June 26, 2020
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
June 22, 2020
The 21st Anniversary of the Olmstead Decision
July 26, 2020
The 30th Anniversary of the
Americans with Disabilities Act
State and National News:
Note: Below is a follow-up to a previous study was recently published by Syracuse University. While the data for this study was collected in New York State, the authors see this as indicative of system-wide problems with IDD services across the country.
Those with IDD Living in Group Homes More Likely to Die from COVID-19, Study Shows
Syracuse University Report, via Medical Press, June 25, 2020
A new study published recently in Disability and Health Journal by researchers from Syracuse University and SUNY Upstate Medical University shows that people with intellectual and developmental disabilities (IDD) living in residential group homes are more likely to be diagnosed with COVID-19 and die from the virus than those without IDD.

According to the researchers, the disparity is likely related to a higher prevalence of comorbid diseases among those with IDD, and/or a higher percentage of people with IDD living in congregate residential settings.

Their study, "COVID-19 Outcomes among People with Intellectual and Developmental Disability Living in Residential Group Homes in New York State," was published in the Disability and Health Journal. Utilizing data from the New York Disability Advocates (NYDA) and the New York State Department of Health COVID-19 Tracker, the study compared COVID-19 outcomes between 20,431 people with IDD who live in residential group homes in the state of New York to the overall outcomes for New York State.

"The rates of COVID-19 diagnosis and death were substantially higher for people with IDD living in residential group homes," said researcher Scott Landes, an associate professor of Sociology at Syracuse University's Maxwell School of Citizenship and Public Affairs and a research affiliate for the Lerner Center for Public Health Promotion. "This may partly be due to many individuals in this population having pre-existing health conditions that are associated with more severe COVID-19 outcomes."
"However, we are concerned that these severe outcomes may be more related to the current design of the IDD service system in the United States, in which states rely heavily on providing care in congregate settings with limited support and resources," Landes said. "This is proving deadly during the current pandemic."

People with IDD living in residential group homes in New York State were at greater risk of severe COVID-19 outcomes:

Case rates (a measure of the number of people diagnosed with COVID-19):

  • 7,841 per 100,000 for people with IDD.
  • 1,910 per 100,000 for New York State.

Case-fatality (a measure of the proportion of death among those who contract the disease indicating disease severity):

  • 15 percent for people with IDD.
  • 7.9 percent for New York State.

Mortality rate (a measure of the rate of death from a disease among a total population indicating burden of deaths due to a specific disease):

  • 1,175 per 100,000 for people with IDD.
  • 151 per 100,000 for New York State.

Note: Florida Governor Ron DeSantis signed two significant pieces of legislation this week, yet is considering a veto of $128 Million for Disability Services. The two bills cover COVID-19 testing in ICFs every two weeks, and a measure that would clear the way to build new ICFs in Florida.
Florida - Care Facilities to Test Staff for COVID-19 Every Two Weeks
By Greg Giles, Port Charlotte Sun, June 20, 2020

Gov. Ron DeSantis issued an emergency rule Wednesday requiring all long term facility staff be tested for the COVID-19 virus every two weeks.

That includes staff in assisted living facilities, nursing homes, intermediate care facilities for the developmentally disabled and group home facilities.

DeSantis said it's important to have the increased testing since a staff person may get tested with a negative results, only to be infected later on. "You can get it two weeks later. So to constantly go back to the staff … is something that is very, very significant.”

The emergency order does not require that residents be tested, but many facilities are already doing so.
Visitors, even family, are still not allowed to visit residents. It’s been more than three months since in-person visits with family and friends were allowed due to the pandemic.

The Florida Health Care Association issued this statement supporting the new rule:

"FHCA welcomes the opportunity to work with state and local officials to ensure that our care centers test employees every two weeks, and the state's commitment to cover the costs of this testing over the summer is a tremendous help to ease the financial burden on centers.

Florida - These are the Bills Gov. DeSantis Signed into Law
By Jim Saunders, Orlando Weekly, Jun 20, 2020

Continuing to gradually finish the work of this year’s legislative session, Gov. Ron DeSantis on Saturday signed 21 bills, including measures aimed at improving school-bus safety and preventing bear poaching.

The bills were passed during the legislative session that ended in March but did not formally get sent to DeSantis until this month. He still needs to act on dozens of other bills from the session, including a budget for the fiscal year that starts July 1. Among the other bills signed Saturday were:

(SB 1344) - A measure that will help clear the way for building new “intermediate care” facilities for people with developmental and intellectual disabilities.

Florida - Budget Questions Loom for Disabilities Programs
My Panhandle, June 24, 2020
Gov. Ron DeSantis this week signed into law a pair of bills that will change how the state offers services to people with developmental and intellectual disabilities.

