April 27, 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's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
VOR 2018 Annual Conference and Washington Initiative
June 9 - 13, 2018
All meetings will take place at the Hyatt Regency Capitol Hill, 400 New Jersey Ave., NW, Washington, D.C.
Saturday, June 9, 2018
Registration: Network with families from across the country mmmmmmmmmmmm Noon
VOR Board of Directors Meeting & Report to Membership mmmmmmmmmmmmm 12:30 pm
          Annual meeting of the VOR Board of Directors, open to all members
          Committee Reports and Presentations
          Time will be provided for member questions and comments
Installation of VOR 2017-2018 Officers and Board Members mmmmmmmammmmm 3:30 pm
Reports from the States mmmmmmmmmmmmmmmmmmmmammmmmmmmmm 4:00 pm
          Participants report on news from their states. Session is moderated by VOR Board Members
Sunday, June 10, 2018
Registration: Network with families from across the country mmmmmmmmmmmm 11:30 am
VOR Legislative Initiative 2018 mmmmmmmmmmmmmmmmmmmmmmmmmmm Noon
      Opening Remarks - Joanne St. Amand, President and Hugo Dwyer, Executive Director
      Panel Discussion on State Advocacy – Liz Belile (TX). Susan Jennings (PA), Rita Winkeler (IL)
      Guest Speakers – Kate McSweeny, Vice President on Govt. Affairs & General Counsel at ACCSES
     (Other speakers TBA)
Legislative Briefing mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 3:00 pm
           Panel Discussion and Issue Briefing. Folders for Congressional visits will be distributed.
Awards and Events mmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm 5:00 pm

VOR’s Sunday Dinner at The Dubliner - 7:00 pm
Sunday Dinner at The Dubliner is optional. The price is $35 per person. Alcoholic beverages are available at an extra charge.
We ask that you make a reservation in advance.

Monday, June 11 – Wednesday, June 13, 2018
The Washington Initiative
Visits to Capitol Hill - Personal meetings with Members and Congress and their staff are the most effective way to educate and influence federal lawmakers. Join VOR members and advocates from around the country to convey the importance of residential choice and family decision-making to Members of Congress. Be sure to plan enough time to cover your state’s Congressional Delegation.
Monday, June 11                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm
Tuesday, June 12                                    Informal De-briefing mmmmmmm 6:30 - 8:00 pm

To register for the conference and legislative initiative or make a dinner reservation at the Dubliner, go to:


VOR Members:
____        $90 per member if paid by April 30, 2018
____       $110 per member if paid after May 1, 2018
Non-VOR Members:       (Fee includes 1 year membership (Reg. $45)
____         $125 per person if paid by April 30, 2018
____        $150 per person if paid after May 1, 2018

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 $279 for single or double rooms, plus tax, per night. Larger rooms & suites are also available.
To make your reservations online, go to:
If you do not have internet access, c all 1-888-421-1442 and mention “VOR’s Annual Conference” when making your reservation.

Congressional Lists Are Available NOW!
It's time to start making appointments for with your legislators for
Hill Visits during the Legislative Initiative, June 11 -13

Over the past two years, the Des Moines Register has been covering the state's transition to Managed Care for its Medicaid System. Below is a Pulitzer Prize-Winning Editorial from April of 2017, followed by an article from January and an update on the passage of a recent bill aimed at cleaning up the system.
(Special thanks to VOR's Jill Barker for bringing this series to our attention)
Editorial: Privatized Medicaid is Worst Prank Ever
By Andie Dominick, Des Moines Register, April 1, 2017

Saturday was the first anniversary of Gov. Terry Branstad’s Medicaid privatization experiment. On April 1, 2016, Iowa abandoned state management of the $4 billion health insurance program for more than 500,000 poor Iowans and hired three for-profit insurers to take over.

One year later, the entire ordeal is like an April Fool’s joke with no end.

The joke is on low-income Iowans who have lost access to health services. These include home-bound, disabled people who rely on daily visitsfrom caregivers.

The joke is on numerous health care providers underpaid or not paid by the managed care companies. These include an Iowa nursing home forced to borrow $150,000 while waiting for reimbursements, a mental health facility owed $300,000, and a family planning clinic that finally had no choice but to close its doors. One insurer recently notified patients it may stop covering services at Mercy Health Network, which has more than 200 hospitals and clinics across the state.

