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.

Housing Projects for People with Developmental Disabilities in Southeast Michigan

This is a Webinar from Together For Choice: Community Highlights

 

Introducing two newly developed integrated communities in Michigan, St. Louis Guanella Village and Maple Oaks Community! 

Bill Godfrey discusses an established community in Saline, Michigan and also discusses projects "on the drawing board" in other towns in Southeast Michigan.

 

St. Louis Center is developing the Guanella Village on its campus in Chelsea, Michigan, along with other services for people with intellectual and developmental disabilities and the local community.

Comments on the proposed Home and Community Based Services Access Act of 2021

The Home and Community Based Services Access Act of 2021 (HCBS Access Act) has been drafted for the purpose of seeking comments on various aspects of Mediciad-funded care and services. It would provide more funding to HCBS in community settings and eliminate waiting lists for services and much more, but, as always, the devil is in the details. Comments were due on 4/26/2021, but there should be more opportunities to comment as the proposal moves toward becoming legislation in the US House and Senate. My Congresswoman Debbie Dingell, who represents Michigan's 12th Congressional District, is among those sponsoring this legislation. This is the announcement asking for comments and Representative Dingell's Website with more information.

I'm good at finding devils in the details, a useful exercise when it appears you are being offered a bonanza of services and benefits, but in exchange, you are also being restricted from accessing benefits more appropriate for your disabled family member.

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April 26, 2021

From: Jill R. Barker, Ann Arbor, Michigan

Re: Comments on the proposed 2021 Home and Community-Based Services Access Act (HCBSAA) 

To: Representative Debbie Dingell, Cannon House Office Building, Room 116
Washington, D.C. 20515-2212

Senate Special Committee on Aging, Dirksen Center Office Building, G 31 Dirksen Center Office Building:

Chairman Bob Casey, Ranking Member Tim Scott, Senator Maggie Hassan,Senator Sherrod Brown

Dear Representative Dingell, Chairman Casey, Ranking Member Scott, Senator Hassan, and Senator Brown, and other members of the Senate Special Committee on Aging:

I am the mother of two adult sons, Danny Barker (age 44) and Ian Barker (age 36), who have profound, life-long intellectual and developmental disabilities (I/DD).

Danny has severe cerebral palsy, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting.

Ian had problems at birth similar to those of his brother. He also has profound intellectual and developmental disabilities, and, like Danny, he needs total care. He is unable to recognize dangerous situations, much less to protect himself from them. He shares a room with his brother in the same group home where they receive good care.

COMMENTS:

The continued availability of good care that is appropriate to my sons’ needs is precarious due to Michigan’s chronically underfunded mental health system and misdirected efforts that assume that full inclusion in “the community” is attainable and desired by all people with disabilities and their families. The failure to acknowledge the limitations of the full inclusion ideology and the reality that my sons will never attain the desired outcomes of independence and self-determination hamper efforts to improve their quality of life and the effectiveness of programs that serve their needs.

Among the national disability organizations that have commented on the proposed HCBSAA bill, I fully endorse the comments from VOR, a Voice of Reason, NCSA, the National Council on Severe Autism, and the analysis from TFC, Together For Choice. These are organizations that represent people like my sons, who have the most severe disabilities and are the most often underrepresented by other disability organizations and by government sponsored national councils and advisory committees. The organizations mentioned above support a full range of residential and service options to meet the diverse needs of people with severe I/DD and severe autism. 

The first reason listed for the proposed HCBSAA is incomplete and misleading. “In order to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting.”

The Americans with Disabilities Act states that “A public entity shall administer services, programs, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” [emphasis added]. This makes clear that the appropriateness of the setting to the individual is of primary importance.

The ADA does not restrict individuals from receiving needed services in specialized settings for people with disabilities nor does it allow public entities to prevent access to services and benefits available to all.

The 1999 U.S. Supreme Court Olmstead decision affirms this interpretation of the ADA and includes protections and choice for people in institutional settings and those needing an institutional level of care.

Workforce Development

I was glad to see that one of the purposes of the proposed legislation is “…to improve direct care work quality and address the decades long workforce barriers for nearly 4,600,000 direct care workers giving support to people with disabilities and aging adults in their homes and communities”. Most direct care workers in both community, institutional, and other congregate settings, have difficult jobs that are undervalued and often unrecognized for their importance. When I came to the end of the proposed bill), I was disheartened by this – “SEC. 7. WORKFORCE DEVELOPMENT…To be supplied” (at least, this is how my version of the bill reads). This is such an important and neglected aspect in providing care to people with disabilities that perhaps it deserves its own piece of legislation. I believe that poor pay, poor working conditions, and lack of status in the workforce could be a leading factor in the collapse of the system of care for people with disabilities, which at times seems imminent. 

Purposes of the HCBS Access Act

Justification to require State Medicaid coverage of home and community-based services is based on false and misleading statements. For example, “…decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.”

No competent researcher would make such sweeping statements and pretend that they knew what is possible or desirable for all people with disabilities.

I was on the Michigan Developmental Disabilities Council from 2013 to 2016. At one of the early meetings I attended, a representative from Michigan Protection and Advocacy Services [now Disability Rights Michigan] made the statement that “…we now know that all people with developmental disabilities can work in integrated, competitive work settings for at least minimum wage.”

Whoever decided this, did not talk to me and they never met my sons.

