December 20, 2019
Happy Holidays to All our Friends and Family!
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
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State News :
Editor's Note:
Three of the stories in this week's news letter feature two articles.
I included both in order to give our readers a broader perspective.
Ohio - Judge Won’t OK Ohio Settlement on Funding for Care of Developmentally Disabled
By Rita Price, The Columbus Dispatch, December 17, 2019

After listening to emotional testimony Tuesday from families for nearly six hours, a federal judge in Columbus declined to sign off on a proposed settlement in a class-action lawsuit over how and where Ohioans with developmental disabilities make their homes.

Disability Rights Ohio and other legal advocates sued three years ago, saying Ohio’s services system often makes it difficult or impossible for people to obtain the Medicaid-funded waivers that allow them to live in their communities instead of institutions.

The case has created a sometimes-bitter divide between lawsuit proponents and families such as Coulter’s, who fear the settlement will so prioritize community homes over residential centers known as intermediate care facilities (ICFs) that people with profound disabilities will be pushed into inadequate community settings.

Lawyers for the state and the plaintiffs had hoped that Sargus would sign off on the settlement after the hearing. Instead, after listening to opponents for nearly six hours, Sargus said he found the families’ concerns “legitimate.”

In addition to the testimony, nearly 300 people submitted letters urging rejection.

“It was good for all of us, particularly me, to hear this today,” Sargus said. “I’m going to reserve whether to accept the settlement.”

He gave the sides two weeks to come up with a new proposal that would make clear that the settlement does not intend to force or encourage people to leave ICFs if their families don’t want that option.

Sargus also said he wants families with loved ones in an ICF to have a path to return to the court if they feel the agreement is being violated.

Below is a letter written to the Columbus Dispatch in response to the article to the left.

Letter: Judge Gave Families A Chance to be Heard

By Daniel P. Jones, Lewis Center, Dec. 20, 2019

In response to the Wednesday Dispatch article “Judge won’t OK proposed settlement,” based on testimony of families, it is clear reform is greatly needed in Ohio’s broken protection and advocacy system.

Disability Rights Ohio is charged by federal law — and funded by our tax dollars — to protect and advocate for the rights of all individuals with developmental disabilities. Countless DD families told federal Judge Edmund Sargus at the federal hearing on Tuesday that DRO does not protect their disabled child, and in fact, it often acts directly against their child’s interests.

The court heard testimony on a proposed settlement agreement which the state Department of Developmental Disabilities, county boards of DD and DRO urged the court to approve. In a packed courtroom, Judge Sargus heard several hours of testimony from affected families. Families expressed concern about the unfairness of the settlement and the effect it will have on their loved ones who live in large facilities when DODD allocates $100 million to move people from their existing, long-time homes.

As an affected family who attended the hearing, it was heartening to witness Sargus extend such time and attention to this matter as he patiently listened to families and asked probing questions.
Whatever the outcome of this case, families hope through Sargus’ example that Gov. Mike DeWine, county boards and DRO will start to honor choice that protects all precious individuals of Ohio’s DD system.

Whether individuals with developmental disabilities choose large or small facilities, all choices should be honored, protected and accounted for.

Pennsylvania - Bill Placing a Moratorium on Closing State Centers Passes in House
By Kent Jackson, The Citizen's Voice, December 18, 2019

Closing the White Haven and Polk centers creates risk for the people with intellectual and developmental disabilities who live there, especially older residents, members of a board of trustees at White Haven said in a letter to Gov. Tom Wolf.

The letter said Wolf’s plan to close two centers at once is unprecedented and careless.

“Residents of these two centers represent the most medically fragile, clinically and behaviorally complex citizens of our Commonwealth. As we have seen with other closures, moving people with these vulnerable conditions, at their age will result in unexpected deaths,” the letter said.