The joke is on taxpayers now funding insurers’ administrative costs to the tune of hundreds of millions of dollars annually. Taxpayers will also bankroll the additional $130 million Iowa agreed to pay MCOs in October after they complained about losing money.

And Iowans get a good ribbing every time Branstad says his privatized Medicaid is accompanied by “unprecedented transparency.”

There is nothing transparent about any of this. Just the opposite.

Bill Would Allow Iowa’s Disabled to Avoid Managed Care in Medicaid
By Clark Kauffman, The Des Moines Register, January 17, 2018

Tens of thousands of disabled Iowans who rely on Medicaid would no longer have to deal with private managed-care companies under a bill now being considered by state lawmakers.

Senate File 2013 would create an exemption from the managed-care component of Medicaid for disabled and elderly Iowans who rely on long-term support services such as housing, meals, employment and transportation.

Such a change likely will face stiff resistance from GOP lawmakers who support managed care and don’t want to create a two-tiered system of Medicaid, with hospital patients forced to deal with the cost-containment efforts of managed-care organizations while nursing home residents and people with lifetime disabilities bypass the MCOs entirely.

The Iowa Health Care Association and the Iowa Association of Community Providers are backing a bill that directs the Iowa Department of Human
Services to terminate its contracts for long-term support services with Medicaid’s managed-care companies.

The Iowans who receive those services would then be transferred to a Medicaid-funded program that would be administered by the state on a fee-for-service basis.

Shelly Chandler of the Iowa Association for Community Providers said the bill would benefit thousands of Medicaid-dependent nursing home residents as well as the 39,000 disabled Iowans who rely on Medicaid for home- and community-based services such as meals, housing, employment and transportation.

She noted that 37 of the 39 states that have moved toward a privately administered form of Medicaid have exempted those populations from managed care because of the beneficiaries’ recurring nonmedical needs.

Only two states — Iowa and Kansas — have opted to use private, for-profit managed care organizations to oversee services for intellectually disabled people receiving home- and community-based services.

By its very Design, Managed-Care Medicaid Discriminates Against Severely Disabled Iowans
By Bill Dodds, The Des Moines Register, January 26, 2018
By its very design, managed-care Medicaid discriminates against disabled Iowans who require costly, long-term treatments simply to live in their communities. It’s the only way today’s managed-care organizations (MCOs) can deliver on their promise to slow the growth of Medicaid spending and generate profit for shareholders.

Iowa, like many states, has sought to gain control over the increasing costs of its Medicaid program by doing away with a state-run system in favor of managed care. This has resulted in state contracts with multiple managed-care organizations in an attempt to incent these companies to compete in Iowa for Medicaid members by offering services that best meet their needs while simultaneously reducing costs. 

This might sound good in concept but is difficult to achieve in reality, especially for recipients who have severe mental illness and disabilities. At Optimae, we have seen this play out daily in the lives of the more than 5,300 Iowans we serve.

It is virtually impossible for an MCO to determine which of the millions of units of services provided each year is truly “medically necessary,” given that more than 600,000 Iowans receive services under Medicaid. To compensate, the companies focus on managing the most expensive services, especially those that are long-term. This includes longer term inpatient and outpatient services, including home health and home- and community-based services for individuals with disabilities, and nursing and residential care facilities.
AmeriHealth's Dr. Brian Morley testified that it wasn't necessary for an in-home care patient to receive daily assistance to clean himself after bowel movements.

These services represent a disproportionate percentage of the total cost of Medicaid, making them a target for cost reductions in the form of lower payments for or a reduction in services. That means fewer and less intense supports for the Medicaid members who rely on them to live in their communities. This is the only way the MCOs can survive. 

Additionally, the MCOs in Iowa and most other states are publicly traded, for-profit companies. Their management is under pressure to constantly produce better financial results for shareholders, meaning taxpayer dollars that previously paid for Medicaid services are now set aside for profits. This puts the most expensive services at even greater risk for reductions by the MCOs regardless of the outcome. 

Which brings us to the core of the issue. 
This discrimination has serious effects on the health and quality of life of these individuals, their families and friends and the communities where they live. Iowans have a long and proud heritage of taking care of their most vulnerable citizens, especially those with disabilities. Managed care, as it currently exists, seriously damages that tradition and the citizens who rely on it.

Iowa House Passes Medicaid Cleanup Bill in Effort to Address Managed Care Woes
By Brianne Pfannenstiel, Des Moines Register, March 8, 2018
The Iowa House of Representatives approved legislation Thursday that lawmakers said would begin to fix some of the problems that have plagued the state's Medicaid system. 

