Tackling gun violence in Detroit: preventing disabilities and making everyone safer

Gun violence is usually covered in terms of deaths and numbers of mass shootings. The survivors of gun violence often become part of the disability community -  when a victim is not killed by an AK-15, for instance, his or her survival, often with grave injuries, may lead eventually to lifelong disabilities and trauma-induced mental distress. The prevention of gun violence should be a concern of disability advocates. 

The Washington Post published an article last November, “Terror on Repeat: A rare look at the devastation caused by AR-15 shootings” by Silvia Foster-Frau, N. Kirkpatrick, and Arelis R. Hernandez, 11/16/23. The article is disturbing and nauseating in its description of what happens to bodies, classrooms, movie theaters, music festivals, and places of worship after a mass shooting event with this popular military style weapon. It is enough to make one re-consider the extent to which the 2nd amendment applies to the "right" to own weapons of mass destruction. If you are already convinced that there are limits to 2nd amendment rights, feel free to skip this article.

There is some good news and progress to report in Detroit where there has been a concerted and coordinated effort to reduce the number of homicides in the city:

“Detroit is close to recording its fewest homicides in nearly 60 years” by Andrea May Sahouri, 12/4/23.

According to the article, “As of Nov. 30, the city had recorded 228 homicides this year, an 18% drop compared to the 276 homicides during the same time last year. In 2018, Detroit recorded 261 homicides, the city's fewest since 1966, a year prior to the Detroit riot in 1967.” Also of note is that the population of Detroit has fallen from 1.58 million people in 1966 to an estimated 620,376 in 2022, but the downward trend in homicides is nevertheless good news for the citizens of Detroit.

A coordinated effort led by Wayne County Executive Warren Evans targeted seven key areas: “Reducing felony gun case backlogs in Wayne County Circuit and 36th District courts; increasing staffing for the Wayne County Prosecutor's and Sheriff's offices, as well as the Detroit Police Department; increasing coordination between the Wayne County prosecutor and DPD on shooting and homicide cases; increasing accountability for defendants released on tether to the Wayne County Sheriff's Office; increasing accountability from the Michigan Department of Corrections for those on probation and parole; and the implementation of the FAST unit, a joint fugitive apprehension unit of DPD and the Sheriff's Office, which apprehended nearly 1,000 individuals with outstanding felony warrants this year, prioritizing those wanted for gun crimes.”

The emphasis on reducing gun violence appears to be key to the success of this effort. Another key factor was in reducing the backlog of gun cases pending in the courts: “Felony gun cases pending trial in Wayne County Circuit Court have decreased from 4,000 in January 2022 to 1,330 in November 23, a 67% reduction, according to the coalition.”

When others have nothing but discouraging words for solving our gun violence epidemic, Kym Worthy, the Wayne County prosecutor is hopeful:  “This collaboration is unique in that issues are identified, solutions discussed, and these solutions are implemented. It is not just talk, talk, talk.”

NIH proposes to eliminate "reducing disability" from its Mission. The National Council on Severe Autism asks WHY?

In August of 2023, the NIH (National Institutes of Health) released a Request for Information (RFI): Inviting Comments and Suggestions on Updating the NIH Mission Statement. 

The proposal to remove the phrase "reducing disability" from the NIH mission came out of a 66-page report from the NIH Advisory Committee to the Director (ACD) Working Group on Diversity, Subgroup on Individuals with Disabilities which I have only glanced at, but hope to read more thoroughly. It appears there are many issues regarding the inclusion of people with disabilities in the medical workforce and reducing discrimination that are uncontroversial, but this is not one of them. Here is the reasoning behind the proposal:

“One immediate action for the NIH to support disability inclusion is to remove the language of ‘reducing disability’ from the NIH mission statement. The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’.”

Here are the comments from NCSA to NIH. The period for accepting comments closed on November 24, 2023, but I'm sure that will not end the controversy.

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From the NCSA Blog:

The NIH Proposes Erasing "Reducing Disability" From Its Mission. NCSA Is Incredulous

October 24, 2023

To the shock of many, the National Institutes of Health (NIH) has proposed eliminating the goal of reducing disability from its mission. This came about based on a recommendation of a DEI Workgroup on disability concerned that this goal was “ableist.”

In response to the NIH request for public comment on the proposal, NCSA has submitted the following via email and in shortened form on the submission website. We encourage other organizations and individuals to submit comments as well. The deadline is November 24, 2023.

National Council on Severe Autism

PO Box 26853


San Jose, CA 95159

Office of the Director
National Institutes of Health
Via NIH submission website submission website

Re: Opposition to Proposal to Eliminate "Reducing Disability" from NIH Mission Statement, Notice Number: NOT-OD-23-163

To the Office of the Director:

We have read the National Institute of Health’s (NIH) proposal to erase the goal of “reducing disability” from its mission.

The ostensible purpose of this proposal is promotion of diversity, equity and inclusion (DEI) goals, specifically to “support disability inclusion” at the NIH. The internal report on which this idea is based, Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities Report, December 1, 2022, asserts that the current mission statement “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’”

This argument rests on a clear logical fallacy: it conflates “disability” with “individuals who have disabilities.” Disability itself is not a neutral state of identity; by its very nature it means impairment, dysfunction, and incapacity. This fact is mutually exclusive from the other fact at hand: individuals with disabilities have value and should not be stigmatized. [emphasis added]

It should go without saying that the goal of reducing disability, i.e., impairment, on both a population and individual level is a moral and pragmatic imperative that does not carry any animus toward individual people whose functioning is limited by their disabilities. Our collective desire to eradicate polio hardly demeans those individuals who have fallen victim to polio-caused paralysis. Our aim to reduce fetal alcohol spectrum disorder, and all the disability it can entail, does not mean we believe those affected are morally flawed, or flawed in the sense of any abstract philosophies. Wanting to reduce these and countless other impairments that reduce functioning and human potential — multiple sclerosis, ALS, schizophrenia, the list is long — hardly equates to “ableism.”

