Best Practices for Health Care

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Health problems are prominent among them. 

Kinga Borondy at Gannett:

A bill pending before the Massachusetts Legislature would establish best-practices standards around treatment of patients on the autism spectrum or those with intellectual and developmental disabilities.

“Terrible things can happen to people with autism or those who are intellectually developmentally delayed while they are in medical settings,” said Maura Sullivan, executive director of The Arc of Massachusetts. “They have been restrained, kept in isolation, suffered medical trauma.”

The legislation, sponsored by Rep. Sean Garballey, D-Medford, and Sen. Jason Lewis, D-Winchester, would offer training to all patient-facing staff, from doctors and nurses to custodians and security officers, on recognizing and adjusting to the challenges presented when treating and interacting with intellectually divergent patients.

The Arc already offers the training to young medical professionals through its Operation House Call program, which was launched in 1991 and uses a network of volunteer families. The program has been integrated into the Tufts School of Medicine and the Simmons School of Health Science, and has expanded to Yale School of Nursing, UMass Chan Medical School and Harvard Medical School.

The bill would set standards for treatment in Massachusetts as well as establish a mandatory training program for all practitioners, with continuing education credits for completing the course.

COVID and Autism

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. 

Arun Karpur, Vijay Vasudevan, Andy Shih & Thomas Frazier, "Brief Report: Impact of COVID-19 in Individuals with Autism Spectrum Disorders: Analysis of a National Private Claims Insurance Database," Journal of Autism and Developmental Disorders (2021), online first. Abstract

The COVID-19 pandemic continues to have a detrimental impact on individuals with disabilities. Data from FAIR Health’s FH® NPIC (National Private Insurance Claims) database, one of the nation’s largest databases of private insurance claim records, were analyzed to understand the experiences of individuals with ASD in the COVID-19 pandemic. Multivariate logistic regression models revealed that individuals with ASD + ID were nine times more likely to be hospitalized following COVID-19 infection (OR = 9.3; 95% CI: 6.9–12.5) and were nearly six times more likely to have an elevated length of hospital stay (OR = 5.9; 95% CI: 3.5–10.1) compared to those without ASD + ID. These findings point to the need for prioritizing access to vaccines to prevent COVID-19 infection and morbidities. This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 in individuals with ASD and other comorbidities.

From the article:

This is the first study to illustrate a higher likelihood of hospitalization and elevated length of hospital stay from COVID-19 infections for individuals with ASD and other comorbidities. While a lower proportion of individuals with ASD acquired COVID-19 infection than other condition groups, they were significantly more likely to be hospitalized for COVID-19 and have a longer length of stay in the hospital. Contrastingly, individuals with other chronic conditions had a higher prevalence of COVID-19 infections (e.g., Heart Failure, Obesity, Diabetes) had lower adjusted odds of hospitalization and elevated length of hospital stay. Underlying demographic patterns likely drive a lower overall prevalence of COVID-19 in ASD. A closer examination of the demographic distribution indicates that more than 90% of individuals with ASD were in the younger age range (i.e., less than 30 years old). Nearly 70% belonged to the 0–18-year-old group. As a result, most individuals with ASD in the data are likely living with their families during the pandemic, limiting their exposure compared to individuals in congregate living environments. A substantial increase in morbidity and mortality in COVID-19 among individuals with disabilities, especially among individuals with intellectual and developmental disabilities, has been associated with their living situation in congregate care settings (Landes et al., 2020).

Once individuals with ASD acquire COVID-19 infection, the regression models indicate a higher likelihood of hospitalization and elevated length of hospital stay. While Cunningham et al. (2020) described a similar pattern of lower COVID-19 prevalence and higher morbidity among young individuals using electronic medical records data, the quantitative differences in the likelihood of hospitalization and duration of stay for individuals with ASD is concerning and requires attention (Cunningham et al., 2020). Individuals with ASD, in general, have higher medical needs resulting from cooccurring mental health and other conditions such as epilepsy, digestive disorders, etc. (Karpur et al., 2018; Shea et al., 2018). It is possible that the COVID-19 infection, irrespective of severity, precipitates behavior health challenges leading to hospitalization and longer duration of stay (Bal et al., 2021; Righi et al., 2017; White et al., 2021). Further, several immunological theories, including the more recent preposition of abnormal melatonin production among individuals with ASD, might contribute to the increased severity of COVID-19 infection (Brown et al., 2021).

