Tuesday, January 23, 2018

Wandering and Autism: 6 Strategies to Prevent Wandering Behavior

Wandering and Autism: 6 Strategies to Prevent Wandering Behavior

Krupa Patel By Krupa Patel | 4/8/17 
Wandering or “elopement,” a common behavioral occurrence among children with Autism Spectrum Disorder (ASD), refers to the tendency to leave a safe, supervised space or caregiver and subsequently expose oneself to potential danger. Wandering is both tragic and terrifying for parents, given that drowning and wandering-related behaviors are the top causes of death in the ASD community (Rice et al., 2016). Although most of the reports of wandering have been anecdotal, the first major study on wandering by the American Academy of Pediatrics provides hard data on wandering and elopement among individuals with ASD.
This major report brings both awareness to the prevalence of wandering as well as key insights into specific wandering patterns. Based on the reports of a sample of approximately 600 parents of children with ASD, 49% reported that their child had attempted to wander at least once after they were 4 years old. Typically, the wandering behavior peaks at 5 years and the extent of wandering is related to the severity of ASD. Additionally, 26% of the overall sample, thus half of those who engaged in wandering, reported that those who wandered went missing long enough to cause concern. The most common location that children would wander from included their own home or other’s homes, stores, and classrooms (Anderson et al., 2012).
Clearly, wandering and elopement are quite common behaviors, but what drives children with ASD to wander? Most often, much of the wandering behavior appears goal-directed, where half of the parents reported that their children intended to specifically go somewhere or engage in an activity of interest. Children with autistic disorder or other ASD were more likely to elope because they want to reach a specific place they truly enjoyed or liked to explore, while children with Asperger disorder were reported to elope due to their desire to escape a stressful situation (Anderson et al., 2012). According to the Interactive Autism Network, over half of the children who wandered were “playful, happy or focused” while approximately 20% of the children were reported as “anxious or sad” (Law & Anderson, 2011). 
boy-wandering-autism.jpgDue to the severity and prevalence of wandering, the Center for Disease Control (CDC) approved wandering as a new medical diagnosis code in 2011. This official diagnosis may aid in  insurance coverages for safety equipment, such as tracking devices, locks and alarms, as well as accommodations for a student’s Individualized Education Program (IEP) in school settings. This medical code may also allow for better guidance from pediatricians to engage in dialogue with parents and provide measures to prevent wandering. Wandering is both stressful for caregivers and dangerous to children with ASD, but there are several tactics and strategies to eliminate wandering behavior. 

Here are 6 strategies to prevent and and respond to ASD wandering:

  1. Understand the goals: What is the goal of your child? Perhaps he or she is trying to reach a specific place or simply enjoys exploring. Understanding these wandering patterns could allow for strategies to prevent wandering while still allowing your child to engage in their desired activities in a safe space. Some of the typical motivators include “enjoys exploring,” “heads for favorite place,” and “escapes demands/anxiety” (Law & Anderson, 2011).
  1. Understand the triggers: What may be triggering them to leave? Addressing the triggers that may cause your child to wander can allow for methods to either remove the triggers or to work on coping strategies to handle the triggers.
  1. Security and tracking: If your child has a phone, there are several apps such as “Find my iPhone” that allow you to track them at any given them. There are also a number of kid-friendly tracking devices that are water-proof, which is important as wandering and drowning often occur together. Additionally, consider installing a home alarm system that alerts you any time the door or window opens.
  1. Teaching safety: Use visuals, stories or the type of language your child likes to inform them about the dangers of wandering. You could, for instance, print a Stop Sign or get red tape, and put it by your doors and windows. Additionally, teach your child different methods and strategies they should use in case they get lost. Approximately 35% of children who wander are rarely able to communicate their name, home address or phone number (Law & Anderson, 2011). Thus, be sure to either have your child carry proper identification or ensure they can communicate important information in order to get them home safely.
  1. School setting: If there is a history of wandering, it is important that the IEP addresses the behavior to better prepare for and respond to it. You may also engage in dialogue with the teachers, administrators and school leader to understand what sorts of security measures are already in place and what could be added in order to ensure the safety of your child during the school day.
  1. Enroll in swimming classes: As the leading cause of death among the ASD is drowning, enrolling in swimming classes is vital, especially those that practice swimming with clothes and shoes on. YMCA and other organizations offer swimming classes for children with ASD. Additionally, if you own a pool, be sure to secure it with proper fencing and gates.