When an obstetrician unwraps an umbilical cord choking a neonate, and therefore reducing the risk of lifelong impairment, is she engaging in ableism, or rather the most honorable sort of humanity? By any reasonable standard, disability should be prevented whenever possible. Laws mandating helmets and seat belts are not “ableist”; they protect the public from preventable injury and consequent disability and all the costs, burdens, pains and dependencies that result. When a pregnant woman takes folic acid supplements to reduce risk of spina bifida in her child, she is not “ableist,” she is obviously taking prudent preventive measures to reduce the risk of serious impairment in her child. Countless public health campaigns and NIH efforts shine a light on the risks of smoking, to reduce the prevalence of disabling conditions such as emphysema and COPD. Was it ableist for the FDA to have banned thalidomide?

The NIH-Wide Strategic Plan makes it clear that a paramount goal of NIH efforts is “to support innovative research ultimately aimed at protecting and improving human health.” The word health of course encompasses reduced risks and impacts of disability.

While disability is often difficult to “fix,” to borrow language of the report, the vast majority of people with disabilities would have preferred their disabilities be prevented, and if not prevented, then at least alleviated. Perhaps there are people who do not wish to have their disabilities reduced. For example, some deaf people may not wish to hear; some who are blind may not wish to see; some with paraplegia may not wish to walk. But this would be the 1%, not the 99%.

Some might argue that the mission statement’s remaining phrase “prevent or reduce illness” would encompass disabling conditions but of course that is not true. For example, autism is not an illness, it is a developmental disorder rooted in abnormal early brain development that causes significant functional disability in the vast majority of cases. Due to unknown causes, this serious mental disorder now affects about 3% of U.S. children, portending catastrophic long-term consequences for our polity.

While the need to reduce autism rates has never been more urgent, the new mission statement would not-so-subtly remove any mission to reduce autism, either on an individual or population level. Who would pay the price for this erasure of mission? Americans who count on the NIH to spearhead efforts to identify causes, and also treatments to reduce its disabling impacts, which can include failure to achieve basic communication or living skills, aggression, self-injury, elopement, ingestion of inedible objects, property destruction, and of course lifelong dependency.

With this proposal the NIH threatens to jump into a foreign moral universe detached from its core duties and in conflict with its congressional mandates and the urgent needs and desires of American citizens and taxpayers. We oppose it in the strongest terms possible.

Thank you for your consideration of our comments.

Very truly yours,

Jill Escher
/President

1. While the word ‘ableism’ does not have a concrete meaning in general parlance, the report defines “ableism” as “the belief that people with disabilities are flawed and less valuable than nondisabled people.”

2. Under the Americans with Disabilities Act, for example, a person with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activity.

VOR Comments on proposed rules on Discrimination in Section 504 of Rehabilitation Act of 1973

The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973. 

VOR contends that the policies of HHS, notably the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As [a.k.a. Disability Rights] and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.

Below is the text of the letter to HHS:

To: U.S. Department of Health and Human Services, Office for Civil Rights

Proposed new implementing regulations on Section 504 of the Rehabilitation Act of 1973: Non-discrimination on the basis of disability in Health and Human Services programs or activities.

VOR – A Voice of Reason advocates for a full continuum of care and a full array of residential services and employment opportunities for all people with intellectual and developmental disabilities and/or autism. We would like to remind HHS of the broad diversity that characterizes the individuals who make up this population, from those who need some assistance to function in society to those who cannot survive without 24 hour around-the-clock assistance.

For the past 25 years, HHS has pursued “inclusion for all” policies that VOR believes have left behind the most disadvantaged members of this community. Before you take another step to dismantle more of these programs, we would urge you to review the purposes of the ADA, the Olmstead decision and the real-world effects on the most vulnerable population that we believe has been demonstrably hurt and even died as a result of these policies. [Some disability organizations call for sweeping changes to close all residential programs and services that provide care in congregate settings serving more that 3 or 4 people with disabilities.] We urge you not to just count the number of large facilities closed and people moved into the community, but to assess whether their needs are being met, whether there are sufficient well-trained staff and the overall the quality of their lives, including the frequency of abuse and neglect and the mortality rates relative to their former homes.

The ADA recognized the harm that our society had done by institutionalizing people who were “different” and called for giving them opportunities to participate in mainstream activities. Olmstead properly implemented that policy by permitting two individuals who wished to leave an institution and move into a less restrictive environment to do so, recognizing that institutional care was, by definition, segregated care. At the same time, Justice Ginsburg recognized that the I/DD population varied widely and that, for some people, an institution was the least restrictive environment.

Since enactment of the ADA, government policy has helped thousands of people who were capable of living and prospering in the broader community to leave institutions and lead a more productive and filling life. The DD System overseen by HHS has played a major role s in helping people who seek care in less restrictive environments to transition into Home- and Community-Based Services (HCBS) settings or receive more at-home or own-home supplemental services. We applaud the success of these programs. At the same time, we have been concerned that this movement has ignored the reality that Justice Ginsburg recognized that some people can benefit most from institutional care and that ideological blinders have eroded another key component of the DD System – intermediate care facilities for people with intellectual disabilities (ICF or ICF/IID).