The findings of increased morbidity in COVID-19 are relevant from the perspective of growing discussion on the prioritization of populations for COVID-19 vaccines. Only a handful of states have considered prioritizing individuals with intellectual disabilities (see: https://www.kff.org/policy-watch/the-next-phase-of-vaccine-distribution-high-risk-medical-conditions/), and this does not include all individuals with ASD. However, given the challenges in consistently implementing social distancing practices and PPEs among individuals with ASD, it would be helpful to include them as one of the high-risk populations for immunizations.

 

Lifetime Health Problems

In The Politics of Autism, I discuss health care issues for people with intellectual and developmental disabilities.

Lauren Bishop-Fitzpatrick and colleagues have an article at Autism Research titled "Using Machine Learning to Identify Patterns of Lifetime Health Problems in Decedents with Autism Spectrum Disorder."  The lay summary:

This study looked at patterns of lifetime health problems to find differences between people with autism who had died and community controls who had died. People with autism had higher rates of most health problems, including cardiovascular, urinary, respiratory, digestive, and motor problems, in their electronic health records. They also had lower rates of cancer. More research is needed to understand these potential health risks as a large number of individuals with autism enter adulthood and middle age.

From the article:

Although we were unable to explore causal factors in the current study, it may be that a combination of underlying biological vulnerability, coupled with life-style factors and difficulties interacting with the healthcare system, lead to differential diagnostic patterns indecedents with ASD compared to decedent communitycontrols. Our findings confirm well-established reportsof heightened epilepsy [Woolfenden et al., 2012] in individuals with ASD. In addition, the pattern of heightened cardiovascular problems identified by ouranalysis of comorbidities is consistent with a potential increased biological vulnerability related to broad cardiac parasympathetic hypofunction in ASD found inprevious literataure [Ming, Patel, Kang, Chokroverty, &Julu, 2016]. Previous studies have suggested heightened cardiovascular risk factors in ASD [Cashin et al., 2016], but this is the first study, to our knowledge, that identifies heightened rates of cardiovascular disease, including higher rates of coagulopathy, congestive heartfailure, and valvular disease, in individuals with ASD compared to controls.

Service Use Among Adolescents

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

At The Journal of Autism and Development Disorders, Lindsay Shea and colleagues have a brief report titled "Service Use and Associated Expenditures Among Adolescents with Autism Spectrum Disorder Transitioning to Adulthood."  From the article:

This study is among the first to show that Medicaid-enrolled adolescents with ASD  ransitioning into adulthood are relying upon the public health insurance system for psychiatric and medical outpatient services and medications, and expenditures for these services increase as they age. There is less evidence for optimal types or quantities of services for adolescents and adults with ASD than there is for children but the high rate of use of outpatient services compared to other services is understandable since outpatient behavioral interventions are the primary modality of care for ASD. The
drop in medical outpatient services among the ASD group from 2001 to 2005 warrants further study, as it is not echoed in the ID group. Medications utilized by individuals with
ASD are typically prescribed to address repetitive, aggressive, or hyperactive behavior. These symptoms may be more characteristic of ASD than ID or may grow more frequent
or severe in presentation during the transition to adulthood (Shattuck et al. 2007).

The increase in expenditures for inpatient and especially in long-term care services among the ASD group as they aged is particularly troubling. These results extend
findings from studies among children (Cidav et al. 2013). Inpatient episodes often represent crises for individuals with ASD, their families, and their communities. Other
research has found that children with caregivers with a lower  socioeconomic status and educational grade are at higher risk for inpatient episodes (Siegel and Gabriels 2014). Children with ASD also have more frequent and longer inpatient stays, increasing their cost (Kalb et al. 2012). These findings suggest patterns observed in childhood continue through adolescence and into early adulthood.

Abandonment at the ER

In The Politics of Autism, I discuss health care issues and state social services for people with intellectual and developmental disabilities.

