NCSA Comments on the 2022 National Strategy to Support Family Caregivers

NCSA submitted the following comments in response to ACL’s call for comments on the 2022 National Strategy to Support Family Caregivers.

Alison Barkoff
Principal Deputy Administrator
Administration for Community Living
330 C St SW
Washington, DC 20201
Via email: Alison.Barkoff@acl.hhs.gov

November 21, 2022

Re: NCSA comments on the 2022 National Strategy to Support Family Caregivers

Dear Ms. Barkoff and friends at the Administration for Community Living:

Thank you for giving us this opportunity to comment on the 2022 National Strategy to Support Family Caregivers. National Council on Severe Autism represents the interests of individuals, parents, clinicians and caregivers affected by severe forms of Autism Spectrum Disorder (ASD or autism) and related developmental disorders. In our population, ASD, alone or with comorbid conditions like intellectual disability, is often a debilitating or even ruinous disorder, as it can compromise higher-order cognitive processes, including language, social comprehension, abstract thought and learning. According to the CDC, nearly 60% of U.S. children with autism have significant or borderline intellectual disability (Maenner et al. 2021).

In addition to the impaired ability to engage in activities of daily living, many in this population have challenging behaviors, including aggression, self-injury, property destruction, and elopement, psychiatric and medical comorbities such as seizures. Due to pervasive functional limitations, these individuals are unable to live independently, and are incapable of earning a living. They typically require 24/7 support, for their lifetimes.

Autism rates, including rates for those most severely affected, have been increasing precipitously over the past three decades, with the CDC estimating that 1 in 44 children now have the disorder. While the reasons for the dramatic increase in autism rates have not yet been identified, the phenomenon has been well described across the country. For example, in California's Department of Developmental Services, the autism caseload skyrocketed 50-fold over the past 35 years, from about 3,000 cases to about 158,000 today. The vast majority of this population is under age 30, with ever-larger cohorts aging into a stressed and overburdened adult care system each year.

For this burgeoning population of dependent children and adults the preeminent issue is sufficient caregiving, both near-term and long-term, and this of course includes parents and other family members.

Many parents and family members in our community are not just caregivers, but extreme caregivers. They often must leave jobs and careers in order to devote themselves to the welfare of their loved ones. They often suffer financial distress, isolation, depression, chronic stress, trauma, and physical injuries. They routinely face discrimination in the community and the care system, with many barriers to accessing needed supports for their loved ones, such as in-home services, appropriate clinical care, and vocational services. And they bear the burden of immeasurable worries about who will care for their loved ones as they age and pass away.

The future for caregivers for children and adults with autism has grown into an issue of monumental national urgency. Having reviewed the 2022 National Strategy to Support Family Caregivers we would like to provide the following comments that we hope will be reflected in future revisions.

(1) It is important that the Strategy specifically call out autism as a major area of concern for national caregiving policy, just as the report specifically calls out dementia, for example. Autism is the fastest growing disability among U.S. children, and it is rapidly eclipsing other disabilities in our developmental disabilities (DD) systems. Autism already represents 42% of the DD system in California and is poised to make up half the system within a few years,

(2) The ACL Family Caregiving Advisory Council should include a representative from the National Council on Severe Autism to ensure the needs of this large and growing community are represented and addressed.

(3) We agree that a Needs Assessment Survey is critically important. It is imperative that we develop better data about the scope and nature of the dependent autism population, the health and welfare of their family caregivers, and the supports needed by those with autism as their relatives who are primary caregivers decline in ability and pass away.

(4) We agree that data development should include infographics about caregiving by the CDC and other agencies, representing data such as prevalence of family caregiving in autism, characteristics of caregivers (for example, age, socio-economic factors, income), and tied to the severity of needs of their dependent loved ones.