Non-existent and poor-quality services that do not appropriately serve people with severe disabilities, as well as unsafe and unaffordable housing for people with disabilities in the community are staggering problems throughout the country. This legislation would likely push states to move people, often against their will, into unsafe and unprepared communities from congregate settings without dealing with the reality of the present crisis in community care. It is highly unlikely that this proposed legislation will solve all these problems even with new infusions of funding, when the policies do not acknowledge the full range of need and the services to provide for those needs. 

Individualized Assessment allows determination of services and supports by a State approved health care worker with no discernable way for the person with a disability or a legal representative to challenge this determination.

While promoting the idea of independence and self-determination for the person with a disability, the proposed HCBSAA has no discernable way that the person with a disability, or their legal representative, when appropriate, is allowed to participate in determining the needs of the eligible individual. Nor is there any mention of how determinations made by a state approved health care provider can be challenged or overturned:

The HCBSAA requires an individualized assessment of the person with a disability “to determine a necessary level of services and supports to be provided, consistent with an individual’s functional impairment…” The health care provider must be approved by the state to make the determination of the level of services and support.

To make sure that the state approved health care provider does not go too far astray from the desired outcome of policies set forth in the HCBSAA - that everyone can and should be served and live “in the community” - the proposed bill requires that the assessment be “…conducted with the presumption…that each eligible individual regardless of type or level of disability or service need, can be served in the individual’s own home and community; and…at the option of the individual, that services may be self-directed…”

A “presumption” is a belief that is held until there is evidence to the contrary - that the belief is no longer true or practical to hold on to. An assessment should be a means of gathering evidence so that one does not have to make too many presumptions and that leads to conclusions based on evidence and truth. An Assessment should inform the person with a disability and others involved in determining needs and supports for the individual, but the Assessor should not be the person who makes those determinations alone.

There is also a requirement for a Person-Centered Care Plan, based on the individual assessment. The Plan is constricted again by the determinations of the state approved healthcare provider who does the assessment.  

HCBS Services Specified

Many of the services are conditional on the person with a disability conforming to the expectation that they will be integrated into “the community” and will not need much in the way of specialized services or residential care. These include: 

Supported employment (employment in integrated, competitive work settings) and integrated day services, leaving out non-competitive specialized work programs for people with more severe disabilities and specialized day programs for people with severe disabilities.

Services that enhance independence, inclusion, and full participation in the broader community, but leaving out specialized services for other purposes.

Non-emergency, non-medical transportation services to facilitate community integration, but leaving out transportation for other purposes.

Necessary medical and nursing services not otherwise covered which are necessary in order for the individual to remain in their home and community, including hospice services, but leaving out services for other purposes, such as medical services to keep an individual alive, safe, and comfortable.

Specification of HCBS Services by a committee

A panel composed of individuals with disabilities in need of Home and Community-Based Services and organizations representing disability groups, local, state, and federal agencies, family organizations, provider organizations, etc. will submit a report to Congress identifying additional services specified as Home and Community-Based Services with the goal of increasing community integration and self-determination for individuals with disabilities receiving such services.

There is a great deal of controversy in the disability community. Unless the members of the panel are carefully selected to agree with each other, I anticipate that this will create the appearance of a hornet’s nest of activity, but not result in anything of value coming out of it. It could impose even more limits on choice. I do not understand why anyone thinks this is a good idea.

I agree with this statement from the National Council on Severe Autism,

“The HCBSAA ‘Advisory Committee’ would place extraordinary veto power in the hands of a few advocates. The proposed Advisory Committee is designed to be made of a majority of self-advocates and allies, with a minority (if any) representation from those who lack the capacity to advocate for themselves, and who must rely on parents/guardians/conservators to represent their interests… A small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals, an idea that is clearly untenable…”

Thank you for your consideration of my comments on behalf of my sons. I look forward to the day when a truly inclusive approach to Medicaid Home and Community-Based Services takes into account the full spectrum of needs for this diverse population.

Jill R. Barker, Ann Arbor, Michigan

Washtenaw County COVID-19 Vaccine Clinic for the Disability Community, 4/23/21



Free Conference on Rare Epilepsy Syndromes, 5/7 - 5/8/21

This is from the Epilepsy Foundation of Michigan:   Do you or a family member live with the challenges of one of the many rare epilepsy syndromes?

Join the Epilepsy Foundations of Minnesota, Wisconsin, Michigan, and Greater Chicago for the Virtual Upper Midwest Rare Epilepsies Conference on May 7-8, 2021. Hear from leading doctors from across the Upper Midwest as they present on topics including research, therapies, and approaches to living with a rare epilepsy, and support and planning for the future.    With 3.4 million people diagnosed with epilepsy in the US and 1 in 26 people developing the disorder in their lifetime, it is fair to say that epilepsy is relatively common. However, it is not that simple. There are many types of epilepsy, and while some are far more rare than others, that does not lessen their impact. Rare epilepsies such as the Lennox-Gastaut Syndrome, Doose Syndrome, and others can greatly alter a person's life, and the more we can understand them, the better equipped we are to fight the challenges they can present. This free conference is intended to do just that.    This conference is open to all individuals or families living with any form of rare epilepsy syndromes.  Below is our full agenda. If the image is too small, click on the image and it will open in a new window. We hope you will join us! Register today!