Part of the premise for pursuing the closure of ICFs has been the usually unspoken view that parents who choose ICF care for their loved ones are not acting in their best interest. Nothing could be farther from the truth. Being the parent or sibling of a child with severe or profound intellectual disability or autism presents a lifetime of tremendous challenges. Aside from the daily challenges posed by the child her/himself, one of the most difficult challenges is navigating the DD System. Parents and guardians try to make informed choices from a limited set of imperfect options. Most families’ first choice is to have their child live at home. As the child ages and new challenges emerge, the parents have to re-assess those options, often choosing a small privately operated group home. If and when the group home system fails to meet their child’s needs, they usually seek a higher level of care in a larger congregate setting. Unfortunately, our system usually makes this difficult decision even more difficult to realize. Federal and state policies favoring HCBS care over the years have reduced the number of available beds in ICFs and created a two-tiered system, favoring HCBS funding and decreasing funding for the ICF system. While many proponents of HCBS’ inclusionary policies see this as progress, the families that rely on ICF services feel they have been victims of discrimination by their own community and by the very systems that have been put in place to serve them.

ICFs are not for everyone. Most people do benefit from some form of HCBS service. But not everyone. Larger congregate care facilities offer an economy of scale, allowing them to have 24/7 nursing, doctors on campus Monday – Friday and on call nights and weekends, dental clinics, psychiatric services and behavioral specialists, physical therapy, music therapy, swimming, and other services and amenities, most of which cannot be offered in a small group home. ICFs are more highly regulated by CMS and certification is far tougher than it is for HCBS services. Also, ICFs are required to offer active treatment, which may or may not be offered in group homes, but is not required. For people whose existential needs exceed their desire for acceptance by the non-disabled community, ICFs are essential.

Section 504 prohibits discriminatory acts in health care and human services, including denying qualified individuals the opportunity to participate in or benefit from federally funded programs and services. ICFs are federally approved, federally funded residential facilities. Many states have closed admission to these facilities, or ceased to create new opportunities to receive care in these facilities in favor of moving individuals to HCBS services. We contend that Section 504 must protect the right to care in ICF settings as well as in HCBS settings.

This discrimination has become accepted by all but those who need this level of care. The governors of several states have closed ICFs based on the biases of those who portray the ID/A population as a monolithic group that always benefits from community living. Presidential administrations have endorsed this ideology. The Department of Justice, too, has brought lawsuits, closing facilities for not meeting these arbitrary standards.

The bias in favor of HCBS care was memorialized on April 18, 2012, when the Administration on Developmental Disabilities and other agencies were combined into the Administration for Community Living (ACL). Over the past decade, ACL has pursued an ideology of “everyone does better in the community” that ignores the fact that many of those with severe and profound I/DD and autism cannot. As a result of this directive, ACL has funneled millions of dollars into state DD Councils and state Protection and Advocacy agencies (P&A). These agencies have targeted ICFs, launching far more on-site investigations in these facilities than in group home environments, and using federal funds to initiate class action suits aimed at closing ICFs (Illinois, Ligas v. Maram, and Ohio, Ball v. Kasich to name just two. In both of these cases, the court found for the families defending ICF care, but at a huge personal cost to the families involved).

In addition to funding the National Association of Councils on Developmental Disabilities (NACDD) and the National Disability Rights Network (NDRN), the ACL provides funding for the Association of University Centers on Disabilities (AUCD). The AUCD conducts studies on matters affecting people with I/DD and autism, but usually limits the topics of their studies to those which will point to successful outcomes of programs initiated by the ACL. They have not conducted studies on mortality rates of people who have been forced out of their ICF homes of thirty or forty years when state governors have acted, either independently or at the direction of the state P&A or DOJ lawsuits, to close these facilities. They have not attempted to document the outcomes of people who have been forced out of sheltered workshops and 14(c) employment opportunities and wind up in day programs with no work, no pay, and no options, and forced into an even more segregated community with a cohort of more severely disabled individuals.

Discrimination against the neediest people with ID/A also applies to employment opportunities. Employment facilities licensed under provisions of Section 14(c) of the Fair Labor Standards Act, aka sheltered workshops, have been under attack by many of the same groups that advocate for the closure of ICFs. Without these programs, most of those who participate in them would be left without daytime activities as the reality is that they cannot perform to a level that warrants paying them the minimum wage. Ideological dogma cannot change reality. Despite the fact that these are voluntary programs, and the fact that they are enthusiastically approved by a vast majority of those who participate in them (97%), non-participants with high acuity, non-intellectual disabilities, federal and state agencies, and federal and state legislators have been calling for these programs to be phased out and eliminated. Furthermore, we would contend that the states that have ended their 14(c) programs have already committed discriminatory acts against people with intellectual disabilities and autism, by denying qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. If we are indeed to rectify this discrimination, should we not insist that those states re-open access to 14(c) programs?

The normalization of these discriminatory policies by HHS also gives license to the Congress to enact legislation that further discriminates against the neediest component of the ID/A population. The continuing enactment of legislation that either increases funding for HCBS services only or establishes a favorable funding formula for those services instead of ICF services is yet another way that HHS is complicit in undermining services for those who need them the most. Advocating and supporting these discriminatory policies gut a federal program that remains on the books and provides valuable and often essential service. At the same time, it has not met its practical goals – to provide more money and better services for people who reside in HCBS facilities. It is past time for HHS to return to the basics of the ADA and Olmstead – to insure that individuals with ID can choose where they wish to live and to advocate for what is best for the individuals, as determined by them and their families and guardians, not by lawyers and professional advocates.