“We have all been contacted and received emails from our providers and Medicaid members on the implementation of managed care," said Rep. Dave Heaton, R-Mount Pleasant. "We know that there have been some bumps in the system, and the governor has recognized some of those difficulties that we are having. As a Legislature, we thought this bill and this amendment was an opportunity to address some of these concerns and encourage our managed care program to operate smoother."

House File 2462 would require those managed care organizations to pay providers within the timelines specified their contract and to provide reasons for their denials of claims.

It also says that if a member successfully appeals a denial of services, that company must continue providing the services for a period of time to be decided by the Department of Human Services director. Currently, some patients are able to win their appeal but then quickly are denied services again after the company re-evaluates their circumstances. 

The bill would make numerous other technical changes to the current Medicaid system.

Lawmakers approved the bill 97-0 and sent it to the Senate for consideration.

Rates of Autism Continue to Rise, New Data Indicate
Many children still diagnosed late, after age 4
By Jim Dryden, Washington University School of Medicine, April 26, 2018
New statistics indicate rates of autism in children have continued to increase. However, the rates have increased only modestly, suggesting there may be a leveling off.

Still, researchers found that many children aren’t getting diagnosed until age 4 or older. The older a child is at diagnosis, the harder it is for health-care professionals to intervene and change the trajectory of autism spectrum disorder. Children with autism often face social challenges, communication problems and intellectual deficits, but research suggests some of those hurdles may be overcome with early, intensive therapy.

The new statistical findings, from the 11-center Autism and Developmental Disabilities Monitoring Network, which includes Washington University School of Medicine in St. Louis, are based on data from more than 10,886 children. The results are published April 27 in the Centers for Disease Control and Prevention’s “Morbidity and Mortality Weekly Report.”

In 2014, the most recent year for which comprehensive statistics are available, researchers found that 1.7 percent of 8-year-olds (1 in 59) in the study had a diagnosis of autism spectrum disorder. That compares with 1.5 percent (1 in 68) in 2012. This increase could indicate an improvement in the identification of autism spectrum disorder, particularly in previously underdiagnosed minority populations, among other factors. Prevalence estimates in the 11 communities represented in this report ranged widely, from a low of 1.3 percent to a high of 3 percent.

“I think this shows that the prevalence of autism in the U.S. is continuing to show signs of steadying,” said John N. Constantino, MD, one of the study’s
authors and the Blanche F. Ittleson Professor of Psychiatry and Pediatrics at Washington University. “Unfortunately, however, it appears many kids still aren’t getting diagnosed early enough to get maximum benefit from therapy.”

Some 39 percent of the children in the study who were diagnosed with an autism spectrum disorder didn’t receive such a diagnosis until they were over 4 years of age, added Constantino.

“It remains a priority to diagnose autism earlier and begin intervention sooner, especially given recent research suggesting that higher intensity and duration of early developmental therapy for children with autism is associated with significant improvements in outcomes,” he said.

A higher percentage of white children than African-American and Hispanic children were identified as having autism spectrum disorder. That gap, however, is narrowing, which m ay be due in part to increased efforts to diagnosis children in minority communities.
Despite the narrowing gap, minority children with autism are disproportionately affected by intellectual disabilities related to the disorder.

Some 44 percent of African-American children with autism also have intellectual disabilities, compared with 22 percent of white children with the disorder.

“That underscores the necessity of resolving racial disparities in access to diagnostic and therapeutic services,” Constantino said.

Despite Law, Funds To Address Wandering Remain In Limbo
 By Hannah Long, Disability Scoop, April 23, 2018
Though federal legislation addressing wandering among people with autism and other developmental disabilities was approved as part of a $1.3 trillion government spending package in late March, advocates are still fighting to ensure that the program gets funded.

Kevin and Avonte’s Law is set to provide $2 million annually through 2022 for grants to local law enforcement and nonprofit agencies. These grants can be used to purchase electronic tracking devices for families of those at risk for wandering, or for education, training, notification systems and resources to better address the issue.

However, communities will only be able to take advantage of the grants if the law is financed. Its passage with the federal spending package only authorized the legislation to be funded, but did not provide a source of funding.

“We’re really excited that this law has finally passed,” said Lori McIlwain, co-founder and executive director of the National Autism Association. “We’re just now in the minutia part where we’re trying to get the actual dollars and make it official.”

