Behavior: Gateway to Inclusion

GUNS, VALPROIC ACID AND H.PYLORI. Just a Tuesday!

By Ley Linder, MA, M.Ed, BCBA

If I had to be a “traditional” behavior analyst (BA), I would be a terrible one. The repetitive nature of discrete trial training would have me reading the Geneva Conventions and conferring with geopolitical legal experts on the lunch break of my first day of employment. I’m not here to say my colleagues who live in the world of tacts and mands, in addition to possessing a fluency in all the types of differential reinforcement, are somehow better (or worse) BAs. To me, they are most impressive and admirable, given the totality and complete command of the science of behavior analysis they possess. However, this is not my experience as a behavior analyst and, to be honest, I have never conducted one minute of discrete trial training. My experience? Here are a few examples from a Tuesday morning in September.

“Ley, do you need to write in behavior programs that the residents can’t carry guns?” After several seconds of audibly laughing and then returning to reviewing a behavior graph, I noticed an awkward silence. This was a question awaiting a response.

“We need to remember the psychiatrist will treat the person, not the level” was my response to an astute direct support professional (DSP) who was inquiring about blood work for a person taking valproic acid who was “tearing the joint down.” This gem of information came from sitting in countless interdisciplinary team meetings led by psychiatrists.

“I told the doctor what you said and tried to show him what you wrote. They said they don’t believe any of that, didn’t order anything, and said it is behavioral. We spent 45 minutes in the waiting room and 2 minutes in the back.” The only thing missing from this nursing report was mention of the exasperated tone and dismissive eye roll from the doctor. You know the one! What I had prepared was a half-page psychobehavioral summary, along with behavioral data, to illustrate a possible correlation between unintentional weight loss, decrease in appetite, periodic abdominal selfabuse and H-pylori. The information and data were textbook – if one existed about the behavioral presentations of undiagnosed medical conditions in people with ID/RD. This was diagnostic overshadowing and, these days, is an intoxicating fight always worth having.

You may be thinking, “this guy cherry-picked three anecdotes from the last six months to illustrate his

point and grab my attention. Also, why is he telling me this?” Regarding the former, you are not wrong, but these three issues arose in a 90-minute period during a routine site visit in September 2022. To answer the latter, because the most common question I hear is, “You say you’re a behavior analyst, but what do you actually do?!”

What we are trained to do and what we “produce” are behavior assessments and behavior programs, tabulate and analyze data, write progress notes, and ensure fidelity of plan implementation. Peel back a layer and you will find we are educators, as we train staff

and caregivers on “the “how and why” of behavioral presentations, which is done within the framework of the evidenced-based I hear, “You say you’re a behavior analyst, but what do field of applied behavior analysis. you actually do?!” What if I said Also, we write – a a BA examines a lot. For a profession fundamentally person’s behavior with the rooted in interact- notion “everything is possible”? ing with people, I spend a shocking amount of time alone, in front of a computer, typing.

Admittedly, this is not a particularly enchanting and engaging description of a behavior analyst. Perhaps the question is not “what does a behavior analyst do?”, but rather “what makes a behavior analyst?” This question would best be answered by discussing the approach of a BA. What if I said a BA examines a person’s behavior with the notion “everything is possible”? Thus, eliminating the constructs of the setting event-antecedent-behavior-consequence model that inherently limits the scope and reach of effective behavior analysis. Sure, most any BA can tell you a medical condition is a setting event (and/or antecedent) and say, “make sure you always think medical first!” However, what “makes us” is what lies beyond the identification of the components of behavior. For example, if Jane has a history of urinary tract infections (UTI), a BA can identify and incorporate into the behavior program her individualized UTI symptoms. Through this, the BA can then educate staff/caregivers of what Jane’s UTI symptoms are likely to be and, if observed, could advise to consult a medical professional, present the symptoms (which are likely acute onset behaviors!) in the context of her medical history, and perhaps a urinalysis is completed to rule out a UTI. A non-invasive, relatively quick diagnostic procedure can resolve an acute, treatable medical condition, while avoiding consult with a psychiatrist because the (possible) behavioral characteristics of the untreated UTI were cognitive changes and increased problem behaviors. Additionally, and perhaps most importantly, the BA could help Jane recognize her UTI symptoms and teach her to communicate she is experiencing discomfort and needs assistance. This is what makes a behavior analyst. Are we medical doctors? Most of us, no. Are we nurses? SLPs, OTs, PTs, pharmacists? Probably not. The majority of us are simply behavior analysts. What makes us BAs, beyond credentials, is our willingness to be inclusive of all disciplines by recognizing their necessity in helping us be more robust and complete analysts of behavior. In the aforementioned example, it is not enough for BAs to identify the setting event and pass the medical issue off to a nurse or primary care physician. It is critical for BAs to have a working knowledge of how the treatment strategies and approaches to care of other disciplines impact the lives of the people we serve. Additionally, by incorporating the strategies and expertise of other disciplines into our assessments, programs, and own approach to care, we can increase the desired and positive outcomes of the people we serve. This is what makes a behavior analyst.

I have pondered what being a behavior analyst means to a DSP, other professional disciplines, or to persons who do not work in the ID/RD human services field. The answer, I have come to realize, differs dramatically depending on why a person may have an interaction with a BA. My belief, as a BA, is we have a responsibility to not tell people what we do, but to explain what makes us behavior analysts. For me, this means telling people that a behavior analyst has the ability to examine all behavior (not just maladaptive or aberrant) by incorporating the totality of a person, in an inclusive, interdisciplinary fashion focusing on the individual needs of the person, which is what makes a behavior analyst.

Ley Linder, MA, M.Ed, BCBA is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

>>WHY DO WE SLEEP?

By Beth Malow, MD, MS and Althea A. Shelton, MD, MPH

In this article, we will delve into the possible functions of sleep, and why we sleep. Along the way, we will bring in the history of sleep, including Shakespeare, Proverbs, and Philosophers. We will focus, not only on what clinical sleep experts consider to be sleep’s functions, but humanists as well. Why we sleep remains a mystery, although there are myriad benefits of sleep on our health and well-being.

Let’s start with why we sleep. The short answer – we don’t know! There have been several theories put forth, however.

The first is the Inactivity Theory: animals that can stay still and quiet are less apt to be targets for predators. So, we have evolved to be still at night and quiet. Although one would think being awake, still, and quiet would be better when dealing with tigers and other predators.

In fact, some animals sleep with one half of their brain at a time, such as dolphins, so they can still be awake to ward off predators. So, the Inactivity Theory has fallen out of favor.

The second theory to consider for why we sleep is the Energy Theory. In a setting where food is limited and needs to be searched for, sleep allows us to reduce our demand for energy, especially when it is harder to search for food, such as at night. However, as any of us who have gotten the munchies at 2 am know, this theory may not relate to modern times.

However, since antiquity, sleep has captivated the imaginations of ancient healers, scribes, poets, philosophers and scientists, as evidenced by mythologies, books, plays and art.1 The ancient Egyptians, as far back as 4000 B.C., used sleep as therapy, and had treatment for sleep disorders, such as insomnia. The medicine of ancient Egypt is one of the oldest documented scientific disciplines. The Egyptians were the first to mention the use of opium for the treatment of insomnia. Egyptian medical writings stated that thyme was beneficial in reducing snoring. They also investigated the nature of sleep and dreaming and interpreted dreams using “dream books.” 2

The Ancient Greeks and Romans furthered dream interpretation but in addition, their philosophers and physicians stepped away from the mystical and began to postulate on how sleep and the human body functioned together. The Greco-Roman time period is where you first find documentation of accounts of sleep and dreaming based on reason, rather than mystical knowledge.3 Circa 450 BC, Alcmaeon provided the first reason-based theory of sleep. He believed that lack of circulation (blood carrying veins) to the brain caused sleep, a spell of unconsciousness. Following him, there were multiple other philosophers with non-mystical theories of the process of sleep. However, Aristotle is the first of the Greek philosophers to provide the most comprehensive, written, reason-based account of sleep and dreaming. He wrote three full essays on the subject.4

Aristotle believed the process of sleep commenced with the consumption of food which thickened and heated the blood. The food, which he termed “solid matter” would then rise to the head where it was cooled by the brain, and the subsequent reverse flow back downward caused a “seizure” in the heart which caused sleep. Wakefulness occurred when digestion was completed with a separation between the “solid matter” and more pure blood. He also rightly believed that sleep kept living beings alive.5 Hippocrates, the most famous physician in Western civilization, wrote that sleep disturbance was something to take note of and use in the diagnosis and prognosis of disease. In Regimen in Acute Diseases, he offers advice for insomnia, “if sleep should not come, a slow prolonged stroll, with no stops, should be taken.” Throughout his multiple texts he discussed the importance of sleep and even prescribed sleep as a treatment for a variety of conditions, along with diet and exercise.6

In our ever-divided world, we agree on a few things, but most people would agree that sleep is important. Over one-third of adults in the United States report insufficient sleep. However, often, sleep is the first thing that gets sacrificed in order to accomplish all our obligations. In Macbeth,

Shakespeare writes, “Sleep that knits up the ravell’d sleave of care, The death of each day’s life, sore labour’s bath, Balm of hurt minds, great nature’s second course, Chief nourisher in life’s feast.” He is exhorting the restorative nature of sleep. Which leads us to discuss our favorite theory of “why we sleep,” the Restorative Theory: Sleep “restores” and repairs what is lost in the body when we are awake. Think of sleep as a reset button, similar to restarting >> our computers so they work better. This restoration can occur for both physical and mental conditions. For example, one theory of how sleep prevents Alzheimer’s disease stems from sleep getting rid of waste products that accumulate in our brains overnight, as described below. We also feel less stressed and more rejuvenated – ready to take on the day – once we have slept. To summarize, while WHY we sleep is still a mystery, the importance of sleep has become clear. In future articles, we will dive more into how sleep is affected by genes and other factors, and what you can do to make sure you get your best night’s sleep.

“It is a common experience that a problem difficult at night is resolved in the morning after the committee of sleep has worked on it.” - John Steinbeck This article is included in the upcoming monograph “Sleep and Sleep Disorders in People with Disabilities” published by HELEN: The Journal of Human Exceptionality.

Dr. Althea Shelton’s research and clinical practice is focused on sleep disorders in children and adolescents with neurodevelopmental disorders.

Dr. Beth Malow’s research and clinical practice is focused on sleep in autism across the lifespan, including treatments with behavioral approaches and medications.

Perchance to Dream: The Impact of a Good Night’s Sleep on Health and Daytime Functioning

We cannot overstate the importance of sleep. Getting enough sleep makes it easier to prevent and manage disease. Too little sleep and poor sleep quality have been associated with severe health outcomes. So, let us briefly delve into some of these health outcomes. In future articles, we will discuss these more in depth.

Cardiovascular Disease

Poor sleep, and chronic sleep loss, have been linked to heart disease13 and high blood pressure.6 Not sleeping enough hours increased a person’s chances of high blood pressure by 20%.14 >> Type 2 Diabetes

Type 2 diabetes has become an increasingly common chronic condition in the United States. Not getting enough sleep results in a 33% incrveased risk of developing diabetes.14 When people sleep too few hours, they are more likely to eat unhealthy foods.6

>> Attention & Memory

As sleep neurologists, problems with memory and focusing are something that we often see, and we work with psychologists to help diagnose these problems. Paying attention is one of the most studied problems.7 The fewer hours that we sleep, the more lapses in attention we have. In addition, research shows that short sleep duration causes problems with our memory, decision making, and processing speed.8 Poor sleep is linked to the buildup in the brain of a chemical called beta amyloid, which results in Alzheimer’s disease.9 Beta-amyloid buildup also occurs in Down syndrome, and has been connected with Alzheimer’s disease symptoms as individuals with Down syndrome age.10 >> Mood

Sleep and mood have a reciprocal relationship. Mood disorders, such as anxiety, can often make sleep worse, but chronic sleep loss can also worsen mood. Shortened sleep can make depression less likely.16 In children with developmental disabilities, like autism spectrum disorder, sleeping less can go along with depression and obsessive-compulsive disorder.17 The promising news is that it’s possible that depression symptoms may improve with sleeping more.18 >> Seizures

Seizures are common in some intellectual and developmental disabilities (IDD), such as autism spectrum disorder and Down syndrome, and are more common in those with more severe forms of IDD.11 Seizures have a reciprocal relationship with sleep, with disrupted sleep making seizures more likely. In turn, seizures can disrupt sleep. Treating sleep problems can improve seizure control.12

Weight Gain

Weight gain, including obesity, often results when people are not getting enough sleep, especially young adults.15 With chronic sleep loss, there are changes in leptin and ghrelin which are two hormones that regulate how hungry or satisfied we feel after we have eaten. On the bright side, getting more sleep can help with weight loss.6

Getting enough sleep makes it easier to prevent and manage disease.

REFERENCES

1. Borbely A. (1984). Secrets of sleep. New York: Basic Books. 2. Asaad T. (2015) Sleep in Ancient Egypt. In: Chokroverty S., Billiard M. (eds.) Sleep Medicine. Springer, New York, NY. 3. Barbera J. (2008). Sleep and dreaming in Greek and Roman philosophy. Sleep Med.;9(8):906–10. 4. Gallop D. (1996) Aristotle on sleep and dreams. Warminster: Aris and Phillips. 5. Barbera J. (2015) The Greco-Roman Period. In: Chokroverty S., Billiard M. (eds.) Sleep Medicine. Springer, New York, NY. 6. Grandner MA. (2017) Sleep, Health, and Society. Sleep Med Clin.; 12(1):1-22. 7. Goel N, Rao H, Durmer JS, et al. (2009) Neurocognitive consequences of sleep deprivation. Semin Neurol ;29(4):320–39. 8. Winer JR, Mander BA, Kumar S, Reed M, Baker SL, Jagust WJ, Walker MP. (2020). Sleep Disturbance Forecasts β-Amyloid Accumulation across Subsequent Years. Curr Biol. 2;30(21):4291-4298. 9. Carmona-Iragui M, Videla L, Lleó A, Fortea J. (2019). Down syndrome, Alzheimer disease, and cerebral amyloid angiopathy: The complex triangle of brain amyloidosis. Dev Neurobiol. 79(7):716-737. 10. Devinsky, O., Asato, M., Camfield, P., Geller, E., Kanner, A. M., Keller, S., Kerr, M., Kossoff, E. H., Lau, H., Kothare, S., Singh, B. K., & Wirrell, E. (2015). Delivery of epilepsy care to adults with intellectual and developmental disabilities. Neurology, 85(17), 1512–1521. 11. Malow BA. Sleep, epilepsy, and autism. (2004). Mental Retardation and Developmental Disabilities Research Reviews 10: 122–125. 12. Amagai Y, Ishikawa S, Gotoh T, et al. (2010). Sleep duration and incidence of cardiovascular events in a Japanese population: the Jichi Medical School cohort study. J Epidemiol.;20(2):106-10. 13. Meng L, Zheng Y, Hui R. (2013) The relationship of sleep duration and insomnia to risk of hypertension incidence: a meta-analysis of prospective cohort studies. Hypertens Res. 36(11):985-95. 14. Shan Z, Ma H, Xie M, et al. (2015) Sleep duration and risk of type 2 diabetes: a meta-analysis of prospective studies. Diabetes Care 38(3):529–37. 15. Grandner MA, Chakravorty S, Perlis ML, et al. (2014). Habitual sleep duration associated with self-reported and objectively determined cardiometabolic risk factors. Sleep Med 15(1):42–50. 16. Liu X (2004). Sleep and adolescent suicidal behavior. Sleep. 27(7:1351–135. 17. Veatch et al. (2017). Shorter sleep duration is associated with social impairment and comorbidities in ASD. Autism Research. 10(7):12211238. 18. Dewald-Kaufmann et al. (2014). The effects of sleep extension and sleep hygiene advice on sleep and depressive symptoms in adolescents: a randomized controlled trial. J Child Psychol Psychiatry. 55(3):273–283.

Why is Disability Competency Important?

SYSTEMIC CHANGE IS REQUIRED!

By Barrie Cohen & Chandra Hinton

The Chanda Center for Health has been a staple in the Denver community for the last 17 years. The Center provides integrative therapies and other complementary services to improve health outcomes and reduce health care costs for people with long-term physical disabilities, such as spinal cord injuries, brain injuries, cerebral palsy, multiple sclerosis, and spina bifida.

In February 2022, the Chanda Center partnered with the Colorado Academy of Family Physicians to develop a new AAFP-accredited online course designed to fill the knowledge gap for health care providers. The course, “Disability-Competence Curriculum for Healthcare Providers,” funded by the Colorado Health Foundation and developed with many stakeholders in 2020, was designed to provide an indepth look at ways individual health care professionals, their medical teams, and administrative staff can better serve individuals with disabilities as members within the system of care.

In addition to providing integrative services at The Center, founder Chanda Hinton has been advocating for her community and successfully getting Medicaid to cover acupuncture, massage, and chiropractic care to bring preventative methods for individuals with disabilities to the forefront. However, the fight is long from over. Though some positive change has happened to benefit those with physical disabilities, there is still a stigma around equitable health care for this population, and why it’s important. And that needs to change. Chanda and the Center are actively working to effect change through education, but more importantly on a systematic level to truly make an impact.

What does it mean to be disability competent?

In the world of health care, physicians and support staff are required by law (below) to be disability competent. But many health care providers are unaware of what this means exactly and, more important, why it’s necessary. Individuals with physical disabilities are entitled to independently access health care from the parking lot with designated signage, to accessible entrances, and a receptionist that is educated about a patient’s accommodations. Factors that health care providers are required to offer in order to be considered “disability competent” are proper equipment and training, communication skills, accessibility, and more.

To be disability competent, its starts by practices knowing what disability competence means, has actively made adjustments, and can show the

improvements, which demonstrates their understanding around the needs of the community. And while the need for equitable health care grows, so does the health disparity of patients with long-term physical disabilities because of the lack of compliance.

Why is disability competency important?

Persons with disabilities are considered a health disparity group, in that they are subject to avoidable inequities in access, and in the quality of, health services. While concerns around transportation, communication, and insurance are contributing factors, the knowledge gap amongst physicians in serving individuals with disabilities is the primary contributor to this inequity. In 2009, a report by the National Council on Disability noted “the absence of professional training on disability competency issues for health practitioners is one of the most significant barriers to preventing people with disabilities from receiving appropriate and effective health care.”

MEET CHANDA

When you look into the face of Chanda Hinton, you see vitality and radiant health; you see a young woman with passion and determination; you see a person of strength and purpose. If you glance down from her face, you will see her wheelchair, and you realize that the goals of the nonprofit organization she founded 17 years ago. You will see that her role is rooted in her own personal story.

Chanda is the Executive Director of the Chanda Center for Health and Chanda Plan Foundation (https://chandacenter. org/who-we-are/), which provides access to holistic, collaborative, access and disability competent healthcare programs to individuals with physical disabilities. In 2009, she led the movement to pass Colorado House Bill 1047, which created the Spinal Cord Injury (SCI) Waiver, offering acupuncture, massage, and chiropractic care through Medicaid to evaluate cost-effectiveness and improve quality of life for persons with spinal cord injuries in the Denver metro area. In 2021, she expanded these services legislatively to other diagnosis and to be a statewide benefit.

In addition to her work (passion), Chanda presents extensively to diverse audiences about wellness and disability. Her previous honors include the 2008 Unsung Hero Award from Mayor Hickenlooper in honor of Denver’s 150th anniversary, 2010 Health & Wellness Award from the Commission for People with Disabilities, 2015 Kathy Vincent award from the Colorado Cross Disability Coalition, 2015 Diversity Award from Mayor Hancock, 2017 Denver Business Journal 2017 40 under 40 honoree, 2019 Linda Andre Lifetime Trailblazer Award from the Colorado Fund for People with Disabilities and 2019 AMTA National Government Relations Activist Award, Colorado Women’s Chamber 2020 Top 25 Powerful Women

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In 2022, individuals with disabilities are still facing barriers that prevent access to quality and equitable healthcare. As The Chanda Center for Health set out to share their new curriculum with health care providers, the same dead ends individuals with disabilities advocated for a quarter of a century ago, continue to be dismissed, even now.

Feedback from physicians has varied. Some express not knowing where or not having access to curriculum, in order to comply. One of the reasons behind the creation of the curriculum. Some have completed dismissed the issue and shared responses such as “why does health care need to adjust for this community,” “I don’t have patients who are disabled,” and “why should I care?” Some health care clinics going as far as turning down free education and possible funding for equipment needed to serve people with disabilities. Based on this feedback, Chanda has shifted her focus to systematic change and addressing the issues that continue to create barriers.

