September 27, 2019
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 and YOU:
Our Fall Fundraising Campaigns

September is almost gone,October is around the corner. and like many other organizations, VOR is beginning its Fall Membership and Donation Campaign.

Also, like many other organizations, we have been hit pretty hard for donations this year . But VOR is not like other organizations. We fight for families like yours. We give a voice to those who cannot speak for themselves. We advocate in statehouses, court houses, and in the House of Representatives. We help families learn to advocate locally as well as nationally. And we need your help, in order that we may better help you.
This month, we supported our families in Pennsylvania, where the Governor is determined to close two of the state's four centers. Next month, we are going to Florida, to reach out to ID/DD providers at the American Health Care Association's Annual Meeting. In November, we will be partnering with Together For Choice to advocate with our legislators and their aides on Capitol Hill.

As you read this week's newsletter, think about the impact that your donation can have in helping to speak for those who are not well served by the current DD system. Read the article about the people who died in a fire in an unregulated group home in Wisconsin. Read about the people in Alaska, who no longer receive preventive dental care because of cutbacks to the state's Medicaid program. Read about the CDC's report on the spike in Developmental Disabilities, and about the marginalization of people with Severe Autism. Read about the waiting lists in Missouri and the lack of behavioral health services in Arkansas as a direct result of the state's managed care program.

And please watch the video of the hearings in Pennsylvania, as those poor families are being told that they will receive "equivalent services in the community" by the people who run the very agencies that are making all of the above cuts to services in "the community".

So this year, please dig a little deeper.

If you've let your membership lapse, renew it now, and add a gift membership for a family member. Ask the people in your family group to become members. Give a gift membership to the DSP who works with your loved one. And donate. Your generosity makes all of our work possible.

Thank you for your support, your determination, and for adding your voice.
Pennsylvania ICF Closure Update
Pennsylvania State Senate Meeting on Closure of White Haven and Polk Centers

On September 24, 2019 the Pennsylvania State Senate held hearings to investigate the process that led Governor Tom Wolf and Secretary of Human Services Teresa Miller to declare that the White Haven and Polk Centers would be closed and the residents of those two state-operated facilities would be transferred to community centers or sent to the other end of the state to live in the two remaining state-operated ICFs.

VOR's Susan Jennings testified at the hearing, along with VOR member John Hirschauer and VOR's Executive Director Hugo Dwyer. Several other members of VOR were in attendance, as well. The audience was filled with family members of the residents of the two centers, and a large contingent of caregivers who showed their concern for the residents, for their jobs, and for their community.

A full recording of the hearing may be viewed at

While we would encourage our members to view the entire video. Highlights include the testimony of
  • James Latronica (5:40 - 10:40)
  • Sherri Landis of the ARC (16:15 - 19:30)
  • Carl Solano (20:00 - 29:40)
  • Q&A of the first panel by Senators (37:00 - 1:05:20)
  • VOR's John Hirschauer, Susan Jennings, and Hugo Dwyer (1:06:45 - 1:36:40)
  • Staff members, DSPs, and Union Representatives of Polk and White Haven (1:45:00 - 2:04:00)
  • Randy Seitz, Chairman of the Penn-Northwest Development Assn. (2:08:00 - 2:14:00)
  • Teresa Miller - Secretary of the Dept. of Human Services (and Q&A) (2:18:00 - 3:13:30)

(All times are approximate)

One key takeaway from this hearing was the secrecy with which Teresa Miller and Governor Wolf carried out the act of determining whether or not to close any state-operated ICFs, which facilities they might choose and why, and why they refused to consult with any stake-holders in making this rash decision. N o residents, family members, facility administrators, caregivers, union members, or community leaders or chambers of commerce of the affected counties and regions were consulted by Wolf or Miller in this process. 
Media Coverage of White Haven and Polk Center Closures and Hearings

Hearing on Plan to Close White Haven Center
By Chelsea Strub, WNEP-TV16, September 25, 2010

White Haven Center Receives Support at Committee Hearing
By Kent Jackson, Citizens' Voice, September 25, 2019

Pennsylvania’s Facility Closures Hurt the Mentally Disabled
By John Hirschauer, National Review, September 26, 2019

Capitol Hearing ‘Only the Beginning’ of White Haven Center Debate
By Roger DuPuis, The Times-Leader, September 24, 2019

Pa. Senate Hearing Today on White Haven, Polk Closures
By Bill O'Boyle, The Times-Leader, September 23, 2019
National News:
CDC Records Spike In Kids With Developmental Disabilities
By Michelle Diament, Disability Scoop, September 26, 2019

The number of American children with developmental disabilities “increased significantly” in recent years, according to a new report from the Centers for Disease Control and Prevention.