Advocates are hoping that the U.S. Department of Justice will allocate discretionary funds toward
Kevin and Avonte’s Law so that the program can start this year.

The Justice Department did not respond to multiple requests for comment about whether or not funds are available for this fiscal year, which runs through September.

At the same time, supporters are lobbying Congress to establish a dedicated source of funding for Kevin and Avonte’s Law in 2019.

Kevin and Avonte’s Law is named for two children on the autism spectrum who drowned after eloping. Research indicates that about half of children with autism have a tendency to wander away from safe places.

Sen. Chuck Schumer, D-N.Y., who originally proposed the bill in 2014, will continue to fight to get Kevin and Avonte’s Law funded in both 2018 and 2019, said a senior official in his office.

Texas - In Plan to Fix Special Education, Texas Education Agency will Spend $212 Million
By Alejandra Matos, The San Antonio Express-News, April 24, 2018
The Texas Education Agency plans to spend nearly $212 million over the next five years in an attempt to fix systemic problems with special education in Texas schools, according to a final action plan released Tuesday.

Finding funds for new programs is likely to be a major challenge when lawmakers return in January, but officials are confident they’ve already found the money to launch the program.

TEA officials acknowledged that students with special needs lag far behind their peers in reading and math skills, and say their plan includes efforts to boost academic achievement as well as address corrective actions required by the U.S. Department of Education. The federal agency determined that the state illegally set up an 8.5 percent benchmark — some critics considered it a de facto cap — on the number of students receiving special education services, well below the national average of 13 percent.
A 2016 Houston Chronicle investigation found that the practice led school districts to deny access to special education services to tens of thousands of students with disabilities.

The final version of the plan comes after months of draft proposals and feedback sessions with parents, educators, education advocates and students. The state is aiming to repair a decade-old practice that drastically reduced the number of students receiving special education services. TEA officials have repeatedly said the 8.5 percent benchmark was not a cap but an “indicator of performance.” But in practice, districts used the number as a cap, the Department of Education found, and denied or delayed services for children across the state.

Iowa - Davenport Special Ed Program Found in 'Systemic Non-Compliance'
By Ed Tibbets, Quad City Times, April 24, 2018
A state audit of Davenport's special education program has found the district in "systemic non-compliance" with several parts of the federal law that governs the education of students with disabilities. It has ordered the district to work with a state-selected adviser to fix the problems.

The Iowa Department of Education told the district to work with a national expert to deal with a disproportionate number of students of color identified for special education services, as well as a disproportionate number of minority special education students subjected to disciplinary actions.
The district must also reconvene individualized education plan meetings for 2,200 students and provide them compensatory education services, if they're owed them, at the district's cost. Such individualized plans, called IEPs, are written plans that guide a student's education plans according to their individual needs.

The school district was delivered the lengthy report Monday, the education department said. A redacted copy was provided to the Quad-City Times on Tuesday afternoon.
"We’ve not seen this degree of non-compliance in special education recently," Staci Hupp, a spokesperson for the state education department, said Wednesday.

Indiana - Preschool Funding for Students with Disabilities Hasn’t Changed in Indiana Since 1991
By Shaina Cavazos, Chalkbeat, April 24, 2018
Indiana preschoolers with disabilities have received the same $2,750 from the state for more than 25 years, even as advocates say the cost to educate them has risen dramatically.

The amount hasn’t changed despite inflation, cost of living increases or statewide attention on preschool, leaving local districts to shoulder the rest of the cost. That means taking money out of already cash-strapped budgets at the expense of things like teacher raises, smaller class sizes and additional programs.

Across the state, 13,066 students qualify for special education preschool services, up from 4,004 in 1991, the earliest available data from the state. At $2,750 per child, that amounts to almost $36 million this year that Indiana is sending to districts.
Advocates say that’s not enough and are making a push ahead of next year’s legislative session to demand more funding from the state for the programs.
“We don’t have any districts where the funding matches the expenditures,” said Tammy Hurm, who handles legislative affairs for the Indiana Council of Administrators of Special Education. “It’s something we’ve always advocated for, but we just decided in the last year that it needs to be our primary focus.”

Indiana - Special Education Instructors Scarce
By Matthew LeBlanc, The Journal Gazette, April 22, 2018
Attending employment fairs wasn't always part of Jada Conner's job, but in recent years it's become routine.

Conner is director of special education for Northwest Allen County Schools. She started attending job fairs at area colleges after noticing that applications for open positions weren't coming in as fast as they used to – especially for school psychologists and speech pathologists.