Josh Kovner at The Hartford Courant reports on a Catch-22 in Connecticut law.  Some parents are going to emergency rooms to abandon children with autism and other developmental disabilities.  The Department of Developmental Services consider such children "safe" because they are receiving care in a hospital, so they do not qualify for emergency placement.  But the hospitals cannot safely discharge them or provide them with the services that they nee

The abandonments “break your heart — because as a mother, you’d cut off an arm to not have to do that, right?’’ said Leslie Simoes of West Hartford, a mother and co-director of Autism Services and Resource Center in Wallingford 

“Well, it shows how the system has fractured. We have seen more of these abandonments in the last few years, but I’m surprised there aren’t a lot more, because there easily could be. Families who have been denied services are pushing beyond the edge, to bankruptcy, divorce or even homelessness,” to continue to care for a son or daughter with developmental disabilities.

Consensus Against Graham-Cassidy

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

There is a remarkable consensus against the Graham-Cassidy health bill.  Groups and interests that usually disagree are united in opposition. From America's Health Insurance Plans:

The following statement was jointly released on September 23, 2017 by the American Medical Association, American Academy of Family Physicians, American Hospital Association, Federation of American Hospitals, America’s Health Insurance Plans, and the BlueCross BlueShield Association regarding the Graham-Cassidy-Heller-Johnson legislation.

We represent the nation’s doctors, hospitals, and health plans. Collectively, our organizations include hundreds of thousands individual physicians, thousands of hospitals, and hundreds of health plans that serve tens of millions of American patients, consumers, and employers every day across the United States.

While we sometimes disagree on important issues in health care, we are in total agreement that Americans deserve a stable healthcare market that provides access to high-quality care and affordable coverage for all. The Graham-Cassidy-Heller-Johnson bill does not move us closer to that goal. The Senate should reject it.

We agree that the bill will cause patients and consumers to lose important protections, as
well as undermine safeguards for those with pre-existing conditions. Without these
guaranteed protections, people with significant medical conditions can be charged much
higher premiums and some may not be able to buy coverage at all.

We agree that the bill will result in dramatic cuts to Medicaid and a funding cliff in the
future, fundamentally changing the way that states provide coverage for some of our most vulnerable citizens. This means that millions of patients will lose their coverage and go without much-needed care.

We agree that the individual insurance market will be drastically weakened, making
coverage more expensive and jeopardizing Americans’ choice of health plans. By not
providing all states with sufficient funds to support working families who need help buying coverage, millions will go without it.

We agree that the bill’s current implementation timelines are not workable. State and
industry leaders will need to completely transform their individual insurance markets and
Medicaid programs in little more than a year – an impossible task.

Health care is too important to get wrong. Let’s take the time to get it right. Let’s agree to
find real, bipartisan solutions that make health care work for every American.

At The Washington Post, Christopher Ingraham provides a partial list of groups against the bill:

• Adult Congenital Heart Association
• ALS Association
• Alzheimer's Association
• Alzheimer's Impact Movement
• American Cancer Society
• American College of Emergency Physicians
• American College of Physicians
• American College of Preventive Medicine
• American Diabetes Association
• American Academy of Family Physicians
• American Academy of Pediatrics
• American Cancer Society
• American College of Emergency Physicians
• American College of Physicians
• American College of Preventive Medicine
• American Congress of Obstetricians and Gynecologists
• American Diabetes Association
• America's Essential Hospitals
• American Foundation for the Blind
• American Health Care Association
• America's Health Insurance Plans
• American Heart Association
• American Hospital Association
• American Liver Foundation
• American Lung Association
• American Medical Association
• American Nurses Association
• American Osteopathic Association
• American Occupational Therapy Association
• American Psychiatric Association
• American Psychological Association
• American Public Health Association
• American Society for Addiction Medicine
• American Speech-Language-Hearing Association
• Amputee Coalition
• The Arc
• Arthritis Foundation
• Association for Community Affiliated Plans
• 
  
• Association of American Medical Colleges
• Association of University Centers on Disabilities
• Asthma and Allergy Foundation of America
• Autism Society
• Autism Speaks
• Autistic Self Advocacy Network
• Big Cities Health Coalition
• Blue Cross Blue Shield Association
• Catholic Health Association
• Children's Hospital Association
• Center for Medicare Advocacy
• Coalition to Stop Opioid Overdose
• Consortium for Citizens with Disabilities
• COPD Foundation
• Cystic Fibrosis Foundation
• Family Voices
• Federation of American Hospitals
• HIV Medicine Association
• Infectious Diseases Society of America
• JDRF
• Lutheran Services in America
• Kaiser Permanente
• March of Dimes
• Medicare Rights Center
• National Association of Medicaid Directors
• National Association of Pediatric Nurse Practitioners
• National Association of School Nurses
• National Coalition for Cancer Survivorship
• National Down Syndrome Congress
• National Health Council
• National Institute for Reproductive Health
• National Kidney Foundation
• National Multiple Sclerosis Society
• National Organization for Rare Diseases
• Planned Parenthood
• Public Health Institute
• Robert Wood Johnson Foundation
• Trust for America's Health
• WomenHeart

Autistic People in Emergency Rooms and Acute-Care Hospitals

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Christina Jewett of Kaiser Health News reports at The Washington Post: (h/t Judith Ursitti)

Teenagers and young adults with severe autism are spending weeks or even months in emergency rooms and acute-care hospitals because of a lack of community treatment programs able to deal with their outbursts, according to interviews with parents, advocates and physicians from Maine to California as well as federal and state data.

These young people — who may shout for hours, bang their heads on walls or lash out violently at home — are taken to the hospital after community social services and programs fall short and families call 911 for help. Once there, they sometimes are sedated or restrained for long periods as they wait for beds in specialized facilities or return home once families recover from the crisis or find additional support.

While the data on extended hospital stays are limited, national numbers on people with an autism diagnosis who were seen in hospital ERs nearly doubled over five years to 159,517 in 2014, according to the latest figures from the federal Agency for Healthcare Research and Quality. The total admitted for a behavioral or medical issues also nearly doubled, to 26,811 in 2014.

...
Private insurance data underscore the concerns. In a study published in February in the Journal of Autism and Developmental Disorders, researchers from Pennsylvania State University found that young people ages 12 to 21 with autism are four times likelier to go to the emergency room than peers without autism. They also are 3½ times more likely to be admitted to a hospital floor — at which point they stay in the hospital nearly 30 percent longer.

The analysis, based on a sample of 87,000 insurance claims, also showed that older adolescents with autism are in the ER more than their younger counterparts. The percentage of their visits for a mental-health crisis almost doubled from 2005 to 2013.

Autism and Emergency Rooms

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

Shaun Heasley writes at Disability Scoop:

Adults with autism are increasingly showing up in emergency rooms, with a new study finding that such visits more than doubled over a five-year period.

In an analysis of emergency room visits across the country, researchers found that individuals with autism ages 22 to 64 accounted for 2,549 per 100,000 admissions in 2006. That figure skyrocketed to 6,087 per 100,000 admissions by 2011.

The findings, published in the April issue of the Journal of Autism and Developmental Disorders, are based on data collected through the federal government’s Nationwide Emergency Department Sample.

RRFrom the article,  "Emergency Department Use Among Adults with Autism Spectrum Disorders (ASD)" by  Rini Vohra, Suresh Madhavan, and Usha Sambamoorthi:

There were two critical findings in the descriptive analyses: (1) Majority (80 %) of adults with ASD were covered by a public health insurance as compared to one-quarter (25 %) adults without ASD. This finding reflects that public payers still account for covering ED and inpatient services among majority of adults with mental health issues such as ASD, consistent with previous studies (Ruble et al. 2005; Semansky et al. 2011); and (2) Another intriguing observation in the study was the difference in rates of inpatient admissions after an ED use among adults with and without ASD. Around one-third of ED visits among adults with ASD led to an inpatient admission as compared to onetenth of adults without ASD. This indicates that higher ED use among adults with ASD may also lead to greater hospitalization rates which is associated with high hospitalization costs (Lokhandwala et al. 2012).