One in 6 children — or 17.8 percent — had at least one developmental disability in 2017, researchers from the federal agency say in a study published online Thursday in the journal Pediatrics. By comparison, in 2009, that figure was at 16.2 percent.

Why the Focus of Autism Research is Shifting Away from Searching for a 'Cure'
By Jacqueline Stenson, NBC News, September 22, 2019

When autism research started to really accelerate a couple decades ago, many scientists thought finding a cure might be easier. Today, the latest science points away from a single cure, but there are ways to help autistic people lead healthier, happier lives and more that can be done to help.

“I think that given the complexity and the variability of the causes and the manifestations of autism, trying to come up with a cure is probably not the right approach,” said autism researcher and psychologist Len Abbeduto, director of the University of California, Davis, MIND Institute in Sacramento.

An estimated 80 percent of autism cases involve genetic factors, and it tends to run in families, but there is no single “autism gene,” Abbeduto explained. In fact, research has shown that more than 100 genes, and maybe upwards of 1,000, may play a role. Researchers also suspect that environmental factors — such as exposures to infectious agents, pesticides or other toxins in pregnancy — may play a role.

“Scientists are investing a lot of work into understanding the genes but we’re also realizing it’s a lot more complicated than anybody ever thought when they started out,” psychologist Ann Wagner, national autism coordinator for the U.S. Department of Health and Human Services, said.

By Jeffery L. Hayden, PhD, BCBA-D and Jane McCready, National Council on Severe Autism, September 6, 2019

Three recent studies have demonstrated that research has been increasingly marginalizing individuals with severe forms of autism spectrum disorder (ASD). 

In an article published last month in JAMA Psychiatry, Rodgaard and colleagues examined the scientific literature from 53 years, 1966 through 2019, to determine if and how the differences between ASD subjects and control (normal) subjects changed over time. The authors also examined how these changes correspond to changing definitions of ASD and the associated increases of those diagnosed with ASD. 

They found that the differences between those with and without ASD has decreased over time, in other words from what was once a homogenous group to a heterogenous one. This is worrisome, they said, because the growing heterogeneity may create challenges for research. They said:

“[G]radual changes to a diagnostic category, such as autism, and blurring of the distinction between autistic traits and autism could potentially affect our ability to advance mechanistic models of the condition. The belief within autism research that large heterogeneous populations are preferable compared with small narrowly defined ones in the search for scientific truth may be open to question.”

In other words, by diluting what we mean by “autism” we are losing the ability to find meaningful commonalities in biology and treatment, to the detriment of those with ASDs. What may be true for severe autism may be very different for those with HFA, and lumping together drowns out distinctions.

Bill Aims To Boost Direct Support Workforce
By Michelle Diament, Disability Scoop, September 27, 2019

Federal lawmakers are looking to address the nation’s shortage of in-home caregivers assisting people with developmental disabilities. Legislation introduced this month is designed to help make the field of direct care work more attractive and lead to less turnover.

Those behind the bill known as the Direct CARE Opportunity Act, or H.R. 4397, point to estimates from the government’s Bureau of Labor Statistics suggesting that a million more direct care workers are needed by 2024 to join a field that has long been plagued by low wages and the demanding nature of the work.

“Direct care workers provide invaluable support to seniors and people experiencing disabilities — but … across the country, there are not enough people to fill these critical roles,” said U.S. Sen. Maggie Hassan, D-N.H., who introduced the bill along with Sen. Tim Kaine, D-Va. “This bill not only helps to close this workforce gap, but will also directly benefit the direct care workers by investing in training as well as career advancement.”

The measure would provide funding to 15 entities to develop plans to recruit, retain and offer advancement opportunities to caregivers. It also pushes for the use of strategies to make direct care work more desirable through training and mentoring.

“Despite the high demand for this workforce and the critical role it plays, constraints within the Medicaid system which funds disability supports have kept wages too low to retain staff, given the responsibilities of the work,” wrote Sarah Meek, ANCOR’s director of legislative affairs, in a letter to lawmakers. “The Direct CARE Opportunity Act’s grants for pipeline programs and investments in training are important first steps to addressing this crippling workforce crisis.”

Note: This bill will not provide funds Direct Support Professionals. There are no provisions for raising the federal minimum wage that governs their salaries, nor will this bill cover their enrollment in training programs to improve their skills and increase their value and effectiveness as caregivers.

The funds are to be given to "entities" that will create plans to increase the number and training of DSPs.
State News:
South Carolina - Commission for SC Disabilities and Special Needs Agency Mostly Vacant with 4 Empty Seats
By Lauren Sausser, The Post and Courier, September 22, 2019
A state commission charged with helping South Carolinians with severe disabilities and special needs, including those with autism and traumatic brain injuries, will remain mostly empty for at least four more months. Until then, there aren’t enough members on the commission to constitute a majority or take a single vote.