Even fewer people seem interested in working in intense intervention, which serves students with more severe learning or behavioral needs, she said.

“I never really had to go to teacher job fairs till a couple years ago,” Conner said.
One of the first fairs she attended was in spring 2016 at Ball State University in Muncie, and it was filled with aspiring educators.

“That day, I saw a lot of people, and there were only three who were getting their intense intervention (license),” she said, referring to certification required to work with some special-
needs students. “At one point last year, we had nobody applying for a high school position.”

It's a familiar problem for schools in Allen County, statewide and around the country. Amid a teacher shortage that has left administrators scrambling to recruit and retain instructors in specialized areas including math and science, positions in special education are particularly vulnerable, say experts who study education and those within the profession.

Many local schools say they're fully staffed for special education. But when a position comes open, filling it can be a challenge.

“There are not as many people going into that field as there used to be,” Conner said.

Georgia - Disabled Deaths, Lack of Support for Mentally Ill Plague Georgia Patients
By Tom Corwin, The Augusta Chronicle, April 19, 2018
The state of Georgia is still failing to adequately care for some developmentally disabled patients in community settings, including one death due to neglect in a former Gracewood patient, a court-appointed expert said in a report. The state is also failing to provide housing support for the mentally ill being discharged from jails and prisons, the report said.

The State of Georgia is still not providing adequate care for some developmentally disabled patients discharged into the community, including at least one death due to neglect of a former Gracewood patient, according to a court-appointed expert.

The state is also not meeting its obligation to provide housing support and coordination for the seriously mentally ill, particularly those being released from jail or prison or those who show up often in Emergency Rooms, Independent Reviewer Elizabeth Jones wrote.

Georgia has been under a 2010 settlement with the U.S. Department of Justice over the conditions in its state institutions for the developmentally disabled and mentally ill and had to have that settlement extended last year until this June after it failed to meet several requirements and obligations. The state remains out of compliance with many of those still in the latest assessment, filed by Jones in March in U.S. District Court in Atlanta.
The state has transferred 29 to the community since last July, more than it did the entire previous fiscal year, but four died within six months of being transferred. Only two of those death reports were provided to Jones. One, referred to by her initials B.B., was clearly due to poor care, Jones noted.
“There was sufficient evidence to substantiate neglect by the provider who assumed responsibility for B.B,” she wrote. “The agency failed to provide adequate staffing in the home; failed to track skin integrity, weight and bowel movements; and failed to report her hospitalization.”

Jones later wrote that there were 31 deaths in December and January and she was hoping to discuss those with state officials this month. The Augusta Chronicle in an earlier investigation found that there were nearly 1,000 deaths of developmentally disabled patients in community settings while under the care of the Georgia Department of Behavioral Health and Developmental Disabilities in 2013-2014 and in her last report Jones still faulted the state for inadequate investigations of those deaths.

Connecticut - Workers Who Care For Disabled Clients Will Strike On May 7
By Mackenzie Rigg, The CT Mirror, April 26, 2018
A strike organized by workers who care for the disabled is back on for May 7. 

In March, the worker’s union, SEIU 1199 New England, held a rally at the State Capitol to announce that some 2,500 workers from nine organizations intended to strike on April 18, seeking increased state funding and higher wages.
These employees work for private agencies in group homes and day programs that receive state funding, with the majority of that coming from the state Department of Developmental Services.

State funding to these private agencies has been flat for more than a decade. This has caused low wages, high turnover and lack of affordable health care for workers, the union says.

On April 4, Gov. Dannel P. Malloy wrote a letter to union President David Pickus asking him to postpone the strike until early May “in order to give this process time to produce a positive result, with state budget support.” The next day, the workers voted to postpone.

On Wednesday, they voted to re-issue strike notices to nine private agency providers that operate services in 250 locations statewide.
Office of Policy and Management Secretary Ben Barnes has presented legislators with a proposal that would raise wages to $14.75 per hour and
provide a 5 percent raise for workers currently earning more than $14.75, effective Jan. 1, 2019. The proposal would cost the state about $11.4 million in fiscal year 2019 and $22.8 million in subsequent years. The total annual cost is double that, but the federal government would provide a match through Medicaid. 

It would benefit about 18,000 workers, according to the union.

Thirty agencies pay less than $13 per hour, including four that pay less than $11 per hour, according to the union.

According to the union, about 59 percent of this workforce are people of color; and 67 percent, is female.

