Message from VOR to Congress: "Build Back Better", but don't ignore the needs of our family members with the most severe intellectual and developmental disabilities

VOR (a Voice Of Reason) held its annual Legislative Initiative last week, not in-person in Washington, D.C. as it is usually done, but virtually with Zoom meetings, emails, and good old-fashioned telephone calls. The message was clear and easy to understand: the ideology that "everyone does better in the community" is not universally supported within the disability community and it is not the reality that VOR families experience when programs and residential options are undermined or eliminated in the name of integration and inclusion.

The following is from the VOR Weekly News Update for May 21, 2021.

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Why Do Good For Some? Why Not Everyone?

VOR's Legislative Initiative has been in full swing over the last week, and our meetings with people in congressional offices are likely to continue through next week and beyond. One theme that has come up over and over has been the idea that the Administration and members of Congress plan to make major changes, many would say long overdue changes, to the system that deals with services, supports, and employment opportunities for people with I/DD, and that we don't want our loved ones, and our choices for their care, to be swept aside in this effort to do good things.

We worry that the effort to rebuild the system is aimed at only supporting one ideology, the "everybody does better in the community" ideal, or the notion that HCBS [Home and Community-Based Services] services provide a level of care equal to that of Intermediate Care Facilities (ICFs). We know, from our own experience, that neither of these statements are true.

[ICFs/IID or Intermediate Care Facilities for Individuals with Intellectual Disabilities are federally-licensed and Medicaid-funded residential facilities, some as small as 4-bed group homes up to much larger settings. They serve people with the most severe degrees of I/DD and autism, and their families and guardians. These residential facilities offer a full range of services and 24-hour-around-the-clock support to meet the residents considerable needs.]

So we ask that our choices be supported in this effort to do good. The Biden Administration speaks about building back better. We'd like to take it one step further: Let's Build It Right, this time. Stop pitting the interests of one group of people with I/DD against the interests of another. Stop talking about a non-existent "institutional bias" while you are closing institutions and increasing funding for HCBS.

We support the idea of taking people off of waiting lists. But give them CHOICE. Support all options, and give people the opportunity to use whichever option best suits their needs, at this point in their lives. And if and when their needs change, let them then choose an appropriate option to meet their needs at that point in their lives. Just like our society does with non-disabled individuals.

The first two articles in this week's newsletter exemplify what we encounter daily. The Biden Administration, through the American Rescue Plan as passed by Congress, is giving states flexibility to expand disability services in the wake of the COVID-19 pandemic. But the money is only supposed to go to HCBS services. People in ICFs got COVID, too. The staff of ICFs got COVID, too. Why is the Federal Government only giving extra money to the recipients of HCBS services and their staff?

Again, we see that 500 CEO's have committed to programs that advance inclusion for people with disabilities. That is certainly laudable. But why are people still trying to shut down opportunities that people with I/DD currently enjoy, and thrive under, that do not fit the criteria of "integrated employment"?

Why are there no companies trying to create opportunities for people who have skills and the desire to work, but who are, for one reason or another, not candidates for succeeding in a competitive, integrated environment?

We ask that all people be included in the solutions, and that all options be funded. If there is going to be a $400 Billion increase in spending on disability services, shouldn't it be spent on the people who receive the services, and not divided according to the different ideologies or separate funding streams that have turned our systems into a them vs us system?

Let's build it right this time. Let's provide funds to meet the needs and aspirations of all individuals with I/DD, and let's make sure we fund all of the options that meet the needs of this diverse community.

Service provider's plea to Michigan to maintain increased wages for direct care workers

Bridge Magazine,"Michigan’s nonpartisan, nonprofit news source", published an opinion piece by Darren Hodgdon, the CEO of Beacon Specialized Living, a care provider serving individuals with disabilities and mental health needs at over 80 locations across Michigan. 

 The article, "Michigan must keep the wage supplement for direct care workers", 4/27/21, urges the State to make permanent a temporary supplemental wage increase of $2.25/hour for direct care workers who work with people with disabilities, mental illness, the elderly, and others with disabilities.  Covid has exacerbated a problem that already existed:

"While the $2.25 supplemental wage increase currently allows providers such as Beacon to offer a starting wage of $12.50, this is still below what other states are funding and it is only temporary – set to expire again at the end of September. Mental health providers statewide are calling for permanent enactment of the wage increase on an ongoing basis per Gov. Gretchen Whitmer’s Fiscal Year 2021-2022 Budget Recommendation. We also need a clear return to work policy and funding support to help cover the costly weekly testing of employees who may refuse vaccination.

"There are high costs associated with not providing adequate access to specialized mental health services, including detriments to quality of life, uncompensated emergency care, lack of medication compliance and increased hospitalizations. This permanent funding is a vital step to ensuring sustainability and retaining caregivers as they shoulder the critical, but challenging, work of caring for one of Michigan’s most vulnerable populations."

As the economy heats up, as it is expected to do, better paying and easier jobs will become available. There is good reason to believe that many direct care workers, even those who love their jobs and are dedicated to helping people with disabilities, will join the exodus of workers from this difficult and unappreciated profession.  

Hodgdon continues,

"Our citizens and communities simply cannot afford the ramifications of letting this additional pay disappear. It would also recognize the awe-inspiring and critical work these caregivers provide to Michiganders with severe mental illness, developmental disabilities, chronic disease, or substance abuse disorders who rely on this care."