The Supreme Court’s 1999 decision in Olmstead is often cited as a mandate for inclusion by self-advocates, well-endowed advocacy organizations, and government agencies. As indicated above, that is not what the decision says. Olmstead protects choice in its three-prong test and specifically acknowledges the need for “institutional” care, i.e. intermediate care facilities, in some circumstances. Justice Ruth Bader Ginsberg cited an amicus from VOR in her decision, stating, “Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.” [1]
The Court was very clear that Olmstead was not to be viewed as a one-dimensional “inclusion mandate”, recognizing the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities:

"Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." [2]

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community - based treatment be imposed on patients who do not desire it." [3]

"[U]nder Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities [1] when the State's treatment professionals determine that such placement is appropriate, [2] the affected persons do not oppose such treatment, and [3] the placement can be reasonably accommodated , taking into account the resources available to the State and the needs of others with mental disabilities." [4]

"As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. . . Some individuals . . . may need institutional care from time to time 'to stabilize acute psychiatric symptoms’. . . For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available." [5]

To be clear, we understand that we are asking the very agencies that created these policies and discriminated against those with the most severe and profound levels of I/DD and autism to cease these discriminatory practices. But, before you move further down this path, we ask you to look at our families and our loved ones through our eyes for a few moments:

Having a child with a severe or profound intellectual disability or autism involves a lifetime of extremely difficult choices. Our families ask for your help and support in making the best choices, from a full range of high-quality options, not from a rigid ideology that does not comport with reality. We ask for this support from those in government who oversee the DD system and provide those services, and from the community of people with I/DD and autism and their families, who should be the first to empathize with our challenges and provide emotional support. It’s time we end the discrimination against those with the most severe intellectual and developmental disabilities and autism. These ideals should be at the heart of any re-assessment of Section 504.

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[1] Olmstead v. L.C., 527 U.S. 581, at 605
[2] ibid, at 597
[3] ibid, at 601-602
[4] ibid, at 607
[5] ibid, at 604-605

Resource Guide for parents and guardians of people with I/DD and Autism

 

 

 
[This appeared as a blog post for the National Council on Severe Autism on 10/30/23]
 

By Harris Capps

I know it can be difficult for parents and caregivers to understand and navigate the disability care system in the U.S. I myself have a grown son with intellectual and developmental disability (I/DD) and have learned a lot over the decades, the hard way. Now I want to make it easier for others.

That’s why I wrote the short book, “Essential Lexicon and Resource Guide.” It’s intended for parents, guardians, caregivers, advocacy and support groups, policymakers, educators, students, healthcare professionals, researchers, social workers and others who want a deeper understanding of our I/DD system in an easy-to-access format. It may be of interest to the reader that there are 21 entries that also provide an “Author’s Reflection” on terms such as “Deinstitutionalization,” “The Olmstead Decision,” and “Supported Decision Making,” as well as on NCSA’s own podcast, Autism Confidential.

The book provides an overview of several areas: I/DD terms, the functions of I/DD government organizations, I/DD non-profit organizations that can help, I/DD-relevant websites, and key books on intellectual and developmental disabilities.

The I/DD Terms section covers a wide range of topics including savings accounts exempt from Supplemental Social Security (SSI) income, autism spectrum disorder, deinstitutionalization, IEP vs. IEPs, self-determination, supported decision making, waiver programs, and Home and Community Based Services (HCBS). The section provides explanations of each term to help readers better understand the complex world of I/DD.

The IDD Government Organizations section provides an A-to-Z guide to the federal agency responsible for I/DD policy. It also includes information on the network of University Centers of Excellence on Disabilities and the 10 resources of the Center for Parent Information & Resources.

The I/DD Non-Profit Organizations section includes important I/DD organizations such as autism organizations as well as the 40-year-old organization advocating for a full continuum of care.

The I/DD Relevant Websites section includes a range of websites that are relevant to individuals with IDD. These include websites that support people with “difficult behaviors,” a searchable index of government agencies, the blog hosted by the National Council on Severe Autism, and even the Disability History Museum.

Finally, the Key Books on I/DD section includes books such as Amy Lutz’s “Chasing the Intact Mind,” (October 2023), the main diagnostic Manual on Mental Disorders, and The Handbook of High-Risk Challenging Behaviors in People with ID.

In conclusion, this reference guide is a resource for anyone looking to deepen their knowledge of the I/DD landscape, from complex terminology to information on government organizations and key commentary.

The book is available on Amazon here.

Harris Capps is a parent, guardian, and advocate for his 47-year-old son, Matthew. Matt resides in an Intermediate Care Facility (ICF). Harris and his family live in Ohio.

A Coffee Shop staffed with people with intellectual disabilities draws harsh criticism from federally-funded disability rights advocates

Bitty and Beau's Coffee, Ann Arbor

An Article in Disability Scoop, “Coffee Shop Hires Workers With Disabilities. Why Do Some Say That’s Bad News?” by Morgan Hughes, from 10/10/23 caught my eye for several reasons. One is that there has been a campaign for years by disability rights advocates to oppose and eliminate congregate settings for people with I/DD that provide services or residential programs in groups of more than 3 or 4 individuals. That includes opposition to congregate work programs, group homes, day programs, specialized school programs, larger residential settings such as Intermediate Care Facilities for individuals with intellectual disabilities, family-initiated residential communities, and anything else that advocates may construe as "too institutional”.

Many of the objections by disability rights advocates have been related to the use of federal or state funds paying for such programs. In the case of Bitty and Beau’s Coffee in Columbia, South Carolina, however, advocates have targeted a private business that receives no government funds and pays at least minimum wage to its employees. (It does not participate in the federal 14(c) waiver program.)

Bitty and Beau’s is a chain of 19 coffee shops in 11 states. The company employs more than 400 people, most of whom have disabilities.This includes a coffee business on South Main Street in Ann Arbor, Michigan, where it is part of a bustling business district in a university town. I have not visited the Ann Arbor shop, but by all accounts, the employees, their families, and the community at large enthusiastically support the presence of this unique business.

Objections to the coffee shop in South Carolina, come primarily from Able South Carolina, (AbleSC),  an organization “… established under the Rehabilitation Act to be run and operated by people with disabilities as a U.S. Department of Health and Human Services designated Center for Independent Living.” The organization received over 3.5 million dollars in government grants in 2021.

