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 ( and the National Institutes of Health (, and by medical groups, such as the American Academy of Pediatrics (

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:

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:

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.

Tuesday, January 16, 2018

Essential for Parenting Toddlers and Preschoolers

Essentials for Parenting Toddlers and Preschoolers is a free, online resource developed by the Centers for Disease Control and Prevention (CDC). Designed for parents of 2 to 4 year olds, Essentials for Parenting addresses common parenting challenges, like tantrums and whining. The purpose of the resource is to provide as much information as possible on things you can do to build a positive, healthy relationship. Skills focus on encouraging good behavior and decreasing misbehavior using proven strategies like positive communication, structure and rules, clear directions, and consistent discipline and consequences.
Essentials for Parenting includes:
  • Articles with a variety of skills, tips, and techniques
  • “Frequently Asked Questions” answered by parenting experts
  • Fun and engaging videos featuring parents, children, and parenting experts who demonstrate and discuss skills
  • Free print resources like chore charts and daily schedules
Essentials for Parenting is based on:
  • Decades of research and practical parenting experience suggesting that certain skills are useful in building a positive relationship and in handling children’s challenging behaviors.
  • Research conducted by CDC over the last 5 years about the types of questions parents have, where and how they look for information, and how they want to receive information.

All Families are Not Alike

We know that every child and every parent is unique. You face many different situations and challenges every day. We don’t take a one-size-fits-all approach or think of this as a set of strict parenting rules that must be followed. We hope to give you new ideas for parenting so you can make the best decisions about what can work with your child and family.

Friday, January 12, 2018

Legislative Update

The Arc of Indiana
Legislative Memo
January 12, 2018

The Indiana General Assembly ended its first full week of work with many committee hearings and mostly the dropping of bills lists. We are still waiting for all filed bills to be made public and we expect that to take place early next week. As a reminder, this session is a short session set to adjourn by statute on March 14. The Arc of Indiana has already started reading and tracking bills and will keep you updated as bills of interest to people with intellectual and developmental disabilities are released. 

Governor Eric Holcomb provided his second State of the State address this week. Workforce issues were the first item he addressed. As the Governor laid out his goals it was clear that people with
disabilities could play a huge role in meeting his objectives. We will be talking to his office and others in his administration to share our thoughts about his employment agenda and make sure they are thinking about people with disabilities as they put forth new programs.

Action Needed NOW on SB 355
Licensure of Behavior Analysts authored by Senator Dennis Kruse (R-Auburn)

Provides for licensure of behavior analysts and assistant behavior analysts. Specified requirements for a license. Sets forth exemptions and makes conforming amendments.
This bill was drafted at the request of The Arc of Indiana and professional behavior analysts groups. Although national certification is already available and well used, there is no discipline measures to be taken for the families who have concerns about the Applied Behavior Analysis (ABA) services they receive or by whom they receive them. The primary need for licensure is consumer protection and state oversight of clinical practitioners providing health care services. The national board does not have the resources to respond to ethical violations therefore states need to establish strategies to protect consumers and licensure does that.
Now is the time if you utilize ABA services to contact your state senator and urge him or her to vote Yes for this bill.
Explain how ABA services has impacted your life and the need to make sure only those who are qualified are delivering this important service.
The bill should be get a committee hearing in the next two weeks. Member of the Commerce and Technology Committee can be found here: Contact them and urge them to support the bill in committee.