(5) The report makes reference to role of caregivers in supporting DD adults who engage in competitive, integrated employment (CIE), but makes no mention of caregivers who support adults incapable of achieving CIE — which is the norm in our autism subpopulation. This is plainly discriminatory, based on the functional abilities of the dependent loved one, and this discrimination in favor of only one sector of caregivers should be eliminated from the report. Adults who engage in non-competitive employment, volunteer work, or day programs surely deserve equal respect and support. It is simply reality to recognize that many adults with autism and DD cannot achieve CIE.

(6) We agree that family caregivers who are employed need stronger supports and accommodations from employers to remain employed whenever possible. 

(7) Case management, as may be funded by state Medicaid programs, is vitally important to help family caregivers at all stages of their journey. We need robust case management that can ensure all adults disabled by autism have appropriate medical care, crisis services, support services, community services, and supported housing. This is a major issue that will intensify as the autism parent population ages.

We note that while the report makes multiple references to "linking family caregivers to information" about services, this is often an empty sentiment. If the services do not exist in reality, this is just lip service to the caregiver. The report must place more of an emphasis on the development and real accessibility to meaningful services and supports, and less on "information," "webinars," "toolkits" and the like. 

(8) We agree that veterans who are caregivers need maximum support from the VA to ensure they have the resources to fulfill their roles.

(9) The physical and mental health of caregivers is very important. If they are not healthy they cannot provide quality care for their loved ones. Medicaid programs should fully cover the healthcare costs, as may be necessary, for family caregivers who devote themselves to the support of dependent, disabled loved ones.

(10) We agree that listening sessions are a good idea. We ask for a listening session by ACL with the NCSA audience to ensure that our concerns are heard and addressed.

(11) We strongly agree that Medicaid-funded in-home support programs should entirely eliminate any bias against family caregivers. Qualified family caregivers should be entitled to the same benefits and wages as those who are unrelated performing the same tasks, when caring for disabled adults or disabled children with extreme needs. The approval of 1915(c) HCBS waiver applications to pay family caregivers is very important.

(12) We strongly agree that it is urgent to increase, strengthen and support the paid LTSS and direct support workforce. Family caregivers can only do so much or last so long. 

More work must be done to address recruitment, education, training, retention and career advancement of DSPs in all the states.

(13) Assisting family caregivers with financial planning is a very good idea. Perhaps this could be effectuated via the case management package, referenced above. Perhaps also consider more flexible use of ABLE accounts to address caregiver needs.

(14) We were very alarmed to see the issue of Guardianship receiving scant attention. Only "alternatives to guardianship" are mentioned in the list of federal actions, and only once. Guardianship (or conservatorship) is a vital tool to protect the legal interests of adults incapable of managing their own affairs. It goes without saying that most autistic adults in our community lack the legal capacity to make a delegation of authority via power of attorney or supported decisionmaking. The report must emphasize the vital importance of guardianship and the need to improve the support for, and monitoring of, guardians and conservators, particularly as these roles move from family members to professionals and unrelated parties. 

(15) Another notable omission from the report is that parents will themselves need long-term care while they still bear the responsibility of caring for their disabled grown children. This is particularly acute in the autism field, as children with autism will for the most part outlive their parents (this is often not the case with other developmental disabilities). The longevity of the burgeoning autism population represents an unprecedented challenge for caregivers and this inevitable collision of care systems and must be explicitly addressed in the report.

We thank you for your consideration of our comments.

Very truly yours, 

Jill Escher
President

Lancet Report: Momentum builds toward breaking up the autism spectrum

Dear NCSA community, 

In October, NCSA published its position statement calling for categorical recognition of severe autism in the DSM. We emphasized the irrationality of an ASD diagnostic label that includes both "a young man with no language, a low IQ, few functional abilities, and aggressive, dangerous behaviors" as well as "a college professor with social anxieties and some OCD." 

This galactic overbreadth subverts the essential purpose of psychiatric diagnostic labels: to describe a group of patients afflicted by a consistent set of impairments for the ultimate purpose of guiding meaningful interventions, services, and research.

We are hardly the only voices decrying the DSM-5's nonsensical scheme. And today a prestigious commission from The Lancet endorsed the use of the term “profound autism” to distinguish and support individuals who have high dependency needs and are likely to need 24-hour care throughout their lives. 

