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