June 22, 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 2018 Annual Meeting & Legislative Initiative

We are still waiting for Rep. Bob Goodlatte to introduce his bill. We will keep you posted on the progress of this effort.

The bill is similar to the bill cosponsored by Barney Frank and Bob Goodlatte in the 111th and 112th Congresses. It would ensure that families receive sufficient notification about class action suits against the facilities their loved ones call home, and give them the opportunity to opt out of these lawsuits.

What you can do if you were unable to attend this year

  • 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 are available on our web site after the conference.
National News
Study Affirms Prospect Of Autism Blood Test
By Shaun Heasley, Disability Scoop, June 22, 2018
New research is offering stronger proof that a blood test may be able to accurately predict whether or not a child has autism.

A study published in the June edition of the journal Bioengineering & Translational Medicine is offering further evidence that an algorithm assessing metabolites in blood can distinguish kids with autism.

The method first showed promising results in a paper published last year. In that study of 83 children with autism and 76 neurotypical children, researchers said they were able to correctly determine in 97.6 percent of cases which blood samples came from those on the spectrum.

The latest study relied on a separate sample in an effort to validate the initial findings.

Researchers used a set of existing data from 154 children with autism that was collected for studies at the Arkansas Children’s Research Institute. The data set included information on 22 of the 24 metabolites that were involved in the original algorithm.

Ultimately, the approach was able to predict autism with 88 percent accuracy, the study found.
“This is extremely promising,” said Juergen Hahn of the Rensselaer Polytechnic Institute in Troy, N.Y. who led the research.

Currently, autism is diagnosed through clinical assessments. Though the developmental disorder can be flagged in children as young as age 2, government data indicates that most kids are not diagnosed until after age 4.

If researchers are able to identify a biomarker in blood or otherwise, the hope is that children could be identified at earlier ages when treatment is considered to be most effective.
definition of autism into its regular tracking of autism prevalence.

State News
Pennsylvania - Hamburg Center Won't Meet June 30 Closing
Most of the clients have been placed in other facilities.
Written by Ron Devlin, The Reading Eagle, June 19, 2018
The Hamburg Center is entering the final stages of a closing after serving people with intellectual disabilities for 58 years, officials said Monday at a quarterly board of trustees meeting.

While the facility will not meet its projected June 30 closing, acting director Jerry Goessel estimated that five to seven clients would remain by July 11, 18 months after the state Department of Human Services announced its closing.

When originally announced, the department estimated closing would take from 18 to 24 months.

Goessel gave no final date for closing the 278-acre campus that contains 39 buildings, but indicated arrangements are underway to place the remaining clients in group homes or other state centers.

Currently, 24 of the initial 80 clients remain at the center. Efforts are underway to place those remaining 24, whose families have chosen community-based care.

Of the other 56 clients, 29 have been placed in group homes, nine went to the state's Selinsgrove Center, seven to the White Haven Center and two
to nursing homes. Three have been placed incommunity intermediate homes or intermediate care facilities. Six have died.

As employees retire or are placed in other state-run facilities, Goessel said, the center is hiring nurses and aides on a contract basis to ensure quality of care for the remaining clients.

The Northern Berks Ministerium announced it will ask its congregations to hold a day of thanks for the Hamburg Center on the weekend of June 30 and July 1.

"The closing of the center marks the end of an era for our community and for the generations of residents and staff who have made the Hamburg Center their home or place of employment for decades," the ministerium said in a note to Goessel. "We thank God for the blessing that the center has been to our community and the many residents who have relied upon the care of those at the center for a full and meaningful life."

Montana - Budget cuts: Montanans with Developmental Disabilities May See Reduction in Care
By Augusta McDonnell, KPAX TV8, June 14, 2018
hroughout 2017, the budgetary decisions made by the Montana Legislature left healthcare providers and their clients wondering what would happen next, and how they would get the services they need.

The population we’re talking about here is about 2,500 people over the age of 16, who are living with a developmental disability in Montana.

For about 25 years, four organizations had contracts to provide targeted case management to this population. This service allows them to have access to employment and live in their own home and maintain a good quality of life. The alternative for many of these people is an assisted living center or some other type of institution.