Lokhandwala, T., Khanna, R., & West-Strum, D. (2012). Hospitalization burden among individuals with autism. Journal of Autism and Developmental Disorders, 42(1), 95–104.
Ruble, L. A., Heflinger, C. A., Renfrew, J. W., & Saunders, R. C. (2005). Access and service use by children with autism spectrum J Autism Dev Disord (2016) 46:1441–1454 1453
Semansky, R. M., Xie, M., & Mandell, D. S. (2011). Medicaid’s increasing role in treating youths with autism spectrum disorders. Psychiatric Services (Washington, D.C.), 62(6), 588.

Reforms in Connecticut

Autism Speaks reports:

Connecticut Gov. Daniel Malloy has announced a comprensive overhaul of the state's emergency and long term behavioral health care system, including four steps specific to upgrading treatment for children with autism. The reforms were required by legislation enacted after the 2012 mass shooting tragedy in Newtown.

“No child in mental health crisis should have to wait days to get access to the treatment they need," Malloy said. "That is why I am announcing a series of strategies that...can be implemented immediately."

The Connecticut plan calls for short-term improvements to emergency care services which, in line with national trends, have experienced increasing admissions of youths with acute behavioral health issues and delays in discharges. Malloy's plan calls for immediate increases in emergency care capacity with specific accommodations for the autism community.

The longer term changes were developed by the state Department of Children and Families (DCF) as required under Public Act 13-178, legislation enacted following the Newtown tragedy.

In a review of emergency care services required by children in HUSKY, the state's Medicaid program, nearly half the children with autism enrolled in the program needed to visit an emergency room over an 18-month period. Nearly half of those visits were because of behavioral, rather than medical, reasons, versus just 7 percent for the overall HUSKY population.
...

The Governor's immediate action plan is HERE.

The DCF longterm plan is HERE

Emergency Department Use by ASD People

At The Journal of Autism and Developmental Disorders, Dorothea Iannuzzi and colleague have an article titled "Brief Report: Emergency Department Utilization by Individuals with Autism."

The abstract:

To identify medical problems most commonly presenting to emergency departments among individuals with autism as compared to non-autistic persons across age groups. Data was obtained from the 2010 National Emergency Department database and was analyzed by age categories: 3–5, 6–11, 12–15, 16–18 and 19 years and older. Epilepsy emerged as the leading presenting diagnosis among those with Autism spectrum disorder (ASD), ages 16–19 years and 19 over. Psychiatric conditions were primary among ASD individuals aged 12–15 years, accounting for more than 11 % of all visits. In this sample, age-related differences were noted in medical diagnoses among autistic individuals as compared to non-autistic persons

From the article:

The findings of this preliminary study highlight several trends in ED utilization by individuals with ASD by age group. One important finding was that ED use by adults on the autism spectrum is considerably higher than ED utilization by children with a diagnosis of ASD. In addition, a high rate of psychiatric diagnoses and seizure disorders amongst individuals with autism was found as compared to those without autism. This finding supports the previous report of Kalb et al. (2012), and supports the need for further exploration into the psychiatric comorbidities that are most commonly diagnosed in individuals with autism.
...

An issue that merits further evaluation is how many of the individuals presenting with self-injurious or aggressive behavior were evaluated for underlying medical conditions. In many individuals with autism, maladaptive behavior can be an expression of physical pain or discomfort. Making the assumption that maladaptive behavior is purely psychiatric or ‘‘behavioral’’ in nature can result in inappropriate treatment intervention, which could then compromise the quality of care received by individuals with autism during an ED visit. Assumptions and presumptions made by ED clinicians that aberrant behavior is simply due to the autism can result in medical errors and or exacerbation of the presenting disorders. A complete medical work up is essential for individuals in order to rule out an underlying medical condition that could be the cause of the self- injury or aggression. [emphasis added]

Kalb, L. G., Stuart, E., Freedman, B., Zablotsky, B., & Vasa, R. (2012). Psychiatric -related emergency department visits among children with an autism spectrum disorder. Pediatric Emergency Care, 28(12), 1269–1275.

Autistic Adults: Health Care and Employment

Dr. Christopher Hanks writes at LiveScience:

Once patients move away from their pediatricians, they struggle. These patients often miss out on important check-ups, immunizations and cancer screenings. It's also important to note that without specialized care, these individuals can have a hard time transitioning into an intimidating world.