Four of seven seats on the commission are empty, including the seat representing the Charleston area. Commissioners must be appointed by the governor and approved by the state Senate. Each commissioner represents a congressional district.
Agency officials have asked the Attorney General’s Office if two out of three commissioners constitute a quorum under these circumstances, said Robb McBurney, a spokesman for the S.C. Department of Disabilities and Special Needs. Without a quorum of commissioners, the agency can’t conduct simple business, such as approving an annual budget or making major purchases.

Missouri - Division of Developmental Disabilities Implements a Waitlist for Waiver Services
Staff Report, Daily Star Journal, September 26, 2019
The Department of Mental Health announced that effective July 1, 2019, the Division of Developmental Disabilities would implement a waitlist for in-home and residential Medicaid waiver services for individuals with developmental and intellectual disabilities because the Missouri State Legislature did not approve adequate funding.

The Fiscal Year 2020 budget that was approved by the Missouri General Assembly only includes enough funds to serve approximately 444 new individuals annually, which is expected to leave more than 800 individuals waiting for services.
Services affected include residential, personal assistance, behavior therapy/counseling services, specialized medical equipment and supplies, day habilitation programs, employment services and adaptive equipment.

"This is an unfortunate situation that will eventually end up costing tax payers more money," Kyle .
Schott, president of the Missouri Association of County Developmental Disabilities Services, said

"When individuals are denied these very necessary services it can cause an exacerbation of their condition resulting in hospitalization or nursing home placement. This lack of services will result in more costly services that could have been otherwise avoided. We should be looking at ways to increase availability of services to help bring dignity to some of our most vulnerable citizens.”

While the Governor Recommended budget for Fiscal Year 2020 included $30.3 million for over 1,700 individuals with disabilities to access both residential and in-home services, the approved budget only includes $8.5 million.

Tennessee - Disability Advocates Fret As Medicaid Block Grants Inch Toward Reality
By Andy Sher, Chattanooga Times Free Press, September 22, 2019
Health care advocates for the poor are fretting over the potential effect of Gov. Bill Lee’s proposed Medicaid block grant waiver on 150,000 or more Tennesseans with disabilities should it win approval from the Trump administration.

“Our concern really is that in a block grant scenario, people with disabilities are feeling like they have a large target on their backs,” said Carol Westlake, executive director of the Tennessee Disability Coalition, during a conference call with reporters last week.

Westlake said the worry is that “as things tighten up, which they are likely to do under a block-grant scenario, that benefits, services and eligibility of folks that we care about are the first things that are going to get cut.”

When unveiling his proposed $7.9 billion waiver request for TennCare, the state’s $12.1 billion version of the jointly state and federal Medicaid health care program, the governor emphasized to reporters that “what’s important to know is that there’ll be no reduction in benefits under this program.”
“No one that is currently being served is not going to be served as a result of eligibility under this new plan,” emphasized Lee, who has stated repeatedly he won’t go through with the waiver if Tennessee can’t strike a good deal with the U.S. Department of Health and Human Services and its ancillary Centers for Medicare and Medicaid Services.

TennCare, created in 1994, contracts with insurance companies which operate managed health care plans that strike agreements with providers such as hospitals and physicians to provide health services to low-income children, pregnant women, the children’s care takers, seniors and people with disabilities. TennCare currently covers 1.4 million Tennesseans.

Last week, Tennessee became the first state in the nation to formally begin the process of seeking a federal Medicaid block grant waiver. The Trump administration and Republicans at the federal level are pushing block grants as a means of cutting federal costs. Lee, a Republican, was directed to do so by the state’s GOP-controlled General Assembly.

Alaska - Special Needs Patients Struggle after Elimination of Preventative Medicaid Dental Coverage
By Samie Solina, KTUU TV, September 27, 2019
Families of special needs patients say that Governor Dunleavy’s cuts to Medicaid leave them without coverage for preventative dental care.
“When they cut it, everything went away,” said Cathy Scott, a mother of a 30-year-old man living with special needs.

Scott’s son, David Scott, is non-verbal and lives in a care facility.

When David Scott needs dental care, he often needs to go to the hospital where he is given anesthesia because of his needs,

“It’s imperative that we get dental care for him,” Cathy Scott said. “He couldn’t have a cleaning, he couldn’t have a regular check-up.”

Dr. Lara Mabry does dental work on David Scott and about 250 other special needs individuals.

Her practice, Mabry and Mabry Dentistry, LLC, has specialized in the care of people that have special needs.