The nine agencies where workers plan to strike are: Oak Hill School, Journey Found, Mosaic, Alternative Services ASI, Sunrise, New Seasons, New England Residential Services, Whole Life and Network.

Massachusetts - Advocating for her Daughter’s Care got a Woman Banned from DDS-funded Group Home; and her Daughter got an Eviction Notice
By Dave Kassel, The COFAR Blog, April 24, 2018
When Susan Fernstrom got her developmentally disabled daughter, Holly Harrison, into a group home in Danvers in June of 2015, she thought it would lessen some of the growing burden on her of caring for members of her family.

Susan’s husband, Patrick, was terminally ill with a brain tumor and needed his own intensive care. He died in December of that year.

Holly, who is now 39, had been born with Galactosemia, a rare genetic disorder, that causes intellectual disability and other complications, including coordination issues, and requires a controlled diet.

The group home is run by Toward Independent Living and Learning, Inc. (TILL), a corporate, nonprofit provider funded by the Department of Developmental Services. The residence was brand new and beautiful, and centrally located in the downtown in Danvers, near the mall.
But almost immediately, Susan became concerned when she realized there were no meal plans for any of the five women in the house. Two of the
women are diabetics, and, like Holly, require special diets.

Beyond that, Holly wasn’t getting fed regularly. She was not fed or given water for up to nine hours at a time, Susan said. On many occasions, the staff forgot to give her lunch, particularly onweekends. In one instance, Holly was given a sandwich by the staff to eat that contained uncooked bacon.

The home wasn’t kept clean. There was clutter left outside Holly’s bedroom door and mold on the bathroom shower curtain and on the floor of the shower. “The bathroom was often filthy,” Susan said. “The staff would clean it when they knew investigators were coming, mostly due to complaints from me,” she said. Raw meat was often left in the sink.

In addition to the mold and clutter, it took months to hook up a shower curtain rod to the bathroom wall.

There was only one working light in the basement even though that was an area set aside for storage of extra clothing for Holly, which Susan frequently had to retrieve. Also, there was furniture and a large carpet roll placed in way of the clothing bins.

But when Susan raised these issues, she never anticipated the push-back she would receive, not only from the staff, but from Dafna Krouk-Gordon, the president of TILL. As of last August, Susan found herself banned under a written directive from TILL from entering the group home and therefore from being able to check directly on the care there.

Kolkhort Receives Legislator of the Year
The Eagle, April 22, 2018
Texas Sen. Lois W. Kolkhorst of Brenham has received the Legislator of the Year Award from Parent Association for the Retarded of Texas (PART), a statewide advocacy group for the developmentally disabled. The group said it chose Kolkhorst for her years of support for State Supported Living Centers across Texas.

Senate District 18, which Kolkhorst represents, contains two state supported living centers, in Brenham and Richmond. PART is a statewide volunteer-led organization dedicated to improving educational and residential placement options.
Missouri - KPI Advocates for Sheltered Workshops at Capitol
By Helen Wilbers, The News Tribune, April 27, 2018
Sheltered workshops are falling out of favor in the United States.

Connie Hale, general manager of Kingdom Projects, Inc. in Fulton, doesn’t think that should be the case.

“The employees derive a lot of benefits from the dignity of their employments and their friendships, and also the paycheck,” she said.

Hale was among more than 100 workshop managers, employees, and employees’ family and friends to attend “Day for Choice” on Wednesday at the Capitol. Advocates from across the state gathered to speak in favor of sheltered workshops’ validity as an employment option.

While Hale doesn’t know of any new, direct threats to Missouri’s workshops, she said the workshops’ prominence has been decreasing as regulations have increased.

“We can’t employ anyone under 25 until they’ve been to vocational rehabilitation and been tested,” she said. “Years ago the schools would send over their juniors and some seniors, and they’d do a couple of hours of work each day as training. Now, that’s no longer allowed because essentially they might start feeling comfortable in that atmosphere and that might be where they want to stay.”

Hale said she believes this impedes disabled individuals’ right to choose where they want to be employed. She added in her experience,
competitive employment actually means fewer hours and less support for disabled employees.

“Usually, competitive employment only offer 10 hours a week or less,” she said. “KPI employees can work 30 hours a week.”

Hale believes workshops are a financially sound way to employ disabled people. She cited a figure from the Missouri Association of Sheltered Workshop Managers that claims sheltered workshops return $10 for every $1 invested.