But the bigger question is whether DeSantis will veto $128 million in new funding that Senate President Bill Galvano, R-Bradenton, helped put in the state’s upcoming budget for disabilities programs. Advocates say the increased funding is necessary to implement one of the bills (SB 82), which makes changes in how the state’s Medicaid-funded “iBudget” program operates.
Breen said she knows the governor supports the agency and programs for people with intellectual and developmental disabilities.

“But I think it’s just a matter of where he’s going to slash funding. We are hoping the most vulnerable citizens in Florida will not be impacted,” she said.

Note: VOR's new President, Sam Friedman, has been an outspoken advocate for increased testing for COVID-19 in New Jersey's Intermediate Care Facilities. Sam's testimony is featured in the hearing, first at around 22:55, and after having been cut off and told to wait. his testimony resumed at 1:58:50.
New Jersey - Assembly Panel Focuses on COVID’s Toll on Oft-Overlooked Disabled
By Michael Symons, New Jersey 101.5, June 25, 2020
One-third of residents in New Jersey’s five developmental centers have contracted the novel coronavirus, and 173 people in those centers or group homes have died from COVID-19, state lawmakers were told Thursday at a virtual committee hearing.

“While nursing homes have come under the spotlight, little attention has gone toward congregate living facilities that house residents with intellectual, developmental, cognitive and other disabilities,” said Assemblywoman Joann Downey, D-Monmouth, who chairs the Assembly Human Services Committee.

Department of Human Services data shows that as of Sunday, 450 of the 1,238 residents of the developmental centers tested positive for COVID-19, including 32 who have died and 406 who have recovered. Of the 463 staff who have been infected, one has died and 392 have recovered.

Of the roughly 24,000 people with developmental disabilities who live in community settings, which includes but isn’t limited to group homes, 887 have tested positive and 140 have died.
“We mourn for every precious life that has been lost, as well as for the pain and stress that these individuals and their families have endured,” Downey said. “Our state can and must do better by this vulnerable population.”

Valerie Sellers, chief executive officer of the New Jersey Association of Community Providers, said challenges began immediately when the pandemic struck, as centers were short of personal protective equipment but were not immediately prioritized to receive it from the state.

“We were on our own,” Sellers said. “We were literally left on our own to acquire PPE. And we were deemed essential employees, so that was even more shocking. We’re essential employees. You expect them to go to work, and we’re not going to afford them any protections.”

Minnesota - Disability Service Providers on the Brink of Collapse from COVID-19
By Chris Serres, Star-Tribune, June 25, 2020
For more than four decades, Options Inc. in Big Lake, Minn., has helped hundreds of people with intellectual and developmental disabilities find jobs in the mainstream workforce while serving as a refuge for people who have nowhere to go during the day.

But when the nonprofit's board recently analyzed its finances, the outlook was grim. Revenue at the day and employment service provider had plunged 80% since the pandemic began, while costs for its building and fleet of vans continued to pile up. The monthly losses had reached $100,000.

"We are in a constant state of distress," said Brenda Geldert, executive director of Options. "It's going to be impossible to survive unless we get some relief."

The coronavirus is inflicting a heavy toll on Minnesota's sprawling network of government-supported centers that provide job training, mental health therapy and other services for more than 30,000 adults with disabilities. Dozens of centers have been forced to close temporarily since March because of severe restrictions meant to slow the spread of the virus.

Now, after months of layoffs and furloughs, there are growing fears that this often-overlooked piece of the social safety net may collapse, leaving thousands in the lurch.
Advocates fear that the vulnerable populations that the centers serve — with disabilities as varied as autism spectrum disorder, cerebral palsy and Down syndrome — have become increasingly isolated and are not getting adequate therapy and daily stimulation. Many have been confined to four-bedroom group homes where the coronavirus has already struck. Statewide, more than 300 residents of group homes have contracted the virus and at least 19 have died, state health officials said.

At a legislative hearing Thursday, executives with a half-dozen of the state's largest disability service providers sounded the alarm, warning they are running out of cash and may not be able to survive the summer without emergency funding. They are supporting legislation that would give them $30 million in government grants to stay afloat until the COVID-19 restrictions are lifted and the centers can fully reopen. A relief package passed the Minnesota Senate during the special session by a 67-0 vote but never came to a vote in the House.

Opinion: When Autism Advocacy Is "Partial"
By Amy Lutz, Psychology Today, June 23, 2020
It may seem like there are many different issues splitting the autism community—including fights over educational, vocational, residential, medical, and therapeutic services. But these battles really boil down to just one question: Who decides what’s best for those who can’t speak for themselves, the severely autistic individuals who will require upwards of $2.4 million in care over the course of a lifetime? Should it be parents or should it be autistic self-advocates?