Then, the 2017 Legislature slashed more than
$200 million from the Montana Department ofPublic Health and Human Services to account for shortfalls in the state budget.

Some of these cuts came by way of rate reductions to case management providers. This means they will be paid less to do the work, and many services statewide have been reduced or eliminated completely.

“The big challenge right now is this is a new normal for us, and for people with disabilities, what’s going to become of them,” said Martin Blair, executive director at the Rural Institute for Inclusive Communities at the University of Montana.

Massachusetts - Families tell Legislators that Work Opportunity Bill for the Developmentally Disabled is about Choice
By Dave Kassel, The COFAR Blog, June 15, 2018
On June 12, Barbara Govoni and Patty Garrity took their case to Beacon Hill for passage of H. 4541, a bill that would ensure that developmentally disabled individuals get work opportunities in their community-based day programs.Also testifying at the June 12 public hearing of the Legislature’s Children, Families, and Persons with Disabilities Committee in support of the bill was Robin Frechette, a legislative aide to Representative Brian Ashe, who had filed the bill on Govoni’s behalf.

Time is running out in the current legislative session to pass this critically important bill. And many legislators appear to have misconceptions about the legislation.

Govoni, Garrity, and Frechette all pointed out that H. 4541 is needed to fill a gap in work activities for the developmentally disabled — a gap that opened up after all sheltered workshops were closed in Massachusetts in 2016. We too submitted testimony, and I spoke on behalf of COFAR to the four legislators present on the panel — Senator Joan Lovely, Senate co-chair of the committee; Representative Kay Khan, House co-chair; and Representatives Carolyn Dykema and Shaunna O’Connell.

“I would not be here had there been a realistic decision to incorporate a community-based support program (when the sheltered workshops were closed),” Govoni testified. That program, she said, should have included a work activity option at day program facilities across the state.

Frechette testified that not all developmentally disabled persons are able to work successfully in mainstream work environments. Garrity pointed
Supporters of H. 4541 on June 12 following the Children and Families Committee hearing. They are (from left) Patty Garrity, Robin Frechette, Danny Morin, Barb Govoni, and John Govoni. The bill is Govoni’s vision and was filed after she had spent months advocating for it.
out that her brother, Mark, is one of those DDS clients who is “not able to compete in a competitive market for a job.”

Garrity said that when Mark participated in a sheltered workshop at his same day program location in Braintree prior to the workshop’s closure, “the work would come in and Mark would get a paycheck at the end of the week that provided him with self-esteem.” That is no longer the case, and not only is Mark bored with his current day program activities, he tends to let everyone he meets know he misses the work he used to do.

It is not clear yet whether the Children and Family Committee co-chairs are in support of H. 4541. An aide to Representative Khan said on Friday (June 15) that Khan and Lovely were “having a discussion” on all bills still in the committee as formal business in the current legislative session winds down, and would make a decision this week on which bills to report favorably.

Indiana - Sheltered Workshops May Be Closed
By Bill Rethlake, Daily News, Jun 20, 2018
Future employment opportunities for persons with disabilities are being discussed at a series of meetings taking place throughout the state between now and the end of the year.

The Fair Labor Standards Act (FSLA) of 1938 was the first mandate passed by the United States government to regulate the amount American workers were to be paid per hour for employment in the private and commercial sectors. At that time, the minimum wage was set at 25 cents an hour. Taking into account inflation and the value of the dollar, that equals roughly $4.10 per hour by 2018 standards.

In October 1938, after a long battle in the House and the Senate, Franklin D. Roosevelt signed the bill into law. The law was the first effort by the government to regulate and police what American citizens earned as wages and also made illegal hiring practices of the past that exploited children.

In 1986, the FSLA was amended to include a mandatory lower rate for individuals whose handicaps prevented them from being able to compete with non-disabled workers. Essentially, it provided disabled workers a right to work and still earn an hourly wage, despite their challenges.

Developmental Services, Incorporated, is a Columbus based 501(c)3 not-for-profit organization that provides services for adults and children with mental, physical and emotional disabilities. Among the many services DSI offers
are sheltered workshop (called “day programs”) environments in all seven of its locations.

