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.

*******************************

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.

Parenting a child with severe autism during a pandemic

This is an NPR interview with Feda Almaliti, the mother of a 15-year-old son with severe autism. Feda is also the Vice President of the National Council on Severe Autism and has written articles for the NCSA Blog and the Autism Society San Francisco Bay :

'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic  

May 22, 2020
Heard on All Things Considered 
by Courtney Dorning and Mary Louise Kelly 

Here are some excerpts from the interview: 

"'Muhammed is an energetic, loving boy who doesn't understand what's going on right now. He doesn't understand why he can't go to school. And school is one of his favorite places to go. He doesn't understand why he can't go take a walk in the mall when that was one his favorite things to do. He doesn't know why he can't go to the park, why he can't go down to the grocery store,' Almaliti says. 'So he's incredibly confused, in this time when we're all confused, but he really doesn't understand it.'"
 
..."It's the unknowing. ... We don't know when it's going to end. We don't know what's going on, and to deal with autism at home makes it even harder. The only support that I get to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. ... We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can."...

"...I almost feel like nobody hears us. Because my son doesn't really talk. He doesn't talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay." ...

..."We desperately need extra help to get through this. And I firmly believe that autism support workers, aides, their teachers and caregivers are as essential as nurses and doctors and should be given the same accommodations. People don't understand that for our families, caregivers are our first responders. Special needs schools are our hospitals. Our teachers are our ventilators. And we can't do this without them."

More articles by Feda Almaliti:

Three Strikes... and He's Out?
May 23, 2020 [Reprinted from a 2018 blogpost at Autism Society San Francisco Bay Area]

What happens when the regular world has had enough of my son's autism 
..."Inclusion is a hot topic in disability circles, but when our kids can’t play by society’s rules, inclusion can truly suck. Instead of some fantasy of joyful acceptance, we get black-listed. Over and over and over. How I dream of places, spaces and programs fully accepting of our special children. Autism-friendly rules, not 'If you act autistic you’re out' rules."

"...At Autism Society San Francisco Bay Area’s Summer Pool Parties we make sure an autistic kid can be him or herself. Where they can chew on pool noodles, bellow and flop around, and no one judges them. So here we are, me in the burkini and Mu in his element. A place, however small, where everyone with autism belongs... on the VIP List. If only the rest of the world were so accommodating."

Inclusion Sucks. Or, Why My Son with Severe Autism Has Nowhere to Swim this Summer 
May 22, 2020

"An autism mom stuck at home with her son on a hot summer day meditates on the smallness of his world when inclusion is the only option. ...Of course my pool predicament is a microcosm of a bigger problem: disability-friendly day programs, jobs, housing, and therapeutic care—vital lifelines for parts of our population—are at risk given the direction of federal policy. The trendy mantra is 'community integration' while options for the severely disabled slowly disappear into the black hole of red tape and de-funding."...

..."They say, 'Why maintain an autism day program when Joe could just go to the local Y?' or 'Why have sheltered workshops when Sam can get a competitive job at Safeway?' Please tell me, what are these people smoking and in which smoking lounge can I find them? Have they ever tried caregiving for someone like my son?

"So let's make a deal. Let's ensure inclusion and integration for all those who want it. And let's support acceptance of all, including acceptance of alternative options for the Muhammeds of our world. Don't let narrow ideology throw our babies out with the bath, or, er, pool water. It's just common sense. In the meantime if you'll invite us over for a swim, we'd appreciate it."

Comments to the U.S. Dept. of Education on Regulatory Reform: "Inclusion"

The following are my comments to the U.S. Department of Education request for comments on "Enforcing the Regulatory Reform Agenda E.O. 13777"

by Jill Barker, Ann Arbor, Michigan

With all the emphasis on children with disabilities being served in regular classrooms, usually referred to as “Inclusion”, there needs to be clarification that IDEA and its regulations assure all children with disabilities appropriate educational services and placements.

I have two adult sons, 32 and 41 years old, who have profound intellectual and developmental disabilities. They both attended High Point School in Ann Arbor, a school that specialized in students with the most severe and complex disabilities in Washtenaw County, Michigan. Regular classrooms were in no way appropriate for them, even with special supports and accommodations. At High Point, they experienced the best care and educational opportunities available in a loving and supportive community. 

I have no regrets, but I know the pressure has been on school systems for many years to eliminate schools like High Point in the name of an erroneous and misplaced desire for all students to be “included”.

The following is an article I wrote for The DD News Blog in celebration of my son Danny’s 40th birthday. It is just as relevant today as it was a year ago.

*************************

Excerpts from...