On Tuesday, a bill placing a moratorium on closing the centers narrowly passed the House Health Committee 13-12. No Democrats supported the bill to the displeasure of prime sponsor, state Rep. Gerald Mullery, a Democrat from the 119th District that includes the White Haven Center. If the bill passes the Republican-controlled Legislature, the governor, a Democrat, plans to veto it.

Gregory Smith, chairman of the White Haven Board of Trustees and primary author of the letter, said Tuesday that residents and workers threatened suicide during the closing of Harrisburg State Hospital, where he was the last chief executive officer.

“It’s a scary time,” said Smith, who wants to warn Ahrens and other leaders at the Department of Human Services. “Make sure you’re watching out not just for residents but for each other.”

He supplied statistics showing the average age of White Haven’s residents is 58.5 years. Two-thirds use a wheelchair, walker or other mobility device. Approximately one-fourth take liquids through feeding tubes.

Ahrens responded that perhaps one-fifth of residents in private settings need the same level of care as people in centers. Private facilities also can care for people who use ventilators, but state centers do not take people on ventilators.

The letter, also signed by trustees Ken Kashatus, Richard Cortese, Gayle Lukas, Debra Reznick and Georgiann Eckrote-Jones, said closing the centers will harm the economies of White Haven and Polk.

A survey by the White Haven Chamber of Commerce in September found businesses expect to lose 15% to 65% of sales if employees and visitors stop coming to town.

Smith, who formerly directed the White Haven Center, supported people who wanted to move to community residences then, as he does now. No one he knows at White Haven, however, currently wants to move out.

While the state has been following a national trend of moving people from institutions to residential settings, Smith said there always will be a need for state centers.

“There are people who need that level of care. I’ve seen them. I’ve worked with them,” Smith said.

He said people who have criminal records and intellectual or mental disabilities might be new candidates for state centers after they are stabilized and ready for release from prisons or forensics centers at state hospitals.

“They have the most challenging behaviors” and might no longer be welcome in group homes. “No one else wants them. They should go to a state center,” Smith said.

Georgia - ‘Overwhelmed’ Mom Charged With Leaving Teen With Down Syndrome At Hospital
By Raisa Habersham and Joshua Sharpe, The Atlanta Journal-Constitution via Disability Scoop, December 17, 2019

Last week, some two dozen women showed up to a first appearance court hearing for a stranger.The spectators were just some of the supporters calling for mercy for Diana Elliott, who stands accused of abandoning her nonverbal 14-year-old son, who police say has Down syndrome, at Grady Memorial Hospital earlier this month. After her subsequent arrest, the mother told police she was “overwhelmed caring for her son” along with her three other children, who are all minors. She was charged with felony child cruelty, and all of the children were taken into custody by the Georgia Division of Family and Children Services.

The bizarre case has drawn widespread attention and started a broader discussion about how families struggle to get by when they have a child who has special needs, while they also may be enduring economic troubles. Articles about the case caught fire online, leading some on social media to express sympathy for the 37-year-old mother. She was arrested by police at a DeKalb County hotel, where they said she was living with her children.

In an interview with The Atlanta Journal-Constitution, DFCS director Tom Rawlings said he couldn’t legally disclose whether the family had a history with the agency, but he said he hopes the case can serve as a reminder that struggling families have access to services that may keep them from becoming desperate.

“It really can push these families to the breaking point,” he said, referring to caring for a child with special needs on top of economic issues. “We want to encourage these folks to ask for help. There are mental health services, homelessness services, children medical services.”

Maine - Waitlists for People with Intellectual Disabilities Grew Again. Here’s what Maine Could Do About It.
By Caitlin Andrews, Bangor Daily News, December 14, 2019

Maine is again trying to reduce waitlists for services to people with intellectual disabilities or autism that have grown to some of the highest levels ever.The state has long struggled to give everyone on those waitlists the services they need. Part of the problem has been not enough funding to keep up with growing demand, and even if slots are open, low wages for direct care staff have made attracting workers a challenge.
The two services — Section 21 and Section 29 — provide different levels of support for these people. Section 21 provides the highest level of support to adults who need near-constant supervision to keep them safe and some work assistance. Section 29 offers in-home services and work support.

