March 27, 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
VOR's 2020 Annual Meeting & Legislative Initiative

 Hyatt Regency Capitol Hill
Washington, D.C.
June 6 - 10

The conference has been canceled due to the COVID-19 Pandemic.
All registration fees will be refunded.

VOR and YOU:
A Word Of Thanks Regarding Our Recent Campaigns

In recent weeks, VOR has asked its members and friends to sign on to ask members of Congress not to include a permanent renewal of the Money Follows the Person Rebalancing Act (MFP) and to provide funding for non-profit organizations that receive Medicaid funds, as the measure in the original Senate bill would have cut funding from providers of group homes and private ICFs.

We are pleased to announce that the bill that is passing through Congress at this time has only a temporary extension of MFP, and does not cut funding from non-profits that receive Medicaid funds.

We would like to thank all of our supporters who signed on to our Action Alerts for participating in these campaigns. We would also like to thank VOR's Caroline Lahrmann for her work on these initiatives.
National News : COVID-19
As the nation faces the growing Coronavirus pandemic, we are confronted by the lack of resources for testing for the virus, a dangerous shortage of Personal Protective Equipment (PPE) for medical professionals, a lack of hospital beds, and a shortage of ventilators for people suffering from the devastating pulmonary effects of COVID-19.

Now we are hearing reports of triaging the limited resources, determining which people will receive treatment and which people will be denied. Disability rights advocates, and especially advocates for individuals with intellectual and developmental disabilities, are concerned that the most vulnerable among us may be denied service as a result of choices that medical professionals and lawmakers will be forced to make by the country's lack of preparedness:
People With Intellectual Disabilities May Be Denied Lifesaving Care Under These Plans as Coronavirus Spreads
By Amy Silverman, AZ Daily Star & ProPublica, March 27, 2020
Advocates for people with intellectual disabilities are concerned that those with Down syndrome, cerebral palsy, autism and other such conditions will be denied access to lifesaving medical treatment as the COVID-19 outbreak spreads across the country.

Several disability advocacy organizations filed complaints this week with the civil rights division of the U.S. Department of Health and Human Services, asking the federal government to clarify provisions of the disaster preparedness plans for the states of Washington and Alabama.

The advocates say the plans discriminate against people with intellectual disabilities by deprioritizing this group in the event of rationing of medical care — specifically, access to ventilators, which are in high demand in treating COVID-19 cases. More than 7 million people in the U.S. have some form of cognitive disability.

Some state plans make clear that people with cognitive issues are a lower priority for lifesaving treatment. For instance, Alabama’s plan says that “persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support.” Another part says that “persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.”
Other plans include vague provisions, which advocates fear will be interpreted to the detriment of the intellectually disabled community. For instance, Arizona’s emergency preparedness plan advises medical officials to “allocate resources to patients whose need is greater or whose prognosis is more likely to result in a positive outcome with limited resources.” Between a person with cognitive difficulties and a person without them, who decides whose needs come first?

Medical triage always forces hard decisions about who lives and dies. For instance, older people with shorter life expectancy or those with severe dementia are often deemed less deserving of scarce medical resources than younger, healthier individuals. The state plans make clear that the fate of those with intellectual disabilities is part of the wrenching debate.

HHS officials said they were opposed to rationing care for people with any kind of disability.

“Persons with disabilities should not be put at the end of the line for health services based on stereotypes or discrimination, especially during emergencies. Our civil rights laws protect the equal dignity of every human being from ruthless utilitarianism,” said Roger Severino, the director of the agency’s civil rights office.

Members of Congress Sent a Bipartisan, Bicameral Letter to HHS Secretary Alex Azar and DOJ Attorney General William Barr to Seek Protections for People with Disabilities During the COVID-19 Pandemic:
Alabama limit on ventilators discriminates against intellectually disabled, advocates claim
By Connor Sheets, ALdotCom, March 27, 2020
Alabama’s plan to prioritize who gets a ventilator in a pandemic is facing a legal and ethical challenge, as advocates argue it’s unlawful and unfair to keep people with intellectual and developmental disabilities off the list.

"You're singling out a group of people and the policy is really based on a value judgment that the lives of people with cognitive or intellectual disabilities are less worth living," Rhonda Brownstein, legal director of the Alabama Disabilities Advocacy Program, said in a phone interview Wednesday.