Surviving the Inclusion Delusion: Danny at 40

By Jill Barker 

The DD News Blog

Monday, October 3, 2016

My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant. We do not love him less because he lives and survives with profound developmental disabilities.

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, anda supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers. Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

... the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions: Is it right to make judgments about “ all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs? Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child?

… In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference. Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings.

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities....

Comments to the U.S. Department of Education: Part 1 on Special Education

10/3/17

The U.S. Department of Education recently issued a request for comments in response to Executive Order 13777 that requires federal agencies to evaluate and implement measures to lower regulatory burdens on the American people. The request was open-ended and elicited comments on a wide variety of issues regarding federal regulation of education. Many of the responses were related to special education for students with disabilities.

The following comments are from Caroline Lahrmann, the mother of 17-year-old twins with profound intellectual and developmental disabilities (I/DD). Caroline is a resident of Columbus, Ohio.

I have divided these comments into two parts: Part 1 emphasizes issues related to special education in disability specific settings and Part 2 focuses on transition services and programs that serve students on the more severe end of the spectrum of disabilities.

[Over 1600 comments were submitted to the U.S. Department of Education - links to comments can be found here.]

********************************

Introduction

As a parent of 17-year-old twins with profound intellectual and developmental disabilities (I/DD), I have concerns with Department of Education (DOE) regulation which limit opportunities for children with disabilities on the severe and profound end of the disability continuum. Programs that my children now access have been closed to younger entrants and I fear will be gone altogether when those who have been grandfathered in have aged out. Additionally, I see on the horizon a limiting of post-secondary options for children with severe and profound disabilities as disability-specific work and day programs are regulated out of existence, leaving some children with no path to meaningful post-secondary opportunities.

My children are not alone. There are thousands of children across the country who are born with severe and profound I/DD often accompanied by complex medical and behavioral conditions. There needs to be a place for these children in our educational system. The specialized nature of their conditions must not be trivialized and downplayed so as to fit into a neat, one-size-fits-all approach. Life is not that simple, especially for children with severe and profound challenges.

Misrepresentation of U.S. Supreme Court Olmstead Decision

In my children’s short life, I have seen burdensome regulation limit opportunities for children with I/DD. Their specialized school no longer accepts children under the age of 14 for fear of misguided lawsuits brought under the misrepresentation of the U.S. Supreme Court Olmstead decision. Post-secondary opportunities for individuals who cannot perform competitive work, such as sheltered workshops and facility-based day programs, are increasingly under attack by similar litigation.

The Olmstead decision was centered on ensuring appropriate residential accommodations for two adults with mental disabilities. It is now being misrepresented and applied to education and work settings with the goal of eliminating disability specific educational opportunities altogether.

The Olmstead decision did not eliminate disability specific settings that serve many individuals with I/DD in one facility, often referred to as institutional settings. Throughout their decision, the justices on the Olmstead Court emphasized the need for a range of settings for individuals with diverse mental disabilities and they spoke of the importance of institutional settings to protect health and safety for those individuals who cannot handle and benefit from community settings. Olmstead also made individual choice paramount in accessing services. Olmstead stated,

“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.” Olmstead v LC 527 US 581, 597 (Emphasis added.) 

“For the reasons stated, we conclude that, under Title II of the ADA, States are required to provide community based treatment for persons with mental disabilities when, 

(1) 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.” Olmstead, 607 (Emphasis added.)

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle and benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” Olmstead, 601-602 (Emphasis added.)

Least Restrictive Environment

34 CFR 300.114(a)(2) Each public agency must ensure that - 

(i) To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are non disabled are served in the least restrictive environment (LRE); 

(ii) Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.

This regulation promotes integration for children with disabilities in order to expand opportunities, but when applied with too heavy of a hand, this regulation has removed opportunities for children with disabilities who benefit from specialized programming.

The elimination of disability specific education programs is occurring counter to IDEA. In my research of this issue, Jill Barker of the DD News Blog, provided the following information,

• IDEA does not rule out congregate or separate schools or classrooms if the child cannot be educated satisfactorily in a regular classroom and if the specialized placement is in accordance with the child’s IEP. In fact, IDEA and its regulations assure the appropriateness of services and placements for all children. 
• An appropriate education is one that is in accordance with an IEP that has the important protection that it is written with the active participation of the child’s parent(s). When school districts eliminate separate classes or schools, they take away the determination of what is appropriate from the parents and IEP team and leave it up to a general arbitrary policy that may or may not work for the individual child. 
• The assurance of an appropriate education is being overridden by the misinterpretation of LRE requirements, in much the same way that the misinterpretation of Olmstead is used to restrict services and placement options for people with I/DD.