Anderson, C., Law, J. K., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L., & Law, P. A. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics130(5), 870-877.
Law, P., & Anderson, C. (2011). IAN research report: elopement and wandering. Baltimore, MD: Kennedy Krieger Institute.
Rice, C. E., Zablotsky, B., Avila, R. M., Colpe, L. J., Schieve, L. A., Pringle, B., & Blumberg, S. J. (2016). Reported Wandering Behavior among Children with Autism Spectrum Disorder and/or Intellectual Disability. The Journal of pediatrics174, 232-239.
Krupa PatelKrupa Patel recently received her B.S. in Neuroscience from the University of Southern California and is currently a graduate student at the Harvard Graduate School of Education in the Mind, Brain and Education program. She has previously taught STEM in elementary classrooms and is an advocate for inclusive education. She has also worked at a nonprofit aimed at supporting individuals with mental illnesses in rural areas and de-stigmatizing mental illness. Her specific interests lie in the intersection between neuroscience and developmental disabilities and hopes to pursue a career in Pediatric Psychiatry or Neurology.

Monday, January 22, 2018

CHIP Extended for 6 Years – A Huge Relief but Long Overdue

by Joan Alker:

While a six-year extension is extremely welcome news for the millions of families who rely on CHIP for their child’s coverage, and for states who have been walking a tightrope for months now, the fact that it took so long should never be repeated. One state, Connecticut, actually closed enrollment for the week after Christmas, and a handful of others sent or posted notices about the possible loss of coverage. Never before has CHIP found itself in such chaos.

We will post additional blogs and reports unpacking the language but here are a few toplines – the deal extends CHIP through federal fiscal year 2023 and required no offsets or “payfors” because of a new CBO score post repeal of the individual mandate.  The current enhanced CHIP match rate continues “as is” for FFY18 and FFY19 and is then reduced by 11.5% in FFY20 (i.e. the enhancement is cut in half). In FFY21, states go back to CHIP’s regular match rate. Another important issue is the “maintenance of effort” which requires states to continue income eligibility levels that were in place as of the date of enactment of the ACA. This important provision which ensures that kids have a stable source of coverage remains, though states that are above 300% of the poverty line may roll coverage back to that level beginning in FFY 20.

Also, no offsets like those that were included in the House passed bill to take money out of the Public Health Prevention Fund were necessary due to CBO’s new scoring post repeal of the individual mandate. As my colleague Kelly Whitener blogged about, it would make more sense to do a ten-year extension which would actually save money. If Congress is feeling sensible, they could come back and add another four years.

Families have experienced needless anxiety. And we may see a chilling effect on enrollment from the many stories reporting on the expiration of CHIP funding not to mention states that sent notices about the possible loss of coverage. As one of my favorite CHIP directors once said, “Bad news travels fast.” We have been worrying all year that the combination of ACA repeal efforts and delays in funding CHIP may lead to fewer parents signing up their kids for coverage. Moreover, the current heightened fear of government being experienced in immigrant communities may also depress enrollment of children in “mixed-status” families – where a child is a citizen but the parent is not. All of this adds up to an “unwelcome mat” effect if you will, which may stagnate or reverse children’s coverage levels overall.