The Alabama Disabilities Advocacy Program and The Arc of the United States advocate on behalf of people with intellectual and developmental disabilities. The two nonprofits filed a federal complaint on Tuesday.

Alabama public health documents currently list "severe or profound mental retardation,” dementia and brain injury as among many potential reasons to be denied a ventilator in a crisis.
The nonprofits argue that Alabama's protocol violates the American with Disabilities Act and other federal laws. They filed the complaint with the U.S. Department of Health and Human Services Office for Civil Rights on Tuesday, arguing that Alabama's protocol puts disabled peoples' lives at risk.
The complaint calls on the federal office to "take immediate action to address this discrimination and assist covered entities in developing non-discriminatory approaches before there are lethal consequences from the application of these illegal policies."

As AL.com reported on Tuesday, the Alabama Department of Public Health issued an updated version of the protocol, dubbed “Criteria for Mechanical Ventilator Triage Following Proclamation of Mass-Casualty Respiratory Emergency,” in 2010. It outlines statewide recommendations for how hospitals should manage access to ventilators during a severe health crisis like a pandemic.

It lists a number of health conditions that could lead to a patient being denied access to a ventilator in an overwhelmed Alabama hospital during a health emergency. The health issues include heart attack, metastatic cancer, "severe or profound mental retardation,” “moderate to severe dementia,” and “severe traumatic brain injury.”

Perspective: The Toughest Triage — Allocating Ventilators in a Pandemic
By Robert D. Truog, M.D., Christine Mitchell, R.N., and George Q. Daley, M.D., Ph.D. New England Journal of Medicine, March 26, 2020

The Covid-19 pandemic has led to severe shortages of many essential goods and services, from hand sanitizers and N-95 masks to ICU beds and ventilators. Although rationing is not unprecedented, never before has the American public been faced with the prospect of having to ration medical goods and services on this scale.

Of all the medical care that will have to be rationed, the most problematic will be mechanical ventilation. Several countries, but not the United States, have already experienced a shortage of ventilators. Acute care hospitals in the United States currently have about 62,000 full-function ventilators and about 98,000 basic ventilators, with an additional 8900 in the Office of the Assistant Secretary for Preparedness and Response Strategic National Stockpile. The Centers for Disease Control and Prevention estimates that 2.4 million to 21 million Americans will require hospitalization during the pandemic, and the experience in Italy has been that about 10 to 25% of hospitalized patients will require ventilation, in some cases for several weeks. On the basis of these estimates, the number of patients needing ventilation could range between 1.4 and 31 patients per ventilator. Whether it will be necessary to ration ventilators will depend on the pace of the pandemic and how many patients need ventilation at the same time, but many analysts warn that the risk is high

Although shortages of other goods and services may lead to deaths, in most cases it will be the combined effects of a variety of shortages that will result in worse outcomes. Mechanical ventilation is different. When patients’ breathing deteriorates to the point that they need a ventilator, there is typically only a limited window during which they can be saved. And when the machine is withdrawn from patients who are fully ventilator-dependent, they will usually die within minutes. Unlike decisions regarding other forms of life-sustaining treatment, the decision about initiating or terminating mechanical ventilation is often truly a life-or-death choice.

Many states have developed strategies for rationing during pandemics. The New York Guidelines target saving the most lives, as defined by the patient’s short-term likelihood of surviving the acute medical episode. Rationing is performed by a triage officer or a triage committee composed of people who have no clinical responsibilities for the care of the patient. Triage proceeds in three steps: application of exclusion criteria, such as irreversible shock; assessment of mortality risk using the Sequential Organ Failure Assessment (SOFA) score, to determine priority for initiating ventilation; and repeat assessments over time, such that patients whose condition is not improving are removed from the ventilator to make it available for another patient.

Autism News:
CDC Report: Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years Measured at 1 in 54

Autism spectrum disorder (ASD) is a developmental disability characterized by persistent impairments in social interaction and the presence of restricted, repetitive patterns of behaviors, interests, or activities ( 1). CDC has been tracking the prevalence of ASD since 1996, beginning with children in metropolitan Atlanta, Georgia ( 2). Subsequently, CDC established the Autism and Developmental Disabilities Monitoring (ADDM) Network, which has reported ASD prevalence in multiple communities in even-numbered years since 2000.