During “Day of Choice,” Hale and other KPI attendees dropped off flyers for area representatives. The entire group of advocates also dropped in on both the state House and Senate, she said.

Past advocacy efforts by A Team Missouri, the organizers of the event, helped the passage of MO HCR28 in 2017. The bill affirmed Missouri legislators’ support of special workshops. Currently about 6,000 Missourians work in sheltered workshops, Hale said.

Senators Call For End To Subminimum Wage Amid Accusations Of Exploitation
By Courtney Perkes, Disability Scoop, April 27, 2018

Subminimum wages for workers with disabilities came under fire this week as a group of U.S. senators called for an end to the “discriminatory” practice and an Illinois manufacturing company was accused of exploiting nearly 250 employees.

Lawmakers sent a five-page letter to the U.S. Department of Labor on April 23, the same day that the department announced that Rock River Valley Self Help Enterprises had violated federal employment law and owed two years’ worth of back pay to workers who earned less than minimum wage.

Seven Democratic senators, including Elizabeth Warren of Massachusetts and Tammy Duckworth of Illinois, wrote that the lower pay “permits employers to discriminate against workers on the basis of disability status and unjustifiably sets low expectations for workers with disabilities.”

The lawmakers called for a phasing out of so-called “Section 14(c)” jobs where employers, under the Fair Labor Standards Act, apply for certificates that allow them to pay people with disabilities less than minimum wage. Subminimum wages are based on the productivity of a person with a disability compared to someone without a disability.

Facing the Housing Crisis for DD with a Diversity of Solutions
By Jill Barker, The DD News Blog, April 25, 2018

NOS Magazine is a “news and commentary source for thought and analysis about neurodiversity culture and representation”. For the uninitiated, neurodiversity is a controversial approach to disability that includes the belief that autism and other disabilities are a normal variation of human behavior and should be accepted as a social category on a par with gender, ethnicity, and sexual orientation. According to the NOS Website, “NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.”

NOS published an article entitled "Developmental Disability Community Faces a Housing Crisis" by Cal Montgomery on 4/5/18. The author begins by referring to an article published in USA Today, “Don't let my son plunge off the 'disability cliff' when I'm gone” by Michael Bérubé on 4/2/18, where the father of a son with intellectual disabilities describes the common experience of parents of adults with ID working to create a balance so that their son has opportunities to live as independently as possible with the supports he needs to do that: “Our experiences have shown us how much help people with intellectual disabilities need to live independently. That paradox divides the disability community.”

Bérubé also puts in a plug for “intentional communities” that “integrate people people with intellectual disabilities into communities in meaningful ways, 24 hours a day, 7 days a week…We must nourish and support these social arrangements; they are a powerful social good.”

Intentional communities are one solution (certainly not the only one) to the housing crisis that the author ironically rejects, based on the idea that they are too institutional and therefore should be cut off from Home and Community-Based Services funding and forced to apply for Medicaid funding for institutional settings. There is an undercurrent of resentment toward people who can benefit from and want to live in congregate settings (settings serving more than 3 or 4 people with disabilities together) and whose safety and well-being could be jeopardized in “scattered-site housing”, the ideal setting promoted here for everyone who is not in an institution. It seems, according to the NOS article, that HCBS funds belong to those who want and need services restricted to the setting that the HCBS advocates are promoting. It seems that those with more extensive needs who need something different are taking funding they are not entitled to if they choose to live in an intentional community.

In regard to institutions, the NOS article is misleading. It implies that Intermediate Care Facilities for people with Intellectual Disabilities (ICFs/IID) are readily available to people with more severe disabilities who need more controlled environments. In fact, some states have closed all their ICFs, many have severely limited or ended admissions, and others have made it nearly impossible for individuals needing this level of care to access it. These barriers have been put in place with the approval and support of most of the groups now pretending to promote an ICF as an acceptable alternative to community settings. [In the case of the advocates interviewed for the NOS article, that includes ASAN, the ACLU, IPADDUnite!, and ADAPT.]  

Furthermore, the word "institution" is used here only in a pejorative sense that is not shared by individuals and families who have experienced the life-saving services available in these facilities.

In addition, the author disparages Misericordia, a large campus-like setting in Chicago that serves 600 people with intellectual and developmental disabilities both on and off the campus in a variety of settings. Misericordia has built a “community of care” over decades responding to the many and changing needs of the people they serve. You need to see it to believe it - I encourage anyone who is in the Chicago area and interested in the services provided to schedule a tour and talk to the residents and their families who fully support Misericordia and its mission. 

