Month: September 2018

Adjusting for Access: Reasonable Modifications in Policies, Practices, and Procedures

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It is important to understand the distinction between policies or practices that are themselves discriminatory, and policies which are neutral but which may need to be modified on a case-by-case basis.

Discriminatory policies are those that specifically exclude people because of disability and are often based on assumptions or generalizations.

Policies that are neutral, on the other hand, may need to be modified only on an individualized, as-needed basis in order to avoid unnecessarily denying opportunities to people with disabilities. The regulations for Title II and/or Title III address several specific examples:

  • Modifying “no pets” or “no animals” policies to allow individuals with disabilities who use service dogs, or in some cases miniature horses, to access public places;
  • Modifying “no vehicles,” “no coasting devices,” or “walk-only zone” policies to enable people with disabilities, in some circumstances, to use non-traditional mobility devices, such as golf carts or Segway® personal transporters;
  • Modify ticket sales and seating procedures for assigned-seat events in assembly areas such as arenas or performance venues, in order to help ensure that accessible seating locations are available for those who need them, and people can get information and purchase tickets for accessible seating the same ways tickets are purchased for other types of seating;
  • Modifying hotel reservation practices to ensure that individuals with disabilities can reserve available guest rooms with specific accessibility features, and be assured the specific rooms will be available upon arrival.

The fact that the regulations address these specific issues does not mean they are the only types of reasonable modifications that may be needed.

Estimated 2.5% of U.S. Kids Have Had TBI in Their Lifetime

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The lifetime prevalence of traumatic brain injury (TBI) among children age <17 years was an estimated 2.5%, based on parents’ reports of healthcare professionals’ diagnoses, an analysis of national survey data found.

This represents more than 1.8 million children nationally. Unlike previous estimates, it likely includes TBIs that were treated in settings other than emergency departments (EDs), reported Juliet Haarbauer-Krupa, PhD, of the CDC in Atlanta, and colleagues in JAMA Pediatrics.

cross the country, estimates of TBI ranged from an age-adjusted prevalence of 1.2% in Mississippi to 5.3% in Maine, with prevalence higher in states with higher estimates of private health insurance (OR 1.36) or parent-reported adequate insurance (OR 1.16). “This could result in a greater likelihood of seeking healthcare after TBI, which may lead to higher estimates of diagnosed TBIs,” Haarbauer-Krupa told MedPage Today.

But it “could also indicate that some childhood TBIs go untreated for lack of health insurance,” she observed.

The analysis also found that children with a lifetime history of TBI were more likely to have a variety of health and developmental conditions, compared with children without a history of TBI, including:

  • Learning disorders: 21.4%
  • Attention deficit-hyperactivity disorder: 20.5%
  • Speech/language problems: 18.6%
  • Developmental delay: 15.3%
  • Bone, joint, or muscle problems: 14.2%
  • Anxiety problems: 13.2%

“These findings support further inquiries about a child’s TBI and overall health history by healthcare providers to ensure optimal recovery and outcomes after childhood TBI,” Haarbauer-Krupa said.

Embracing The Needs Of Pregnant Women And Infants In Our Nation’s Battle Against The Opioid Crisis

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As a practicing neonatologist who routinely makes rounds at a local neonatal intensive care unit, I face the enormous challenge of treating infants born with symptoms of drug withdrawal. Caring for a newborn battling neonatal abstinence syndrome (NAS) is difficult, even for the most experienced physicians. These babies often look healthy when they are born, but within 72 hours begin to shake, cry inconsolably, and may have trouble feeding and digesting their food.

I have always felt that, while my specialty is treating newborns, I am caring for an entire family. This is especially true when it comes to treating NAS. Behind every baby born with withdrawal symptoms, there is a mother who needs ongoing support. I have seen the emotional strain NAS causes for mothers who are separated from their babies by medical equipment and are struggling to face what may feel like an uncertain future mothering a newborn and balancing recovery.

As the nation responds to the opioid crisis, we must account for everyone touched by this complex situation. This means leveraging interventions to serve mothers and their children at both the state and federal levels.

Opioid Use Disorder Exacts A High Toll On Women And Infants

Between 2015 and 2016, the rate of death from opioid overdoses increased nearly 20 percent among women – from 7.1 deaths per 100,000 to 8.5 per 100,000. For women who become mothers, misuse of these drugs can threaten the health and well-being of their babies. Since the late 1990s, opioid use disorder (OUD) during pregnancy has also increased. In fact, analysis of hospital discharge data found that the prevalence of OUD at delivery hospitalization more than quadrupled between 1999 and 2014. A recent article also found that the number of infants born with NAS increased from 1.5 cases per 1,000 hospital births in 2004 to 8.0 in 2014, a finding that aligns with the increasing prevalence of OUD among pregnant mothers. In the United States in 2015, one infant was born with NAS every 15 minutes.

Vascepa Prevents Major Cardiovascular Events, Says Manufacturer

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Top-line results from the closely watched REDUCE-IT trial are out, and they show that Amarin’s proprietary fish-oil drug Vascepa significantly reduced major cardiovascular (CV) events compared with placebo, the company announced.

“REDUCE-IT met its primary endpoint demonstrating an approximately 25% relative risk reduction, to a high degree of statistical significance (P<0.001), in major adverse CV events (MACE) in the intent-to-treat patient population with use of Vascepa 4 grams/day as compared to placebo,” Amarin’s press release said.

Amarin’s statement crowed that the “results stand alone as positive” in comparison with other trials of fish oil products. It did not name the ASCEND trial specifically, reported last month at the European Society of Cardiology meeting, which found no outcomes benefit from 1 g/day of omega-3 fatty acids in diabetes patients. (The dosage in that trial came under criticism, however.) Other placebo-controlled fish-oil trials had also failed to demonstrate clinical benefits.

Vascepa is notable in one other respect: it was the focus of a major court battle that Amarin had waged against the FDA over the company’s efforts to talk up the product with physicians, even though marketing claims for event prevention had not gotten the agency’s approval. After Amarin won two rounds in federal court, the FDA agreed in early 2016 to modify its policies on off-label promotion (although it still hasn’t issued new regulations), while Amarin promised to complete REDUCE-IT and release its results.

Mummy of paraplegic child shows how Peru’s Nasca culture treated disability

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The builders of the Nasca Lines cared for their sick, even when times got tough.

Most Peruvian mummies come bundled in cloth, with their legs folded up to their chests and their arms around their knees. But the young boy we now know only as the Nasca Boy was buried in a position he probably occupied in life: on a contoured, cushioned adobe stool, with his lower legs tucked beneath his seat. It’s the only burial of its kind that archaeologists have ever seen, and it immediately suggests two very important things about this child: he lived with a disability that would have required additional care and resources, and he was well cared for and valued by the people around him, even during a period of their history when food was scarce and life was uncertain.

That’s the conclusion of a new study, which revisits the original 1973 research on the mummified remains of the young boy, who died around 700 CE. The original archaeologists, led by the late Marvin Allison, focused on identifying evidence of tuberculosis in the boy’s remains; they provided the first evidence that the disease had stalked South American populations long before Europeans arrived.

Archaeologist Lorna Tilley and her colleagues have taken a second look at that study in an effort to reconstruct details of the child’s experience with his illness and disability, the kind of care he probably received, and what that reveals about the culture in which he lived. “I rely on taking the information available from the work of other archaeologists and synthesizing it, hoping that I’ve understood their research results and providing copious references so that readers can go to the sources themselves,” Tilley told Ars Technica.

An autopsy in the early 1970s found evidence of tuberculosis infection in the Nasca Boy’s spine, a condition called Pott’s Disease. Allison and his colleagues suggested that the child’s ordeal began as a mild respiratory infection when the boy was a year or two old. Tuberculosis bacteria in his bloodstream must have spread to his spine, where it eventually left a 5cm-wide abscess in his lower spine, having eaten away at several vertebrae and the discs between them.

Allison and his colleagues also found lesions (called tubercles) and Mycobacterium tuberculosisbacteria in the boy’s lungs, heart, liver, and right kidney. This widespread infection, called miliary tuberculosis, may have spread through his bloodstream from the abscess in his spine, and it probably killed him within weeks.

The Nasca Boy probably lived with Pott’s disease for a few years before losing mobility in his legs, and it would have taken a heavy toll on his early childhood, forcing him to live with back and chest pain, fevers, weight loss, and fatigue. It’s likely that he would never have been able to keep up with his peers, either at play or in the work often expected of children in agricultural communities. Tilley and her colleagues compared the Nasca Boy’s case to studies of modern children facing chronic disease, and they speculate that he may also have dealt with depression, anxiety, and grief.

A child with such an illness would have needed additional care and support from his family members—sick children need to be comforted when they’re in pain, cooled when they’re feverish, and probably coaxed to eat.

When Pott’s disease left him immobilized, the Nasca Boy would have required an even higher level of care: help with bathing and personal hygiene, frequent massages and repositioning to help with circulation, and much closer supervision to make sure he was safe, hydrated, and getting enough nutrition. “Without massaging, repositioning, constant hygiene monitoring and maintenance, pressure sores are inevitable when a subject is immobilized, and if left untreated rapidly become infected,” Tilley told Ars Technica. “Similarly, when someone is effectively immobilized, their circulatory and respiratory (as well as other!) systems are very rapidly compromised.”

The fact that the Nasca Boy survived eight to ten years with such a serious illness is proof that he received the care he needed, and it seems he was cared for well; his skin, preserved by natural mummification for nearly 1,300 years, shows no sign of bedsores, which means he likely benefited from good hygiene and frequent position changes. And the stool itself tells a story.

“The stool speaks of an understanding and acceptance of the Nasca Boy’s needs and of the readiness to work around them,” wrote Tilley and her colleagues.

Money and the Civic Impulse

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When you enter the storefront office of a neighborhood organization in Montreal, the first thing you see is a large sign:

MONEY
Do we really need it?
Do we have it here?
What can we trade for it?
Must we beg for it?

The Chairperson of this neighborhood organization explained that the sign is an attempt to remedy their “grant dependency.” This dependency had once led the group to believe that if they wanted to get anything done, they first needed a grant. The hidden assumption became that without outside money, their citizens’ organization was impotent.

As a result of this dependency, the leadership developed the four criteria on the sign. It became the group’s guide to a new understanding of the resources necessary to get things done.

The first question asks whether the group’s goal could be achieved without money. Is there a combination of local civic resources that, if connected and mobilized, could achieve the goal?

The second question asks whether the residents and local merchants might have the money that is needed? One measure of the authenticity of a local neighborhood organization is whether local citizens and their enterprises will financially support the neighborhood group’s activities.

The third question asks whether there is something the neighborhood could create or produce that would be valued enough that outside money might invest in it. It recognizes that when the neighborhood people are “first investors,” the outside money is secondary while the second investor/funder has increased security that their money will be productive.

The fourth question is intentionally stark: Must we be a beggar? The blunt phraseology is designed to push back against a “grants mentality.” It makes clear that the last resort of a group of citizens is to act like a client. The word client comes from the Latin cliens, a person who is a follower, a retainer or dependent.

The Montreal group recognizes that there can be many ways to immobilize citizen engagement and one of the most powerful can be outside money, even that purported to be available for citizen engagement.