HB 1001 -  K-12 Funding Appropriations
HB 1002 - Reorganization of Workforce Funding and Programs
HB 1003 - Agency Reporting Requirements
HB 1007 - Health and Human Services and Insurance Matters
HB 1017 - Newborn Screening for Spinal Muscular Atrophy
HB 1042 - Early Childhood Education
HB 1043 - Expanded Criminal History Checks
HB 1059 - Professional Licensing Agency
HB 1080 - Central Indiana Public transportation Projects
HB 1117 - Nursing Facility Medicaid Reimbursement Rates
HB 1120 - State Department of Health Matters
HB 1123 - Transfers to Caregivers
HB 1130 - Professional Licensing Agency Matters
HB 1141 - Community Mental Health Center Funding
HB 1143 - Prior Authorization for Health Care Services
HB 1145 - Health Insurance Coverage and Cost Information
HB 1157 - End of Life Options
HB 1166 - teacher Evaluations
HB 1196 - Provider Diagnostic Information Release
HB 1202 - Charity gaming Operations
HB 1206 - SNAP Benefits
HB 1208 - School Discipline
HB 1220 - FSSA Matters
HB 1264 - Competency Based High School Education
HB 1341 - Autonomous Vehicles
SB 11 - Eligibility for Supplemental Nutrition Assistance
SB 15 - Worker Career Enhancement tax Credit
Sb 29 - Prekindergarten Pilot Program Eligibility
SB 62 - Hospices and Medicaid
SB 117 - Limits on Expulsions and Long Term Suspensions
SB 121 - Minimum Wage
SB 133 - Individual Education Program Students
SB 136 - Workforce Ready Grant
SB 157 - Real World Career Readiness Program
SB 177 -- The Indiana High School Diploma
SB 189 - K-12 Funding
SB 192 - Traumatic Brain Injury Information
SB 205 - School Choice Scholarships
SB 217 - Dyslexia
SB 220 - Reading Assessments
SB 223 - Health Professional License Renewal Surveys
SB 224 - Behavioral Health and Human Services Licensing
SB 240 - Service Animals
SB 254 - Economic Development Incentive Accountability
SB 255 - Mental Health Education and Screenings
SB 271 - Bias Crimes
SB 282 - Workforce Development Matters
SB 297 - Employability skills Curriculum
SB 301 - Criminal History Checks for Home Health Workers
SB 303 - Various Education Matters
SB 308 - Minimum Wage
SB 322 - Lead Poisoning Children
SB 350 - Various Education Matters
SB 363 - FSSA Matters
SB 378 - Medicaid Based Statewide Health Plan
SB 397 - Community Mental Health Centers
SB 418 - Bias Motivated Crimes
SB 421 - Assisted Living Services

SCR2 - Urging the United States Congress to Amend the Every Student Succeeds Act to Remove the "Preponderance of Students" Language from its Section 8101(43) Definition of Regular High School Diploma.
Committee hearings at the State House can be viewed online. Go to click on "Watch Live," Click on "House" or "Senate" and then click on the room in which the bill is being heard.
The 1102 Task Force created last session in HEA 1102 to do an assessment of services and supports for people with intellectual or developmental disabilities has met twice already and their third meeting is scheduled for Friday, February 23rd in Boonville, Indiana. The agenda for the third meeting will be to discuss the current system and the services being offered.

Please remember that time is allowed at the beginning of each meeting for public comment. Please attend to share your thoughts on what is working and what could be a better way to
deliver services and supports

How to Shop for Health Insurance

In America today, we all need health insurance. You do. Your kids do. It's not a "nice to have" anymore — it's a "must-have." And that's the law. In most cases, parents who aren't covered (or don't have their kids covered) by health insurance might have to pay a fine each year. Going without also means that if someone gets sick or is injured, a family might have to pay all the bills for care received. That can cost a whole lot more than paying for coverage.
To help people get health insurance, the federal and state governments set up a health insurance marketplace (also called the health care exchange). This makes it easier than ever to get coverage, but the process can seem a bit confusing.
Here's what to do to get health insurance.

Getting Started

Before you look for a health insurance plan, check to see if you or your child can get coverage some other way. The government considers a person covered if they have Medicare, Medicaid, a state-run child health insurance plan (CHIP), or insurance they get through a parent or spouse's job. Your child could already be covered by or be eligible for free or low-cost coverage through a public program.
If you need to get insurance for yourself or your child, you can go online and visit the U.S. Government's comprehensive health care website ( There, you can apply for CHIP or Medicaid or shop for a plan.
It's important to remember, however, that you can only buy insurance through the health care marketplace during the open enrollment period, which begins in mid-November and lasts until February. If the enrollment period is over, you or your child may have to get insurance through a private insurer to be covered for that year.
In some states, the health care exchange is run by Other states run it themselves. If you live in one of those states, you can visit your state's official marketplace website directly or link to it through
If you don't have regular access to a computer, you can call the U.S. Government's help line at 1-800-318-2596 to fill out an application, enroll, or compare plans.