[1] There is an additional provision related to CHIP buy-ins that comes from the House passed version that we will talk about more in a future blog – we don’t think it is all that important because we believe that states could already do this…

originally posted here: https://ccf.georgetown.edu/2018/01/22/chip-extended-for-6-years-a-huge-relief-but-long-overdue/

Sickle Cell Statehouse Day January 29

Indianapolis; January 21, 2018: The Indiana Sickle Cell Consortium (ISCC) and its partners will be holding a “Sickle Cell Statehouse Day” on January 29, 2018. This event, the first of its kind in Indiana history, will be held from 11:00 A.M. until 2:00 P.M. in the Indiana Statehouse.

The purpose of the event is to raise legislators’ awareness of the plight of the more than 1,000 Indiana citizens who suffer from Sickle Cell Disease (“SCD”) and to seek additional funding and support. “SCD is a tremendously challenging illness for patients and providers alike. In addition to its
intense pain, it creates numerous psycho-social and economic problems that dramatically challenge the lives of patients and their families. Many of these problems don’t have easy solutions and SCD patients need more help than is currently available,” said Gary A. Gibson, President and CEO of Martin Center Sickle Cell Initiative (MCSCI), one of the consortium members.

SCD is one of the most common genetically transmitted diseases on Earth. Estimates indicate that there are 1,000 people who suffer from it in Indiana. It is carried mainly by people with origins in Africa, South and Central America, the Caribbean, and the Middle East. Although SCD is most commonly found in people of color, it also affects a small percentage of Caucasians.

The “Sickle Cell Statehouse Day” event will include an information table staffed with ISCC staff members, SCD patients and other stakeholders. “We will be speaking directly with legislators and members of the public about SCD and the many issues it brings. Our goal is to bring attention to the challenges that adult patients like me face and to inspire our lawmakers to find ways to help us improve our quality of life.” said Sharon Hatcher-Hutchinson, an adult Sickle Cell patient/advocate.

The Indiana Sickle Cell Consortium (ISCC) is comprised of Indiana healthcare providers and community based organizations who are committed to improving the lives of individuals affected by Sickle Cell Disease (SCD). The ISCC currently works with the Indiana State Department of Health to provide follow-up educational services to families whose newborns have been identified as having Sickle Cell Disease or Sickle Cell Trait. “Our work with ISDH is very important and they are a very good partner,” said Dr. Emily Meier of the Indiana Hemophilia and Thrombosis Center, another ISCC member organization. “However, the resources currently available through the state and ISDH are very limited. Indiana is doing well when it comes to the pediatric population, but we need more
help for adult patients,” she added. According to Meier, these services should include psycho-social counseling, occupational assistance and medical provider education.

The ISCC Sickle Cell Advocacy Day will feature brief remarks from ISCC members, State Representative Gregory Porter and SCD patients.

For more details about the Indiana Sickle Cell Consortium., please visit http://www.indianasicklecell.org.

Friday, January 19, 2018

Making Sense of Medical News

What to Believe?

  • Attention, parents: TV viewing can be harmful to kids!
  • Attention, parents: TV viewing is not harmful to your kids!
Which is right? Depending on which story you came across, either is correct — at least for a time. Researchers reported that young kids who watched a lot of television were prone to attention problems at school. But then 2 years later another study discounted that finding, concluding that kids with attention issues may, for a variety of reasons, simply watch more TV.
These conflicting headlines are just one example of how baffling medical news can be. What one study claims to be true may soon be disputed by another study. And with so many studies in the news and on the Internet, how do you know what's important, accurate, and relevant to your family's health?
The good news is you don't have to be a doctor or a scientist to sort it all out. There are some simple ways to evaluate what medical news means to your family. Then you can talk with your doctor about whether the news is relevant or appropriate as you make decisions about your child's health.