 

 

Illness as Narrative: On Sarah Fawn Montgomery’s ‘Quite Mad’

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In her debut full-length memoir, Quite Mad, Sarah Fawn Montgomery details the many struggles and blessings of living with a mental disorder. Since being diagnosed with anxiety, PTSD, and OCD as a young woman, Montgomery has undertaken a journey to live more comfortably with those aspects of herself, pursuing different avenues of healing, many of them pharmaceutical in nature. In the process, she deconstructs the factors of her condition, examining her family history, stressors in her unorthodox childhood, and traumas in her adulthood. In conjunction with exploring her own illness narrative, she examines the often neglected challenges of mental disorders from a broader perspective, addressing stigma, lack of medical help, representation in the media, and the difficulty of remembering after trauma. In speaking outside herself, Montgomery brings in outside sources, statistics, and the history of the psychiatric field, creating a sweeping view of mental illness. It is an ambitious work that extends outside the speaker to address the state of the mental healthcare system in America as a whole.

Perhaps because of her background in writing, Montgomery discusses at length the narratives we construct and the rhetoric we use to describe madness. Reminiscent of Susan Sontag’s Illness as Metaphor, Montgomery critiques such seemingly harmless colloquialisms as calling something “crazy” or claiming one has OCD when one is particular about order or cleanliness. This language serves to both stigmatize and minimize the reality of mental illness, generating stock images of what each condition looks like based entirely on public expectation. Montgomery is a writer and academic who is analytical in her approach to her own history, and she writes with an appreciation of nuance, exploring the gray areas and contradictions of mental illness.

Hyperlocal social networking – when Nextdoor matters most

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It’s that awful time – the hurricane season.  The time when the national hurricane center repeated forecasts, repeated ad nauseum, are destined to frighten everyone, no matter how far from affected regions. The same broadcast can dwell on cones and paths, and almost as an aside, remind those in beach areas that the evacuation instructions are meant for them.  Reversing highway direction and talking constantly about evacuation sounds like a plan – but some observe that the distance required to evacuate to safety could be as much as 250-300 miles. So residents who will ‘shelter in place’ stock up on supplies and watch the 24-hour source of all fear – cable news, looking for guidance from Jim Cantore, that icon among storm trackers.

What people need most may be hyperlocal.  And that’s where Nextdoor has opened up a communication channel that has ripened into a neighborhood bulletin board in calm times, and an emergency beacon, street-by-street, during stormy weather.  With 137,000 neighborhood groups (at least), with rules enforcing a a ‘culture of civility’,  facilitated by local moderators that step in when commentary is edgy. Imagine that – a culture of civility. Maybe 50 people are discussing a found dog – and who will adopt. Or they need help in setting up in home equipment or are selling furniture. The ads are also local – so realtors, stores, and service providers all can pay to reach those within their locale.

Back at the hurricane watch. Nextdoor neighborhoods in impacted areas have been ramping up.  Advisories, governor notices, evacuation sites and instructions are included in news sites and papers —  these will migrate onto Nextdoor as local neighborhood members incorporate new content. Even sizable cities like Peoria are on Nextdoor – so that city managers can get the word out.  Though to get the truly local info, street address is required.  As hurricane Irma demonstrated in Florida, when it is time to put the hurricane shutters on, there are neighbors on Nextdoor willing to do it — for free and right before the storm is expected to arrive.

Nextdoor users are Internet users. Duh.  But that can be a problem for the elderly – Pew claims that only 66% of the 65+ population are on the Internet.  Even if their statistics are aging since February, full adoption has yet to happen.  No surprise there – consider the list of basic requirements – note who is not online by income.  Also consider broadband availability, router, WiFi, and support for more than one device in the home (more Pew: PC/Mac, iPhone, tablets, Android phones, printer – and not counting the voice devices that may populate later.)  Each year the percentages of seniors online increase. Also increasing — the potential role of the Internet in mitigating social isolation among the elderly. So let’s hope that when the weather deteriorates on the street where they live — that they have discovered Nextdoor.