How to Apply for a Plan

Applying for an insurance plan through the health care marketplace can be done online through or a state site, over the phone, or through regular mail by filling out a form that can be mailed to you or downloaded from the Internet.
Before you fill out an online application, you'll need to create an account on either or your state's marketplace.
You'll need to know a few things about each person applying for coverage. Be ready to provide:
  • Social Security numbers (or document numbers for legal immigrants)
  • information about employers and income
  • policy numbers for any current health insurance plans
If you have a job that offers health insurance but you're not happy with it, you can choose to get coverage through instead. But before you apply, you'll need to fill out a form called an Employer Coverage Tool that can be found on the website.
The application will ask for standard information like your name, your child's name, your address, phone number, and email. You'll need to answer questions about citizenship, dependents, and whether you plan to file a federal income tax return the following year.
If you want help paying for insurance, you will have to provide information about your yearly income (and the income of anyone else applying for coverage). This includes income from jobs and other sources like:
  • Social Security
  • unemployment
  • retirement accounts
  • property rental
  • alimony
If you pay alimony or interest on student loans, you can deduct the amount you pay when you fill out your application.

What Happens Next?

Once you've submitted an application, or your state's site will determine if you or your children qualify for Medicare, Medicaid, or CHIP. It will also determine if you or your children are eligible to get insurance through the health care marketplace. For most people, if you're an American citizen or legal immigrant and you're not in jail, you'll be eligible.
Although it's unlikely, sometimes parents are eligible to buy insurance through the health care marketplace but their children aren't. Sometimes kids are eligible but their parents aren't. If either of these apply to you, you would have the right to appeal the decision, and you could still get private insurance for anyone needing coverage.
If you're eligible for coverage but don't qualify for any publicly subsidized programs, the health care marketplace will present you with the insurance plans available in your state based on your income and family situation. It will be up to you to decide which policy to buy.

What to Look for When Choosing a Policy

The important words to remember when shopping for a policy are "premium" and "deductible." The premium is the amount you pay each month for coverage. The deductible is the amount you need to pay each year for medical services before your health insurance kicks in. As a general rule, insurance plans with low premiums have high deductibles, and plans with high premiums have low deductibles.
These are the basic levels of coverage:
  • Catastrophic insurance is designed to protect an otherwise healthy person in the event of a major injury or illness. It's available only to people under age 30 and those who are exempt from other plans due to hardship. This type of insurance can have low premiums but very high deductibles. Plans generally cover less than 60% of the costs of health care.
  • Bronze plans also have low premiums and high deductibles, but they offer better coverage than catastrophic insurance, typically paying for 60% of costs.
  • Silver plans and gold plans have average-sized premiums and average-sized deductibles. Silver plans cover 70% of costs. Gold plans pay 80% of costs.
  • Platinum plans, the highest level of coverage, have high premiums and low deductibles. These plans cover 90% or more of health care costs.
All catastrophic, bronze, silver, gold, and platinum plans offer free or discounted visits to the doctor for things like routine checkups or vaccinations and some preventive care. Most plans also offer discounts on prescription drugs and other services. Specific benefits differ from plan to plan, though, so you'll need to learn what each plan offers. Think about what's important to you and your family and make a decision based on how well the plan meets your needs.

When Can I Start Using My Insurance?

Once you've signed up for a plan and paid the first month's premium, you or your child can start using the insurance. The insurance company should send you and everyone covered by your policy insurance cards with your policy number and other information. If you or your child need to see a doctor or go to a hospital before you receive your card, call your insurance company first to make sure your family has been entered into their system.
You should also make sure that any doctor you choose for you or your child is in your insurance plan's network. A network is made up of doctors, specialists, and other health care providers who have agreed to work with your insurance company when it comes to payments and services. If you take your child to a doctor who isn't in your plan's network, you may have to pay full price for some services.
Ask around and learn what you can about the primary care physicians in your plan's network, and then choose a doctor you like. Once you've done that, schedule checkups and use your insurance to help keep your family healthy.
Date reviewed: September 2014
originally posted here: