September 21, 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

HR 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

Representative Bob Goodlatte (R.-VA) introduced our long-awaited bill this week. This is the same bill we worked so hard to enact during the 11th and 112th Sessions of Congress. VOR is preparing our campaign to support this legislation.

VOR wants your support in persuading members of the House to support this bill. We will be issuing an ACTION ALERT in a few days to help you reach out to your representatives as they return to Washington, D.C. this week.

44 Days to go!


Support candidates who support our values. Donate to candidates who value our support!

Please Support H.R. 5658
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!

H.R. 6611

VOR is examining H.R. 6611, a bill introduced by Rep. Seth Moulton (D-MA) to expand and improve health care and dental services for individuals with developmental disabilities. Stay tuned for more information on this bill.
State News
Ohio - DD Families in Ohio Stand Up for Themselves – File Claims against State & DRO
Columbus, Ohio – September 17, 2018
On Friday, September 14, 2018, a dozen Ohio families filed claims against the State of Ohio and the Ohio Association of County Boards of Developmental Disabilities in a federal lawsuit pending in Columbus before Chief Judge Edmund Sargus, Jr. ( Ball et al. v. Kasich et al., S.D. Ohio, Case No. 2:16-cv-282). The families also filed claims against Disability Rights Ohio (DRO), the state’s Protection & Advocacy agency, for failing to protect the rights of all people with developmental disabilities (DD). The families access facility and community based residential supports.

The case was filed by DRO in 2016 targeting Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs). ICFs provide comprehensive health care and personal care to roughly 6,000 Ohioans with severe DD. In 2017, families were granted intervention in the case after the Court held that their rights “are directly impacted in this lawsuit.”

The families simply want to preserve the right of developmentally disabled Ohioans to choose an ICF among an array of residential options. They feel strongly that moms, dads, sisters, and brothers are in the best position to make care decisions for their loved ones.

Caroline Lahrmann, a Columbus mother of profoundly disabled twins, states: “Under the law, DRO is supposed to represent all Ohioans with DD. It receives millions in tax dollars, but it – along with the state and county boards – have worked to close ICFs. How is that protecting constituents and respecting choice?” She adds: “We take no joy in filing these claims. We did not start this suit – DRO did – but we can’t sit back and let our loved ones be torn from their communities of care. The state, county boards, and DRO are killing ICFs as well as other supported living options. We have to protect our family members”

The claims the families filed span 84 pages and detail a history of the state, county boards, and DRO all working to limit or close ICFs. The file is available here.

Caroline Lahrmann
Phone: (614) 359-9323

Puerto Rico - Hundreds of Puerto Rican schools closed after Maria. Special needs kids got left behind
By Kyra Gurney, the Miami Herald, September 2018
t was the second day of the new school year in Puerto Rico, but 7-year-old Angel Torres wasn’t in class. He was at a physical therapy session,
struggling once again to stand on his own, when the boy’s therapist asked his mom how school was going.“Bad. Terrible,” Brenda López said, frustration spilling out. “The classroom isn’t suitable for him.”

A year after Hurricane Maria changed almost everything on the island, hundreds of parents like López were left struggling to find classrooms, teachers and therapists for their children with autism, Down syndrome or cerebral palsy. What had been a daunting task before the storm — finding a place where their special needs children could thrive — had become vastly harder afterward, as the government shuttered more than 250 schools and the education department scrambled to relocate students and staff. The Department of Education said in late August that it still needed to fill 132 vacancies for special education teachers. And that meant some kids like Angel, who has cerebral palsy and cannot walk on his own or talk, were left in limbo.

The day before, López had taken Angel to school — only to find a cramped space where the air conditioning barely worked, the bathroom was too small for Angel’s wheelchair to enter, and there was no diaper changing table.

There was also no teacher. The six students had been sent home at 11 a.m. on the first day and couldn’t go back until the school, Carmen Casasús Marti Elementary, found a special education teacher.
The day before, López had taken Angel to school — only to find a cramped space where the air conditioning barely worked, the bathroom was too small for Angel’s wheelchair to enter, and there was no diaper changing table.