Misuse of CDC data on vaccine side-effects fuels unjustified fears of COVID vaccination

Some resistance to getting the COVID vaccine is driven by terrifying, but mostly deceptive and inaccurate rumors, spread on social media.

First, the good news: The Pfizer and Moderna vaccines have been relatively problem free aside from some temporary side effects that many people experience. According to a report from the Centers for Disease Control and Prevention (CDC), the Pfizer and Moderna vaccines have been highly effective among vaccinated seniors 65 and older.

“In a multistate network of U.S. hospitals during January–March 2021, receipt of Pfizer-BioNTech or Moderna COVID-19 vaccines was 94% effective against COVID-19 hospitalization among fully vaccinated adults and 64% effective among partially vaccinated adults aged ≥65 years.”

This is from the Associated Press: "COVID-19 hospitalizations tumble among US senior citizens" by Matthew Perrone and Carla K. Johnson, 4/22/21.

"WASHINGTON (AP) — COVID-19 hospitalizations among older Americans have plunged more than 70% since the start of the year, and deaths among them appear to have tumbled as well, dramatic evidence the vaccination campaign is working. Now the trick is to get more of the nation’s younger people to roll up their sleeves.

"The drop-off in severe cases among Americans 65 and older is especially encouraging because senior citizens have accounted for about 8 out of 10 deaths from the virus since it hit the U.S., where the toll stands at about 570,000"

Reports of outbreaks among vaccinated people are not surprising. The vaccines were determined to be about 95% effective, meaning that for one out of 20 vaccinated people, the vaccine does not give full protection against the virus. When there is extensive community spread, as there is in Michigan, until the infection rate goes down, there is still a significant risk of contracting or spreading the disease. It is wise to remain cautious, wearing masks where it is not possible to social distance, and avoiding large gatherings, especially at indoor events.

One source of horror stories about vaccine side effects comes from misinterpretation and misapplication of data from VAERS, the CDC Vaccine Adverse Event Reporting System.  

From the CDC Website: “Established in 1990, the Vaccine Adverse Event Reporting System (VAERS) is a national early warning system to detect possible safety problems in U.S. licensed vaccines. VAERS is co-managed by the Centers for Disease Control and Prevention (CDC) and the U.S. Food and Drug Administration (FDA). VAERS is a post-marketing safety surveillance program, collecting information about adverse events (possible side effects) that occur after the administration of U.S. licensed vaccines. This online database provides a nationwide mechanism by which VAERS reports are made available to the public and may be reviewed and analyzed…”

No specific conclusions can be drawn from the VAERS reports on whether the COVID vaccines actually caused the reported side effects. The CDC issues a strongly worded DISCLAIMER to prevent it being used to prove causation:  

"VAERS accepts reports of adverse events and reactions that occur following vaccination. Healthcare providers, vaccine manufacturers, and the public can submit reports to VAERS. While very important in monitoring vaccine safety, VAERS reports alone cannot be used to determine if a vaccine caused or contributed to an adverse event or illness. The reports may contain information that is incomplete, inaccurate, coincidental, or unverifiable. Most reports to VAERS are voluntary, which means they are subject to biases. This creates specific limitations on how the data can be used scientifically. Data from VAERS reports should always be interpreted with these limitations in mind. [Emphasis added]

"The strengths of VAERS are that it is national in scope and can quickly provide an early warning of a safety problem with a vaccine. As part of CDC and FDA's multi-system approach to post-licensure vaccine safety monitoring, VAERS is designed to rapidly detect unusual or unexpected patterns of adverse events, also known as 'safety signals.' If a safety signal is found in VAERS, further studies can be done in safety systems such as the CDC's Vaccine Safety Datalink (VSD) or the Clinical Immunization Safety Assessment (CISA) project. These systems do not have the same limitations as VAERS, and can better assess health risks and possible connections between adverse events and a vaccine."

These are additional warnings on the limitations of VAERS data:

Review the limitations and interpret VAERS data with caution:

The data are unverified reports of health events, both minor and serious, that occur after vaccination.

•VAERS data are from a passive surveillance system. Such data are subject to limitations of under-reporting, reporting bias, and lack of incidence rates in unvaccinated comparison groups.
• Reports show the simultaneous administration of multiple vaccines (making it difficult to know to which of the vaccines, if any, the event might be attributed).
• VAERS occasionally receives case reports from U.S. manufacturers that were reported to their foreign subsidiaries. Under FDA regulations, if a manufacturer is notified of a foreign case report that describes an event that is both serious and unexpected (in other words, it does not appear in the product labeling), they are required to submit it to VAERS. These case reports are of variable data quality and completeness, due to the differences in country reporting practices.
• In some media reports and on some web sites on the Internet, VAERS reports are presented as verified cases of vaccine deaths and injuries. Statements such as these misrepresent the nature of VAERS. [Emphasis added]
• Establishing causal relationships between vaccines and adverse events requires additional scientific investigation. The CDC and FDA take into account the complex factors mentioned above, and others, when monitoring vaccine safety and analyzing VAERS reports.
• VAERS staff at CDC and FDA follow up on all serious adverse event reports to obtain additional medical, laboratory, death certificates, and/or autopsy records to help understand the circumstances. However, VAERS public data do not generally change based on the information obtained during the follow-up process.
• See also the Disclaimer at Summary above. 

When you read assertions on social media that the COVID vaccines have caused thousands of deaths and injuries, the source may have inadvertently or deliberately distorted information from VAERS.