Medical Research vs. News Stories

There are some points to consider when reading or listening to a report on a health topic to help you decide whether to trust it and whether it applies to your family.
It takes a solid study to prove something substantial about health or treatments. And usually it takes years of many solid studies to confirm conclusions that doctors can stand behind in making decisions about health care for kids.
When you hear about a new medical development, the first questions to ask are: "Is it based on a scientific study?" and "What have the other studies of this issue shown?"
Many medical news reports rely on anecdotes — stories of people's experiences with a particular problem or treatment — rather than on documented findings.
Reporters often use personal stories to illustrate the impact that sensitive topics have on people. Personal stories are compelling, but by themselves they don't prove anything.
It's sometimes tough to tell the difference between news articles and advertisements. Ads can be designed to look like news. Check the fine print for the word "advertisement."
Websites often have names that sound authoritative, but are run by organizations or companies selling products. It's important to make sure that the sites you see are reliable.
Look for sites that are maintained by government agencies — they'll have .gov in their URL address — such as the Centers for Disease Control and Prevention (www.cdc.gov) and the National Institutes of Health (www.nih.gov), and by medical groups, such as the American Academy of Pediatrics (www.aap.org).

Studying the Studies

Knowing there's a study behind the news is only the first step. How the study was done and who did it also matter. Once you know that a study is the basis of the news report, consider these questions as you decide whether to trust it and whether it's important to your family.

Was the study done in people?

Many research findings involve work done in the lab, not in humans. These experiments help scientists study the possible effects of a treatment. But what happens in a test tube does not automatically translate into something useful that can be applied to people. Sometimes treatments work in lab animals, like mice, but don't pan out in people.

Who did the study involve?

Even if the study was done in people, it may not be meaningful for your family. For instance, studies involving only adults may not apply to kids — often, treatments that have been studied and proven safe and effective in adults haven't been tested in children. Medical research may present ethical and financial issues that can be barriers to studies involving children. Reports on medical research studies should include the characteristics of the participants — such as sex, age, and health status — and this can help you decide if the findings might be of interest to you.

What kind of study is it?

Researchers conduct studies in a number of ways. Prospective studies, many of which track thousands of people for years to see what factors — diet, vitamins, exercise, or other habits — affect health, tend to be more reliable than studies that ask patients to remember and report aspects of their health habits in the past.
Sometimes, researchers look back at medical records or death certificates or give out questionnaires to find out what people did in the past that might have put them at greater risk for some health condition, like heart disease or cancer. Those studies, called retrospective studies, can provide useful clues about diseases, but they are not definitive.
Randomized, controlled clinical trials are best at examining whether a treatment works. For example, in these kinds of trials, half of the participants might be randomly assigned to get a drug or other therapy, and half get a placebo (a pill with no effective ingredients or medications). These types of studies are typically "double-blinded," which means that neither the patients nor researchers know which participants receive the medications being tested and which receive the placebo.

Understanding the Numbers

How big was the study and how long did it last?

Some studies in the news involve just a handful of people. In general, you can have more confidence in the findings from studies that involve hundreds or thousands of participants.

What do the numbers mean?

Numbers can be confusing. And news reports often make medical conditions seem more common than they actually are. For example, a report may say that a certain factor may "double the risk" of getting a given condition. But if the risk goes from 1% to 2%, that's still small. On the flipside, a drug may cut the risk of getting a condition in half, but if the risk is low to begin with, taking the drug may not be worth it.
Consider numbers from different perspectives. A child who has a 5% chance of getting a disease has a 95% chance of not getting it.

Where are the results published?

Look for studies that are published in academic research journals such as the Journal of the American Medical AssociationPediatrics,and The New England Journal of Medicine. The groups that issue these journals carefully scrutinize studies before publishing them. That means you can usually trust what appears in them.
But the research that appears in the journals can get distorted in news reports. Reporters cramming complicated information into a short story may oversimplify and make findings seem more conclusive than they are. They also may fail to mention the treatment's downsides. If possible, look up the original source. Many journals can be read for free at local public libraries or online (where non-subscribers may be charged a fee).

Who funded the research?

A lot of research is funded by the federal government, particularly the National Institutes of Health (NIH). Government-sponsored studies are usually credible, since the researchers and the work that they do has to be carefully evaluated before they can get funding from the government for the study.
It's becoming more common for pharmaceutical companies and the makers of medical devices to fund clinical research. That doesn't mean the findings are tainted, but you should take the funding source into consideration. Medical journals list where the funding for a study came from. They also require researchers to disclose conflicts of interest, such as if one of the researchers who conducted the study owns stock in a company that could benefit from positive results.

How do the findings compare with previous studies?

Often, studies make the headlines because they tend to contradict conventional thinking. In truth, it's rare for a single study to be the final word.
Be especially cautious regarding studies whose conclusions are vastly different than the existing body of research. Most medical thinking emerges from conclusions drawn from many studies over time, and often there are contradictions along the way.

Acting on Medical News

Never diagnose your child or stop a medical treatment based on something in a news report. Instead, when you read or hear about a study that you think might affect your family's health, talk with your doctor.
Reviewed by: Steven Dowshen, MD
Date reviewed: June 2015

originally posted here: https://kidshealth.org/en/parents/medical-news.html?WT.ac=ctg#catdoctor

Thursday, January 18, 2018

FREE Self Guided Self Advocacy Training

young man smiles confidently toward you away from group of students at a student meeting
From Wisconsin Promise:
Self-advocacy means speaking up for yourself. It requires knowledge of your personal 
strengths and challenges, understanding of rights as a citizen, and acting in an assertive 
manner to make your needs known to others. During this self-guided program, you will explore
 concepts to help you become a better self-advocate and discover your potential.

Introduction (pre-test)

Introduction Video Link | Introduction Transcript > English | Spanish | Hmong | 

Chapter 1: Terms and Definitions

Chapter 1 Video Link | Chapter 1 Transcript > English | Spanish | Hmong | 

Chapter 2: Disability and Accommodations

Chapter 2 Video Link | Chapter 2 Transcript > English | Spanish | Hmong | 

Chapter 3: Careers

Chapter 3 Video Link | Chapter 3 Transcript > English | Spanish | Hmong | 

Chapter 4: Laws

Chapter 4 Video Link Part 1Part 2 | Chapter 4  Transcript > English Spanish | Hmong |

Chapter 5: School After High School

Chapter 5 Video Link Part 1Part 2| Chapter 5 Transcript > English Spanish | Hmong |  

Chapter 6: Talking About Disability

Chapter 6 Video Link | Chapter 6 Transcript > English Spanish | Hmong |  

Chapter 7: Resources

Chapter 7 Video Link | Chapter 7 Transcript > English Spanish | Hmong |  

originally posted here: https://promisewi.com/self-advocacy-training/

Wednesday, January 17, 2018

Family Voices Immigration Toolkit

The Family Voices Immigration Toolkit* is a collection of documents designed to inform, empower, and assist families of children and youth with special health care needs(CYSHCN) and the professionals who support them to prepare for the possibility of an emergent immigration situation and/or to collect supporting documentation that accurately reflects the extent of hardship on the health and well-being of a child with SHCN if s/he or the caregiver is detained or removed. (*This toolkit is not intended to be legal advice)

For Families

Tip Sheets (click document name to download)

CYSHCN Document Checklist.  This Tip Sheet is designed to assist families of CYSHCN who may be facing detention or removal collect all types of information and documents in a central location so that the care of the CYSHCN can continue seamlessly regardless of the emergent immigration situation. Spanish version here.
Childcare Options This Tip Sheet is a guide to inform and assist families in beginning very difficult conversations regarding what informal and formal childcare arrangements can be made for their children if they are detained temporarily or removed permanently from the U.S. Spanish version here.
Know Your Rights with ICE.  This Tip Sheet is designed to simply and clearly address the rights of families, and how they can exercise them, if they encounter immigration enforcement.

How to Choose a Doctor to Write a Letter in Support.  This Tip Sheet can help a family to sort through their own experiences and relationships to determine which physician or health professional will write the most informative and persuasive letter in support of their immigration case. Spanish version here.
Resources. Here are additional resources. These resources can help guide your family with discussions and decisions concerning immigration issues. These are not intended to be legal advice.
**NOTE: The above Tip Sheets can also be used by professionals. For example, use the Documentation checklist as a tool for educating an immigration attorney about the complex life of a CYSHCN and introduce them to the types of information and evidence that can be collected in support of the immigration claim.