Please see Exhibit A for a listing of the regulation supporting the assurance of an appropriate education. [This will be posted separately on The DD News Blog. JRB]

Just as gifted children benefit from special classes and curriculum specifically geared to their abilities, children with severe and profound I/DD can benefit from programming designed around their disabilities. In a specialized environment, rather than being told to keep up with non disabled children, children with significant disabilities can thrive.

I question why gifted students are allowed special programming, but students with disabilities are finding their specialized programming under attack.

We also must remember, that there are children whose I/DD is accompanied by complex medical and behavioral conditions that make daily transport to school inappropriate due to health and safety concerns. For these children, application of LRE that stigmatizes the supports that allow for education in disability specific educational settings or at one’s residence (such as their family home or an Intermediate Care Facility for Individuals with Intellectual Disabilities) has harmful consequences and can lead to the lack of availability of appropriate supports for some of our country’s most fragile children.

As a parent of children who attend a school for students with I/DD, I witness first-hand the benefits my children receive in an environment where all teachers and therapists have decades of experience teaching and serving children with I/DD, and where my children can interact with other children with the same challenges. Professionals at their school are passionate about the field of disabilities and have chosen to devote their careers to it. Their passion and their loving and patient personalities directly benefit the children they serve. The collaboration of many teachers and therapists in one setting allows for creative problem solving to address maladaptive behaviors or devise solutions to promote more functionality through adaptive techniques. This collaborative brainstorming happens daily in specialized school settings, settings that cannot be replicated in mainstream public schools.

Additionally, many public schools are not set up to handle conditions connected to children with disabilities such as safe transfers and lifts for quadriplegia, diapering, tube feedings, administration of medication, seizure disorders. Having appropriately trained and experienced nursing supports is essential to children with I/DD and so are teachers and assistants trained and willing to care for such concerns. Specialized schools are more able to have the staff on hand trained in these areas, and thus makes it more possible for children with complex conditions to leave their residences and interact with other children in a school setting.

Increasingly, however, disability-specific school-age programs are becoming van services rather than facility based learning centers. The push for community inclusion at all costs has led to students being forced into the community at all times, visiting the YMCA, the library, museums, etc., rather than spending time at school developing skills and learning. While non-disabled students attend field trips, they are not perpetually shuffled from one community activity to another just to satisfy another’s view of integration.

Finally, the educational experience should be outcome-oriented, meaning the least restrictive environment should be based on the individual and what affords the individual the greatest amount of independence and opportunities. My son can explore his school in his wheelchair and visit other classrooms independently. While my son is able to propel his chair, his intellectual disability does not enable him to understand hazards. As such, his independence in propelling his chair is greatly curtailed in a traditional public school with staircases, other hazards, and people who are not sensitive to his condition. Similarly, my son and daughter have access to therapeutic equipment at their school such as adaptive bicycles, gait trainers, and other equipment that allows them to develop physical and occupational skills. The special design of their school building enables them to use this equipment throughout the building giving them the maximum amount of freedom and opportunity. Such activity would be greatly impeded in a traditional school which is designed for non disabled children and may not have access to a wide variety of equipment and technical expertise. Additionally, my children participate in adaptive music concerts, track meets and swim meets. Such activities and competitions would not be available to them in a traditional public school where school events and teams are geared toward typically developing children. For these reasons, my children’s school is the least restrictive environment for them. The U.S. Supreme Court Olmstead decision recognizes this outcome-based, individual approach to disability accommodation,

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. Olmstead at 605

Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times— perhaps in the short run, perhaps in the long run—for the risks and exposure of the less protective environment of community settings; for these persons, institutional settings are needed and must remain available. Olmstead, 605

For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution for all of their needs is as much liberty as they ever will know. Olmstead, 605

(To be continued...)

********************

Olmstead Resources

Autism Awareness and Bullies on the Playground

May 7, 2017

On the eve of Autism Awareness Month (April 2017), a mother of a six-year old boy with severe autism confronted bullies on the playground. They were not the usual suspects, i.e. adolescent children looking for a vulnerable kid to push around to make themselves feel better. They were instead the parents of a girl who the autistic boy had inadvertently pushed down a slide. The girl apparently was not hurt and did not seem upset. The girl’s parents, however, yelled at the autistic boy and his mother, shouting, “What is the matter with your son? What are you doing here?” The extreme irony in this situation is that the playground was designated as an “inclusive” playground that was built to accommodate children with special needs.