Below are commentaries on this direction from NCSA board members Alison Singer, Amy Lutz and Jill Escher.

We are excited to see a larger movement toward a diagnostic scheme that reflects the realities and needs of this population, which includes some of the most devastatingly disabled patients in the entire field of psychiatry — and who must no longer be hidden in a category increasingly associated with "differences" and "strengths."

—NCSA

Labels can harm, but they also can help: See ‘profound autism’
From Stat News

A Lancet Commission report sets out priorities for autism research and practice, including a new designation for “profound autism.”

By Alison Singer

Labels are a divisive subject. When used inappropriately, they have the power to misrepresent and dehumanize people. As the mother of a child with autism, I have seen numerous instances in which hurtful or inaccurate labels have been applied to my daughter. Yet there are times when using accurate labels can dramatically improve the lives of those with autism. The specific label I’m thinking of is “profound autism” — and it’s one being embraced by an increasing number of autism researchers and advocates.

On Monday, The Lancet published a special report by The Lancet Commission on the Future of Care and Clinical Research in Autism, of which I am a member. In the report, several colleagues and I introduce the term profound autism to highlight the needs of people who cannot speak for themselves.

The term profound autism is intended to describe autistic people who are likely to need 24-hour support throughout their lives. The goal of introducing this designation is to provide more specificity to the extremely broad autism spectrum to equip parents, service providers, and the public with the language necessary to ensure that individuals with autism receive the accommodations and interventions they need. Concise, meaningful terms like profound autism will simplify the process of determining appropriate care, leading to quicker and more forceful interventions....

This muddle has had catastrophic consequences for those who, like my son Jonah, fall under the category of profound autism. Not only has their exclusion from research been well-documented, but their policy needs and preferences have been eclipsed by those of high-functioning autistic self-advocates who have spearheaded the ongoing fight to close the intensive, disability-specific settings that are often most appropriate for those who struggle with aggression, self-injury, and elopement. As the Commission noted, the most affected population is "at risk of being marginalized by a focus on more able individuals."... Read more

Lancet Commission Calls for New Category: "Profound Autism"

Pressure mounts to split the broad autism diagnosis created by the DSM-5.

By Amy Lutz, in Psychology Today

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”... Read more

Podcast interview calls out absurdity of over-broad autism spectrum

Thanks to Mary Barbera for hosting NCSA President Jill Escher on her latest podcast episode. In addition to the failings of autism diagnostics they discuss new directions for autism research, exponentially increasing autism rates, NCSA, and national autism policy (or lack thereof). Listen in

Have an opinion about breaking up the autism spectrum? Join the conversation on NCSA's very active Facebook page.

See NCSA's position statement on the need for categorical recognition of severe autism in the DSM.

The Sia Shaming Spectacle Is a Tragedy for the Arts and the Autism Community

By Jill Escher

Humans have a long tradition of public shaming spectacles. Think of the public hanging of criminals, the burning of heretics at the stake, the guillotine-ing of aristocrats, the stoning of women accused of adultery.

But in our modern era the spectacles are more likely to take place online by outraged (or, more likely, mildly ruffled and anonymous) mobs who gleefully dogpile on hapless victims after the latest e-fatwa is announced by their leaders.

It only takes about 30 seconds of your time, provides a rush of sanctimonious satisfaction, and, best of all, it’s free! Can you say, “Cheap Thrills”?

Yes, the singer/filmmaker Sia is the latest casualty to succumb after committing a truly TERRIBLE SIN … an unforgiveable transgression of the Book of Neurodiversity … she cast an actor in the role of a girl with severe autism in her new film “Music” … and that actor was only pretending to be that character! OMG, shut the door! Daniel Day Lewis you are cancelled! Eddie Redmayne you too are cancelled! Dustin Hoffman, consider yourself cancelled! Every actor who has ever played someone beset by a condition they didn’t actually have, enjoy the gruel in Cancel Jail! (Goodbye Leonardo DiCaprio, and oh no, also Russell Crowe, I am sobbing….)