Template Letter (click document name to download and modify for your needs)

Introductory letter to assist families with asking a physician or healthcare professional to write a letter in support of an immigration case.  Some families may fear or feel uncomfortable revealing immigration issues to physicians and asking them for assistance in the matters. Additionally, they may feel unsure as to what information is needed. Using this introductory letter and a physician template letter will simplify the process.

For Professionals

Tip Sheets (click to download)

How to Identify Immigration Status.  This is a searchable document that can be used to piece together someone’s status (i.e., you know some bits of information but still not sure what the legal status is) or when you want to know more about a status (i.e., whether there is permission accompanying the status).
How to Ask About Immigration Status When asked directly, some families may not feel comfortable sharing their status or may not know the details of their status. This Tip Sheet suggests safe and creative ways to ask questions that can be used to determine immigration status so that you can better support families.

Template Letters (click document name to download and modify for your needs)

Introductory letter to assist advocates or any other professional involved with CYSHCN with asking a physician or healthcare professional to write a letter in support of an immigration case.

Three types of template letters for Physician or healthcare professional to write in support of an immigration case. Most physicians want to write support letters but are unsure of what information to include. These templates enable physicians to detail complex medical information that provides the most evidence for an immigration case.
o Narrative:  This sample letter has both fill in the blank sections and prompts for the physician who wishes to write a narrative letter in support of the immigration matter.

o Long checklist/fill in the blank This letter is designed to be either completed by hand or online and simply requires a physician or healthcare professional to fill in the medical information that can be used to prove necessary elements of an immigration claim. Spanish version here.

Short checklist This is a less detailed version of the fill-in-the-blank template.

RCDC Fellowship Accepting Applications from Self Advocates

Founded in 1970, the Riley Child Development Center (RCDC) has served Indiana’s
children and their families for more than 40 years. The RCDC provides interdisciplinary
diagnosis, treatment and follow up of children from infancy to adulthood that have known or
suspected developmental delays, behavior and/or learning problems and stressful life
situations. The center is located at Riley Hospital for Children, and is a program of the IU
School of Medicine, Department of Pediatrics.

The RCDC is part of a national network of training programs that provide intensive
interdisciplinary assessment services funded by the Maternal and Child Health Bureau.
The center’s mission is to support the independence, productivity and integration into the
community of all citizens across the lifespan with neuro-developmental and related

Who is eligible for Training at the RCDC?

The RCDC offers practicum, internship; fellowship training for the students in the
following disciplines:
Audiology Nutrition
Child Psychiatry Occupational Therapy
Pediatric Dentistry Physical Therapy
Family Leadership Pediatrics
Health Administration Pediatric Neurology
Law & Ethics Psychology
Medical Genetics Social Work
Nursing Special Education
Speech / Language Pathology

About the Training

Trainees dedicate at least 300 hours within a 12-month period to a combination of learning,
research and leadership experience as related to children and youth who have
neurodevelopmental disabilities including Autism. Trainees attend monthly Leadership
Didactic Sessions during the academic year (August – April) on topics such as typical and
atypical child development. Beyond the didactic sessions, we have significant flexibility
around days or the weeks trainees meet those hours and the commitment. Some portion
of the hours can be fulfilled offsite. A small stipend is available for trainees in an effort to
support the commitment. Trainees, in partnership with their supervisor, develop an
individualized training plan with goals related to: clinical services (assessment, diagnosis, &
intervention), advocacy and public policy, research methods, and use of technology.

How to Apply

An application packet can be requested by contacting:
Sandi Owens
Riley Child Development Center
705 Riley Hospital Drive, Room 5837
Indianapolis, IN 46202-5225
317-944- 8167

Completed applications are reviewed by the Interdisciplinary Team. Candidates may be
contacted for an interview to discuss specific learning goals and possible match with the
RCDC Training Program.