In these day programs, the disabled are given jobs performing a multitude of tasks, from piece assembly and packaging to more intricate tasks; all are performed by clients on an hourly/piece rate wage. Adults with disabilities ranging from the autism spectrum to the profoundly disabled all are given a job and earn a paycheck.

As elemental as having a job might seem, that simple slice of the “American dream” would be denied to clients of DSI and to the hundreds of similar agencies nationwide if not for that 1986 amendment to the FSLA.

The existence of sheltered workshops gives the 70 day program clients DSI employs, and the many similar individuals across the nation in similar workshops, the choice between competing in the open job market or in a sheltered environment.

Pennsylvania - Nonprofit turns 70: Center Trains, Helps Find Jobs for those with Intellectual Disabilities
Mission expanding for Lancaster's Occupational Development Center, started in 1948 by two visionary women as a school
By Mary Ellen Wright, Lancaster Online, June 18, 2018
It’s 8:30 a.m., and the work day is well underway for the employees in the long, one-story building housing Lancaster’s Occupational Development Center.

Dozens of workers are doing a variety of jobs in several large rooms: putting together educational kits in plastic sleeves, sorting and packing screws, putting labels on envelopes and cleaning grease from industrial work-order folders.

Some of the employees sit by themselves, listening to music through headphones. Others work at group tables, occasionally chatting and laughing with co-workers as they concentrate on the tasks at hand.

Decades ago, these hard-working employees, who happen to have intellectual disabilities, might have been sitting at home, or in an institution, instead of working.

But because of the efforts of two visionary women in 1948, they’re earning a paycheck and expanding their skills.

The Occupational Development Center, 640 Martha Ave., is celebrating its 70th anniversary this fall, and also is shifting the approach to its mission of helping adults with intellectual disabilities train for and gain paid employment.
The nonprofit, which started as a children’s school in the basement of a home, currently serves about 65 people and has more than 20 people on staff.
“There are a variety of different types of services that we provide,” says Ken Mueller, the ODC’s public relations and development manager.
“We get contracts with local businesses to do work for them, and our participants do the work,” Mueller says.

Those include putting together fire-safety educational kits for school kids for the Alert-all company in New Holland, and packing display samples of roofing materials for Fabral.
The employees sort and bag metal o-rings for DentalEZ, a dental supply company. And they put labels on envelopes for seasonal bulk mailings for various companies and organizations, Mueller adds.

“Each of our work areas has a supervisor, and that one supervisor’s job is to provide the training” and check the employees work flow and that they’re being paid for the work they do.

If an employee needs a little extra help, the staff makes accommodations — like creating a gizmo that keeps plastic sleeves open for stuffing by an employee with limited use of one arm.

“We want them to feel successful at their job,” says Gregg Richards, the Center’s executive director. “A person’s vocation is so much a part of who they are.”

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!
New Jersey - Lawmakers Looking to Find More Dollars for Direct Caregivers
By Lilo H. Stainton, NJ Spotlight, June 14, 2018
It’s easy to see why there’s a shortage of direct-support professionals. They’re paid so little they can do better financially working at a fast-food chain

Senate President Steve Sweeney is determined to find at least $20 million more to pay healthcare workers who provide critical daily assistance to disabled individuals in New Jersey as part of the ongoing budget negotiations between the state Legislature and the Murphy administration.

Sweeney (D-Gloucester) told NJ Spotlight that increasing the Medicaid reimbursement for these nonclinical direct-support professionals, or DSPs, is a priority for him and other lawmakers, given the important work they do in homes, schools, and workplaces for some of the state’s most vulnerable residents. Pay for these jobs starts at $10.50 an hour; New Jersey’s minimum wage is $8.60.

The Senate president led the fight during last year’s budget battle to include $20 million in the current state spending plan, which functioned as aone-time bonus. He said he would “fight to make sure” it is also included in the budget for the coming fiscal year, which must be adopted by the
end of June.

Social-service policy experts also flagged this issue in their transition policy report to Gov. Phil Murphy, who took office in January, but the fiscal year 2019 budget proposal he unveiled in March did not include additional money for DSP pay. That raised concerns for frontline workers, agencies that employ them, and individuals and families they serve. Members of the Assembly budget committee also questioned the decision at a hearing in May.