How did we get here?

Disability competency is currently not, nor has been a core curriculum requirement for academia or continued education for practicing health care professionals. Health care professionals are serving the health care needs of humanity every day with little to no understanding of the structural, or cultural needs of persons with disabilities. People with disabilities are humans too, and yes… • There is the Americans with Disabilities Act (ADA), a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including employment, schools, transportation, and all public and private places that are open to the public. • There is Section 510 of the Rehabilitation Act, which includes a provision to amend the original Rehabilitation Act to “address access to medical diagnostic equipment, including examination tables and chairs, weight scales, x-ray machines and other radiological equipment, and mammography equipment... The standards are to address independent access

to, and use of, equipment by people with disabilities to the maximum extent possible.” • OSAH has reported that one major source of injury to health care workers is musculoskeletal disorders (MSDs). In 2017, nursing assistants had the second-highest number of cases of MSDs, with an incidence rate more than five times the average for all industries because of proper equipment not being available to perform health care to those with disabilities.

Advocates and lawmakers have made disability competency required by law, but to date, and despite “breaking the law,” some of the largest health care delivery methods and facilities do not offer true disability competent care. Although realistically, who can blame them? There is no state or federal body that officially assesses and enforces them to demonstrate their disability competency. So, as a health care community, we will continue to reinforce to our health care professionals that skirting the law is okay because there is no enforcement, which comes at the disparity of those with disabilities.

How can we make change happen?

The creation of the “Disability-Competence Curriculum for Healthcare Providers” course is just one component aimed at reducing health disparities for individuals with disabilities. However true change needs to start with systematic change—to ensure that physicians are meeting expectations and, more important, patients are receiving the health care they are entitled to, there REFERENCES needs to be: 1. Gloria L. Krahn, Deborah Klein Walker, and • Improved guidance on what is Rosaly Correa-De-Araujo, 2015. Persons With determined as disability competent Disabilities as an Unrecognized Health Discare outside what is currently in law. Health care providers should know parity Population,American Journal of Public Health 105, S198_S206.

exactly what it is. • Increased enforcement on guidance and penalized when not in compliance. Just like compliance in other areas, when audited, they will know exactly what is being evaluated. With continued failure to comply, there is no record and no penalizations. • Increased reimbursement for service to LTSS. In a recent New York Times article, physicians expressed what limited time they have with patients. And providers in our own community shared that the complexity and paperwork that accompanies this population is not billable. With the system set up with these barriers for the providers, it only has one place to trickle down… patients with disabilities who need healthcare.

The Chanda Center for health will be advocating locally with potential legislation to make changes in their backyard, but of course this issue is far more expansive and those involved want to ensure that this is being addressed on the federal level. With conversations with the Office of Civil Rights Diversity and Inclusion at HRSA, and the U.S. Justice Department, there is hope for change.

Let’s stop this from happening, together. After all, there is no one individual that is immune to disability. Regardless of our age, color of our skin or sexual orientation, we all will experience disability at some level, whether it be temporary and severe, it will be something that you personally

experience in some capacity. That time will come, so advocate for your own health care now. If you are a provider that doesn’t want to wait for these system changes, reach out so that we can help you. If you’re a lobbyist on the federal level and want to help make this right, please reach out! If you’re an employer of any national advocate organization or government entity working on this issue, please reach out! Regardless of our age, color of our skin or sexual orientation, we all will experience disability at some level, “ Barrie Cohen founded BCPR on three principles: creativity, customization, and collaboration. After years of working for agencies in Philadelwhether it be temporary and severe, phia, Owner and CEO Barrie Cohen saw the it will be something that you person- overwhelming need for ally experience in some capacity. a more attentive public relations firm dedicated to supporting and strengthening a client’s business goals. Unlike larger firms, Barrie has the ability to work one-on-one with clients to not only provide unprecedented, personalized services but to create a comfortable and trusting working relationship. Always keeping the clients’ best interest in mind, Barrie utilizes her long-standing media relationships, innovative marketing strategies, and professional writing skills to successfully promote and position clients in a variety of industries across the country—and internationally. Her passion for positive publicity and storytelling has created countless opportunities for her clients.