According to the article in Disability Scoop, local disability rights advocates say Bitty and Beau’s creates an environment where inspiration is the goal.

Kimberly Tissot, the CEO of AbleSC, “‘worried that employees with disabilities would be used like props, meant to offer customers smiles and hugs but not to be taken seriously as people…’ Businesses that employ only people with disabilities have also been known to pay below minimum wage because of a federal waiver that allows it, other disability rights advocates said.”...

“But critics say even if employees are earning a fair income, the store sends the wrong message to people without disabilities.

“‘It kind of plays off the heartstrings to get people to open their wallets,’ said Crush Rush, a local disability rights advocate and AbleSC board member." He calIs it crudely, "inspiration porn."

…“Despite the data, Tissot sees the business and those like it as counterproductive because she said the business segregates people with disabilities. She said that segregation can lead typically-developing people to think people with disabilities can only succeed in those environments. Tissot has a physical disability and a 13-year-old son with an intellectual disability.”

Integrated employment for thee, but not for me? 

The law (Title VII of the Rehabilitation Act establishing CILs) mandates that the majority of the CIL staff and individuals in decision making positions, including the governing board, must be individuals with disabilities. 

In other words, one could say that workers at AbleSC are employed in a congregate setting and serve primarily others with disabilities.

I see nothing inherently nefarious nor improper about Centers for Independent Living, but a little bit of self-reflection by the CIL disabled employees might temper the criticism coming from these organizations. Is it only when they are talking about people with intellectual disabilities that such congregate work arrangements are considered abhorrent? The hypocrisy is clear when one disability group attacks another on the basis of principles that they themselves do not follow.

“Nothing About Us, Without Us” except when “Us” doesn’t include you

Nothing in the Disability Scoop article indicates that representatives of AbleSC asked the employees of Bitty and Beau’s in Columbia, South Carolina, how they felt about their jobs and their place in the community. I think most of the workers in these businesses are able to communicate and if they are not, then why not ask their families how they respond to the work and whether they find satisfaction in what they do? 

I agree with Amy Wright, one of the owners of the company, who says “I really wish those same disability advocates would take that frustration they are feeling and direct it toward other businesses in Columbia that don’t hire anyone with a disability.” 

And for those who say they will boycott the business, that’s fine. That will make everyone’s life easier. 

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More information on CILs from the Administration on Community Living... 

Bitty and Beau's Coffee

U.S. Department of Labor holds stakeholder listening sessions on special wage certificates that support employment for many with I/DD

The U.S. Department of Labor (DOL) is conducting stakeholder engagement sessions as it reviews the use of 14(c) compensatory wage certificates for people with intellectual and developmental disabilities (I/DD). These are used by employers to make possible work programs that employ people who are unable to participate in regular competitive, integrated employment for reasons related to their disabilities. 

Section 14(c) of the FLSA (Fair Labor Standards Act) authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay subminimum wages - wages less than the Federal minimum wage - to workers who have disabilities for the work being performed.

According to a Department of Labor website, Michigan businesses employ about 800 people under this federal program.

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From the VOR Weekly News Update for October 27, 2023:

The first session was held on Thursday, October 26, 2023.

DOL - Additional Section 14(c) Stakeholder Engagement Sessions Announced

In addition to last night's session [10/26/23], DOL is offering two more opportunities for families to speak on the importance of providing more options for people with I/DD and autism, rather than reducing the number and variety of services available.

NEW:

Stakeholder Engagement Session #2: 
November 01, 2023, from 2:00 to 3:30 PM ET.
Members of the public wishing to participate must register in advance of the meeting by October 30 [Sorry! Registration is closed for this session]

Stakeholder Engagement Session #3: 
November 15, 2023, from 5:30 to 7:00 PM ET.
Members of the public wishing to participate must register in advance of the meeting by November 1. Click here to register

For more information about these sessions, please click here

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Last Night's [10/26/23] Session

Last night's session ran nearly two hours. Participants were given 2 minutes to speak about their experience and their views on 14(c) programs.

The first to speak was a representative from Microsoft, who announced that they oppose 14(c) programs, because they believe everyone with I/DD or autism can work for minimum wage or better. They announced that they had opened up over 500 jobs in competitive integrated employment.

Microsoft's statement was allowed to run nearly 5 minutes, The two minute time limit was imposed after their representative delivered their prepared statement. This was, once again, a grim reminder that powerful organizations hold much larger influence over policy than do individuals or families of people with IDD and autism.

Our friend Kit Brewer, a provider of 14(c) services and VP of the Coalition for the Preservation of Employment Choice, later spoke, thanking Microsoft for opening up 500 competitive jobs, but countered that providers in the State of Missouri have provided employment to over 5,000 people who prefer to work in sheltered workshops under 14(c).

VOR's Dawn Kovakovich spoke of her daughter's growth over her adult life that is a direct result of her engagement in sheltered workshop. She also told the attendees that the best explanation for the need of 14(c) programs can be found in Chapter 4 of Amy Lutz; book, "Chasing the Intact Mind".

Several self-advocates spoke of their feelings that people with I/DD or autism working for less than minimum wage was hurtful or degrading to them personally (that is, to the self-advocate, not the person who is working in the environment of their choosing). A representative from Diability Rights Kansas also spoke against sheltered workshops.

Hugo Dwyer of VOR spoke of the difficult choices that families are forced to make throughout their lives to ensure what is best for their loved ones with I/DD and autism. These choices vary, depending on the individual in question and the options available, and how members of the disability community should work together and support each other's choices, even if those are not the choices they have made. We should support each other, empathize with each other's challenges, and respect the choices that each of us make.

It is vitally important that VOR members sign up to speak at these meetings. Every voice in favor of 14(c) programs is needed, to help preserve these opportunities for those families who benefit from them.