There was also no teacher. The six students had been sent home at 11 a.m. on the first day and couldn’t go back until the school, Carmen Casasús Marti Elementary, found a special education teacher.

What frustrated López the most was that her son had attended a great school the previous year with a large, well-equipped classroom and a devoted teacher — so devoted that she’d driven highways littered with debris to check on her students after the hurricane. Angel had made real progress at Parcelas María Elementary. Looking at the calm little boy stretching with his therapist, it was hard to imagine that three years ago when he’d enrolled at the school, any noise — music, cars driving by, even the sounds of children playing — had been enough to send him into a fit of screaming and crying.

But the government had shut down the elementary school in a wave of closures over the summer triggered by a combination of debt and the exodus of school-age children. Now, López knew she would have to fight to get Angel a new teacher and to make sure he got the help he needed in school. There was no telling how long that would take.

New Hampshire - Surplus Funds Proposed for Developmental Disability Wait List
By Adam Sexton, WMUR News 9, September 20, 2018
Surplus funds are now available to fully fund the state's developmental disability wait list.
Gov. Chris Sununu and Department of Health and Human Services Commissioner Jeffrey Meyers will bring forward a proposal on Friday.

The plan is to transfer $1.3 million in surplus funds to the so-called "DD wait list,” which includes those disabled people waiting for additional state services due to budget constraints.

“I think we've managed the DD money this year very well,” Meyers said. “There's been an increase
in services requests, particularly among people who are already on the DD wait list and are getting some services but are requesting more services."

The state's fiscal committee must vote to approve the administration's request for transferring the money.

Iowa - Kim Reynolds, Fred Hubbell visit Ousted Medicaid Adviser to Hear Concerns about Disabled Iowans' Care
By Tony Mays, Des Moines Register, September 14, 2018
Gov. Kim Reynolds, who dropped David Hudson as a Medicaid adviser this summer, stopped by his house Thursday to hear his concerns about how private Medicaid managers are treating his son and other severely disabled Iowans. 

Reynolds, a Republican, spent more than an hour at Hudson’s Windsor Heights home, after meeting with him in her office earlier this month. Reynolds’ Democratic challenger, businessman Fred Hubbell, visited Hudson's home twice in August.
Hudson drew statewide attention last month from a Des Moines Register story about Reynolds’ decision to drop him as co-chairman of a Medicaid advisory council.

Hudson, a Republican, had used the post to publicly complain about Medicaid management firms limiting payment for services to his son, Matthew, and other Iowans with severe disabilities. He questioned whether the 2016 shift to private management of Medicaid is saving taxpayers much money, as Reynolds’ administrators contend.

The candidates' visits to the Hudsons’ home
illustrate how prominent the Medicaid controversy has become in this year's race for governor.
Hudson said he was bitter last month after Reynolds declined to reappoint him to the Medicaid advisory committee.

But his tone softened after she came to his family’s house with top aides on Thursday. Hudson said they listened to him recount how Medicaid management firms tried to cut payments for in-home care of Matthew, 30, who can’t speak, walk or feed himself because of a severe brain hemorrhage he suffered as a teenager.

“She was very sympathetic. She said, ‘I don’t blame you for being upset. … If I were in your shoes, I would feel the same way,’” Hudson said Friday. “She had a notebook in front of her, and she said, ‘I’m going to take notes. You tell me what you want to change about managed care.’”

Oklahoma - DHS Developmental Disabilities Services to hold Listening Sessions for Families on how to Improve Services
By Katrina Butcher, Oklahoma News 4, September 16, 2018
The Oklahoma Department of Human Services Development Disabilities Services is wanting to hear from families across the state.Officials say they will hold a series of listening sessions around the state in September and October on how DDS can improve services for Oklahomans with intellectual and developmental disabilities.

“We want to hear from families who have loved ones with intellectual and developmental disabilities who are already receiving services as well as those who are waiting for services, about their needs and their concerns,” said Beth Scrutchins, Director of DDS. “We want to hear their ideas about how DDS can improve our current support system and the way families are served while they are waiting for home and community-based services. We have been working over the past couple of years to better understand the needs of families who are caring for loved ones with disabilities and how we can best meet those needs.”

