June 18, 2021
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all 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 & YOU:
VOR's Virtual Annual Membership Meeting

June 27, 2021

3:00 pm Eastern, 2:00 pm Central, 1:00 pm Mountain, Noon Pacific


Program to include:
  • Address to Members from VOR's President
  • Report on VOR's 2021 Legislative Initiative
  • Reports from VOR's Finance, Legislative, Issues/Oversight and Quality of Care in the Community Committees
  • Certification of the Election of Directors
  • Ratification of Change to Constitution
  • Guest Speaker - Mary Kay Cowen on the Louisiana Dental Task Force
  • Reports from the States**


(Events and program sequence are subject to change)
National (and International) News:
Study Reveals Risk Factors Associated with COVID-19 Outcomes for People with IDD
Reviewed by Emily Henderson, News Medical, June 14, 2021

A study of nearly 550 adults with intellectual and developmental disabilities receiving residential services in New York City found that age, larger residential settings, Down syndrome and chronic kidney disease were the most common risk factors for COVID-19 diagnosis, and heart disease was most associated with COVID-19 deaths.

The study, "Risk Factors Associated With COVID-19 Outcomes Among People With Intellectual and Developmental Disabilities Receiving Residential Services," was published June 8 by JAMA Network Open and provided the first evidence of the risk factors leading to COVID-19 diagnosis and death among people with IDD who receive residential services.

The study's findings suggest that the risk factors for COVID-19 diagnosis and mortality for people with IDD who receive residential services are similar to the general population. It also provided more evidence of increased risk for severe COVID-19 outcomes for people with Down syndrome.

The results from this study reinforce early findings from the U.K. of increased risk for people with Down syndrome during the pandemic. While it will take time for scientists to fully discern the reasons for this increased risk, it is imperative that people with Down syndrome, their families, care providers and medical providers are fully aware of this trend and take all necessary precautions during this time."
Scott Landes, Researcher

The researchers also found that, similar to the nursing home population, an increased number of residents with IDD living in a group home was associated with more severe COVID-19 outcomes.
"We are to a place in the U.S. where access to COVID-19 vaccines is universal," Landes said. "While this will help alleviate some of the spread of the virus, it is necessary to continue monitoring and testing, especially in congregate settings such as group homes.

"However, unlike nursing homes, group homes for people with IDD have not always been afforded the resources necessary to perform routine COVID-19 testing for residents and staff," Landes added. "This is unacceptable. The results from this study indicate that all U.S. states should ensure that group homes are provided the same level of protection as nursing homes or other congregate care settings."
Australia - Preventable Hospitalisation Rates 4.5 Times Higher for People with Intellectual Disabilities, Research Reveals
By Eliza Hull, ABC News Australia, June 13, 2021
In March, Sydney man Jack Kelly had a high temperature and was taken to hospital.

Mr Kelly, 25, lives with cerebral palsy and intellectual disability, and resides in supported group accommodation, where a registered nurse is on call 16 hours a day.

When he had a high temperature, he was taken to a nearby hospital, where he spent six hours waiting in the emergency department to be seen by a doctor before being discharged the next day.
"Due to lack of training with people with intellectual disability, my support workers were too scared, they didn't know what to do, so I ended up waiting in the hospital emergency system," he said. 
"The issue is that in the night, my home is unattended by a nurse due to lack of NDIS funding, so I had to be hospitalised for something I should have been able to be treated at home with." 

Mr Kelly said the trip was preventable, and he's not alone in holding that view.
People with intellectual disability are being preventably hospitalised at a rate 3.5 to 4.5 times higher than the general population, according to new research published on Monday in the Australian Medical Journal.

Researchers are calling for urgent action to address the impacts of the lack of training and awareness within the health care sector on people with intellectual disabilities.

Key points:
  • Research examined the hospital admissions of 92,000 people with intellectual disabilities 
  • It found a significantly higher rate of preventable hospitalisations, compared to the general population
  • Some conditions, such as epilepsy, had an admission rate 22 times higher for people with intellectual disabilities
State News:
Ohio- Disability Rights Ohio Says Budget Amendment Threatens Advocacy Work
By Jenny Hamel, ideastream public media, June 11, 2021
Disability Rights Ohio is lobbying against a budget amendment that would create a joint legislative oversight committee to review the nonprofit every two years.

Disability Rights Ohio (DRO) is raising alarm bells over an amendment to the state’s biennial budget bill that would create a joint legislative oversight committee to review the nonprofit every two years.
The group does not receive state funding and calls the prospect of state oversight “unprecedented” and “harmful.”

DRO gets funding from the federal government and operates as a federally authorized protection and advocacy program, according to Executive Director Kerstin Sjoberg, who explained how the process allows DRO to operate independently from the state as it advocates for people with developmental disabilities.

Part of the group’s work is going into intermediate care facilities and speaking privately with people with developmental disabilities about their rights, Sjoberg said.

