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

Press Contacts Needed
VOR's Communications Committee is updating our list of media contacts. We need your help.

If you know of a media outlet, or a newspaper or television reporter who has covered issues involving people with intellectual or developmental disabilities, either favorably or unfavorably, please send us contact information so that we can add to our database.

Our goal is to find journalists who have been sympathetic to VOR's perspective, that we can contact with state and national issues of interest. We also want to know which outlets have exhibited a bias against ICF's, Intentional Communities, Sheltered Workshops, and other issues of concern to our families.
If you have any connection with a reporter or media outlet in your state or region, please send their name, media outlet, and contact information to us at info@vor.net
Congregate Care Facilities
Montana - Montana’s Most Vulnerable Residents Face Limited Options
The state lacks facilities for people with developmental disabilities and mental illness.
By Jan Anderson, High Country News, July 13, 2018
( This story was produced by The Boulder Monitor as part of The Montana Gap project, in partnership with the Solutions Journalism Network.)

Fran Sadowski has seen firsthand the dangers of limited options.

During a study on services for “dually diagnosed” individuals — those with both developmental disabilities and mental illness — the CEO of Missoula Developmental Services Corporation in Montana shared the story of a 28-year-old client.

The client was living in a community-based facility when he became seriously self-injurious. Because the state legislature had ordered the closure of the Montana Developmental Center in Boulder,

Montana, there was no place for him to go. As the state’s only public residential facility — and the only Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF-IID), public or private, in Montana — the MDC was the only place where a dually diagnosed individual could be placed by court order in a crisis.

Left with no alternative to hospitalizing him in a facility never intended for individuals like him, Sadowski could do nothing as he suffered two major seizures and went into a paralytic state.
Serving at the time on the state’s advisory council to recommend steps for completing the MDC closure, Sadowski choked back tears as she told the group about the situation. She advocated for a state crisis facility where the courts could place someone in severe need.

At the same time, Sadowski recognized the need for more money going into community based services for individuals with developmental disabilities and/or mental illness. Through nearly a year and a half of meetings, Sadowski consistently maintained there was simply not enough money in the funding pot. Wages for direct care staff in private community group homes, driven by federal dollars, were too low to keep staff, she said.

And she recognized that the community-based services and the MDC were all drawing from the same — too small — pot of money. But doing away with the MDC, which some had argued to the legislature would free up funds for community providers, was not the answer, either, she said.

Believing “let’s close MDC and everything’s going to be okay” is not true, she said, urging the council to take a broader view of “what does the system need in the community to be successful.”
This article includes stories of two other individuals with IDD who have fallen through the cracks in Montana's health care system.
Texas - Helpless: Mother Continues Fight to get Services for Disabled Daughter
By Caitlin Jones, The Denton Record-Chronicle, July 8, 2018
Margaret Danko came to Denton from Tennessee for one reason.

Since December, the 80-year-old has been trying to get her 44-year-old daughter, Jay, who has Down syndrome and a degenerative nerve condition, into the Denton State Supported Living Center, known to locals as the Denton State School. Danko said she heard about the facility from a friend whose daughter had been a resident there for decades and affectionately referred to it as “home.”

Danko has taken care of Jay her whole life, but she knows she’s getting older. With two broken bones in her back, she said it’s hard to move herself around her house, let alone Jay.

“I’m mean as a snake and tough as nails,” she said. “But I need help.”

Help has been hard to come by, though. After a series of odd visits from Denton County MHMR, Danko said she hasn’t heard from the agency
since it sent a letter in February saying Jay qualified for services.

But officials with MHMR, which provides mental health services to Denton County residents, say getting into the Denton State Supported Living Center isn’t as simple as putting a name on a list.
Although she wouldn’t discuss Danko’s case individually because of privacy laws, MHMR’s local authority director Leslie Hunt said admission to the state living center requires approval from a probate judge and often is used as a last resort for people who can’t function in other settings.

“[The state school] is considered the most restrictive environment,” she said. “Our goal is to keep individuals living in the community if they’re able to.”

California - Eldridge Passes Into History
By Bill Lynch, Sonoma Index-Tribune, July 9, 2018
For Sonoma Valley old-timers like me, it is still hard to believe that Eldridge’s Sonoma Developmental Center will be no more by the end of this year: The last residents will be moved out.

