & are 100% committed to that mission. We also recognize Olmstead gives people the right to other choices.”

Talking points prepared for Lazare’s appearance at the Autism Society conference that were provided to Disability Scoop by the Administration on Community Living do not make any mention of segregation, but the agency acknowledged that Lazare improvised. There are believed to be no recordings of the speech.
Lazare is also said to have expressed similar sentiments to those shared at the Autism Society conference during another appearance earlier the same day at the National Association of Councils on Developmental Disabilities conference in Oxon Hill, Md.

The comments prompted four federal lawmakers to write to Lance Robertson who heads the Administration on Community Living, asking whether the agency remains committed to its mission which states that “all Americans — including people with disabilities and older adults — should be able to live at home with the supports they need, participating in communities that value their contributions.”

The lawmakers said they were told that Lazare said she believed the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living, and that she prefers segregated and institutional settings.

In addition, Lazare reportedly said she believed that a federal Medicaid rule outlining what types of settings qualify as community-based should be revisited, according to a letter from Reps. Jan Schakowsky, D-Ill., Gregg Harper, R-Miss., and Jim Langevin, D-R.I.

“As reported, your remarks were disturbing, create distrust and raise serious questions concerning your ability to effectively serve in your current position,” reads a separate letter from Sen. Tammy Duckworth, D-Ill.

Even Lazare’s apology, the lawmakers noted, indicated a misunderstanding of the Olmstead decision.
Olmstead “has nothing to do with maintaining choice and everything to do with viewing the segregation of people with disabilities as a violation of Title II of the Americans with Disabilities Act,” wrote the three House lawmakers in their letter.

Senate Approves Delay Of Caregiver Check-In Mandate
By Courtney Perkes, Disability Scoop, July 19, 2018
Bipartisan legislation cleared the U.S. Senate this week that would delay until 2020 the start of a controversial electronic visit verification program to document when personal care services are provided to people with disabilities.

The legislation, which was passed by unanimous consent late Tuesday, was approved by the House of Representatives last month. President Donald Trump has 10 days to sign the bill into law.

“I’m thrilled, although I’ll be even more thrilled when it’s signed,” said Charles Carr, chair of the National Council on Independent Living’s EVV Task Force and a legislative liaison for the Disability Policy Consortium.

Electronic visit verification was mandated by Congress in 2016 as part of the 21st Century
Cures Act and scheduled to start in January 2019. The intent was to crack down on fraudulent Medicaid billing by requiring in-home care providers to electronically check in and out when performing services.

In addition to the one-year delay, the legislation passed this week requires the Centers for Medicare and Medicaid Services to hold at least one public meeting by the end of the year to solicit feedback from patients, caregivers and state health officials.

C on t i n u e d

ACCSES's 2018 Annual Conference begins in nine days and it is not too late to register! The tremendous list of speakers includes:

  • Helen Applewhaite - Branch Chief, Wage and Hour Division, U.S. Department of Labor (DOL)
  • Carol Carr - President and CEO, Achieve Human Services & President, National Council of SourceAmerica Employers (NCSE)
  • Johnny Collett – Assistant Secretary, Office of Special Education and Rehabilitative Services, U.S. Department of Education
  • Todd Culver - CEO, MARO (Michigan)
  • Mary Lazare - Principal Deputy Administrator and Acting Commissioner on Disabilities, Administration for Community Living, U.S. Department of Health and Human Services
  • Ralph Lollar - Director of the Division Long-Term Services and Supports, Disabled and Elderly Health Programs Group, Centers for Medicare and Medicaid Services
  • Joseph M. MacBeth - Executive Director, National Alliance for Direct Support Professionals
  • Linda Mastandrea - Director, Office of Disability Integration and Coordination, Federal Emergency Management Agency (FEMA)
  • Jennifer Sheehy - Deputy Assistant Secretary, Office of Disability Employment Policy, U.S. Department of Labor
  • Stephen Wooderson - CEO, Council of State Administrators of Vocational Rehabilitation

Do not miss out.   Register today!
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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