Institutionalization During and After Disasters

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.

The National Council on Disability has a new report: Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters.

• Full Report (PDF)
• Full Report (DOCX)

SCOPE: This report examines occurrences of institutionalization of people with disabilities, as well as threats of institutionalization that were thwarted, in 2017 and 2018, including during Hurricanes Harvey, Irma, Maria, Florence, and Michael, and the California wildfires. This report:

• Examines how, when, and why people with disabilities were institutionalized during and after recent disasters.
• Examines the systemic issues that continue to cause institutionalization of persons with disabilities.
• Discusses the grave short- and-long-term physical, mental, and financial consequences that institutionalization wreaks.
• Provides recommendations and promising practices that would enable federal agencies to eliminate institutionalization of persons with disabilities during future disasters.

SUMMARY: NCD examined available data from several major storms and disasters and found that people with disabilities are frequently institutionalized during and after disasters due to conflicting federal guidance; a lack of equal access to emergency and disaster-related programs and services; and a lack of compliance with federal law.

The report, which focuses on the reasons people with disabilities experience involuntary institutionalization as a result of disasters, found that the Federal Government offers conflicting guidance on the topic.

The report also found that recipients of federal funds do not have training for how to comply with federal requirements to provide equal access to emergency and disaster-related programs and services when using federal dollars, nor do they have the cultural competence to interact with people with disabilties and often adhere to stereotypes and myths about disability that results in institutional placement. As a result of unnecessary institutionalizations during and after disasters, people with disabilities often go unaccounted for, families are separated from loved ones, working individuals with disabilities often become unemployed, and students with disabilities are often excluded from returning to school with their peers. The report concludes with recommendations for federal policymakers.

From the report:

Anecdotal evidence shows that people with mobility disabilities, autism, intellectual disabilities, actual or perceived psychiatric disabilities, dementia, brain injury, and COPD and respiratory disabilities have been unnecessarily institutionalized during disasters in a variety of facilities.

...

 One senior executive at a major oil company in Texas who is the parent of a child with autism attributed her inability to resume work after Hurricane Harvey to the lack of child care and transportation from their temporary housing location to her child’s school, which was now several hours away. The relocation of the family’s in-home support providers resulted in the loss of that essential service. The school district offered
residential care so the mother could resume employment, an illustration of multilayered
economic ramifications.

 

The Vaccine Schedule

The Institute of Medicine reports on the vaccine schedule:

Upon reviewing stakeholder concerns and scientific literature regarding the entire childhood immunization schedule, the IOM committee finds no evidence that the schedule is unsafe. The committee’s review did not reveal an evidence base suggesting that the U.S. childhood immunization schedule is linked to autoimmune diseases, asthma, hypersensitivity, seizures, child developmental disorders, learning or developmental disorders, or attention deficit or disruptive disorders.

Existing mechanisms to detect safety signals — including three major surveillance systems of FDA-approved products maintained by the CDC and a supplemental vaccine safety monitoring initiative by the FDA—provide further confidence that the current childhood immunization schedule is safe.

Despite the reassuring available evidence, the committee calls for continued study of the immunization schedule using existing data systems.

Answering research questions of the most importance to stakeholders could be done through a variety of methods. The committee does not endorse conducting a new randomized controlled clinical trial that would compare the health outcomes of unvaccinated children with their fully immunized peers. Although this is the strongest study design type, ethical concerns prohibit this study, as unvaccinated individuals and communities intentionally would be left vulnerable to morbidity and mortality. While stakeholder concerns should be one, but not the only, element that drives continued searches for scientific evidence, the committee writes that these concerns alone, absent epidemiological or biological plausibility of potential safety problems, do not warrant further study.

A new observational study, a complex undertaking that also would require a considerable investment, would be less likely than a randomized controlled clinical trial to conclusively reveal differences in health outcomes between children who are fully immunized and unimmunized children. Fewer than 1 percent of Americans refuse all immunizations. Enrolling sufficient numbers of unvaccinated children and matching them with vaccinated children of the same age, gender, ethnicity, and geographic location — a necessary step to rule out chance findings — would be prohibitively difficult and time-consuming.

Autism and the Healthcare Law

As noted earlier, the 2010 healthcare law may have a direct effect on state insurance mandates. At the Autism Speaks blog, Stuart Spielman writes:

Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on the constitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.

Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.

As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.

...

With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:

• 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
• 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
• 38.6% of families who have a child with autism have financial problems (16.7%)
• 57.2% of families who have a child with autism cut back or stop working (21.7%)

As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.

Institute of Medicine on Vaccines

From the Institute of Medicine:

FEW HEALTH PROBLEMS ARE CAUSED BY VACCINES, IOM REPORT FINDS

WASHINGTON — An analysis of more than 1,000 research articles concluded that few health problems are caused by or clearly associated with vaccines. A committee of experts convened by the Institute of Medicine to review the scientific literature on possible adverse effects of vaccines found convincing evidence of 14 health outcomes -- including seizures, inflammation of the brain, and fainting -- that can be caused by certain vaccines, although these outcomes occur rarely. It also found indicative though less clear data on associations between specific vaccines and four other effects, such as allergic reactions and temporary joint pain. In addition, the evidence shows there are no links between immunization and some serious conditions that have raised concerns, including Type 1 diabetes and autism. The data were inadequate to reach conclusions about other suggested adverse effects. [emphasis added]

The review will help the U.S. Department of Health and Human Services (HHS) administer the Vaccine Injury Compensation Program (VICP). VICP is committed to using science-based evidence to inform its decisions about vaccine-related adverse effects, and HHS turned to IOM to provide a comprehensive review of study results on eight vaccines covered by the program. The report's findings will be useful to all stakeholders involved in vaccine compensation decisions, including VICP staff, people filing claims, special masters that rule on vaccine cases, and others.

Convincing evidence shows that the measles-mumps-rubella (MMR) vaccine can lead to fever-triggered seizures in some individuals, although these effects are almost always without long-term consequences, the report says. The MMR vaccine also can produce a rare form of brain inflammation in some people with severe immune system deficiencies. In a minority of patients, the varicella vaccine against chickenpox can induce brain swelling, pneumonia, hepatitis, meningitis, shingles, and chickenpox in immunocompromised patients as well as some who apparently have competent immune function, the committee found. The majority of these problems have occurred in individuals with immunodeficiencies, which increase individuals' susceptibility to the live viruses used in MMR and varicella. Six vaccines -- MMR, varicella, influenza, hepatitis B, meningococcal, and the tetanus-containing vaccines -- can trigger anaphylaxis, an allergic reaction that appears shortly after injection. And, in general, the injection of vaccines can trigger fainting and inflammation of the shoulder, the committee noted.

The evidence suggests that certain vaccines can lead to four other adverse effects, although the data on these links are not as convincing, the report says. The MMR vaccine appears to trigger short-term joint pain in some women and children. Some people can experience anaphylaxis after receiving the HPV vaccine. And certain influenza vaccines used abroad have resulted in a mild, temporary oculo-respiratory syndrome characterized by conjunctivitis, facial swelling, and mild respiratory symptoms.

The committee's review also concluded that certain vaccines are not linked to four specific conditions. The MMR vaccine and diphtheria-tetanus-acellular pertussis (DTaP) do not cause Type 1 diabetes, and the MMR vaccine does not cause autism, according to the results of several studies. The evidence shows that the flu shot does not cause Bell's palsy or exacerbate asthma. Suggestions that vaccines can lead to these serious health problems have contributed to parental concerns about immunization for their children.

Establishing a cause-and-effect relationship between an agent and a health outcome requires solid evidence. The committee's conclusions are based on the strengths and weaknesses of several types of evidence, including biological, clinical, and epidemiological research. In many cases of suggested vaccine-related adverse outcomes, there is too little evidence, or the available evidence offers conflicting results or is otherwise inadequate to draw conclusions.

"With the start of the new school year, it's time to ensure that children are up to date on their immunizations, making this report's findings about the safety of these eight vaccines particularly timely," said committee chair Ellen Wright Clayton, professor of pediatrics and law, and director, Center for Biomedical Ethics and Society, Vanderbilt University, Nashville, Tenn. "The findings should be reassuring to parents that few health problems are clearly connected to immunizations, and these effects occur relatively rarely. And repeated study has made clear that some health problems are not caused by vaccines."

In accordance with its charge, the committee focused solely on findings about potential risks of immunizations. It did not examine information that would have allowed it to draw conclusions about the ratio of benefits to risks. However, the committee members noted that deaths and disability due to infectious diseases have been dramatically reduced over the last century since the majority of vaccines were developed and brought into widespread use.

The study was sponsored by the U.S. Department of Health and Human Services. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policymakers, health professionals, the private sector, and the public. The National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council make up the National Academies. For more information, visit http://national-academies.org or http://iom.edu. A committee roster follows.

Contacts:

Christine Stencel, Media Relations Officer

Luwam Yeibio, Media Relations Assistant

Office of News and Public Information

202-334-2138; e-mail news@nas.edu

Additional resources:

Full Report

Project Website

Report in Brief