At least four people from Maine's Deaf community were murdered in the mass shooting in Lewiston

October 30, 2023

In all, 18 people were killed and 13 wounded in a mass shooting on October 25, 2023.

This is from an Associated Press article, "Maine’s close-knit deaf community grieving by Patrick Whittle, 10/28/23. It also appeared in the Detroit Free Press on Sunday, 10/29/23.

“FALMOUTH, Maine – Maine’s closeknit community of deaf and hard of hearing people is grieving in the wake of the Lewiston shootings that killed beloved members, many of whom were ardent advocates.”

Joshua Seal, 36, Billy Brackett, 48, Steve Vozzella, 45, and Bryan MacFarlane, 41, were all associated with the the Maine Educational Center for the Deaf and the Governor Baxter School for the Deaf located in Falmouth, near Portland, ME. 

Seal had four deaf children who were all connected to the institutions’ educational programs, and Brackett attended the school and had a daughter who was in early intervention. MacFarlane also attended the school as a student and Vozzella’s wife, Megan, was an alumnus of the school, according to the article.

This is a sad reminder that none of us is free from the risk of being victims of gun violence, or a survivor of gun violence and living with the disabilities and psychological trauma caused by these events.

Possible Effects of a Government Shut-down

A totally unnecessary and irresponsible shut-down of the Federal Government may occur as early as Sunday, October, 1, 2023. This is promoted by MAGA Republicans in the House of Representatives and opposed by Democrats along with a few House Republicans. As we wait for sanity to return, here is an e-mail from Representative Debbie Dingell from Michigan's 6th District.

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Dear Friend,

Funding for the federal government expires on September 30, and we are working every day to do everything possible to prevent a government shutdown. A shutdown would be irresponsible and could cause uncertainty and harm to many programs and people. It is not the way to run the government. Unfortunately, not everyone agrees. This letter is to help you plan for a possible federal government shutdown, and we have tried to provide answers to the most frequently asked questions. We will continue updating my website with information as we receive it, and you can sign up to receive my email updates here. Should you have issues or need help, you can contact any of my offices and we will do the best job we can in assisting you during these challenging times.

Will I continue to receive my Social Security and SSI checks?

Recipients will continue to receive their Social Security and SSI checks. The Social Security Administration (SSA) will provide limited services like issuing Social Security cards and holding appointments for benefit applications. However, SSA will stop services like benefit verifications and processing overpayments. Customer service wait times will dramatically increase.

Will Medicare and Medicaid benefits be affected? 

Current Medicare, Medicaid, and disability insurance beneficiaries will continue to receive their benefits assuming a shutdown lasts less than three months.

What happens to veterans' services?

All Veterans Affairs (VA) medical facilities and clinics will remain operational. The VA will continue to process veterans’ benefits. However, veterans will be affected by the shutdown of other services that they count on, including education and job training, support for veteran- owned businesses, and even assistance for homeless veterans.

Which federal employees keep working during a government shutdown?

When the government shuts down, federal agencies are required to classify their employees whose salaries have lapsed as either "excepted" or "not excepted." The employees classified as "excepted" work without pay during the shutdown. The employees classified as "not excepted" are put on unpaid furlough.

What is the impact on U.S. military personnel and federal law enforcement?  

All active-duty and Guard and Reservists on active-duty orders are excepted and therefore are required to work without pay. On-base non-acute health care will cease, although off-base care provided through Tricare will not be affected. On-base child care will be open on a case-by-case basis. Federal law enforcement will also be required to work without pay for the duration of a shutdown.

Will military and federal retiree benefits be suspended?  

Military and federal retirees will continue to receive their retirement benefits. Processing new applications or other requested changes will be delayed.

Will air travel be affected?  

Air traffic controllers, Transportation Security Administration (TSA) officers, and Customs and Border Protection (CBP) agents will remain on the job without pay. If some do not report to work, as has happened in prior shutdowns, there will be significant delays and longer wait times across the country.

What does this mean for disaster relief efforts?

Federal Emergency Management Agency (FEMA) staff will still respond to emergencies, but all long-term projects will be delayed due to a lack of funding in the Disaster Relief Fund.

How will this affect environmental protection and cleanup?  

The Environmental Protection Agency (EPA) will stop inspecting most hazardous waste sites, as well as drinking water and chemical facilities. Efforts to address dangerous contaminants like PFAS — which are linked to severe health effects, including cancer — will be delayed, and cleanup activities at Superfund sites will slow or cease.

What is the impact on food assistance?   

The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) will quickly run out of funding and be unable to provide food for children and parents in need. In the case of a prolonged shutdown, Supplemental Nutrition Assistance Program (SNAP) benefits may also be affected.

What is the impact on food safety activities?  

Food and Drug Administration (FDA) food safety activities — such as routine inspections of facilities — will be delayed across the country.

What is the impact on housing?

The Federal Housing Administration (FHA) will stop insuring some new mortgages and the Department of Housing and Urban Development (HUD) will stop processing some new loans. The Department of Agriculture (USDA) will stop new loan and loan guarantee activity. The VA will continue to guarantee home loans. Funding for federal housing assistance programs, such as Housing Choice Vouchers, may be jeopardized in a prolonged shutdown.

How will this affect small businesses?  

The Small Business Administration (SBA) will stop processing new business loans, such as through the 7(a) and 504 programs. However, SBA’s Disaster Loan Program will continue regular operations.

Will my mail still arrive?   

Yes. The U.S. Postal Service is not affected by a shutdown.

What does this mean for medical research?

The National Institutes of Health (NIH) will be forced to delay new clinical trials. New patients who are waiting for a chance at new treatment through a clinical trial will be turned away.

Will I still be able to visit National Parks and monuments?