The autistic boy’s mother, explained that her son has severe non-verbal autism and had not done anything intentionally to hurt their child. She apologized more than five times to the parents for his having pushed their little girl down the slide. Meanwhile, her son ran off laughing and playing apparently oblivious to the drama taking place between the parents.

Kate Swenson, the author of the blog “Finding Cooper’s Voice”, posted her emotional account of her encounter with bullies on the playground on her Facebook page. The incident is also the subject of a news article from the Minneapolis Star Tribune (4/7/17). In the video, Kate considered never leaving the house again with Cooper and contemplated her inability to fix the world or even change it very much when it comes to how children like Cooper are treated. 

At one point Kate asks herself, how old will Cooper be when she is fifty or seventy or eighty and will anything have changed? I did those calculations when Danny, my older son with profound DD, was Cooper’s age and now I am up there in that age range. Some things have changed, but many have not. 

When Danny was a young child, he was a screamer and it was next to impossible to take him anywhere for very long that was in a public place. When we did, we always had a well-planned escape route. It wasn’t that we were rebuked by other people for bringing our son into public places; it was that there was very little enjoyment in doing so, either for us or for Danny. At the age of 40, Danny still does much better in more controlled settings where the care that he always needs is immediately available and he doesn’t have to depend on the kindness of strangers for his enjoyment of life.

I get annoyed when advocates of full inclusion expect all of our family members with disabilities to put themselves out there in public view to teach ordinary people about the accomplishments of people with disabilities. Encountering Danny may teach them something about tolerance and the human condition and what it means to carry on, as Danny has for forty years, having to rely fully on others for his most basic needs.

As an example of Danny’s fortitude, he was in the ER last night with uncontrolled seizures, again. In between small 10-second seizures, he managed to make funny clucking sounds and smile broadly when I played a Youtube video of a Cockatiel who had learned to whistle the theme song from the Addams Family. How many of you out there would be up to that after two hours of intermittent seizures??

A random person at a shopping mall who encounters Danny is likely to be more overwhelmed by how different he is than your ordinary forty-year-old than to recognize his accomplishments. Or, if he is screaming, it is also possible, that he or she might be as angry as those parents on the playground who demanded to know why Cooper was allowed at the special needs inclusive playground. Or, if we were lucky, we might encounter someone who has an aunt with cerebral palsy, or a grandmother with dementia who is taken care of by another family member, or the mother of a child with Down syndrome who will likely never be a TV star. At that moment, Danny only has to be himself to let others in the same boat know that they are not alone.

I suspect that Kate and her son will leave the house and go back to that playground, Cooper’s favorite place to play. She should always remember that ugly incident with the image of the those parents juxtaposed with the sign explaining the reason for building an inclusive playground. And I hope that the next time she is out there, she meets a parent with a boy who has spent his morning lining up chairs against the living room wall as Cooper does in Kate’s video.

***********************

Finding Cooper's Voice by Kate Swenson

Surviving the Inclusion Delusion: Danny at 40

I have made some changes and corrections to this blog post since it was posted on October 3rd, 2016. This version may look slightly different from the original, but the substance of the post has not changed.---JRB

Update: This post was published in the Nonprofit Quarterly on 10/26/16

*********************************************
My son Danny is forty years old this week. He has multiple disabilities resulting from brain damage acquired during his first few days after birth. He functions at the level of a 6 to 12 month old infant and always will. And, yes, I know he is not really an infant.  We do not love him less because he lives and survives with profound developmental disabilities. 

I’ll spare you the details of his birth and the aftermath. It’s enough to say that while the other mothers whose babies were being discharged from the hospital were learning how to give their babies a bath, I was receiving instructions on how to administer Cardiopulmonary Resuscitation to an infant.  

I first heard the term Inclusion around 1990. Danny was 13 years old and attending High Point School in Ann Arbor. High Point was an outstanding program for Danny, bringing together services, expertise, and a supportive community to accommodate children with the most severe disabilities, including complex medical and behavioral conditions.  

Inclusion, when applied to schooling for disabled children, is the belief that all children, regardless of the severity or nature of their disabilities, can and should be educated in regular classrooms with their non-disabled peers.  Inclusion was promoted by many disability advocates as a “right” for every child. Most discussions of the idea did not include an examination of whether the premise on which the belief is based is true for every child or whether it is required by the federal Individuals with Disabilities Education Act (it is not). In the face of any disagreement with the idea, promoters of inclusion encouraged families to take sides: “Are you for ‘Inclusion’ or against it?” Or as many advocates would have it, “Do you want disabled children isolated and segregated from the rest of society or do you want them to be fully integrated into and embraced by ‘the community’”? This continues to this day. See "Choosing Sides On School Inclusion" from the Huffington Post, 8/22/16.