DISASTER MANAGEMENT APPS: 9 FEATURES THAT SAVE LIVES

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When disaster strikes, apps save lives. We’ve experienced the social impact disaster management apps can have first hand through our work with The Red Cross. Here are the top nine features that we believe can make mobile apps help during a crisis.

The Red Cross Emergency app.

Emergency developed by 3 Sided Cube for The Red Cross is a disaster management platform that was put to the test during Hurricane Harvey and Irma late last year. Together the storms caused the worst flooding disaster in U.S history. But thanks to the Red Cross, many lives were saved through relief workers, shelters and the Emergency app that people were relying on.

As the hurricane hit, people were using the app to track the storm, get alerts if they were in danger, and plan evacuation routes in worst-case scenarios. To put things into perspective, the app had 75 million server requests for emergency information during the hurricane.

(L)ife-saving features:

Feature 1) Prepare users with advice beforehand

How do you prepare for a disaster?

Feature 2) Maps to track hazards in real-time

How do you track disasters?

Feature 3) Evacuation and safety planning

What’s the best way to plan an evacuation?

Feature 4) Location monitoring and hazard alerts

How do you know that disaster is about to strike?

Feature 5) Location sharing and safety notifications

Making sure your family is safe.

Feature 6) Resilience and reliability

How do you make sure your app doesn’t crash?

Feature 8) People power and hazard alert sharing

People are your biggest asset!

Feature 9) Make external data reliable and useful

Which data sources should you use?

 

What Is HIPAA’s Role In Disaster Recovery?

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What happens to your organization in the event of an emergency? If your infrastructure fails due to a natural disaster, how will you ensure business continuity? If there’s a data breach, what’s your response plan?

These are all questions you need to answer, no matter what industry you work in. As our world becomes increasingly digitized, the need for checks and balances to keep our organizations up and running in a disaster have grown more important than ever. Nowhere is that truer than in the healthcare field.

Yours is an industry where consistent access to patient data could be the difference between life and death. A field where the information you work with is of the most sensitive, most critical nature. A vertical that deals with some of the most intimate parts of its patients’ lives.

This is precisely why regulations like HIPAA exist. And it’s also why HIPAA includes a strict set of guidelines pertaining to disaster recovery. Per HIPAA guidelines, healthcare organizations and covered entities must develop and implement plans for:

  • Disaster recovery
  • Data backup
  • Emergency mode operations
  • Testing and revision procedures
  • Determining which applications and data are critical for operations

You have a duty of care to ensure that patients are in no way compromised during downtime, and that the security and integrity of their data are never put at risk. Fortunately, so long as you follow the guidelines established in HIPAA, it should not be terribly difficult to establish the policies and procedures necessary to make this so. To that end, you should take the following steps:

  1. Figure out which ePHI needs to be backed up and protected, and where it is located.
  2. Determine the method you will use to back up that data, where the backups will be situated, and how you will secure them.
  3. Determine how frequently those backups will be stored, and how those backups will be replicated.
  4. Determine the risks your organization is likeliest to face and create a distinctive plan for each threat. In addition, we’d advise also putting together a general response and recovery plan that can come into play when you face an emergency you did not expect. For each plan…
    1. Establish roles and responsibilities for all staff in the event of an emergency, and ensure the proper infrastructure is in place to keep workers in contact with one another during a crisis.
    2. Create documentation of all policies, processes, roles, and responsibilities. Ensure this documentation is readily available to all staff, and that it is regularly reviewed by your organization.
    3. Determine how your organization will ensure the confidentiality and integrity of critical infrastructure and data during an emergency, as well as what systems should be prioritized during restoration.
    4. Implement procedures for regular testing of disaster recovery processes – drills, training programs, and reminders for staff.

There is no other way to say it. Disaster recovery is as much a part of HIPAA as confidentiality and privacy. If you do not have clear contingencies in place to protect your systems, people, and data in an emergency, you are not compliant.