“The personal-care workers who go into their homes and communities to provide direct care and to help them with daily needs are performing some of the most important duties imaginable,” Sweeney said. “It is shameful that they are too often underpaid and underappreciated. The budget is tight, but this is a priority that I am determined to fund.”

Direct Support Workers In Short Supply As Demand Surges
By Rita Price, The Columbus Dispatch via Disability Scoop, June 18, 2018
The commercial lasts less than a minute. Time enough, Ben Young hopes, for viewers to see what he needs and to imagine what he can give.“Come change my life,” Young says in a computer-generated voice. “I promise it will change yours forever. Help me help myself.”

The pitch, from a bright and determined young man who can neither feed nor dress himself, or even speak clearly without aid of technology, is part of a statewide campaign to recruit the workers known as “direct support professionals.” The well-being of Young and tens of thousands of other Ohioans with developmental disabilities turns on the availability of competent and reliable support providers.

But the pool has gone frighteningly shallow.

Companies and nonprofit agencies that offer care and support to people with disabilities say they are struggling more than ever to attract workers, forcing some to terminate services and decline new clients. Parents go without sleep and take leave from their jobs to fill in. Adults and children with disabilities become frustrated, confused or upset at the churn of names and faces and routines.
“We have a workforce crisis on our hands that is of mammoth proportions,” said Mark Davis,
president of the Ohio Provider Resource Association.

Davis, whose organization represents agencies that employ direct-support workers, said surveys show employee turnover at 50 percent. Ten to 20 percent of jobs are vacant. About two-thirds of workers qualify for federal health-care assistance, and a majority put in overtime so people such as Young, who is severely affected by cerebral palsy, don’t go without critical services.

“We believe that 76 percent of people are working six days a week,” Davis said.

Awareness is part of the problem. Many would-be workers simply don’t know about the demand or have a notion of how rewarding the field can be, Davis said.

The bigger issue is pay. The average hourly wage for a direct-support provider in Ohio during 2016 was about $11.16 an hour — less than $24,000 a year.

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 Kristina.Blankenship@fssa.IN.gov 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.
Florida - Kids bullied a disabled girl on school bus. School aide was more worried about her phone
By Giuseppe Sabella, Bradenton Herald, June 14, 2018
As a nonverbal student in Manatee County, 5-year-old Anabelle Hunting could only scream as another student pulled her hair and slapped her face during a bus ride on April 19.

Her mother, Lauren Lardieri, said officials at Robert H. Prine Elementary School failed to notify her of the incident until April 30, more than a week later. Her family paid the district about $60 for a redacted copy of video taken by a camera on the bus. Lardieri provided a copy of the video to the Bradenton Herald on Thursday.

"I just feel like I have to be the voice for my daughter because she can't express herself the way she wants to," Lardieri said.

She said her daughter has developmental delays, attention-deficit hyperactivity disorder, epilepsy and mixed receptive-expressive language disorder.

The bus attendant, 20-year-old D'Mari Martin, had no experience working on a bus. She started the job about two weeks before the district served her a letter of termination on April 20, a day after the incident. In an email on Thursday, district attorney Mitchell Teitelbaum acknowledged a delay in contacting the mother.

"Regrettably, there was late communication between the school and the parent of the student, based upon miscommunication and the belief that the parent had been informed of the incident," he said. "Once that miscommunication came to light, the parent was immediately notified."

Based on what district officials told her, Lardieri believes the apparent bully was a non-disabled student who rode the bus with her sibling. It seems, she said, the student was suspended and later returned to the bus.

The video shows other students throwing Hunting's plush dolphin toy around the bus as Martin walked up and down the aisle, searching for her lost phone. One student reached over her seat and pulled on Hunting's hair — the first sign of what would soon follow.

Hunting hit another student with her plush dolphin. "Hey, it wasn't me," the student responded.

Hunting continued to scream and cry as the bus attendant walked back into the camera's view.

"OK, calm down," she said. "Where is my phone?"
As Hunting screamed at the top of her lungs, many of the other students followed, creating chaos as Martin demanded her phone. She then grabbed Hunting's backpack and searched it while the girl wiped her face with the dolphin toy. Another student called Martin's phone to help with the search.

"You all finna see a real ugly side of me if I don't find my phone," Martin can be heard saying.

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

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:

836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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