The Inclusion Delusion began with a false and unprovable assertion based on wishful thinking and a willful misinterpretation of federal law. In 1990, there were many disabled children who were unjustly and illegally prevented from participating in classrooms with their non-disabled peers and there still are.  Many of their parents understandably leapt at the idea that by proclaiming a belief in Inclusion, their children’s needs might finally be recognized and fulfilled. 

But the uncritical acceptance of the Inclusion Delusion disregarded a number of moral and ethical questions:  Is it right to make judgments about “all children with disabilities” without considering their individuality and acknowledging the full range of their diverse needs?  Do advocacy organizations or government agencies have a right to impose on children and their parents an all-encompassing doctrine when the parents and others who know the child best have good reason to disagree? Is Inclusion the ultimate goal of educating children with disabilities or are the needs of the individual child paramount in determining educational services and placement? Is Inclusion a cause that must be served, whether or not it is appropriate for a specific child? 

In the early 1990’s, the indoctrination for inclusion in schools was intense, an obvious sign that the project was well-funded and a great opportunity for organizations and local agencies to tap into a new funding stream. I attended a meeting sponsored by our local ARC (formerly the Association for Retarded Citizens) featuring a speaker from another state. She gave a rousing speech citing success stories of even the most profoundly disabled children blossoming in the presence of their non-disabled peers. Non-disabled children, she said, were learning acceptance, tolerance, and the value of people with disabilities to society and their fellow citizens. 

As I listened, I pondered how Danny would be accommodated in a regular middle school classroom? How would they deal with his bouts of vomiting after meals, the necessity for frequent diaper changes, and his need for floor space for his favorite activity - rolling over? Would other students and staff tolerate his occasional blood-curdling screams when things weren't going well for him? Was it wise to remove him from an environment that had every accommodation that he needed and place him where virtually nothing was geared toward his needs? Could anything prevent him from becoming the chief source of disruption for almost every activity that normally occurs in a typical classroom?

I started to pay more attention to the speaker when she offered up some good advice: 

“Give people with disabilities what they need and want! If you want to know what they need and want, ASK THEM! “

Now, that made sense to me and I became more optimistic that I would get something out of the evening beyond a welcome break from caregiving. My optimism was soon crushed, however. The speaker followed her initial advice with a list, her list, of all the things people with disabilities are supposed to need and want. She did not ask if the audience agreed with her.  “They all want to be treated like everybody else,” she said, apparently oblivious to the fact that Danny would die if he were “treated like everybody else”. She went on: “…they want to live independently and make their own decisions; they want to go to regular schools and work at regular jobs; they want to be included in their communities in every aspect of life,”  and so on. Some of the items on her list made sense to me, but most did not considering the complexity of Danny’s severe disabilities.

On another occasion, I saw a film of children's responses to having disabled students in their classrooms. One boy said he had learned that, "Disabled people can do everything that everyone else can do. They just have to try harder." I can understand a child coming to such a simplistic view of disability, but for the adults to include it in a film promoting Inclusion raises questions about their judgment. Poor Danny, I thought. With that kind of "learning", what would ignorance look like?

Danny continued at High Point school for another 13 years. As the Inclusion movement took hold, many children were moved out to local schools, some with the approval and support of their parents and some without. There were threats that the school would close and it almost did. Finally, a charter school and other programs sponsored by the County school district moved in to the empty classrooms and eventually filled the space left by special ed students who had moved out. The integration of High Point and the charter school proceeded at a relaxed pace and was not forced where it was not appropriate for the students involved. At the same time the integrity and the usefulness of the High Point program continued to function to the benefit of the most severely disabled children in Washtenaw County. 

Was this an example of the success of Inclusive education? I don’t believe so and it certainly did not meet the criteria set by advocacy organizations that demanded that disabled children be seen to hobnob with their non-disabled peers to prove to the world they were just like everybody else. The purpose of High Point was never to isolate and segregate its students from the broader community, but to give them an environment and specialized care that was not likely to be achieved anywhere else. 

The Inclusion Movement in education was an ideological undertaking, more enshrined in the imagination of zealots than in the laws and policies governing the education of actual children with disabilities. The 1975 Education for All Handicapped Children Act was in full swing by the late 1970’s and early 1980's, with the majority of children in special education, those with learning disabilities and speech and language problems, attending their neighborhood schools and spending most of their time with children who were not disabled. It was true that schools still ignored the needs of children who caused them inconvenience or were difficult to accommodate or educate, but parents were getting the idea that with a lot of hard work and belief in themselves and what they knew about their children, it was possible to make headway with the new protections and rights afforded their children. 