Many teens with ASD struggle to obtain meaningful vocational or educational opportunities after they've finished high school, which provides a structured environment and allows for social interactions and continual development. Unless these young adults are employed or enrolled in an educational program, most spend too much time alone or isolated, with little or no social interaction. When this happens, they often regress and lose some of the skills they previously developed.

These patients deserve physicians who understand their needs and will work with them to overcome the challenges associated with becoming an adult who has an illness that will impact their entire life.

That's what we're striving to do at The Ohio State University Wexner Medical Center, where we recently opened one of the only clinics in the country to care for adults with ASD. Here at the Center for Autism Services and Transition (CAST), we provide care coordination, along with primary and specialty care services for patients. We offer access to diagnostic testing, counseling services, therapy, dental care, nutrition and other resources. Our goal is to give new hope to these patients, and to connect them with medical experts who truly understand their needs so they can continue to grow and succeed.

A release from the Labor Department:

The U.S. Department of Labor has announced the establishment of a National Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities. The purpose of the committee is to study and provide recommendations to the secretary of labor on ways to increase employment opportunities for individuals with disabilities, the use of the certificate program carried out under Section 14(c) of the Fair Labor Standards Act of 1938 (29 U.S.C. 214(c)) and ways to improve oversight of the use of such certificates.

...
The creation of the committee is mandated by the recent passage of the Workforce Innovation and Opportunity Act, signed July 22. WIOA strengthens the public workforce system and the partnerships that sustain it by unifying and streamlining services to better serve job seekers. It will improve accountability and transparency within the system. WIOA also builds closer ties among key workforce partners: business leaders, workforce boards, labor unions, community colleges, nonprofits, and state and local officials. And it addresses the needs of veterans, the long-term unemployed, individuals with disabilities and of other populations facing unique economic challenges.

Hospitalization

In the Journal of Autism and Developmental Disorders, Aaron Nayfack and colleagues have an article titled "Hospitalizations of Children with Autism Increased from 1999 to 2009."

The abstract:

We performed a retrospective analysis of hospital discharges for children with autism, in comparison to children with cerebral palsy, Down syndrome, mental retardation/intellectual disability, and the general population. Hospitalizations for autism increased nearly threefold over 10 years, especially at the oldest ages, while hospitalizations for the other groups did not change. Leading discharge diagnoses for each age group in children with autism included mental health and nervous system disorders. Older age, Caucasian ethnicity, and living in a region with a high number of pediatric beds predicted hospitalizations associated with mental health diagnoses. These findings underscore the need for comprehensive clinical services that address the complex needs of children with autism to prevent costly hospitalizations.

From the discussion section:

This current study reported factors that placed an individual with autism at increased risk for hospitalization, but does not explain why these hospitalizations increased during the study period. One possibility is the rising prevalence of autism has been met by a decline in financial support for outpatient and community resources. In this scenario, overwhelmed parents, schools, and community providers of mental health resources may have been unable to meet the needs of these patients and this failure to treat adequately in the outpatient sector may have led to a direct increase in hospitalizations. A recent study by Mandell et al. (2012) adds evidence to support this argument. They found that the enhanced provision of respite care to caregivers
of children with autism led directly to a decrease in hospitalization.

 Mandell, D. S., Xie, M., Morales, K. H., Lawler, L., McCarthy, M., & Marcus, S. C. (2012). The interplay of outpatient services and psychiatric hospitalization among medicaid-enrolled children with autism spectrum disorders. Archives of Pediatric and Adolscent Medicine, 166(1), 68–73.

ERs as Timeout Rooms

A release from Legal Services NYC:

Legal Services NYC (LSNYC) and Cuti Hecker Wang LLP have filed a lawsuit on behalf of six New York City children who have all been repeatedly removed or threatened with removal from school by Emergency Medical Services (EMS) even though they were not in need of emergency medical care. The suit was filed against the City of New York and the Department of Education.