DRO says state Sen. Mark Romanchuk, who wrote the Protection and Advocacy Transparency Amendment, wants to establish a joint legislative oversight committee because he doesn’t think the group should be talking to people with developmental disabilities without guardians present. 

But state Sen. Mark Romanchuk (R-Ontario), said he wrote the Protection and Advocacy Transparency Amendment on behalf of worried parents and guardians.

“I have heard the concerns of parents and guardians who have raised questions about the process to remove their loved ones from an Intermediate Care Facility without being consulted. Families need to know their voice matters. That is what we are providing, a way to make sure their voices are heard,” Romanchuk said in an email to ideastream.

The intermediate care facilities DRO visits are licensed by the Ohio Department of Developmental Disabilities and must meet the state’s required standards, but the watchdog group operates independently.
Oregon - State Scrambles for Solutions as Major Disabilities Company Plans Oregon Exit
By Fedor Zarkhin, The Oregonian, June 10, 2021
An Oregon company is shutting down its group homes and services for people with intellectual and developmental disabilities following years of state and federal scrutiny for abuse and neglect of the people in its care, state officials said this week.

Mentor Oregon’s departure will be the largest of its kind in memory, advocates and a top state official said, and will likely prove challenging for Oregon’s already-strained disability services system.

The closure will leave about 1,300 people in need of new service providers by Aug. 31. Only 25 of those people live in group homes and may need to move if the state is unable to cut deals to maintain operations.

“We’re not too focused on ‘why,’ at this point,” Lilia Teninty, director of Oregon Developmental Disability Services, said of Mentor’s abrupt decision to leave. Instead, she said, the state is “focused on continuity” for those currently getting services through Mentor.

Most worrisome for the state is the case management side of Mentor Oregon’s business. The company helps adult Oregonians with intellectual and developmental disabilities connect with personal workers who come to their home or take them into the community for social events.

Most other companies serve up to 700 people, on the larger side, Teninty said, putting Mentor into a league of its own.
U.S. Senator Ron Wyden has helped launch two multi-year investigations into The Mentor Network.

It’s unclear if other case management companies in Oregon have the capacity to take on Mentor’s workload. Even if they do, more than a thousand people with disabilities could lose case managers altogether or have to adapt to new ones, creating new emotional and logistical strains for people with developmental disabilities.

Oregon officials are also working to identify other companies to take over operations for Mentor so the group-home residents – some of whom have lived in the same place for years – don’t have to move.

Mentor Oregon, which is a local branch of The Mentor Network, said it is leaving due to outside factors, including insufficient staff to provide the best possible care. Nationally, The Mentor Network served nearly 13,000 people in residential settings, according to the company’s 2018 public filings.

It’s unclear what, if anything, Mentor Oregon’s departure has to do with recent official and public scrutiny.
Arizona - Staff Members Left Gilbert Group Home Murder Suspect Alone Inside with Other Residents
By Erica Stapleton, 12 News, June 11, 2021

Officers pulled onto Wildhorse Dr. in Gilbert at dawn on April 12 with two staff members from the Tilda Manor group home on that street were waiting outside. They called for help earlier in the morning.

"Are you guys the ones that called?" an officer asked in the newly-released body camera footage.

The staff members explained one of the residents inside, Christopher Lambeth, tried to attack them earlier. The officers said they'd go talk with him. But when police tried to get in the front door, they discovered it was locked. The staff members tell officers they went out the back to get away from Lambeth and hopped the fence to get to the front, leaving other residents locked inside.

About six and a half minutes after police get there, the officers realized someone inside needed help.

"There’s a man inside bleeding from his head," one of the officers said as he peered through the window.
They called for backup and tried kicking in the door.

They immediately tried to help the man inside but found that he has no pulse.

Police later release that Steven Howells, another resident at the home, was bludgeoned to death. A trail of blood led officers to the bathroom where they ultimately found Christopher Lambeth and arrested him.

Lambeth had previously been convicted in 2007 for murdering his grandparents. He was sentenced to life at the Arizona State Hospital, but the state's Psychiatric Security Review Board ruled he could go live in a group home as early as 2017. It's not clear how long he'd been at Tilda Manor. 

Gilbert police haven’t released how long it took officers to get to this house after the staff members called 911. A 911 recording reveals that staff members told the operator they didn’t need an ambulance when they called for help. This means when the staff members left the house. They either didn’t know Howells was hurt or that Howells was killed while the staff members were outside.

It wasn't unusual for police to respond to this particular group home. At the time of the incident, Gilbert Police say they'd responded to the home 52 times since 2019.

Tilda Manor operates 5 state-licensed behavioral health facilities that should offer 24/7 care to residents. 
Mesa Police records show police have responded to the two group homes there a combined 176 times since 2018. Some of those calls included assaults, missing persons and suicide attempts. 
VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 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.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of such special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

VOR SUPPORTS:

There are currently no bills in Congress that protect Choice and support a full range of residential and employment options for all people with intellectual and developmental disabilities.
Direct Support Professionals:
VOR ❤️s OUR DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at


with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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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