Where once was a bustling little community in which many of our fellow Sonomans earned a living will become a virtual ghost town, while the state and community decides what to do with the facilities.

The 1,670-acre initial parcel was purchased from former Sen. William McPherson Hill for $51,000 and, by June of 1890, the first contracts for buildings there were awarded.

From the beginning, its founders intended it to be more than a place where mentally retarded children were merely kept and cared for. It was for their training in vocational skills. The institution adopted the idea that “occupation is one of the best mental tonics known.”

Its children began their school day at 9 a.m. with activities that one would have seen in most schools of the day. Classes taught included geography, U.S. History, spelling, embroidery and band music.

Over the decades, the laws governing the institution and care of people with developmental disabilities have changed and evolved. Its name somewhat reflected those changes. It began as the California Home for the Care and Training of Feebleminded Children; it then became Sonoma State Home, then Sonoma State Hospital, and finally Sonoma Developmental Center.

As late as the 1960s, it cared for more than 3,400 patients and employed nearly 2,000 people, most of them Sonoma Valley residents. Many were friends of my family whose children were my classmates.

Pennsylvania - DHS Sets Date for Closing of Hamburg Center
WFMZ TV69 News, July 10, 2018
The end is near for a state-run facility in Berks County that has long been home to people with intellectual and developmental disabilities.

The Pennsylvania Department of Human Services (DHS) announced Tuesday that it will officially close the Hamburg Center in Windsor Township on August 3.

That date will come 19 months after the closure was announced as part of the Wolf administration's commitment to reduce reliance on institutional care and improve access to home- and community services.

"Research shows that when an individual with an intellectual or developmental disability lives in a community setting, quality of life improves, and more opportunities arise for social participation, community integration, relationships with family and friends, and employment," said DHS Secretary Teresa Miller. "Transitioning residents of the Hamburg State Center will help them grow and thrive in new ways and sets the foundation for a long-term increased quality of life."
At the time the closure was announced in January 2017, Hamburg was serving 80 residents and employing about 350 people at its 154-acre campus. At one time, it was reported to house more than 900 people.

The residents have since transitioned to community-based centers, and most of the employees have either transferred to other state jobs or have retired, officials said.

The state has not said what plans it has for the the Hamburg center or its 39 buildings.
"We are very interested in bringing new jobs to this site," said state Sen. David Argall. "Several developers have shown considerable interest. Now that we have an exact closing date, we can move forward."

New York - After Interminable Delays, State must make most of Wassaic Land Sale: Editorial
By the Editorial Board, The Poughkeepsie Journal, July 12, 2018
The state’s apparent commitment to selling off the remaining portion of the former Wassaic Development Center in eastern Dutchess County should have happened decades ago. After such inexcusable delays, state officials owe it to the local community to get this right, to see something positive emerge at such a critically important site.

In fact, in the mid-1990s, the state officials in charge of the center in the Town of Amenia led the discussion about future uses, including turning it into a retirement and/or health center or transforming the buildings into a village-like outlet mall. But those plans never materialized. And the state’s downsizing of the facility has taken an interminably and indefensibly long time — at great taxpayer expense.

The Wassaic campus has its own electrical substation and water and sewage plants as well. That’s because, at one time, thousands of people with developmental disabilities lived and were treated in those buildings.

Over the decades, patients were increasingly placed in less restrictive settings, including group homes, and the state closed the residential portion of the campus in 2014. Yet, since that time, the
state has managed to rack up millions of dollars in operational costs by keeping some of the buildings open for administrative staff with the state Office for People with Developmental Disabilities. That has made absolutely no sense from a fiscal point a view. And it’s kept in limbo any possible plans for redevelopment.

For decades, Dutchess County residents have seen the worst of what happens when the state closes big facilities and has little regard for what happens next — and no coherent strategy for redevelopment. But these centers provide unique opportunities for smart growth, to see progress without ripping up more rural farmland or open space in the county. Whatever emerges at this site must be something that the local community supports. For that to occur, the state will have to be far more transparent during the redevelopment process than it has been for the decades it has taken to part with the land.