Both are provided as Medicaid waivers, and two-thirds of the money is provided by the federal government. The programs are expensive — the state allocated $317 million in this two-year budget cycle. More than 1,900 people were waiting for one service or the other as of Oct. 1.

Waitlists are nothing new in Maine. Solutions being floated by officials are in line with previous efforts. The state says funding waitlists could cost as much as $80 million more per year. Advocates and parents say the current system is flawed and traditional fixes may not work.

Waitlists for the services came more than a decade ago. Their roots stretch back decades. The country began moving away from institutionalization in the 1960s and 1970s as concerns of how people with mental illnesses and disabilities were treated in state institutions gained traction. Section 21 and 29 waivers arose from the closure of the Pineland Center, which was the largest residential facility for people with intellectual disabilities.

Pineland closed after federal lawsuits from residents — first in 1975 and again in 1991 — who argued the state had violated rights to acceptable living standards, and then were not being adequately protected from abuse and were not receiving help in transitioning out of the facility.
A 1994 agreement outlined how the state would provide enough support to allow Pineland residents to leave the center until none remained after the state announced plans to close it. That led to the waiver services, and Pineland closed two years later.

Waitlists for the services came around 2008. Richard Estabrook, the chief advocate in the Maine Department of Health and Human Services’ advocacy office from 1985 to 2012, who now is the vice chair of the Independence Association’s board of directors, said the state routinely underestimated how much money the program needed, while the amount of people who needed Section 21 services continued to grow.

Waitlists have been increasing for years.

Health officials say numbers don’t tell the whole story. As of Oct. 1, nearly 3,200 people were receiving Section 21 services with more than 1,600 waiting for services as of Oct. 1, with 68 percent of waitlisted individuals receiving other services. That’s the second-highest that waitlist has been since it was created.

Maine Must Fund Waitlists for People with Intellectual Disabilities
By Adam Crepeau, Maine Wird, December 16, 2019

On October 8, 2019, the Office of Aging and Disability Services (OADS) released their quarterly update regarding enrollment numbers for Section 21 and Section 29 programs. These are waiver programs that provide home and community-based services to individuals with intellectual and developmental disabilities — Maine’s most vulnerable citizens. According to the OADS, Governor Mills’ first biennial budget provided funding for an additional 167 people in fiscal year 2020. 

Despite needing this assistance most, these individuals are often some of the last to receive services. While Mills’ budget provided some additional funding, there were still approximately 1,600 individuals waiting for Section 21 and 323 waiting for Section 29 services as of the 1 st of October. Mills’ increases actually funded existing state law, which stipulates that 50 people be taken off the waitlists every month until at least 300 new members are added to Section 21. 

The state is currently spending approximately $317 million over the biennium to fund the Section 21 and 29 waiver programs. As of October, there were 3,186 individuals enrolled under Section 21 and 2,286 under Section 29. In order to fully fund and eliminate the waitlists, the state would need to allocate an additional $80 million annually to these programs.
Senator Rebecca Millett has introduced LR 2623, legislation to eliminate Sections 21 and 29 waitlists and provide services to these individuals. The bill was approved by Maine’s Legislative Council and will be considered when lawmakers reconvene in January. While this is a gesture of goodwill and probably made with the best intentions, the proposal should have been introduced and approved last session and included in the 2020-21 biennial budget. 

The state is projected to receive record revenues to fund state government in the 2020-21 biennium and beyond. Instead of using this revenue to eliminate the waitlists, the governor and lawmakers deemed it more pressing to expand Medicaid to able-bodied adults and neglect Maine’s truly needy.

This begs the question: Does the state truly need to put these individuals on waitlists? The answer is no — provided the state prioritizes these individuals before funding other pet projects and individuals who need state assistance less urgently. 