The Inclusion Delusion, that all children could be accommodated in regular classrooms, signaled a dramatic shift in thinking. Rather than determining the education that each child received based on his or her unique needs, it made the assumption that every child could succeed in placement in regular classrooms. If that did not work, the parents, the schools, and the professionals must have done something wrong. Or, as one parent said in another short documentary promoting Inclusion, “Even if it doesn’t work, you should do it anyway. It’s the right thing to do”.

For years, the proponents of Inclusion in schools have pitted parents against parents, demonized teachers and staff who work with children in specialized classrooms and special schools and set the stage for years to come for disability movements based on over broad generalizations about people with disabilities. 

In the mad dash to close institutions and many other specialized programs for people with disabilities, the people directly affected by these closures were rarely asked their opinion early enough in the process to make a difference.  Instead, advocacy groups, especially those that receive federal funding to promote their causes, claimed to represent people with disabilities and swooped in with all the answers: No one would choose to live in an institution or group home, work at a sheltered workshop, attend a day program with other people with disabilities, or live anywhere but in their own home or at home with their family. All people with disabilities can and should live independently, make all their own decisions, and work in integrated, competitive work settings. 

The truth is that there are people with disabilities who can do only some of these things, some who can do none of them, and some who choose to do things differently than other people with similar disabilities. They have been marginalized. The closure of programs and services that meet their needs has been justified with the promise that closing programs that no one wants, according to the advocates, will pay for more services to more people, “in the community”. This is unlikely to ever be realized as states see “savings” as opportunities to fund more popular government- supported programs (such as fixing potholes), to reduce taxes, and to continue to ignore many of the needs of people with disabilities. Attempts to develop innovative family-initiated projects to serve and house people with disabilities that may actually save money in the long run are also being thwarted by advocates who fear any incursions into the territory they have claimed for themselves as the representatives of all people with disabilities.

Thanks to Danny (and Ian who came along eight years later), my blog has been an attempt to set the record straight, give a voice to people who are rarely heard, and attempt to restore some balance in the stories that are told about people with disabilities. This is an unbelievably  frustrating time for families who see their judgement questioned at every turn as they attempt to salvage necessary services for their loved ones and hope for a truly inclusive future that acknowledges differences in abilities and needs and honors the choices that families and their loved-ones must make. 

****************************************

For information on Michigan special education and other kids issues, check out Bridges4Kids.

Does Closing Sheltered Workshops Increase Supported Employment for People with DD? Not Necessarily !

Supported employment services are defined in the federal Developmental Disabilities Act: 
  
The term 'supported employment services' means services that enable individuals with developmental disabilities to perform competitive work in integrated work settings, in the case of individuals with developmental disabilities—

- for whom competitive employment has not traditionally occurred; or
- for whom competitive employment has been interrupted or intermittent as a result of significant disabilities; and 
-who, because of the nature and severity of their disabilities, need intensive supported employment services or extended services in order to perform such work.

**************************************** 
There is a national movement to employ more people with disabilities in competitive, integrated work settings where they can work side-by-side with non-disabled employees and make the same wages for the same work. This is a reasonable goal for most people with disabilities and a welcome change from an assumption that people with disabilities are unemployable in regular work settings. At the same time, there is a push to close facility-based work programs (sheltered workshops) that serve people with more severe disabilities. These specialized settings often offer other services and social opportunities that are not available elsewhere. 

The Michigan Developmental Disabilities Council is considering supporting legislation that could eliminate the use of “subminimum wage certificates” that allow employers to pay people with disabilities less than minimum wage if the individual is not as productive as non-disabled workers doing the same job. These certificates are issued by the U.S. Department of Labor to provide incentives to employers to hire more people with disabilities. 

In Michigan, most of the subminimum wage certificates go to sheltered workshops. Without the use of these certificates, it is likely that sheltered workshops would eventually be driven out of business. There are no suggestions that I know of from advocates who want to get rid of the subminimum wage that these be replaced with other incentives or subsidies to keep facility-based programs open. The elimination of subminimum wages is essentially another way to close sheltered workshops. The only option for employment for people with DD would be supported employment in competitive, integrated work settings, a scenario that is unlikely to work for people with more severe disabilities.

Evidence from Michigan and other states where sheltered workshops have closed do not support the idea that people with DD who need and want employment will be able to find jobs when the only option is supported employment. In some cases, unemployment among people with DD has increased and the percentage of people using supported employment services has decreased after sheltered workshops have closed.