The lawsuit, filed in federal court, alleges that school personnel resort to calling EMS in response to tantrums and other behavior problems because the school system lacks procedures and its staff lacks training for appropriately assisting and calming children in those circumstances. In numerous instances, school and EMS personnel insisted on transporting the children, who were calm by the time EMS arrived, and most of whom are between five and seven years old, to hospitals against the express wishes of their families. As a result, these students have not only been removed from school against their wills, they have also been traumatized by unnecessary trips to emergency rooms and deprived of valuable instructional time.

LSNYC advocates have seen a steady increase recently in the number of children removed from their classrooms and taken by ambulance to ERs for emotional disturbances that do not involve the threat of harm to themselves or others. In each school year from 2009-2010 through 2011-2012, schools called EMS regarding over 3,000 students due to alleged disruptive behaviors. Over those three school years, the number of EMS calls due to alleged disruptive behaviors increased each year. By 2011-2012, there were over 3,600 calls from schools to EMS for students with alleged disruptive behaviors. The majority of students removed by EMS are students with disabilities.

The Wall Street Journal reports:

More than 22% of the 15,130 calls for ambulances placed by schools in the 2011-12 school year were related to disciplinary infractions, according to Legal Services NYC, which sued the Department of Education and Fire Department of New York for the data.

...
Nelson Mar, an attorney for Legal Services NYC who is representing the parents, said fire department protocols say that children can be transported by EMS against a parent's wishes only when the child's life is at stake, or if it is clear that even a small delay will jeopardize the child's health.

"In some ways the schools are treating the hospital emergency rooms as timeout rooms," he said.
...

One mother suing the city, whose son has autism, said the frequent calls to pick up her son forced her to stay close to school to try to prevent the frequent hospital trips.

"My life was basically just dropping him off, staying in the area, not doing anything else, walking to the library," said the mother, who asked not to be named.

Two Cases of Restraint

Many posts have discussed the issue of restraint in schools and other settings.

WFLD in Chicago reports on a case of restraint in a hospital: Chicago News and Weather | FOX 32 News

KRIV in Houston reports on a case in a school: Houston weather, traffic, news | FOX 26 | MyFoxHouston

Autism in the ER

Previous posts have discussed the health care problems of children, teens, and adults on the spectrum, and some have looked specifically at emergency care.  A release from the Kennedy Krieger Institute:

In the first study to compare mental health-related emergency department (ED) visits between children with and without autism spectrum disorders (ASD), researchers found that ED visits are nine times more likely to be for psychiatric reasons if a child has an ASD diagnosis. Published in the journal Pediatric Emergency Care (Epub ahead of print), the study found externalizing symptoms, such as severe behaviors tied to aggression, were the leading cause of ED visits among children with ASD. Importantly, the likelihood of a psychiatric ED visit was higher if a child carried private health insurance rather than medical assistance.

“This finding of higher rates of emergency room visits among children with autism demonstrates that many children with autism aren’t receiving sufficient outpatient mental health care to prevent and manage the type of crises that are driving these families to seek urgent help,” said Dr. Roma Vasa, senior study author and a child psychiatrist in Kennedy Krieger Institute’s Center for Autism & Related Disorders. “These findings should highlight the urgent need for better comprehensive outpatient mental health care and insurance coverage for children with autism, along with greater education and training for emergency medical staff.”

Using the 2008 National Emergency Department Sample, the largest all-payer ED database in the US, researchers examined data from a total of 3,974,332 ED visits for patients ages 3 to 17, of which 13,191 visits were from children with ASD. Mental health-related ED visits were based on International Classification of Disease (ICD) billing diagnoses that included mood, anxiety and psychotic disorders, suicide and self-injury, and externalizing behaviors such as aggression.

Researchers also studied the influence of different types of insurance coverage on the likelihood of an ED visit for psychiatric reasons. They found that children with ASD whose families had private medical insurance were 58 percent more likely to visit the ED for mental health-related reasons than those whose health insurance was provided through state medical assistance programs.

“We think this is because private insurance plans often exclude autism from behavioral health coverage, have few in-network providers or place restrictive limits on the amount of mental health expenses that they will reimburse,” said Luther Kalb, MHS, first study author and a research scientist in Kennedy Krieger Institute’s Center for Autism & Related Disorders.