“Everybody has a right to be treated, oral health needs to be treated,” she said.

Patients relying on Medicaid will no longer be covered for preventative care like cleanings, fillings, X-rays, exams, root canal therapy and more, according to Dr. Mabry.

Arkansas - As Little Rock Mental-Health Clinic Shuts, Clients Face Search for Services
By Kat Stromquist, Arkansas Democrat-Gazette, September 22, 2019
In a low-ceilinged room at Pinnacle House, about a dozen clients of the day treatment center sat in rows, eating a lunch of tacos, corn and pieces of pineapple that had been sliced by one of their social workers.

Within days, the program for people who have mental-health disorders would be disbanded as operator Little Rock Community Mental Health Center prepared to close its doors.

Officials at Little Rock Community Mental Health Center have cited financial insolvency as the reason for its closure, attributing the nonprofit's struggles to changing payment models and administrative costs.

While there are more than 90 behavioral health providers in Pulaski County, advocates say the loss of this center -- long-established, and where it was relatively easy to get an appointment -- opens a gap in the treatment landscape.
Since the closure was reported to the state Department of Human Services last month, Little Rock Community Mental Health Center staff members (and the department, for some patient groups) have been working to notify about 2,500 clients that day treatment, outpatient and pharmacy services will end.

Behavioral health services have recently been a subject of angst among Arkansas providers as the Human Services Department has reorganized its payment models and shifted to a managed-care system for Medicaid beneficiaries.

Wisconsin - 3 Dead in Fire at Group Home for Mentally Disabled
Associated Press, via CT Post, September 19, 2019
Three residents have died in a fire at a group home for intellectually disabled people in eastern Wisconsin Thursday, officials said.Two residents escaped the fire, which started about 6 a.m. at the Fond du Lac group home, while three others were found dead on the second floor, fire officials said.

The residents who escaped alerted firefighters that others were still inside, according to Fond du Lac Fire Chief Peter O'Leary.

"We don't know yet what transpired that they couldn't get out. We look at smoke alarms, make sure they were working. Did they have a plan (to escape)? Did they know what to do?" O'Leary said.

The home is for adults who can care for themselves, but have cognitive disabilities, officials said.
According to Fond du Lac community development director Dyann Benson and county records, Paul and Julie Thelen own the home, the Fond du Lac Reporter said. O'Leary said the house is rented out for people with cognitive disabilities to live in a group setting. Benson said as a four-unit home, the house was not regulated by the city, and a spokeswoman for the Wisconsin Department of Health Services said the agency also did not regulate it.

Florida - 87-Year-Old Killed Her Disabled Grandson With Overdose, Police Say
By Derrick Bryson Taylor, the New York Times, September 25, 2019
A Florida woman who cared for her disabled adult grandson on weekends faces second-degree murder charges after she told the police she gave him a fatal overdose over concerns about who would care for him when she died, the authorities said.

The police responded to a call on Sunday afternoon in Bradenton, Fla., about 40 miles south of Tampa, and found the grandson, Joel Parks, dead at the scene, Capt. Brian Thiers of the Bradenton Police Department said in a news conference on Tuesday. Mr. Parks was discovered by a sister.

Mr. Parks, 30, lived with his grandmother and part-time caretaker, Lillian Parks, 87, on weekends and
in a group home during the week, Captain Thiers said. Mr. Parks was unable to care for himself, but details about his exact health condition were not known, he added.

After the authorities arrived, Ms. Parks made “several concerning remarks, spontaneous remarks,” including that she had “purposely overdosed” her grandson, Captain Thiers said.

“She was concerned about her medical condition and was worried about who would be caring for him in the event that she passed away,” he added. Mr. Parks’s father is deceased and his mother is estranged, Captain Thiers said.

Nice Story of the Week:
Arkansas - DHS's Fall Food & Craft Fair
From The Vine, THV11, September 26, 2019
DHS’s Division of Developmental Disabilities Services (DDS) is hosting its 4th Annual Fall Food and Craft Fair. About 20 vendors and eight food trucks will fill Main Street 11 a.m. to 2 p.m. Friday, September 27th, outside the DHS central office in Downtown Little Rock. People will be able to buy items made by DDS clients while enjoying great food from local food trucks. 

Events like this give clients, whether they live at one of DHS’s Human Development Centers or are getting in-home or community-based services from one of our partners, a chance to connect with the public and show them how they can contribute to our communities. 

Everything you buy at the Fall Food and Craft Fair has been made by someone in our community or state, meaning you are supporting them and helping the local economy.

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. 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.

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. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes. On September 19, 2019 the Senate Passed the bill and sent it to the president to sign into law.

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).

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?

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