Ottawa County, Michigan, is feeling the impact of closing a sheltered workshop. Kandu, a popular nonprofit organization that trained and hired adults with disabilities, cognitive impairments or other barriers to employment, ceased operations in August of 2015. Of the 681 people with developmental disabilities served by Ottawa County Community Mental Health, 170 worked at Kandu.  96% of those employed in sheltered workshops in Michigan worked more than 14 hours per week for an average wage of $2.50 per hour. 

At meetings with the local Community Mental Health agency, it was agreed that integrated employment should be a priority, but families questioned whether this option was feasible for all, based on these factors:

• The availability and affordability of supports that enable a person to work
• Sufficient employers able and willing to create jobs and pay at least minimum wage
• The actual ability of a person to perform a job function

The community is divided between those who agree with a philosophy that presumes that everyone is employable and a concern that eliminating the subminimum wage and closing sheltered workshops will reduce the opportunities available to people with DD to be employed.

Maine

In 2008 a law went into effect to increase supported and integrated employment for people with disabilities. The law also phased out the use of sheltered workshops. The CHIMES Foundation and The George Washington University issued a report on the experience of people with significant disabilities who were employed by sheltered workshops as well as providers who formerly operated sheltered workshops in Maine. 

The key findings in the report, "Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine", included:

• People who had been employed in sheltered workshops have seen their hours worked per week decline.  2/3rds of those previously employed are no longer employed and those who are working earn less per week because of the reduction in the number of hours worked. 
• In 2008, the year Maine Public Law Chapter 101 went into effect, 39.5% of people with disabilities were employed.  That number dropped to 34.1% by 2012.
• Sheltered workshops in Maine were employing 558 people with Intellectual and Developmental Disabilities (IDD) in 2001.  There were no people employed in sheltered workshops in 2010.  The number of people with IDD who were served in integrated employment in Maine also declined during the years from 2001 to 2014.
• Employment data for people with intellectual disabilities in Maine show an average of only 12 hours worked per week in 2011, the lowest in the nation.
• After the passage of the law, non-work placements increased dramatically from 550 to 3,178.
• Level of disability was one characteristic commonly cited as a factor impeding placements for some people who are no longer employed.

Washington State

The Center for Health Care Strategies September 2012 Report (on page 17) includes experiences with “Employment First” in  Washington State. This was part of an effort to “...focus all publicly-funded resources for persons with I/DD to finding and keeping paid employment in the real world as opposed to sheltered workshops or recreational activities like bowling or excursions to the mall. Although the state continues to fund support staff for sheltered workshops, it is phasing them out in favor of finding their clients jobs in places like Fred Meyer, Starbucks, and PETCO.”

According to the report: 

• In 2008 Washington spent roughly $50 million on employment-related services for people with developmental disabilities. Some 3,700 beneficiaries currently hold paying jobs, but most of these individuals are relatively high-functioning; among those with more severe disorders, only 17 percent have found work (30percent in Seattle).[emphasis added] In part, this can be attributed to the  recessionary job market when prospective employers can typically select from a surfeit of applicants, many of whom are overqualified for the position.
• At the same time, many families of adult children with I/DD are asking whether the state is going too far in believing that people who have difficulty communicating or using the bathroom will be able to find and keep a job. After repeated objections, the state softened its position somewhat and allows beneficiaries who have made no progress in finding employment after one year to be eligible for publicly-funded recreational activities instead.

Vermont
 
The disability news website Disability Scoop featured a somewhat misleading article on closing sheltered workshops in Vermont, “A Bet On Inclusion Pays Off” by Chris Serres of  the Star Tribune [Minnesota] on 12/16/15.

According to the article:
 
"In 2002, Vermont became the first state to stop funding sheltered workshops. The state also ended the practice, still common in other states, of using Medicaid to subsidize group homes for people with disabilities.

"Instead, the state sends money directly to clients with disabilities for services of their choosing, such as job coaching and transportation.

"Today, Vermont leads the nation in almost every measure of workplace inclusion. Vermonters with intellectual disabilities are twice as likely to find jobs in the community as their counterparts in other states. Nearly 40 percent work in the community alongside people without disabilities, compared with 13 percent in Minnesota, for example.
…

"The 'Vermont model' of supported employment has thrived. Within three years, 80 percent of the employees at the state’s last sheltered workshop had found paying jobs. It has the highest rate of community job placements for clients with developmental disabilities; in 2013, its rate was nearly six times the national average."

To be fair, the article also catalogs abuses in Vermont's sheltered workshop programs. It exposes a dark side of the provision of services to vulnerable people with disabilities when providers and state and local agencies are not held accountable for abuses that occur under their supervision.