Across the country, services that require National Park Service staff — including trash removal and operating campgrounds and concessions — may be stopped. Closures will be determined on a location-by-location basis; open-air parks and monuments in Washington, D.C. will likely remain accessible. Smithsonian museums may also be impacted by a lengthy shutdown.

How does this affect State Department operations?

Consular services, passport services, and visa services are expected to continue in the immediate aftermath of a government shutdown. In a prolonged shutdown, passport and visa issuance could be slowed. Access to passport agencies located in some government buildings may be limited.

What is the impact on state and local services?

The federal government shutdown will not immediately affect any state or local services. However, with federal funding cut off, some state or local governments may have to change their operations. Check with state and local agencies for specific questions.

For more updates, sign up to receive my email newsletter here.

Sincerely,   Debbie Dingell Member of Congress

P.S. You can share a story or contact me anytime about health care or other issues through my website. You can also receive real-time updates by following me on Facebook, Twitter and Instagram

Cancer Screening Survey for People with I/DD

VOR received this request for participants in a survey of parents and caregivers of people with I/DD (Intellectual and Developmental Disabilities) regarding cancer screening for people with I/DD.

From VOR:

We received a request from a young woman who is conducting a survey on cancer screening of people with intellectual disabilities for her Master's Thesis. Her letter and a link to the study are attached below.

We hope that those of our members who have loved ones with I/DD who have had cancer screenings will participate in this study, not only to help protect the interests of the I/DD population as a whole, but to make sure that those with more severe/profound I/DD and autism are well represented in the study.

[to contact VOR, email info@vor.net]

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To Whom It May Concern,

My name is Jennifer Ryan, and I am a second year Master’s Student in the University of South Carolina Genetic Counseling Program. For my thesis research, I am working to survey parents and caregivers of patients with intellectual disability in regard to patients’ experiences with cancer screening.

Patients with intellectual disability have around the same risk to develop cancer during their lifetime compared to the general population, but are screened for cancer at much lower rates. Through my research, I am hoping to gather family and caregiver perspectives and opinions in order to break down barriers to care and to provide resources to these individuals to help them obtain routine screenings.

A poster about my research is attached and the link to complete the survey is: https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE.

Thank you for your time and consideration. Please feel free to reach out to me if you have any questions about the project.

Best,
Jennifer Ryan

Please contact jlr19@uscmed.sc.edu with any questions

September 26th Project Video 2023 from the National Council on Severe Autism

 

From the National Council on Severe Autism: Every year, around September 26th, we provide reminders, inspiration and information to autism and special needs families about emergency preparedness, in honor of the late Feda and Muhammed Almaliti, who perished in a tragic house fire on September 26, 2020. This year's video focuses on the story of Denise Lombardi, an autism mom in upstate New York who felt a call to take action and become a firefighter herself. We hope all autism families will take just 10 minutes every September to consider what steps, even very small steps, they can take to be prevent disaster. Our website -- September26.org -- offers checklists, and our videos, social media, podcasts and webinar offer ideas and help. Sponsored by the National Council on Severe Autism NCSAutism.org.

 

Autism Confidential: a podcast from the National Council on Severe Autism

The National Council on Severe Autism sponsors a mostly weekly podcast that is available from the usual Podcast platforms and on Youtube.

I do not have a family member with autism. My two sons, Danny, who died last year at the age of 46, and Ian, who is 38 years old, experienced profound intellectual and severe physical disabilities from birth. My cohort of parents and other family members who care for people with profound intellectual and developmental disabilities are not exactly in the same club with these autism parents, but we are just down the hall, with many overlapping issues and similar concerns about the romanticizing of disability, the inability of many advocates to acknowledge the severity of the most profoundly disabled people, and a tendency to blame parents for making people with disabilities look bad because parents insist on speaking truthfully about their own children.

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From the NCSA website:

"Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers."

Find it on Apple here
Find it on Spotify here
Find it (with video) on YouTube here

Have ideas for episodes or speakers? Please email us
 at NCSA Admin <info@ncsautism.org>

Interested in becoming a sponsor? Please email us at NCSA Admin <info@ncsautism.org>

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Jill Escher is a podcast host with just the right combination of personal experience (two of her children have profound non-verbal autism) and technical expertise to offer engaging weekly interviews on a variety of topics with family members and experts in the autism world.

For a description of Jill Escher’s busy life, see her webpage. 

Part of what she does is promote and fund research “on the genetic toxicology of autism and related neurodevelopmental pathologies” which sets the scene for the very latest podcast from Autism Confidential, Episode #044, entitled “Autism Research Roundup”. Her guest is Dr. Alycia Halliday, chief Science Officer of the Autism Science Foundation. Jill and Alycia (also an autism parent) debate the role of genetics as a cause of autism. Genetics is responsible for possibly 20% of autism cases, but much of autism is unexplained or not understood. Jill is a proponent of looking at other causes and there is good-natured sparring on the current debate on causes. The two also discuss studies on early intervention that show improvement in functioning in young children, but early intervention is not shown to overcome the disability. One thing they agree on totally is that no one should take medical advice from Tik-Tok videos.

I love this stuff, but I know not everyone is enthralled with the science-y part of disability. I also love local heroes who do things rather than just talk about them. In Episode #042, Jackie Ceonzo from New York City is a local hero that I would like to meet. She is the founder of SNACK* that provides recreational classes and instructional programs for kids and young adults, located in Midtown East, NYC. Jackie’s autistic son is among those who was constantly rejected for being too autistic. She took matters into her own hands (with the help of many others) and developed a center where her son “…Joey and other children with special needs would be welcome, regardless of their language abilities, behavioral challenges or skill level. She envisioned a place where parents and children would feel comfortable socializing and learning life and recreation skills in a creative and safe environment.”

Episodes #37 and #38 deal with “Dental Care for Patients with Autism, with Dr. Allen Wong.  “By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient.”