The attack on Sia by a vocal, unhinged minority is so preposterous that one would normally shrug it off with a “Oh, there go those-people-who-have-so-much-time-on-their-hands-they-attack-a-stupid-puzzle-piece,” but in reality this is much worse. This time, evil has triumphed.

Evil because the crusade to crucify Sia sends a diabolical message to every person in the performing arts: depict severe autism in your movie/film/play at your own peril. If you don’t do it exactly the way we want, you are toast. Transgress the Book of Neurodiversity in even the slightest manner and you will be pilloried, putting at risk months and years of creative effort and financial investment. Your reputation will be stained. Your artistic freedom squashed.

In other words, what artist would dare to tread on the subject matter of severe autism when a tidal wave of mindless insta-denunciation awaits them, at the merest stroke of a self-righteous Tweet?

For that’s what’s at stake here — banishment of depictions of severe autism. As the autistic writer Lucy Kross Wallace observed:

“It is one thing to suggest that casting actors with disabilities might produce more compelling performances, but it is quite another to foist these requirements upon every artist. In calling for Music’s cancellation, neurodiversity advocates cross the boundary from exercising their own liberty to infringing on that of others, including Sia’s autistic collaborators.”

What a tragedy for the autism community. Children with severe forms of autism have become a vast proportion of the population, about 1 to 1.5% of all children! Clearly they deserve more and more representation — in the news, on film, on TV, on stage, in print, everywhere. But the hair-trigger threat of Neuro-scorn will surely help keep severe autism firmly in its dark corner, orphaned, abandoned from the broader autism discourse, despite the monumental societal urgency.

As the mom of a nonverbal autistic teenage girl who seems, based on the trailer (I haven’t seen the film, it’s not yet out in the US, and I should add that for all I know I won’t like the film at all), very much like the lead character Music. How fabulous that a filmmaker chose to make a movie with a character like my darling Sophie, it’s happy dance time! People like Sophie are so dreadfully hidden from public view. So my feeling was, hurray for Sia for shining an oh-so-rare light!

But — according to the mob but also Autism Speaks, which tweeted in support of the mob — no happy dancing for me, because someone like my dear Sophie was not cast in the lead role.

Okaaaaaayyyy… say what? Let me tell you what would have happened if Sia had cast Sophie as Music. She would have wandered off the set, flung off her costume and headphones, flipped out at the lights and noise, fell asleep at the late hours, and failed at following a single directorial direction. In other words, disaster.

This point was conceded by the mob, which instead took the position that Sia should have cast a girl with high-functioning autism who had the cognitive-functional capacity to perform in the role. Sure, okay, I saw the lovely film “Keep the Change,” which, for example, cast actors with high-functioning autism in the lead roles, and to my mind it was triumphant.

But, really, we can acknowledge that actors with autism or other disabilities can do great work and should be among those considered for roles of all kinds without the disproportionate hysterics of demanding that every single autism character be played only by those who pass some sort of bizarre spectrum purity test? Or should a zealous mini-mob wield veto power because through some loony logic that I have been unable to fathom, they own the whole turf of “autism”?

Yesterday I am told Sia took down her Twitter account after enduring months of attacks. I am told she apologized to the mob (for what, I’m not sure).

We are all losers here. The autism community. Artists. Writers. Actors. The public. Creative expression. Free speech. Disability awareness. And of course Sia herself.

It cost exactly nothing for vindictive and self-absorbed Sia shamers to cast a dark shadow on her heartfelt endeavor over a mere triviality. This is not how reasonable people behave. Reasonable people may write a negative film review (have at it!) but they don’t launch a cancel crusade over something as innocuous as casting choices (right, Daniel, Eddie, Dustin, Leonardo, and Russell? or shall we demand your penance too?).

The frightening bottom line here, to borrow the words of a neurodiversity leader, is that Bullying Works.

Jill Escher is President of the National Council on Severe Autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.