For the past four years, I’ve been privileged to work with three Penn colleagues, Matthew McCoy, Emily Liu, and Dominic Sisti, mining literature in bioethics, political philosophy, and history for guidance in crafting a framework that would be helpful in analyzing these debates. In March, our article “Ethical Advocacy Across the Autism Spectrum” was published in The American Journal of Bioethics. In the article, we suggest a new concept, “partial representation” to describe advocacy that is both incomplete and biased—in other words, “when an actor claims to represent a particular group of people, but appropriately engages with only a subset of that group.”

One of our primary examples of partial representation is the Autistic Self Advocacy Network (ASAN), which claims to speak for all autistic people. ASAN has taken several positions—including opposing the use of tracking devices to prevent elopement and supporting the restriction of Medicaid HCBS funding to residential settings no larger than four people—that many parents consider not in the best interests of their severely autistic children and potentially harmful to them. Some self-advocates, in response, have pointed to their shared diagnosis to assert a right to determine the best interests of autistic individuals—including of much more impaired autistic individuals they have never met.
In our paper, we argue that any group that purports to represent the entire autism community is obligated to “actively engage and consult with both autistic people and those closest to autistic people who lack the capacity to participate in decision making themselves.” Admittedly, this is easier said than done.

We also use the example of Autism Speaks, which ASAN has accused of taking the same representative role it claims for itself and speaking for the entire autism community without, on the flip side, inviting the participation of self-advocates. In response to these criticisms, Autism Speaks has tried to broaden its constituency, by adding autistic adults to its board and removing the word “cure” from its mission statement in 2016. But this has done little to appease some self-advocates while alienating some of the parents who were the group’s core supporters.

In my opinion, autism has just become too broad—representing both married college graduates and profoundly intellectually disabled adults who spend their lives in diapers and helmets (to prevent traumatic brain injury from smashing their heads against the wall)—to be fairly represented by one voice.

IDD & Dentistry - NYU Dentistry Awarded $2 Million to Train Dentists to Treat People with Disabilities
NYU Press Release, June 23, 2020

NYU College of Dentistry’s Department of Pediatric Dentistry has received a nearly $2 million grant from the Health Resources and Services Administration (HRSA) to train dentists and other health professionals to provide oral health care to people with disabilities and complex medical conditions. This is the fourth HRSA grant awarded to the Department of Pediatric Dentistry since 2015.

Ohio - Neighbors’ Strong Rejection of Homes for Disabled Youth Leaves Hurt Feelings, Accusations of Discrimination
By Glenn McEntyre, WBNS-10, June 23, 2020
Strong emotions, hurt feelings, and accusations of discrimination, after a debate over a home for young people with disabilities.

The Licking County Board of Developmental Disabilities had proposed two group homes in Liberty Township.

But homeowners pushed back hard.

A field off of Crouse-Willison Road was the proposed site for one of two group homes:

A four-person respite home for youth with developmental disabilities.

"Families sometimes just need rest, and just need a break,” said Jason Umstot, CEO and Superintendent of the Licking County Board of Developmental Disabilities. “When we talk about respite it's not really in a clinical fashion. It's really about rest."

The proposal was up for discussion at a June 8 meeting of the Liberty Township Trustees.
And the public response was overwhelming.
"Children who need to be in respite are in respite because those they normally live with cannot handle them. Those are troubled youth,” said one opponent.

"It's not safe for the children. These teens attack one another. There will not be a police response regardless of whether you've got staff there or not, for a while,” said another.

"No one out here wants this thing. Why are you pushing it so hard right here? No one wants it. Just move it somewhere else,” said a third.
"Nor do I want my kids to be friends, with kids that are troubled,” said one homeowner. “That I have to then have to intervene and explain why we don't do these things. I'm trying to raise my kids in an environment that is healthy and that shows them that we care about one another. We care about our neighbors."

"There are more than 20 neighbors on this call,” said another resident. “You have the whole neighborhood. Not one person in this neighborhood has been in support of this. Period."

“The comments were hurtful. They were hurtful,” said Umstot.

He says he's opened more than fifty homes in his career, but never had a response like this.

"We've come a long way in the last five decades to go backwards. And this really did in our minds set us back to the way we're thinking decades ago."

Brittaney Crider's daughter Natalie lives with a rare neuro-developmental disorder called GRIN2B.

"I think that what hurt me the most is that another mother said she did not want her kids to play with troubled kids. My daughter is not troubled. She has a disability. And it's not her fault, and to just assume that she's that way is just really, really hurtful."

After the June 8th meeting, Umstot pulled this location from consideration.

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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. 6045 & S. 3669 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 5443 & S. 3220 - Ensuring Access to Direct Support Professionals Act -
To amend title XIX of the Social Security Act to clarify that the provision of home and community-based services is not prohibited in an acute care hospital, and for other purposes.

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).

H.R. 1379 & S. 560 - Ensuring Lasting Smiles Act - To require that group and individual health insurance coverage and group health plans provide coverage for treatment of a congenital anomaly or birth defect. (i.e. Cleft palate, ectodermal dysplasia, etc.)
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