With 1 in 88 children in the U.S. diagnosed with ASD, the use of the ED to treat psychiatric behaviors is likely to increase unless changes occur. Dr. Vasa suggests that this trend is especially troublesome because the ED is not an optimal setting for children with ASD since chaotic environments can exacerbate autism-related or comorbid psychiatric symptoms.

“Children with autism, especially those with co-occurring psychotic disorders or severe behaviors, need to have an emergency crisis plan in place,” said Kalb. “Everyone involved in the life of a child with autism, from parents to medical professionals to school educators, needs to have routine discussions about what to do in the case of an escalating situation.”

This study also suggests that emergency departments should consider adopting new measures to accommodate children with ASD. This includes greater education and training for ED professionals about how to properly assess and interact with children on the autism spectrum. Additionally, researchers suggest that the large numbers of children with autism accessing the ED may necessitate a separate area for children with ASD that is less chaotic and contains less stimulation than found in the otherwise busiest part of any hospital.

Further research on adults with ASD using the ED for psychiatric reasons and general trends associated with mental health care is needed. With more information, medical professionals and insurance providers can have a greater understanding of the gaps in care and work to improve services.

Financial support for this study was provided by ROAR for Autism, an annual fundraising event held by the Center for Autism & Related Disorders at Kennedy Krieger Institute.

ER

A previous post told the story of one ASD person's experience in the emergency room. The Pittsburgh Post-Gazette reports:

"Educational initiatives that make general physicians aware of the complexities of diagnosis and management of patients with an ASD are needed," the doctors write in Post Graduate Medical Journal. "The rising prevalence of patients with an ASD makes it imperative that the general healthcare community becomes aware of the multidimensional nature of the ASD spectrum of illness." The article, based on a survey of existing literature on how general physicians may handle patients with autism, provides common-sense tips on their care. Most important, said lead author Arvind Venkat of Allegheny General, is "to listen to the caregiver and listen to the patient to the extent possible. They're very unique in how they interact. To take a knee-jerk approach and say this is how [doctors] react to a patient ... this is not the way to go. You really need to take time to talk to the caregiver to speak with [him about] how can we treat the patient in a way that's productive and not cause the conflict and stresses that we talked about."

ASD in the ER

Previous posts have discussed interaction between first responders such as police officers and firefighters. ER doctors and nurses face challenges, too. At Autism After 16, Michele Langlo writes of taking her adult son to the emergency room:

While the staff on the floor had been informed that Cody was autistic, they really were not sure what an overnight stay would entail for him or them. We explained to them that either Bill or I would need to be there with him round the clock for communication purposes.

At first, they were asking Cody questions in the same way they would ask any neurotypical person. They quickly learned that got them nowhere and they needed help.

But there was the HIPPA law to deal with as well. Something hospitals take this very seriously. Cody is legally an adult, so how was this going to work?

Bill and I both carry photocopies of our Legal Guardianship document from the court with us at all times. Bill pulled his out of his wallet and handed it to the nurse. I don’t think I’ve ever seen anyone quite as relieved as she was at that moment. Now we could begin to make some headway toward my son’s care.
...
Now I think about what kind of problems we could have faced had we not been prepared. What would have happened if we had not had that document in our physical possession at that moment when questions of legalities surfaced? Would the doctors and nurses have been legally bound to go strictly on what procedures Cody gave permission for? What if he said no? Would they have given up when they could not get legitimate answers to their questions? I shudder to imagine the horror we could have faced, especially if Cody had not responded to treatment quickly.

Autism Units

Michelle Diament writes at Disability Scoop:

More psychiatric hospitals are working to meet the needs of a burgeoning population of kids with autism and other developmental disabilities, a new study finds, but despite significant growth, services remain limited.

Researchers found just nine hospital units across the country that focus specifically on the needs of those with autism and other developmental disorders. That’s more than twice the number that existed 10 years ago.

Nonetheless, the specialized programs are far from meeting the national need, accounting for just 137 beds at psychiatric hospitals. Most of the facilities are concentrated in the Northeast and none are located west of Denver, according to the study published in the Journal of Autism and Developmental Disorders late last month.