DDS will hold two meeting times at each listening session location from noon to 2 p.m. and 5:30 p.m. to 7:30 p.m.

September 18
Southwest Technology Center, 711 West Tamarack Rd., Altus, OK 73521
September 25
Laura Dester Children’s Center, 7318 E Pine Street, Tulsa, OK 74115
September 26
NWOSU, 2929 E Randolph, Room 127, Enid, Oklahoma 73701
October 2
Kiamichi Technology Center, 1004 Highway 2 North, Wilburton, OK 74578
October 16
Southern Technology Center, 2610 Sam Noble Parkway, Ardmore, OK 73401
October 23
High Plains Technology Center, 3921 34th St., Woodward, OK 73801
October 30
Oklahoma City – location to be determined and announced
Oklahoma - Video from September 18 Listening Session for families of Oklahomans with Disabilities
KSWO News, September 19, 2018
Families affected by disabilities got to voice their concerns to the Oklahoma Department of Human Services today.They were asked to share their thoughts on how Developmental Disabilities Services can improve programs and services for Oklahomans with intellectual and developmental disabilities.

"We've got to change the way we're supporting people with disabilities in our state," said Wanda Felty, parent and waiting list meeting coordinator.

As the mother of a child with disabilities, Felty knows just how tough it can be to find help. She says at one point, her daughter was among the
more than 7,000 people on the waiting list for community-based services.

But now, she is working with DHS to change that.

"So, me, mom, I'm going to come here and support this process, but I also want parents to come and know that there are other family members that want to help them have a voice in designing programs," said Felty.

Massachusetts - Connecticut has moved ahead of Massachusetts on Direct-Care Worker Wages

By Dave Kassel, The COFAR Blog, September 18, 2018

It apparently took the threat of a major strike, but the Connecticut Legislature passed a bill and the Connecticut governor signed it earlier this year to raise the minimum wage of direct-care workers in that state’s Department of Developmental Services system to $14.75 an hour, starting January 1.

A similar effort fell short last year in Massachusetts when a budget amendment to raise direct-care wages to $15 was killed in a budget conference committee in the Massachusetts Legislature.

While Governor Charlie Baker signed separate legislation in June to raise the minimum wage across the board in Massachusetts to $15, that wage level won’t actually be reached until 2023. The minimum wage will rise to only $12 next year, whereas it will be close to $15 in Connecticut for human services workers as of January 1.

It seems that even though legislators and the administration of Governor Dannel Malloy in Connecticut are equally as tolerant of runaway privatization as they are here in Massachusetts, the Connecticut Legislature and governor have shown a greater recognition that increased privatization has resulted in low wages for direct care human service workers, and that low wages have had a negative impact on services.

In May, after the Connecticut Senate voted overwhelmingly in favor of setting the minimum direct-care wage at $14.75, Malloy made a statement that we have yet to hear Governor Baker make:

“For far too long,” Malloy said, “the people who provide care to our most vulnerable neighbors have been underpaid for their critical work.”

Intern ational News
Australia - Disability Patients Dying Prematurely because of Doctors' Wrong Assumptions
By Fiona Blackwood,
ABC News Australia, 14 Sep 2018
People with intellectual disabilities in Tasmania are dying from treatable conditions because some doctors make assumptions about their quality of life, an inquiry has heard.

Clinical Associate Professor Robyn Wallace is a Tasmanian physician specialising in healthcare for adults with intellectual and developmental disabilities.

She was giving evidence at a Legislative Council Committee, which has resumed hearings into acute health services in Tasmania.

"I've got a pile that high of patients who have died this year in our hospitals, preventable deaths I believe," she told the committee.
She said the life expectancy of people with an intellectual disability is 30 years lower than the general population and the gap is increasing.
"Fantastic doctors would wrongly assume that a person with an intellectual disability has no quality of life," she said.

"Therefore at 30 years old when they get a urinary tract infection it's not worth treating and that develops into sepsis and they die.