Impact of the Dobbs Decision on Prenatal Disability Education and Support

By Stephanie Meredith, MA, Kara Ayers, PhD, Marsha Michie, PhD, Mark W. Leach, JD, MA, and Robert D. Dinerstein, JD

Many high-profile articles over the past 15 years, including Sarah Zhang’s recent Atlantic article, “The Last Children of Down Syndrome” in 2020, have considered the ethical implications of prenatal testing leading to the potential eradication of people with prenatally-diagnosed conditions. The theory was that if the information were presented in a biased manner regarding a historically marginalized population, the outcome could lead to de facto eugenics. Some of the more nuanced arguments weaving together reproductive choice and disability rights asserted the following: • Patients undergoing prenatal testing should have the opportunity to make reproductive decisions that reflect their own values as was guaranteed under the law during the era of Roe v. Wade and Planned

Parenthood v. Casey. • Those decisions should be based on accurate, up-to-date information about those conditions since many preconceptions about disability are broadly based on stigma and outdated stereotypes. • Medical providers should present the information free from bias.

So, how could this new era under the Dobbs v. Jackson Women’s Health Organization decision, with its accompanying patchwork of reproductive laws across a divided nation, affect these complex ethical arguments and the patients who receive the results of the prenatal tests? Five experts from different disciplines—legal, bioethics, patient education, and disability studies—share their thoughts moving forward.

Patient Education: We have known for years that many patients say their informational and support needs are not adequately met after receiving prenatal screening results suggesting a possible diagnosis.1 Further, many of these patients experience lasting trauma based on how the information is presented—particularly when they perceive bias against people with disabilities.2 One concern following the Dobbs decision is that in states that limit reproductive rights, lawmakers will need to urgently prioritize funding the provision of support and informaThe Dobbs decision weakened constitutional protections for people with disabilities to lead self-determined lives.4 tion right away for families who learn of a possible prenatal diagnosis to make sure the baby and family have optimal health and life outcomes. Importantly, the need for lifespan support will be even more critical for families who may be in financial or situational distress and who no longer have the option of terminating the pregnancy. Another concern is that clinicians in states that protect reproductive rights will over-emphasize the option of termination in an effort to convey the availability of options, but patients have also said that repeated offers of termination traumatize them and convey bias when they are planning to continue the pregnancy.2 Moreover, in states where the constituency is divided, lawmakers and the media are likely to perpetuate stereotypes about disabilities, ranging between evangelizing and catastrophizing disability to score political points.3 - Stephanie Meredith, MA, Director of the National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute Disability Studies: The United States of America has a dark past and present in oppressing the reproductive rights and freedoms of people with disabilities. According to a recent report from the National Women’s Law Center, 31 states and the District of

“Columbia have laws that allow forced sterilization. Like abortion restrictions, these laws assume that other people, often parents, guardians, and government officials, are better equipped to make decisions for disabled people than the people with disabilities themselves. The Dobbs decision weakened constitutional protections for people with disabilities to lead self-determined lives.4 The decision has resulted in further devaluing of disabled lives as seen in a Declaration of Emergency by Louisiana Department of Health, which describes infants born with certain disabilities as “medically futile.” While medical futility is considered an absolute, the literature includes documented cases of survival for most of the conditions listed in the emergency rule.5 The termination of pregnancies where a fetus is thought to have these disabilities is not considered an abortion in Louisiana and its emergency rule is described as “necessary to prevent imminent peril to public health, safety, and welfare.” Parents who learn their child has or may have one of the diagnoses

on Louisiana’s list will face an even more challenging path to receive accurate information or pursue treatment. Rather than rectifying our history of eugenics, the Dobbs decision and other restrictions on reproductive freedoms only further marginalize people with disabilities and their right to bodily autonomy. - Kara Ayers, PhD, Associate Professor and Associate Director, University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), Cincinnati Children’s Hospital Medical Center, Division of Developmental and Behavioral Pediatrics