New York - ‘It’s Almost Like a Ghost Town.’ Most Nursing Homes Overstated Staffing for Years
By Jordan Rau, The New York Times, July 7, 2018
Most nursing homes had fewer nurses and caretaking staff than they had reported to the government for years, according to new federal data, bolstering the long-held suspicions of many families that staffing levels were often inadequate.

The records for the first time reveal frequent and significant fluctuations in day-to-day staffing, with particularly large shortfalls on weekends. On the worst staffed days at an average facility, the new data show, on-duty personnel cared for nearly twice as many residents as they did when the staffing roster was fullest.

The data, analyzed by Kaiser Health News, come from daily payroll records Medicare only recently began gathering and publishing from more than 14,000 nursing homes, as required by the Affordable Care Act of 2010. Medicare previously had been rating each facility’s staffing levels based on the homes’ own unverified reports, making it possible to game the system.

The payroll records provide the strongest evidence that over the last decade, the government’s five-star rating system for nursing homes often exaggerated staffing levels and rarely identified the periods of thin staffing that were common.
Medicare is now relying on the new data to evaluate staffing, but the revamped star ratings still mask the erratic levels of people working from day to day.

At the Beechtree Center for Rehabilitation & Nursing here, Jay Vandemark, 47, who had a stroke last year, said he often roams the halls looking for an aide not already swamped with work when he needs help putting on his shirt.
Especially on weekends, he said, “It’s almost like a ghost town.”

Nearly 1.4 million people are cared for in skilled nursing facilities in the United States. When nursing homes are short of staff, nurses and aides scramble to deliver meals, ferry bedbound residents to the bathroom and answer calls for pain medication. Essential medical tasks such as repositioning a patient to avert bedsores can be overlooked when workers are overburdened, sometimes leading to avoidable hospitalizations.

Other State News
Maine - House Overrides Veto of Critical Services for Mainers with Intellectual Disabilities
The Penobscot Bay Pilot, July 12, 2018

The Maine House overrode the governor’s veto Monday of a proposal by House Majority Leader Erin Herbig to protect services for Mainers with intellectual disabilities and autism. The vote was 143-0. Without the measure, cuts to MaineCare reimbursement rates starting in July would put services for thousands of individuals at risk. 

The proposal to preserve reimbursement rates was included in a larger spending package, LD 924, which passed both the House and Senate with overwhelming bipartisan support but was vetoed by the governor.

The governor’s veto of LD 924 now goes to the Senate for its consideration. A two-thirds vote in both the House and Senate is required to override a veto.

Massachusetts - Questions remain as Key Disabilities Committee Kills Work Opportunities Bill

By Dave Kassel, The COFAR Blog, July 13, 2018

The Legislature’s family and disabilities rights committee has rejected H. 4541, a bill intended to ensure that developmentally disabled individuals get work opportunities in their state-funded day programs.

A staff member of the Children, Families, and Persons with Disabilities Committee said the committee understands many people cannot find those work opportunities and is therefore discussing other possible ways of providing for them. But details regarding the policies being considered by the Children and Families Committee are sketchy, and the committee hasn’t yet responded to written questions about those ideas.

Barbara Govoni, the mother of a developmentally disabled man, had pushed for months for passage of H. 4541, which would have established optional work activities in DDS-funded day programs for up to four hours a day.
Many people in community-based day programs funded by the Department of Developmental Services have not been able to find such work since all sheltered workshops were closed in Massachusetts in 2016.

H. 4541 had been referred to the Children and Families Committee in May, and the committee effectively killed the measure last month by sending it to a study. With the formal business in the current two-year legislative session ending on July 31, any similar legislation will have to be re-filed next January and go through the legislative process all over again.

It isn’t clear what the committee’s objections were to H. 4541. We’ve noted that some committee members appeared to have some misconceptions about the bill, including the idea that it would bring sheltered workshops back to the state.

In fact, the bill would have simply provided work activities for individuals who continued to desire those activities in their day programs, and who either could not or did not want to work in “integrated” or mainstream work settings. As we have reported, many of these people miss the work they used to do in their sheltered workshops, and are unable to relate to most day program activities that replaced that work.