Lawmakers may have a chance to eliminate most, if not all, of the waitlists for Section 21 and 29 services, with a $74.6 million projected surplus by the end of fiscal year 2021, when they return to Augusta in January for the second session.

Thousands in North Carolina Living with Intellectual, Developmental Disabilities Waiting on Waivers
By Hayley Fixler, Fox News 8, December 17, 2019
Tens of thousands of people across the state living with intellectual and developmental disabilities are counting on one waiver. It's a waiver that lets them get the care they need at home.The problem is the need outweighs the number of NC Innovation waivers.

Guilford County has the longest waitlist in the Piedmont Triad. More than 1,131 people are waiting.

FOX8 is told that wait could be more than a decade.

"It's very hard to find doctors. It's very hard when you go into an ER and people shrug you off because they just don't know how to help you," Danielle Murphy said.

The High Point mom's son, Declan, has a very rare, terminal disease.

"It's one in a million. He's literally one in a million," Murphy said. "Pelizaeus-Merzbacher disease is where his brain, he does not produce a protein called myelin. Myelin is what coats all of your nerves in your body."

Now almost 4-years-old, Declan needs help sitting, standing and walking. He also needs to see different therapists daily.
"An Innovations waiver for us would provide respite care. It would provide the modifications we need to our house to make it handicap accessible for him. It would also provide modifications to our car for him," Murphy said.

She and her husband work several jobs to help pay for the extreme costs to care for Declan. Insurance only covers part of it. "It's about $900 a month," Murphy said. "Out of pocket."

So why is it so tough for families, like the Murphys, to get this waiver?

"We're limited to what we're able to do with money from the General Assembly, and also frankly, federal and state rules," said Dave Richard, the deputy secretary of North Carolina Medicaid.

It also comes down to space.

Richard tells FOX8 they only have 12,500 waivers. Just as many people are still waiting for one.
"We don't think it's acceptable that we have waitlists as long as we have," Richard said. "We want to see those additional waiver slots."
Declan has been on the waitlist for two years.

West Virginia - Governor Justice Seeks to End Developmental Disabilities Waiver Program Wait List
Some families say while this is a step in the right direction, their fight is not over just yet.

"This is great news, wonderful news, however, it's not fixed," said Tina Holcomb, a parent who has a child on the waitlist. "It's still broken, (and) we need it fixed. We need a change made, we need something corrected. We need to make sure our families get what they need and deserve."

Families, as well as legislative officials, gathered at the West Virginia capitol on Monday. They held a rally to let their voices be heard.

"Until this is over, until there is no more people on the waitlist or until my last breath, I'm not going to leave them," said Tracy White, a parent advocate. "We will show up every time we need to and make as much noise as we have to, to let them know that our families matter and they need help."

One of those families, is the Holcomb family who has their seven-year-old son, Aidan, on the waitlist at number 788.

"Aidan was diagnosed in March of 2017 with a terminal rare genetic disorder. Basically, his life expectancy is between the ages of twelve to fifteen years old," said Tina Holcomb.

Holcomb says her husband had to quit his job to help take care of Aidan and getting off of the waitlist would mean a lot for her family.

"We still have two older boys that we try to provide for and take care of, they're very active at school and in sports and activities," Holcomb tells WSAZ. "We want to continue for them to live a somewhat normal life even though their brother has a terminal illness we don't want that to hold them back from their needs and wants."

Washington - Criminal Investigation Underway After Developmentally Disabled Woman Dies from Vinegar
By Austin Jenkins, MW News Network, December 13, 2019
The Medicaid fraud division of the Washington Attorney General’s office is conducting a criminal investigation into the death of a developmentally disabled woman who died last February in Spokane.

The existence of the state’s investigation, which began in August, has not been previously reported. The Spokane Police Department said it contacted the Attorney General's office after deciding not to investigate the case itself. That decision came after the Spokane County Medical Examiner ruled the death an accident. 