The previous ADDM Network ASD prevalence estimate was 16.8 per 1,000 (one in 59) children aged 8 years in 2014 ( 3). This is approximately 2.5 times higher than the first ADDM Network ASD prevalence estimates of 6.7 (one in 150) from 2000 and 2002 ( 4– 7). Findings from each surveillance year between 2000 and 2014 have included variability and disparities in the prevalence of ASD ( 3– 5, 8– 11). In contrast to other developmental disabilities ( 12– 15), the ADDM Network reported higher ASD prevalence among more socioeconomically advantaged groups and among children classified as non-Hispanic white (white) than among other groups ( 16, 17). Overall, the magnitude of prevalence differences by race and ethnicity has declined in recent years ( 3, 17). Reduction of these disparities might indicate progress toward enhanced detection of ASD among all children.

State News:
Texas - 7 Confirmed Cases of COVID-19 at Denton Facility for People with Disabilities
By Jason Trahan, WFAA TV, March 25, 2020
Seven residents have tested positive for COVID-19 at a Denton facility housing hundreds of people with intellectual disabilities, but it has taken days before health officials have been able to begin widespread testing there. 

Denton officials expressed frustration that there were not enough testing materials to adequately track the disease inside the Denton State Supported Living Center. 

"We’re going to be submitting letters to the governor asking for additional help and resources to help us to combat that there and also to contain it there," said Denton Mayor Chris Watts at a news conference Tuesday. 

Apparently that help came Wednesday when Denton County’s public health department confirmed in a statement to WFAA that “on-site testing has already begun" at the living facility. 
A spokeswoman for Texas Health and Human Services, which runs the Denton facility, was not able to give details about the delays in testing, or how many people will now be tested.

Spokeswoman Kelli Weldon said that "there is no
higher priority than protecting the health and safety of residents, staff and the local communities in
which" the state-supported living centers are located.

Weldon said staff is "working closely" with the Centers for Disease Control and Prevention and the Denton public health department "to determine next steps regarding testing." 

Since Saturday, seven residents at the Denton State Supported Living Center have been hospitalized with COVID-19. All tested positive once hospitalized, officials said.

As of Wednesday, 70 people in Denton County have tested positive for the novel coronavirus, including the seven hospitalized from the Denton State facility. 

The center, located on State School Road in Denton, has 446 residents and 1,727 staff on 189 acres.

Colorado - Health Officials Mum on Details of Coronavirus Outbreaks at 5 Residential Health Care Facilities
By Bruce Finley, The Denver Post, March 24, 2020
Colorado public health officials have revealed they know of at least five “outbreaks” of the new coronavirus inside residential and other non-hospital health care facilities in the state and have notified people who may have been exposed.
But for two days officials have declined to give details, such as how many people may have been exposed or where the facilities are located, despite rising concerns about clusters that can accelerate person-to-person spread of the virus.

These facilities in Colorado rank among at least 146 nursing homes nationwide where federal authorities on Monday said coronavirus cases are confirmed. Roughly 15,000 nursing homes around the nation house 1.3 million people.

It was at one of these facilities, in the Seattle suburb of Kirkland, where an outbreak of the virus led to conditions that federal authorities were
calling a ground zero for the spread of the coronavirus in the United States. At least 35 deaths now have been linked to the Life Care Center nursing facility in Kirkland. Federal inspectors have been looking into what happened.

In Colorado, state health officials “are not publicly identifying the facilities at this time because the investigations are ongoing,” Colorado Department of Public Health and Environment spokesman Ian Dickson said. “… We have notified all who may have been exposed and will continue to provide information as it is necessary to protect public health and slow and limit the spread of COVID-19.”

VOR ❤️ 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?

Contact us at [email protected]
Another Way To Donate
Over the years, VOR members have suggested that donations be made in memory of loved ones with I/DD or their family members, or to honor a member of their community who have helped in the struggle to support services for people with I/DD.

If you are interested in setting up a memorial or a tribute, please use the form on our website. This will ensure that both the donor and person setting up the donations will be notified accordingly.
VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

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. 1342 & S. 548 The Empower Care Act - A Bill to reauthorize Money Follows the Person extension through FY 2023 .


VOR SUPPORTS:

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. 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. 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. 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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