New Jersey - Works of Developmentally Disabled Artists from Hunterdon featured in Easton Exhibit
My Central Jersey, July 12, 2018
Thirty men and women from the Hunterdon Developmental Center are exhibiting their creations at The Strand salon in Easton, Pennsylvania, from July 12 to Aug. 9.

The work of the developmentally disabled artists includes more than 100 pieces, ranging from colorful ceramic fish and flowerpots to paintings of all sizes and T-shirts, one of which features a “Happy People” message that mirrors “With These Wings," the exhibit’s theme.

“We chose the word ‘wings’ because art allows our clients’ to expand beyond their capabilities through their creations and fly or soar, metaphorically,” said Anna Thompson, fine arts teacher at the Union
Township-based center, in a news release.

“It’s a wonderful opportunity for the artists to be received in the community by their peers,” added Art Serfass, a supervisor, in the news release. “By showcasing and selling artwork in community spaces, our artists gain self-confidence that permeates all aspects of their lives.”

National News
Ed Department Sued Over Delay Of Special Education Rule
By Michelle Diament, Disability Scoop, July 13, 2018
The U.S. Department of Education is being accused of sidestepping its responsibilities to students with disabilities by delaying a special education regulation that was supposed to take effect this month.

In a federal lawsuit filed Thursday, the Council of Parent Attorneys and Advocates, or COPAA, alleges that the agency is skirting its obligation under the Individuals with Disabilities Education Act to ensure that students with disabilities receive appropriate services no matter their racial background.

The suit comes after the Education Department issued a final rule last week delaying for two years regulations addressing what’s known as “significant disproportionality.”

IDEA mandates that states identify school districts with high rates of students from particular racial or ethnic groups who have disabilities, are placed in restrictive settings or are subjected to discipline.
However, states have traditionally used a variety of measures to evaluate districts and few were ever identified.

During the last weeks of the Obama administration, a rule was finalized establishing a national standard and it was set to take effect July 1.

By officially moving to delay the regulation, the Education Department indicated that it would allow more time “to evaluate the questions involved and determine how best to serve children with disabilities without increasing the risk that children with disabilities are denied (a free appropriate public education).”
Under Secretary of Education Betsy DeVos, the agency has raised concerns that the Obama-era rule “may not appropriately address the problem of significant disproportionality” and questioned whether the Education Department had the statutory authority to create a national standard.
Despite the delay, states are allowed to implement the new standard if they wish to, the Education Department said, and they are still obligated under IDEA to assess school districts for significant disproportionality.

COPAA’s lawsuit brings claims under the Administrative Procedure Act arguing that the Education Department did not offer a “reasoned explanation” for changing course and it failed to consider the costs to parents and students of delay or any alternatives to delay.

What’s more, the legal action indicates that the agency did not allow for “meaningful participation” because its public comment period only solicited feedback on the idea of a delay, not the issue itself.

“We are highly dismayed at the delay in the department tackling an issue that has literally been occurring for over a decade,” said Denise Marshall, executive director of COPAA. “We see no new information, no new reason to deny students of color with an equitable access to their education.”

Study: Most Kids Still Aren’t Screened For Developmental Delays

By Shaun Heasley, Disability Scoop, July 12, 2018
It’s recommended that all young children be regularly screened for developmental delays, but new research finds that’s not happening with fewer than 1 in 5 kids in some areas being evaluated.
Nationally, less than a third of those ages 9 to 35 months received developmental screening,
according to findings published online this week in the journal JAMA Pediatrics.

The study looked at data collected through the 2016 National Survey of Children’s Health, a government survey of more than 50,000 U.S. adults asking about children in their households under age 18.

Parents were asked if a doctor or other health care provider had inquired about developmental concerns — a process known as developmental surveillance — or if they were asked to fill out a questionnaire about developmental concerns, which is considered screening.
The American Academy of Pediatrics recommends that all children receive developmental surveillance at every health visit and that developmental screening be conducted at 9, 28 and 30 months or any time a concern is raised.
Nonetheless, the study found just 30.4 percent of kids in the target age group had been screened in the previous year, while 37.1 percent had participated in surveillance. More than half of children had received neither.

And the numbers varied substantially by state. At the low end, only 17.2 percent of Mississippi children were screened compared to a high of 58.8 percent in Oregon.

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!

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
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