In Episode #33: "Bridging the Divide", the podcast veers boldly into the divided autism community with Morénike Giwa Onaiwu, a prominent neurodiversity advocate. “…We were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.” 

My favorite observation from Morénike was that there are horrible people everywhere. I can agree with that, even when I don't much like the neurodiversity movement’s attempt to describe all disability as part of a normal continuum of human experience.

Episode 29: Just Say No to the Bullying of Autism Parents

"Pioneering autism advocate Thomas McKean joins us again...to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says 'Enough!' to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children."

Episode 27: Thriving with Severe Autism at Bittersweet Farms

This is close to home. Bittersweet Farms, near Toledo, Ohio, is “a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. “

And then there is Episode 18: The Poop Episode by Dr Joyce Tu and Kelly Bermingham, which is to say that the podcast has something for everyone.

VAERS reports on adverse events from vaccines are unverified claims and do not support claims of deaths from vaccines

Activist Misuses Federal Data to Make False Claim That Covid Vaccines Killed 676,000

By Tom Kertscher, PolitiFact 

September 1, 2023

Covid-19 vaccines have killed 676,000 Americans. 

Steve Kirsch in an Aug. 6, 2023, blog post

A blog post shared on Facebook claimed that covid-19 vaccines have killed some 676,000 Americans.

The post was written by anti-vaccine activist Steve Kirsch, who has made other vaccine claims debunked by PolitiFact and other fact-checkers. 

Kirsch’s Aug. 6 post referred to the Vaccine Adverse Event Reporting System, a federal database.

“VAERS data is crystal clear,” the headline read. “The COVID vaccines are killing an estimated 1 person per 1,000 doses (676,000 dead Americans).”

The blog post was shared on social media and flagged as part of Meta’s efforts to combat false news and misinformation on its News Feed. (Read more about PolitiFact’s partnership with Meta, which owns Facebook and Instagram.)

The data Kirsch used is from an anti-vaccine group’s alternative gateway to VAERS. VAERS, which includes unverified reports, cannot be used to determine whether a vaccine caused death. Kirsch did not reply to our request for information.

“Statements that imply that reports of deaths to VAERS following vaccination equate to deaths caused by vaccination are scientifically inaccurate, misleading and irresponsible,” the Centers for Disease Control and Prevention, which co-manages the database with the FDA, told PolitiFact.

The CDC added that it “has not detected any unusual or unexpected patterns for deaths following immunization that would indicate that COVID vaccines are causing or contributing to deaths, outside of the nine confirmed” thrombosis with thrombocytopenia syndrome, or TTS, deaths following the Johnson & Johnson/Janssen vaccine, which is no longer offered in the U.S.

TTS, which causes blood clots, has occurred in approximately four cases per million doses administered, according to the CDC.

VAERS helps researchers collect data on vaccine aftereffects and detect patterns that may warrant a closer look.

The CDC cautions that VAERS results, which come from unverified reports anyone can make, are not enough to determine whether a vaccine causes a particular adverse event.

For the covid vaccines, VAERS has received a flood of reports, and they have become especially potent fuel for misinformation.

Kirsch made his claim not by using VAERS directly, but with an alternative gateway to VAERS from the anti-vaccine National Vaccine Information Center. 

That website draws on raw and limited VAERS reports, which can include incomplete or inaccurate information. These reports do not provide enough information to determine whether a vaccine caused a particular adverse event.

 There is no evidence that covid vaccines have killed Americans in large numbers, let alone 676,000. We rate the claim Pants on Fire!

Our sources

Steve Kirsch’s newsletter, “VAERS Data Is Crystal Clear: The COVID Vaccines Are Killing an Estimated 1 Person per 1,000 Doses (676,000 Dead Americans),” Aug. 6, 2023 

Health Feedback, “VAERS Data Don’t Show That COVID-19 Vaccines Are Deadly; Steve Kirsch’s Claim to the Contrary Relied on Flawed Analysis,” Aug. 6, 2023

Facebook, post, Aug. 8, 2023

PolitiFact, “How an Alternative Gateway to VAERS Data Helps Fuel Vaccine Misinformation,” Feb. 28, 2022

PolitiFact, “Federal VAERS Database Is a Critical Tool for Researchers, but a Breeding Ground for Misinformation,” May 3, 2021

Centers for Disease Control and Prevention, “Selected Adverse Events Reported After COVID-19 Vaccination,” July 13, 2023

Email, Centers for Disease Control and Prevention, Aug. 10, 2023

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT This story can be republished for free (details).

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Illinois: A mother’s plea for better oversight of group homes for people with disabilities

This is an investigative report from KSDK in St. Louis into oversight of Illinois CILAs (Community Integrated Living Arrangements), group homes for people with intellectual and developmental disabilities (I/DD): 'People look the other way': Mother begs for better oversight of group homes for people with disabilities, by Paula Vasan, 10/6/2022.

“PINCKNEYVILLE, Ill. — A mother’s love is limitless. It means fighting for your child.'We had 30 to 40 ER visits in less than three years,' said Peggy Strong. 'My daughter almost died.'  She said it was because of a problem her daughter Marjorie couldn’t tell her about. 'She also is non-verbal. She is incapable of fending for herself,' said Strong.”…

Read the article, but also view these two interviews on Youtube to get the full story:

Extended interview: Peggy Strong

Peggy Strong's daughter, Marjorie, lived in a taxpayer-funded group home in Pinckneyville, Illinois. Strong said case managers told her it was the best option for her daughter. Red flags seemed to prove otherwise.

Extended interview: Rita Winkeler

Disability rights advocate Rita Winkeler is a critic of taxpayer-funded group homes, licensed by Illinois and run by private organizations. The homes are for people with intellectual and developmental disabilities, designed to better integrate them into society.