A quick look at Vermont’s record on supported employment as reported in the "UCP [United Cerebral Palsy] Case for Inclusion 2015" tells a different story. The percentage of people with Intellectual and developmental disabilities (ID/DD) in supported employment has decreased since Vermont closed its sheltered workshops:

A graph tracking supported employment shows these figures:

2004   43%
2006   48%
2009   38%
2011   35%

**********************************

Conclusion:

Efforts to increase competitive employment for people with DD in integrated settings should not be expected to offset the need for specialized employment services based on the severity and nature of an individual's disability. "Robbing Peter to pay Paul" (or in this case, closing sheltered workshops to fund more supported employment),  is never a good policy decision when it comes to people with needs as diverse as those with developmental disabilities.

One Family's Quest for True Integration and Person-Centered Care

[This is from the Fall 2014 VOR print newsletter, "The Voice - news and views of VOR Supporters". Helen Norcross lives in Wyoming.]

Helen Norcross is a firm believer in community integration and a person-centered approach to planning care.

She has been a lifelong advocate for her son, Josh, who has profound behavioral challenges, and recently quit her job in corrections/treatment to work for the Wyoming Independent Living Center.

She knows how integration should look for her Josh, but seriously questions whether the State of Wyoming does.

"For me, community integration and true inclusion means my son is provided with opportunities to live his life to the fullest extent of his abilities while keeping him and others in our community safe," explains Norcross. "It's about really focusing on Josh. It's about person-centered supports, with an emphasis on the person."

Josh's early years

For years, Helen and her family attempted to strike a balance between integration and safety. This involved wiring her family home with buzzers so that they knew where her son was at all times.

"Josh's disabilities make him unsafe for other people and animals," shared Norcross. "We had a responsibility to keep our younger son safe, as well as our understanding neighbors. Still, to live with alarms that the whole neighborhood could hear if Josh went out the door was exhausting and stressful --and certainly did not mean 'community integration' for him."

As Josh grew so did his challenges and needs. "We were all prisoners in our own home, completely isolated," she said.

So, Norcross called in that promise made by the State so many years ago when they adopted Josh, only to find that he along with about 500 other eligible Wyomians with disabilities, faced years of waiting.

Hope evaporates

In March 2014, after over a year of back-and-forth negotiations, the State had finally approved Josh's waiver application as an "emergency case," and, recognizing Josh's profound needs approved funding at the highest level of care and supervision allowed under the waiver.

With approval in hand, Norcross set out to find a provider willing to serve Josh. After 3 months of looking and rejecting providers, or being rejected by providers that did not have the staff or experience necessary, a quality provider was identified and willing to serve Josh and, much to the gratitude of the Norcrosses, also provide for day habilitation which his waiver funding did not cover.

However, Norcross' diligence in finding the right provider for Josh's needs--a person-centered approach to delivering services--backfired because not enough money was spent on Josh's care while Norcross was looking for a provider. The Wyoming Behavioral Health Department assumed Josh did not need these services and significantly cut his approved funding.

"No one thought to call me," said Norcross. "I could have told the Department that the services were not used because I was still trying to find a provider. Josh's needs certainly didn't change. Yet, we were back to square one."

She now wonders just how the Wyoming Behavioral Department defines "person-centered." Having worked in treatment for so many years and also raising Josh, Norcross understands the person-centered approach better than most.

"I've had intensive training in this approach and have seen it work with the most challenging individuals," Norcross said. "It's really about treating people like people and respecting differences in choices and needs."

The Journey Continues

Norcross continues to advocate for Josh using a person-centered approach and will fight to make sure that all funding taken from his Plan of Care will be restored.

Still, she is frustrated by the fight and worries for other families who don't know the system as well.

"Because Josh's behaviors affect other people, putting the community at risk if funds are not restored, there should be urgency to getting him appropriate  care," said Norcross. "My advocacy is critical in helping the State see that urgency, but what about other families who are suffering in silence? I worry about these people."

Norcross also questions how a "systems change" approach toward full inclusion and integration can also be person-centered care.

"'Integration' is being pushed as the ideal, but blindly so," said Norcross. "My family home, wired like prison, is considered 'integrated.'"

Norcross hopes her work with the Wyoming Independent Living Center will provide her opportunity to reframe the dialogue.

"We've lost sight of concepts like 'community integration' and 'person-centered supports,'" she says. Families, advocates and elected officials must re-direct collective focus away from 'bricks and mortar' and back on each individual."

My son's needs are unique and personal to him," added Norcross. "What he needs and what I want for him will be different than another individual and another family. Our system must be responsive to individual needs and choice. I am a fighter and I do not give up. I will continue working to change that."