The woman, Marion K. Wilson, 64, died after her caregiver, who was employed by Aacres Washington, allegedly gave her household cleaning vinegar instead of colonoscopy prep medication. The medical examiner determined Wilson died as a result of severe damage to her esophagus, stomach and small bowel caused by the cleaning-strength vinegar.
As part of its investigation, the state’s Medicaid Fraud Control Division sought and received a judge’s approval this week to conduct a search for records at Embassy Management, LLC in Spokane, the parent company of Aacres Washington.

In his affidavit in support of the search warrant, the investigator, David Fenn, wrote that he believed Wilson’s caregiver committed second degree manslaughter, third degree assault and first degree theft. The alleged theft would likely stem from Medicaid having paid for Wilson’s medical care in the hospital, which was the result of improper care.

Nice News Story of the Week:
Arkansas - Blue Umbrella sells handmade items by Arkansas artisans with developmental disabilities
By Sean Clancy, Arkansas Democrat Gazette, December 16, 2019
Walk into the main offices of the Arkansas Department of Human Services at 700 Main St. in downtown Little Rock and one of the first things you notice is a store.

It's called Blue Umbrella, and it occupies a small space enclosed in glass just to the left of the building's front doors.

It's got — deep breath — candles, rugs, mugs, paintings, pottery, postcards, lanyards (highly coveted by some of the DHS office drones), T-shirts, 'fridge magnets, ornaments, bowls made from melted vinyl records, there's a lot of stuff in here for such a cozy spot.

And it's all handmade by Arkansas artisans with developmental disabilities.

Oh, look. Here comes more.

Cynthia Gilbert is a resident at the Arkadelphia Human Development Center, where she makes candles, wax melts and other items sold at Blue Umbrella.

On this day before Thanksgiving, she has traveled to Little Rock with Jamia Walker, her rehabilitation instructor, bearing boxes of scented candles for the store, which is open 10 a.m.-2 p.m. weekdays.
"Happy," Gilbert says when asked how it makes her feel to create items to sell at Blue Umbrella.
The Christmasy-smelling red, cranberry-apple-marmalade-scented candles are her favorite, she says.

"She worked overtime Monday to make sure every last one of our candles was labeled so we could deliver them today," Walker says.

Gilbert and the other artisans whose handiwork is sold at the store aren't just making these things from the goodness of their hearts, by the way. They get a cut of the profits.

"I keep my money saved," she says.

The idea for Blue Umbrella came from the first DHS Fall Festival, which was held on Main Street in 2016. Items made by residents of the five statewide human development centers — Arkadelphia, Jonesboro, Conway, Booneville and Warren — were sold. DHS clients in other programs, like Easterseals Arkansas, made sale items, too.

"It was so much fun," Gillespie says. "A lot of the clients were there, and they were justifiably proud of the things they made and that people were buying them."

Why not have a store where they could sell their work year-round, Gillespie wondered. She started pestering Melissa Stone, director of DHS' Department of Developmental Service. "I see Melissa once a week, and I would say, 'What about a store?'" Gillespie says.

In the meantime, the 2017 Fall Festival was another success.

"What we were seeing out in the human development centers was that the residents were getting excited about the festival," Gillespie says. "They would spend months getting ready, making things to be sold at the festival. Morale-wise, emotionally, it became a very big deal."

Stone and her team went to work, Gillespie says, and settled on putting the space in the main office.

"Melissa took this kernel of an idea and she actually created the store," Gillespie says.

Of course, there were all those retail, behind-the-scenes things to learn, like the system that reads bar codes, inventory procedures, credit card scanning, how to pay the artisans and how to keep up with taxes.

VOR's Fall-Winter Membership & Fundraising Campaign

VOR relies on donations from families like yours
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It's just that simple.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


H.R. 2417 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

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