The author also puts in a dig at VOR by getting the name wrong and misrepresenting what VOR stands for. I have been a member of VOR for over 15 years.

I sent comments to NOS Magazine to point out inaccuracies and misconceptions in the article. My comments did not make it through the moderation process, so I will publish them here: 

I have two adult sons with profound physical and intellectual disabilities who live in a group home that provides for their extensive needs in a setting with four other adults with similar needs. I have also been a member of VOR for more than 15 years. 

1. Although there is a housing crisis for people with disabilities, Home and Community-based Services (HCBS) can be provided almost anywhere that a person with a disability lives. Nevertheless, CMS has imposed on states and individuals with disabilities the regulation of settings, ie. housing, rather than services. The 2014 HCBS settings rule unnecessarily restricts individual choice and seems to demand full integration into “the community” to justify HCBS funding when the ADA requires integration “appropriate to the needs of the individual”. The most pressing crisis that threatens the system of community care is the low pay and poor working conditions for direct service providers. Raising the pay, improving benefits, and honoring the importance of these service providers is something we can all get behind, rather than spending energy and resources closing programs and dividing the disability community into Us vs. Them. 

2. What is an Institution? In Medicaid law, institutional services cover mainly Intermediate Care Facilities for people with ID (ICFs/IID), nursing facilities, and institutions for mental diseases. ICFs/IID are an “optional” program under Medicaid that originally was a companion program to HCBS (also optional), allowing states to waive certain requirements for ICFs to pay for community care. Nothing prohibits institutional care for those who need it, so why is CMS trying to restrict funding to settings that resemble an institution, when an actual institution is OK? One other point, although an ICF/IID may be as small as a 4-person group home, not all settings with 4 or more people are “institutions” and there is no justification for using this arbitrary number for defining a setting as being too institutional. 

3. The name of VOR is VOR! The organization was founded in 1983 as “Voice of the Retarded”. As the terms mentally retarded and the word handicapped were used less frequently, the terminology in federal law began to change. Most disability organizations (including VOR) removed the word "Retarded" from their names and from the discussion of issues related to this segment of the DD population. So when you see the acronym VOR, think “Voice of Reason”, to help you identify who we are. Also, check out “ About VOR” for positions and policy statements. We are often misrepresented by other advocacy groups. If you insist on calling VOR “Voice of the Retarded”, then for the sake of consistency, you must also refer to The ARC as the "Association for Retarded Citizens" and TASH as 'The Association for the Severely Handicapped". 

Call For Entries! 2018 Application Period Now Open for Disability Reporting Contest

Posted on March 22, 2018 by
The National Center on Disability and Journalism

The National Center on Disability and Journalism is accepting entries for the 2018 Ruderman Foundation Awards for Excellence in Reporting on Disability.

This award is the only journalism contest devoted exclusively to disability coverage.

The Ruderman Foundation Awards for Excellence in Reporting on Disability recognize the best reporting on disability issues and people with disabilities that is being done in the U.S. and abroad.

More than $20,000 in cash awards will be given to first-, second- and third-place winners in large media and small media categories.

There is no entry fee for the competition, which is open to digital, broadcast and print media outlets.
Contest entries are due by midnight on Aug. 6, 2018. Entries must have been published or aired between July 1, 2017, and July 31, 2018. Entries are accepted from outside the U.S., although the work submitted must be in English. Awards are given to individuals or teams.

The 2018 winners will be recognized at a fall 2018 ceremony in Washington, D.C., featuring a keynote speaker on disability coverage as well as a disability reporting workshop for journalists.

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 Kristina.Blankenship@fssa.in.gov at least 48 hours in advance of the task force meeting.
For more information, visit:

VOR's Annual Meeting & Legislative Initiative
Hyatt Regency Capitol Hill, Washington, D.C.
June 9 - 13, 2018
The conference will be held at the Hyatt Regency Capitol Hill again this year. This is a very nice hotel and it is only a short walk to the Capitol and the Senate and House Office Buildings. We have reserved a bloc of rooms at the hotel for the event.

We are also accepting reservations for our Sunday Dinner at the Dubliner . This is an added event, with a $35 Prix-fixe menu that includes salad, entree, dessert, and non-alcoholic beverages (alcoholic beverages are available at an additional cost). This event has been popular in past years, so make sure to reserve your seat when you register. Space is limited, and this event has reached capacity in recent years, so make sure to reserve now!
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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