National News
Larger Trial Of Experimental Autism Drug Planned
By Bradley J. Fikes, The San Diego Union-Tribune via Disability Scoop, September 20, 2018

An experimental autism drug will be more extensively tested next year by researchers at the University of California, San Diego, where a small clinical trial showed early signs of effectiveness in 2017.The trial will be conducted at UCSD and the University of California, Los Angeles. It will test the drug on 20 boys, who will get three infusions over three months. Each will be paired with a similar boy in a control group who won’t get the drug, for a total of 40 boys.

It’s tentatively expected that boys from 5 to 15 will take part, said Dr. Robert Naviaux, the UCSD researcher leading the study. The trial focuses on boys because they are far more prone to develop autism than girls. If girls were included, the trial size would have to be doubled, making it prohibitively expensive, he said. But girls are to be included in later testing.

The drug is suramin, a century-old medicine for sleeping sickness. In the first trial, five boys given a single infusion of suramin showed noticeable improvement in social interaction and function. That improvement faded over two months, although some skills, such as tying shoelaces and new reading words learned, remained.

Treated boys began achieving new milestones such as actively engaging in new language, social games like tag, trying new foods and taking on new interests in music, dance, sports and science. Two of the boys who were nonverbal spoke the first sentences of their lives after about one week.

Five control boys who weren’t given the drug didn’t show significant improvement.

Nicest News Story of the Week
Illinois - Mario Tricoci Opens Hair Salon at Misericordia
By Heidi Stevens, The Chicago Tribune, September 19, 2018
Rosalie Doherty has been going to Mario Tricoci salons since her first haircut.

“I just love the way she comes out of the salon feeling good about herself and knowing how beautiful she looks,” Colleen Doherty, Rosalie’s mom, told me.

Rosalie, 12, was born with Down syndrome. She loves to swim. She has three brothers. She has beautiful chestnut hair that hangs just past her shoulders and bangs that frame her face.

“I just thought, ‘If she and I can do this, why shouldn’t the residents at Misericordia have the same experience?’” Colleen Doherty said. “It’s about dignity and humanity and self-esteem.”

Rosalie lives at home with her parents, but Colleen Doherty said she envisions her daughter spending her adult years at Misericordia. Her husband, City Club President Jay Doherty, sits on Misericordia’s advisory board.
In April, Colleen Doherty approached Sister Rosemary Connelly, executive director of Misericordia, the home for developmentally disabled children and adults run by the Catholic Sisters of Mercy.

A hair salon, Doherty figured, would be a perfect addition. Residents, some of whom use wheelchairs, some of whom have severe developmental as well as physical challenges, wouldn’t have to be transported off campus to have their hair cut and styled.

“Sister said to me, ‘Colleen, I always work better when my hair is done,’” Doherty said.
That was her green light.

Help Needed: Caring for the Forensic Population

Dear Fellow Members of VOR,

I am a parent and a member of the Governor’s Advisory Board at Porterville Developmental Center in California. The Special Treatment Program serves people with intellectual disabilities who are Regional Center clients. Our residents have been involved in a crime, are submitted through the courts because they are incompetent to stand trial. The clients are forensic clients.

The Special Treatment Program services include an array competency training for court appearances and testing, vocational, educational training, medical, dental, and recreational services in addition to individualized services as needed for the client and his family. The program, through professional support, deals with emotional, self-confidence, anger, drug addiction, and other physical issues.

Porterville Developmental Center Special Treatment Program is unique in the state and supported only with state funds. California does not receive Federal Funding for this program.  

Jails are not suitable for our clients. Jails do not provide proper care or individualized programs and can be very dangerous for a person with developmental disabilities. The need is obvious and many family members of people with developmental disabilities, as well as the judges and people in law enforcement, can relate to the security, safety, supports and services this program provides. The Porterville Developmental Center staff are licensed, professional, creative, and trained to work with this special population. Federal funding would allow this program to serve more clients. Currently, we are limited to serve only 211 persons in the program. The program is full and there is a waiting list. 

Please contact me if you are aware of similar programs in your state. I would like to compare funding sources. Email is preferred. I would like to hear from family members, advocates, and staff persons.  Thank you, I look forward to knowing more about the special programs for this very special population in other states.
Sunny Maden
2345 N. Cameron Ave.
Covina, Ca. 91724
“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
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

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