Bioethics: One particular challenge of prenatal disability education and support is its short time frame to make major decisions about pregnancy continuation, interventions (as available), and health care. This time crunch leaves little space for taking in the results of prenatal testing and learning about genetic conditions. Making informed decisions about health and health care means getting clarity about the facts of the situation and your values about the options, and then reconciling these.6 Many pregnant people know very little about disability, and many health care providers harbor the kinds of implicit bias against disability that are common throughout society.7 This situation makes it crucial to have opportunities for human connection and thoughtful deliberation, such as meeting other families in similar situations and considering what life might be like. But people who feel pushed to make a decision quickly are less likely to have these opportunities. In addition, no amount of information and resources can support informed choices if pregnancy is not a choice at all. Research shows that for people who seek abortion care, being forced to continue the pregnancy results in worse pregnancy and life outcomes for them and their children.8 Finally, one very hopeful development of the past

few decades has been a steady increase in treatments that can take place during pregnancy to improve outcomes for babies and children. Pregnancy interventions like these, when they are available for certain conditions, are one of the strongest possible benefits of a prenatal diagnosis. But an increase in abortion limits and bans will have a chilling effect on research and experimental treatments, ultimately harming families by limiting the access to these interventions in many states. - Marsha Michie, PhD, Associate Professor of Bioethics, Department of Bioethics at Case Western Reserve University School of Medicine

Bioethics: Prenatal genetic testing has been argued to be ethically obligatory out of respect for the patient’s autonomy. For a patient to exercise control over her health, testing provides medically relevant information. Leaping from this premise, the principle of justice is cited as requiring the availabil-

ity of testing for all, not just for those with means. The result is subsidization of testing by private and public insurers. Post-Dobbs, the provision of testing creates a “moral hazard”: providing information that cannot be acted upon, at least not without travel to another state.

Additionally, surveys of patients’ experiences with prenatal genetic testing overwhelmingly conclude it does not respect their autonomy for failing to provide proper counseling, understanding of the testing, and provision of equally-recommended relevant information about the tested-for condition and available supports for individuals with those conditions.9 Therefore, if the main justification has not been achieved despite decades of

Many pregnant people know very little about disability, and many health care providers harbor the kinds of implicit bias against disability that are common throughout society.7

practice, the justice argument should be to not subsidize prenatal genetic testing, since it does not empower the patient’s autonomy, and thereby avoid the moral hazard. In practice, the most justified course is if prenatal testing is subsidized, then so must the other recommended condition-specific information so as to provide the best chance of respecting the patient’s autonomy. - Mark W. Leach, JD, MA (Bioethics)

Legal: That Dobbs will result in fewer reproductive choices for pregnant people, including people with disabilities, is clear. Historically, some people with disabilities were forced to have abortions because of a belief that their child would have a disability or that, even if the child were born without a disability, the disabled parent would not be able to care for the child. As is true for people without disabilities, some people will want abortions, and some will not. However, for some pregnant people with disabilities, carrying a fetus to term may put their own health at risk.10 In states that adopt laws that do not provide an exception to an abortion ban to preserve the health of the mother, a full-term pregnancy can have dire consequences for them. Women with disabilities are much more likely to be the victims of violence, including sexual violence, than women without disabilities.11 If the disabled woman becomes pregnant because of rape, she may be forced to bear the child that is the result of that rape in states that do not provide for a rape exception to an abortion ban. In some rare cases, the severely disabled woman who has been impregnated may have little understanding of the gestational and birth process—and may be traumatized by having to experience changes in her body that she does not understand. - Robert D. Dinerstein, JD, Professor of Law and Director, Disability Rights Law Clinic, American University Washington College of Law (for identification purposes only)

To address these additional complications, possible solutions proposed by medical professionals, bioethicists, and disability advocates include the following: 1. Fully fund The Prenatally and Postnatally Diagnosed Awareness Act to ensure that patients get the support and information they need following a diagnosis. 2. Fully fund Medicaid waiting lists and disability services in their states to care for the families in need who will inevitably be having more children with disabilities. If states are going to require patients to continue a pregnancy, then they must also have the social safety nets in place to support families of children with disabilities to truly preserve the lives and welfare of those children. 3. Replace laws that allow forced sterilization of people with disabilities with policies that support bodily autonomy and are directly informed by the voices of people with disabilities. 4. Mandate the training of health professionals in all states to ensure that information about disabilities is presented without conscious or unconscious bias.12

REFERENCES

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